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J-Pouch ForumsGeneral Discussion
20 years trial error this is what I suggest
F FRH
FRH Mary. Not sure you will see this. Cranberry juice apple juice and anything that has citric acid is really acidic. I would stick to water but like I said there is a balance. Too much liquid quickens transit time. If I do eat chicken I steam it (salt or Italian seasonings only). Small bites. Chew well. Cream sauce or similar non spicy sauce is good) if you add mushrooms chew very well. Mushrooms corn poocorn Can block. Chew food well. Smaller more frequent meals better than large ones. I will... [ more ]
Scott F Grape juice or cranberry juice will tend to work about as well as water for hydration. Most blockages are not caused by anything related to hydration, though, so we may have allowed this conversation to go off the rails. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Thinking about a J-Pouch
J JPouchWannabe
Mary2017 Your welcome. I hope you can update us when you can, would love to hear your update [ more ]
JPouchWannabe Thanks for your in put. All of your experiences help!! [ more ]
Mysticobra I never had an end prior to my J pouch. I had a temporary while everything was healing. During the process I had to have emergency surgery and while she was in there she took down the temporary ileo and hooked my pouch up. It happened pretty fast. Less than a month. I think back and maybe not hooking me up that soon may have or may not have been the problem. Probably not. I had a healthy J pouch. It just never worked. We don't know why. So I was just sick as a dog with the pouch and had it... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn’s Disease in Jpouch
A AL77
Mary2017 Okay, just remember that doctors dont always know everything and its important to trust yourself on what you feel is best for you as well. I try to always follow that inner voice I have and its been a great help for me. Listen to that inner voice. [ more ]
Mary2017 Yeah I mean that I think you are a perfect match for the person that wrote this post just in case they get in your situation too. Sorry the j-pouch did not work out for you! And sorry you have Crohns I hope the ostomy will be great for you like it is for me [ more ]
AL77 I’ll see how the Infliximab infusions go and listen to my doctors on what they think my success rate will be if I reconnect to the jpouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Does water actually dehydrate us?
PouchomarxPouchomarx
Pouchomarx i pretty much always urinate when i poop which is several times a day. I have peed standing up before but i tend to clinch so i dont have an accident because if i relax too much trying to pee i might poop..lol. so i just pee whats in the bladder when i sit to poop [ more ]
Jan Dollar Poucho, I think you are taking the kidney doc’s instructions too literally. When they say water, they mean fluids. So that includes all fluids, except maybe milk, which is more of a mixed bag. Milk is also considered a food because of its high protein content, so it does add to your kidney “work.” You basically need to be sure your urine is dilute and that you fill and empty your bladder several times a day. That is the best way to determine your hydration level. Jan [ more ]
SteveG If you drink too much water that is poor in minerals (or even distilled) that can draw minerals from your body and harm you that way. But you would have to drink lots of liters and really overdo it to get there. Did you add all kinds of drinks (tea, coffee, ...) to your daily intake of 1 liter? That would be very little. I like to add a little bit of fruit juice to my water, that makes it more tasty and helps me to drink enough. I think it's about 2 liters a day in winter and up to 1 liter... [ more ]
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J-Pouch ForumsGeneral Discussion
Digestive Enzymes: some results!
SM Sara Marie
Mary2017 Oh good! I am happy you emailed the doctor, I hope he gets back in touch with you. Honestly calling may be better, but you know your doctor more than I do. Oh good, with OPC, how often is that? Perfect! I am glad your dating entries, I was not sure if everyone dates their entries- I think its important to date them so you can see how far you have come for sure. I am glad you are doing that! Where do you keep your journals? Bookshelf? And it sounds very peaceful to journal while drinking tea... [ more ]
Sara Marie I just emailed the doctor this morning and I haven't heard back yet, but I hope I will soon! This conversation helped me remember to do that, so thank you! I guess I think of myself as having quit cigarettes since it's not habitual. I used to have them around all the time and smoke them every day and that's when I thought of myself as a smoker. Now I don't keep them in the house. If I smoke, it's strictly OPC (other people's cigarettes). I date the entries. I thought that was mandatory with... [ more ]
Mary2017 ❤️
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J-Pouch ForumsGeneral Discussion
And the answer is ... rectocele and cystocele!
S SeattleJane
Pouch2021 I’m a bit confused. I had a rectocele but it went away when I had my rectum removed and pouch created. Jane and Jan, do you mean you have an out-pouching or weakness in your J pouch wall that protrudes vaginally? I also have a cyctocele and tried a pessary but it was not compatible with the pouch—the pessary compressed the pouch even further which would have made it impossible to empty. Jane, you will usually need a urogynecologist for cystocele management, not a general gyn. @Mary2017 7... [ more ]
Jan Dollar Jane, I am glad you are finally getting some pieces to your puzzle. Sure, it is not a cure, but some insight goes a long way to reducing frustration. At least it is nice to know you are not crazy. Hope your holidays are pleasant and full of hope! Jan [ more ]
FRH cystocele is a little different than rectocele. My rectocele is more the issue for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and Wegovy/Ozempic
J juliemk3
lclassen I’m on Mounjaro as well. My “normal” with my pouch was always soft and runny so the Mounjaro is helping with that 😅. I agree that lots of water and protein are important. Good luck on your journey! [ more ]
Shawn G Thank you so much. I have had a blockage a few times & they had to open me up to cut away the adhesions but haven’t had any problems with those since 2019, thank goodness. I guess I have been quite lucky with my surgery. I have heard so horror stories. thanks for the advice shawn [ more ]
jcoach Shawn G, Im Type 2 diabetic with pouch. After checking with my surgeon who said there wasn’t a lot of data to go on in this area. He advised me that if I was to try it, to be sure to start at lowest dose and go very slowly regarding any titration. I was told constipation tends to be one of the more common side effects and if it’s mild I can take Mirolax or a few Colace gummies occasionally if needed. But if it becomes a common problem to stop the medication as to not take the chance of... [ more ]
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J-Pouch ForumsGeneral Discussion
Loop Ileostomy and End Ileostomy
A AL77
Mary2017 I hope you can let us know what happens in 2 weeks. I hope your story has a good ending. Best of luck [ more ]
AL77 Wow, me too. I am dealing with the same problem. I have 3 setons in me since August. My surgeon says I have perianal Crohn’s Disease. My bottom has healed since I was diverted. In a couple of weeks I have to go back to see him, he said he will be doing some kind of minor surgery down there don’t know exactly what, maybe some tissue repair, I don’t think he is removing the setons right now, I have to continue the Infliximab infusions. Down the road I may be able to reconnect to my jpouch but... [ more ]
LORI726 I kept having problems with perianal fistulas. I am a pharmacist and I lost faith in the drugs. After I developed antibodies to remicade, nothing else seemed to work for me. There are a whole bunch of new medications out there so maybe something would have worked. I was just tired of being a patient and I found it extremely stressful not knowing if/when I would end up with a perianal abscess from the fistulas developing new tracts. I also despised the setons. I know people live with them in... [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendations for experienced J-Pouch G/I specialist in Seattle, Cleveland, Florida or St. Louis
S SeattleJane
SeattleJane @Mary2017 Thank you for your suggestions, it was very kind of you to offer suggestions, especially for the folks in Florida. [ more ]
Mary2017 There are some good doctors that are well versed about J-pouches in Florida like Dr. Jospeh Cody at Florida Medical, as far as Surgeon goes- I would recommend colorectal surgeons at Baycare. However, I hear very good things about doctors in New York especially Dr. Remzi for Colorectal surgeon and Dr. Bo Shen, their both in New York [ more ]
SeattleJane @Mary2017 Good question. I would like to be in the care of a G/I doc who is well versed in jpouch issues, ideally a G/I doc and/or clinic specializing in patients with jpouches (if such a person or clinic exists?). As for a surgeon, I am not currently in need of one, but I am prone to small bowel obstructions so it would be helpful to establish a relationship with a j-pouch surgeon if/when the need arises for another rebuild. Thanks for asking. [ more ]
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J-Pouch ForumsGeneral Discussion
Loop Ileostomy - Jpouch Disconnected
A AL77
Mary2017 I personally would not suggest a unused J-pouch to stay intact if you are not using it, temporary is fine but not for years on end. I would either get connected or opt to have the J-pouch taken out. I have an end ileostomy and the output has slowed down significantly! I am even less dehydrated than before. I would suggest an end ileostomy for sure. If you have any questions, feel free to pm me anytime. [ more ]
Scott F You can search for and read many dozens of posts here about various experiences with loop ileostomies. The majority that I've seen are negative, in various ways, though some folks do fine (and we have to keep in mind here that folks who are doing fine tend not to post about it, or even visit the J-pouch forum). [ more ]
AL77 Is there a higher output with a loop than and end Ileostomy? [ more ]
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J-Pouch ForumsGeneral Discussion
Complex Fistulas
A AL77
Cheryll Hi ATL, Yes, I have a j-pouch - I'm not sure why I'd be posting here if I didn't. If I didn't have a j-pouch, I would not have fistulas, crazy how the world works. Stool and puss continue to drain from the fistulas after the setons are removed and healing multiple fistulas can take 2-3 months. I do have some minor leakage due to a swollen sphincter area because that's where the setons were tied. I'd be shocked not to have any stool leakage because of my current diet, I'm eating low fiber... [ more ]
AL77 Hi Cheryl, Do you have a jpouch? If you do have you had increased stool leakage since your fistula surgery? I’m asking because the anal muscles can get damaged from the fistula surgery. [ more ]
lindaslankard Oh my, I had no idea that the process to get rid of the fistulas is so complex. I don’t know which is worse. I’m definitely stressed besides the pain and discomfort. Thanks for help [ more ]
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J-Pouch ForumsGeneral Discussion
newbie
A abbyann1
Mysticobra Wow. A pouch at 76! Amazing. I hope things smooth out for you. No advice. Except give it more time. I'm sure others that have alot more experience than I will advise better than I ever could. Richard. [ more ]
Scott F Some of us do have food sensitivities, but I think the variability you describe is more often the randomness of small intestinal output without a colon to stabilize things. When you say "in the bathroom all day" it's hard to tell whether you're able to empty your pouch properly, whether you're having urgency or not, and whether your stool is liquid or not. Gas is also sometimes the issue. In any case, the most general solutions that many J-pouchers employ are fiber, bowel slowers, and... [ more ]
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J-Pouch ForumsGeneral Discussion
STEVIA issues ?
PouchomarxPouchomarx
Pouchomarx Ive read Body Armor is a good source of hydration but they have Stevia in them. ingredients just say "Stevia sweetner". [ more ]
twinkie Use all the time w/ no issues. [ more ]
lclassen As Jan said, sugar alcohols are a known problem. The issue with stevia is that the majority of the time, stevia is combined with a sugar alcohol - often either xylitol or manitol, etc. So be very careful in looking at the ingredients. I steer clear of stevia for that reason. If you can find pure stevia it should be ok, I think. [ more ]
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J-Pouch ForumsGeneral Discussion
Just wondering what other jpouchers would do
chili123chili123
Jan Dollar I would take the meds, and I have. Biologics were experimental when I had my colectomy and j-pouch. Remicade has done a great job of inducing remission of my chronic pouchitis. I wonder if I might have avoided colectomy if biologics were more available at that time. My new GI was telling me that the bigger issue now is that biologics are not started early enough. I have been on one biologic or another for at least 15 years and I have had no side effects. Jan [ more ]
Scott F I'd take the meds. The misery from strictures isn't hypothetical, and your body has already expressed what happens without medication. Most folks eventually need some medications to manage this or that, whether or not they have a J-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
LOSING WEIGHT HAS BECOME IMPOSSIBLE
NicholleNicholle
Nicholle Thank you [ more ]
kta I am taking a generic Monjourno and have lost 50 pounds since February of this year. I want to lose 10 more but seem to be at a standstill. Who knows what the future holds? These drugs are new and most people who go off them gain the weight back. Medicare does not cover them so they are not cheap - as in not sustainable long term. I do know of a doctor who now just does one dose a month to maintain. That is down from four doses a month. I went to this under the guidance of a diet specialist... [ more ]
Nicholle Thank you for your post. I think with hard work and determinaton we can all get past some if not most of our challenges. I definately gets more difficult with age but I see plenty of people my age and older that seem to be in shape and have unlimited energy. I will aim for that and be happy with where I land. Thank you for the Redd Foxx memeory too I loved that show and all the great characters Lamonte Aunt Ester. [ more ]
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J-Pouch ForumsGeneral Discussion
Marijuana
JesseP22JesseP22
CTBarrister True, but 2 imodiums do not help me get to sleep. 2 gummies helps me sleep and also slows down the bowel movements equivalent to effects of 2 imodiums. I don't get up at night to move my bowels any more. It's called 2 in 1 action. So the gummies are worth more. [ more ]
Pouchomarx Two Imodiums are so much less expensive than 2 gummies..lol [ more ]
Mysticobra Thanks CT. I just wanted to clarity I'm not against its use. I just ramle a little.... Well. Way too much. P. S. I donated to norml back in the 70's. They sent out a little MJ leaf pin. In gold. Not real gold. Wish I knew where it was now. I was proud to wear it. Nowadays it wouldn't be seen as radical wearing it but I wore it all the time. Lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Infliximab Level Low
A AL77
Jan Dollar Good point about possible antibodies, especially with infliximab. As one of the earlier biologics it is based on mouse protein, and not fully humanized. Because of this it is more likely to cause antibody production. Perianal disease is particularly difficult to treat and it takes a long time. Jan [ more ]
Pouch2021 If IFX drug level is low it will typically reflex (lab will add automatically) to check for antibodies. If you've formed autoantibodies to the IFX than increasing the dose won't help. If you don't have Abs to the drug than increasing the dose may improve level and response. Also, it is important the drug level was drawn as a trough, usually collected off the IV before they give you the infusion to indicate the lowest level of drug in your system before the next dose. If drawn at any other... [ more ]
Scott F The medication is much more likely to work effectively if the blood levels are adequate. You may be getting partial benefit at the current dose, but it sounds like you need more. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy prep question
B Bubbapup
Dahlia @Bubbapup Hi I've had yearly pouchoscopy 's with sedation. Prep is liquid diet in afternoon, tap water enema in pm and 2hours before procedure. My previous surgeon said the preps for people with colons are risky with dehydration in jpouch patients. And always request a pediatric scope! I always request IV fluids to limit dehydration once IV is in. Good luck! [ more ]
Bubbapup I get mine every 5 years or unless I am having symptoms and they need to take a peek. I feel like the only good part is the sedation! Lol [ more ]
Jan Dollar I don’t think I am tough at all, but my pouchoscopies are nothing like a colonoscopy. I have been getting them without sedation since 1995 without issue. Definitely more comfortable since I have been in pouchitis remission. Anyway, I get mine about every 3 years or so. My biopsies have always been negative for dysplasia. Enjoy your Thanksgiving everyone. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Can I take Metamucil and Pepto Bismal?
JS Jason Song
Scott F CT, there are numerous ways that probiotics + antibiotics might work just fine. I’ll suggest just a few, which should hint at a much more complex system than “antibiotics kill all probiotics, so why bother?” Antibiotics (and Pepto-Bismol) are actually quite selective. They kill some bacteria species (or strains) readily, and they are completely harmless to others. In between are dose-dependent effects, bacteria that are killed at high doses only. Antibiotics (and PB) don’t have a perfectly... [ more ]
CTBarrister Scott, I am not understanding the science behind your post. If you take PB 3-4 times per day you are killing whatever bacteria is trying to populate the bowel. It makes no sense to me as a strategy to take probiotics with PB or antibiotics and I was specifically told not to by my Doctor. When we tried VSL #3 it was cold turkey. That being said I do try to eat a lot of natural probiotics but spending a lot of money on something from which you are getting a seriously diluted effect (if any)... [ more ]
Scott F While it’s true that antibiotics (or bactericides, like Pepto-Bismol) can reduce the efficacy of bacterial probiotics, it’s neverless quite a useful combination for some of us, myself included. It works best if the probiotic is spaced as far away in time as possible from the antibiotic (or bactericide), and it may require a higher dose of probiotic. I need a very high dose of VSL #3 DS, and the need for that might well be due to the Cipro and Flagyl I also take. So, for example, I take VSL... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone on Farziga w a jpouch , any dehydration and/or itching in the privates? Ketodosis? Asking because I think I have ckd chronic kidney disease
Len78Len78
Pouchomarx im 54 ans thin. I was diagnosed with stage 2 CKD about 2 years ago. My egfr has flucuated from 83 to 70 and creatinine has gone up and down around the cutoff of 1.23. My nephrologist stated for me to drink at least 2-3 liters of fluid a day. i am also on 12.5 mg of Atenolol for blood pressure. i had my first pouch in 2008 and my redo with mucousectomy in 2015. Since then i have always had some leakage and occasional bleeding. I do notice when i do alot of exercise like several miles on the... [ more ]
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J-Pouch ForumsGeneral Discussion
Ilex Skin Paste
A AL77
r39530 Ilex was recommended to me by the nurses at Cleveland Clinic back in 2002 when I had my J-pouch surgery, and I used it for 20 years. I agree that nothing works as well as Ilex, but since it disappeared from the market I have tried at least a dozen different alternatives. The best I have found is Medline 'Remedy' Silicon cream. It has 12.5% dimethicone where most others only have 2%-5%. I believe this is what makes it a a more effective moisture barrier than other creams (not as good as Ilex,... [ more ]
AL77 That stinks, there is nothing even close to that paste. It got rid of butt burn completely and sealed in the leakage very well too. What product do you use now? [ more ]
Pouchomarx NOBODY REALLY KNOWS... it sucks cuz thats only product that dries for the most part and was using it for 15 years now. surprised the site is still active and emails are not bounced back which gives some hope.. was told they had ingredient issues after covid but then heard someone bought them and were possibly going to revamp production again but that was months ago. theres a guy on the FB group in Europe who lives by their plant and he said nobody has been there for a long time and no cars... [ more ]
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J-Pouch ForumsGeneral Discussion
Lifting weights and exercising
J Jaydog
Former Member For me the first thing to go when I got sick with quick onset uc was my muscles that I had worked hard on.I was just flapping skin and bones.which taught me it's not the size of your muscles but the inner strength that's important and doing too much weightlifting releases the stress hormone cortisol that causes inflammation.I will still lift weights but I will take it alot easier and mainly walk as walking strengthens your core and helps with digestion.walking pretty much does a full body... [ more ]
atimko I had my pouch done while in the Army. once I recovered from the surgery, i was able to do all the things that were required by the Army. I spent a further 5 years in the Army before retiring. I am not a big weightlifter, but don't see any issues with you doing it once you have recovered. The only limitations i ever have is that if i am doing an outdoor activity, i always want to make sure there is a bathroom available. [ more ]
Former Member I think he was talking about me to you. He has said things like that to me in the past before. I wish people would not do things like that but oh well lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation with J-Pouch
P PARRR
Phoenix29 Thank you @Petey12 [ more ]
Petey12 Please read SJAN810 reply and click the link to the anorectal manometro test. In there they also list treatments of biofeedback and pelvic floor therapy which I highly recommend. It has helped me greatly understand what was going on. It is common with pouch surgery for muscles to be damaged, and therefore not function correctly. There are many things that can go wrong but there are therapies for them. Most doctors are like “it’s pouchitis so take Cipro” but there may be more to it. I also... [ more ]
Mziada ❤️
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J-Pouch ForumsGeneral Discussion
Itch in Ostomy opening
S Sfitz27
Mary2017 Hey! I have a stoma as well. Which foods are you eating when the itchiness occurs? How much water are you drinking? Are you taking anything to bulk up your stool? Sometimes taking stuff to bulk up stool will help in itchiness. Do you put anything around your stoma as a barrier? I use stoma paste or vaseline as a barrier around my stoma before I put bag on. I definitely need the questions above answered so I can give a well thought out answer for you. [ more ]
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J-Pouch ForumsGeneral Discussion
My Wife's Continued Issues
D DRS
kta Dr. Diane Bai in Tacoma has been amazing for me. After my old doctor retired, I tried a few different GI docs and neither of them had the gift - kind of an inate understanding of what I needed. At the time, I was having a lot of GI issues. She has been a godsend for me. [ more ]
tf If anal fissures I use a compound cream called Diltiazem 2% ointment. Very helpful to me. Best of Luck you have a lot to think about and I pray u find the right Dr and treatments. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Chronic Anemia
A AprilLS
Lana Hi, Its frustrating dealing with health issues. I haven't been on this site in years but felt the need to respond to your message. I have chronic iron deficient anemia. I have FAP and my polyps were found in 1998 when I was 35 yrs old. I had a total colectomy with a temporary stoma. My reversal was done 2 months later, successfully. 2 years later I had to have my gallbladder removed. The next 2 years, my GYN followed me very closely (at my request) . I was having menstrual migraines 9 days... [ more ]
RHolt I so sorry you are going through this and your quality of life is not good. I also have chronic anemia from what my GI suspects is Crohns and I need iron transfusions. It seems that your periods are complicating your anemia. One option (although I definitely understand you don't want more meds) is to take a low-dose estrogen-progesterone tablet daily and stop your periods altogether. I did this for many years because my periods were so bad and the hormonal fluctuations caused breast pain. [ more ]
Jan Dollar You may want to search the Women’s Health forum for topics on hysterectomy. I believe there have been a number of members who have had a hysterectomy post j-pouch. I think the main issue is adhesions that may be present from prior surgery that complicate the surgery. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Just had surgery- anybody get diverted to a stoma, then reconnected?
I ian337
AL77 Hi, I also had my jpouch disconnected. I underwent fecal diversion due to fistulas and perianal inflammation. I currently have a loop illeostomy and have to continue Infliximab infusions to heal the fistulas. I might be able to reconnect to the jpouch at some point. How is the jpouch working right now? Any problems? [ more ]
ian337 That is great to hear. Without developing ileus I think I would have recovered much faster. My problems stem from the small bowel scar tissue and not the pouch so I’m finding I’m not dealing with any bad burn as well and I’m able to pass some gas without the toilet (I’m I’m careful!). Just waiting for the “capacity” of the pouch to get better and some minor cramps when I have to go which seem a little stronger than before so I’m still going more often which I’m hoping will gradually subside. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
MRI Defecography notes
S SeattleJane
SeattleJane @Pouch2021 Thanks for your comments, they are truly helpful and I appreciate your taking the time to post. I am sorry you have had more than one defecography, but your experience and willingness to post provided me with new info - there is more than one kind of paste. That's helpful to know. And thank you for the other test comments. If yesterday's test doesn't yield any "aha" information, next up on my dance card is the anal manometry test in early January. After yesterday's abysmal... [ more ]
Pouch2021 Hi Jane, I'm sorry you went through this and hope you do find some answers. I always found these functional tests a bit unhelpful particularly when not performed under realistic conditions. i've had a few defecographies and they were all on a cammode though with the exception of one, they used contrast material that was so thick I would have never been able to expel it. Regardless of the sitting position it was just too thick and sticky. I felt like you did during anal manometry testing with... [ more ]
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J-Pouch ForumsGeneral Discussion
How old were you all when you got your J-pouch?
FM Former Member
Former Member AMAZING!!!! Glad your better [ more ]
skn69 I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and... [ more ]
Danr11 ❤️
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J-Pouch ForumsGeneral Discussion
Has anyone treated SIBO successfully?
F Fredz
New577 Early on I thought I had pouchitis. I tried Visbiome, it did not help, so I abandoned it as a therapy. My GI explained to me that the small intestine (specifically the pouch) was going to get populated with bacteria that was never meant to be there, and thus probiotics to counter that bacteria. I never understood the whole science behind it, and never understood how a hydrogen breath test diagnoses SIBO but the 1-2 month course of bactrim for my UTIs ended it and it has not returned. I’ll... [ more ]
Scott F Docs are telling J-pouchers to take probiotics because studies have shown that probiotics reduced incidence of pouchitis. VSL #3 and Visbiome are lableled specifically for J-pouchers. I understand that Dr. Shen may now be recommending a different approach to his patients, but let's not overstate this. There's plenty of uncertainty here, and humility is warranted. I'm not aware of evidence that probiotics (or yogurt, for that matter) cause SIBO. [ more ]
Pouchomarx just curious if you were on probiotics before you were diagnosed with SIBO? cuz probiotics are not meant for the small intestine and can cause SIBO actually. Not sure why docs are telling jpouchers to take probiotics. Dr Shen states not to and instead do green tea extract instead [ more ]
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J-Pouch ForumsGeneral Discussion
Recovering from takedown
aka KNKLHEADaka KNKLHEAD
Pouchomarx KNKLHEAD...sent you a few pm's [ more ]
aka KNKLHEAD Yeah, I think you can wait as long as you want from redo step 1 to take down. For you, it sounds like you could use a good break .. and it is likely you'll feel better and better. Since you take pain meds now, I hope that after a redo you feel well enough to get off them. Obviously, if you need them, you need them! I think I was good to drive three weeks or so from take down, but don't recall it being an issue, and after 10 days out from takedown, no pain meds, I'm sure I will have no issues... [ more ]
CeeeeCeeee I kept my baggie for a full year before having the takedown because it worked best for my work schedule. My summers were opportune for surgery/recovery because I was teaching. Looking back.....more than 10 years ago......I'm really glad I waited. My J-pouch was well healed and I had no issues transitioning to a connected system. I had no problem accepting the ileostomy because I finally felt so healthy compared to the years I lived with ulcerative colitis. In fact, if I needed to have a... [ more ]
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J-Pouch ForumsGeneral Discussion
A Little Frustrated / Helpless Feeling
C capper
kta For the burning - there is an oral medicine that absorbs the acids in your stool to stop the burning. It is called cholestyramine powder. When I first had my pouch, things just would not heal because I had such acid stools. My doc prescribed it and it worked wonders. I was able to heal and get off the med. [ more ]
Scott F When my life started to be dominated by gas (that of course I had to get out of my pouch frequently) my doc diagnosed SIBO. A couple of months of doxycycline took care of it. These days a shorter course of rifaximin seems to be more common, and has fewer side effects. [ more ]
capper Further to my current condition... This is one of the main issues I am dealing with these days. I just ate a big lunch. About 90 minutes later I started feeling a desperate need to have a bowel movement. I went to the restroom and instead of having a large pastey bowel movement, it was extremely loud and gassy, messy but a limited amount of output. In better days, it would be a larger BM and nowhere near the amount of gas and noise to go with it. I assume this is the result of inflammation... [ more ]
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J-Pouch ForumsGeneral Discussion
Oldest People with a J-Pouch?
temotytemoty
sweet honey ❤️
JLH Cyndi Have you tried pelvic floor PT? It's a very humiliating process but boy did it work for me The key to control is developing your core. Do you do Pilates? I have a k pouch now, but that was for other reasons. J [ more ]
Cate I just joined this forum after suffering alone with complications of colectomy and j-pouch surgery for about 10 years. For me, the use of opiates to slow my gut down was essential. It was the only medication that slowed down the transit time of food without giving me gas. Not to mention, it helps with pain too. But once transit time increased and there weren't so many stomach and bile acids reaching the pouch unprocessed, my gut and pouch improved immensely. I just can't believe how many... [ more ]
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J-Pouch ForumsGeneral Discussion
Anal Stricture - Surgeon recommending dilation ...then what?
JimInMaineJimInMaine
Hazel Hi! Im from Maine also and had Dr. Schoetz, the worlds best colon rectal surgeon! I have a flex/sig scheduled later this month with Dr. Marc Branda. He’s very good. I’ve been seeing him locally for a while now - got a little tired of driving to the Lahey Clinic, although I do miss seeing the doctors there. I don’t have much to say at this point just happy to hear from someone from Maine and having the same surgeon in common. I had my surgery in 1996, so It’s been awhile. Regards, Hazel [ more ]
SeattleJane @CTBarrister What a nightmare for you and your family for your father to die from a complication of cardiac catheterization, I'm so sorry. I appreciate the time you took to explain exactly how the endoscopist approached your dilation. At this point in time, I do not know either the width of the stricture or the approach my G/I doc will take to dilate. From my current symptoms, and from having scoped me 6 months ago and seen narrowing at that time that she dilated, she is reasonably certain I... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
J pouch and zepbound or wegovy weight loss shots.
BM Brenda McChesney
kta Same as Mary. I have been on Tirzepatide ( generic Monjourno) for 10 months and have lost 50 pounds. There has been no problem with the pouch. [ more ]
lclassen I’ve been on tirzaptide for a little over two months. Not having any problems. The symptom that others complain about is constipation. But, for me it’s been a great benefit 😊. I used to have 10-12 bathroom trips a day - so this has helped a bunch! Lol [ more ]
RenReeves It caused me to get gallstones, acid reflux and pouchitis… no issues with any of this prior to starting and ONLY took the lowest dose. .25 mg of semaglutide. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you all like to use wipes after pooping
FM Former Member
Former Member Your questions aren’t weird in general, just a little strange and somewhat naive. Not the kind of questions normally asked on a forum, which focuses on issues revolving around J pouch surgery etc. [ more ]
Former Member Well, I am sorry you feel that way, I was asking questions I always wondered about and I was excited to finally get answers, I never thought they were weird, but thanks for answering my questions anyway. [ more ]
lclassen ❤️
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J-Pouch ForumsGeneral Discussion
Jpouch removal date and time set
n/an/a
n/a Hi Lori, good luck with your surgery. I think if you go through a lot of the posts here of folks who've had the removal surgery, you'll find that there are very few (if any?) regrets. I've been doing quite well, back to doing everything I did before. I'm still pretty careful with what I eat, and chew very well, but have not had any obstructions since removal - yay and knock-on-wood. We're all here for you to answer any questions and give you our support. TE, I'm so glad to hear you're... [ more ]
TE Marie Lorib, I know what you mean about facebook. Whatever you decide please ask you surgeon if s/he will work on your ahesions while operating. My surgeon has spend more time dealing with my scarring/adhesions during surgeries than the main surgical goal. She's operated on me 3 times and each time I end up feeling better. At one time I was taking 4 10mg hydrocodone pills daily. I was able to taper down so that I no longer need them at all. Obstructions are hell! Let us know if you have any... [ more ]
LoriB Hi N/a, thanks for the referral to this site. I’ve been a member of jpouch.org but I just never thought of searching removal. I’m 65 and I’m forming a lot of scar tissue which has caused blockages for me. I have scar tissue at the rectal area too which makes emptying my j pouch difficult sometimes. All in all, I’m actually feeling fairly good since being on Entivio but I still have some ulcers in the pouch. That’s what makes this decision very difficult. It isn’t difficult in the middle of... [ more ]
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J-Pouch ForumsGeneral Discussion
Stelara for chronic pouchitis
D Dahlia
Dahlia Thank you both for replying. I did not take premeds before treatment but have decided to discontinue stelara due to this immune response. It did work wonderfully for the first 6months though. Back to cipro Flagyl sulfasalazine cocktails 🍸. [ more ]
Jan Dollar On the Stellara website they do mention both joint pain and fever as a side effect, along with a long list of others. Do you take premeds before your treatment? Perhaps taking some Tylenol and an antihistamine before your injection may help (if you don’t already do this). Since your reaction symptoms are a little delayed, perhaps they are less of a concern. But, they definitely seem related to me. But, like Scott said, it is up to you whether it is a reasonable trade off. Jan [ more ]
Scott F Joint pain is on the list of potential side effects, but fever isn’t specifically mentioned. If it’s happened every time it seems unreasonable to presume that it isn’t related. If it isn’t getting worse each time, as a delayed “allergic” reaction might, then you get to ask yourself if the discomfort is worth the benefit. There are other biologic options available, but with no guarantees they’ll work as well or have a better set of side effects. [ more ]
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J-Pouch ForumsGeneral Discussion
ANYTHING OUT THERE SIMILAR TO ILEX ?
PouchomarxPouchomarx
Veggiescott Yeah, I’m thinking Brivol is a scam also -even though they canceled my order I’m still watching my credit card activity to see if it’s been charged, so far it has not but will continue to monitor it [ more ]
ELH Update: Brivol Ilex order is a scam! My credit card has not been charged by Brivol and I still haven't had any communications from them. I canceled my credit card with my bank and will be issued a new one. The weird thing is that Brivol had my credit card number before I had a chance to give it to them. I've never dealt before with this company. Go figure. [ more ]
Ljz I looked at Brivol when unable to get Ilex directly and was suspicious. Looked up their address in Miami which is same address as Costco gas station. Was afraid a scam so didn’t order. Keep us posted - hope I am wrong and your product arrives soon! I know we are all sleeping a little better now that we’ve scored 2 tubs of Ilex. Hope and pray to not have shortage again any time soon! Was traveling last week before shipment arrived and had packed my last tube of Ilex in checked baggage- sadly... [ more ]
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J-Pouch ForumsGeneral Discussion
Expired Imodium - how long?
SpookySpooky
Spooky Thanks everyone. I figured it would be good for a while still, I just wasn't sure exactly how long, given that it already expired 7 months ago. But actually, I do recall reading somewhere that medication such as Tylenol is still good even 2 years past the shelf expiry, while cough syrup generally has a shorter shelf life, though that tends to be due to the other, non-medical ingredients which may go rancid. Anyway, imodium costs a pretty penny, even at Costco. Definitely no reason to toss it. [ more ]
Subsky Thanks Jan, I didn't know that! Never had an issue with out of date imodium yet, I use it too fast i guess :P [ more ]
Jan Dollar Most meds are good at least a year or more past the date (even a decade or more in many cases), paticularly if stored correctly (tight lid and not exposed to heat). The date is not truely an expiration, but a guarantee of potentcy. http://www.health.harvard.edu/...es/update1103a.shtml Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Tap water enema ok?
J Jpouch8888
Scott F I didn't misunderstand your post. There are places in the body that require significant biological control of anything introduced, like a sinus rinse. The pouch doesn't require that, nor does it require an osmotically balanced enema. [ more ]
OscarThePouch I think everybody misunderstood why i mentioned the sinus rinse. I was not asking any questions about sinus rinsing. I was merely suggesting that the salt packets that come with those kits may be usable in an enema if you want to make your own saline. I'm aware of the brain amoeba stories but it isn't relevant to this discussion. Not sure how my words got misunderstood as I think I typed them pretty clearly. Maybe everybody was reading too fast. [ more ]
CTBarrister Here is a news report on the latest "catastrophe" on using tap water for a sinus rinse: https://www.npr.org/2023/03/03...-brain-eating-amoeba [ more ]
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J-Pouch ForumsGeneral Discussion
what foods cause you butt burn?
lovedby2lovedby2
Melissa (MCJ) Some foods that are butt burners for me that haven't been mentioned are pepper and cranberry sauce. Then there is the list of what I call "butt scrapers": crackers, the real crunchy kind, if eating too many, nuts also if eating too many! They effectively end up giving butt burn. I use calmospetine and have for over 25 years. It helps as things start to slow down. [ more ]
Former Member Spicy foods!!! WHOAAA! lol [ more ]
NMGuy I salute Michael cause I tried for years to control different foods religiously, but I feel you can never totally eliminate the burn, only minimize. All the minimizing schemes I tried turned me into a Slave of crappy foods. I like good food and just decided good food/drink was going to be part of my life. My solution was Pampers sensitive wipes and at home a shower hooked up to hand wand for rinsing when I'm not rushed. For the shower rinse I don't even wipe, just dump the pouch in the... [ more ]
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J-Pouch ForumsGeneral Discussion
Total gastrectomy or wait
Len78Len78
Jan Dollar Gee Len, this is a really tough call. I am sure you have been told numerous times that only you can decide what risks you are willing to live with. I presume your doc has laid out all the potential scenarios and their pitfalls. There really are no “great” choices, I think. FAP is a real dilemma. My opinion does not mean much, because I am not living with FAP. But, if I was I probably would get a second opinion and likely go with the gastrectomy, since it seems like it is in the future... [ more ]
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J-Pouch ForumsGeneral Discussion
Anal sex
M Mrigor
Former Member Anal sex is a no go for us. That can permanently damage the pouch and cause permanent incontinence. Please do not risk that, you have been through enough already. [ more ]
Sara Marie Scar tissue may affect how the massage feels as well. [ more ]
Mrigor ❤️
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J-Pouch ForumsGeneral Discussion
Yogurt
CTBarristerCTBarrister
CTBarrister I just bought a brand new product called Dahlicious Aliv. It is a sugar free (i.e. "no sugar added" beyond what is in the strawberries), gluten free probiotic drink containing 50 billion probiotics in a 3.92 ounce bottle. 70 calories per serving. I could not find nutritional info online that I could post, but did find this on their Facebook page: https://www.facebook.com/DAHli....Lassi/photos_stream It comes in 3 varieties, "women's health", "immune health", and digestive health." 4 bottles... [ more ]
SallyJPouch CTBarrister, your information is valuable to me. In light of the fact that you are on antibiotics one week and then off, it is invaluable to you, and that is good information for all of us. Thank you for your many contributions and I am sorry you are having such difficulty. SallyJPouch [ more ]
CTBarrister Just an update on some additional products I tried: Coach Farm Yo-Goat Cultured Goat Milk. Product description: http://www.coachfarmstore.com/yogoat-12-pa12.html This one tastes pretty good, can't really find any info on the amount of live cultures in it. KeVita Sparkling Probiotic Coconut Water. Nutritional info: http://kevita.com/product-family/coconut/ This one actually is not a yogurt but rather sparkling probiotic coconut water. It's got an unusual taste but not bad. Main positive with... [ more ]
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J-Pouch ForumsGeneral Discussion
Am I really ready for J-pouch surgery?
C Casie130
TE Marie It is good to be skeptical when making this huge decision. I had conscious sedation over 14 years and saw my colon sick and then bounce back. I knew what it looked like inside. During my last test I saw that part of my colon was BLACK and dead inside. The rest of it didn't look well either and my GI took around 30 biopsies. I didn't have any polyps, just one ugly mess of a colon. I'd been in the flare from hell for 6 months. My GI set up for a CTscan 2 days later. When I had my follow up... [ more ]
Disneynut I'm sorry Dog Day and vstRN, I didn't read your whole stories, but were yours emergency surgeries? Where were your surgeries done? I know the success rate is much higher when it isn't emergency surgery and when done by an experienced surgeon. She needs to make her decision based on comparing apples to apples. I hope I didn't offend, because I feel very bad for your situations. [ more ]
vstRN I would try the fecal transplant and worms in a second (and I'm a vegetarian too)! I'm pretty fresh out of surgeries but I really really wish I had waited on this and exhausted more options. It does sound like you are emotionally ready for this and I think it is wonderful that you are confident you want this done. I made the decision because I was scared, felt guilty and was just so emotionally beaten down from a 2 week stay on a med/surg floor with horrendous room mates. When my kids would... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium shelf life?
PouchomarxPouchomarx
Spooky We actually had a thread like this a while back. Basically, expiry dates guarantee that a medication is at full potency AT LEAST until the expiry date. This does not necessarily mean that the medication is not effective past this date, but that the manufacturer is no longer guaranteeing potency. There is generally no harm in taking medications, other than there is a chance they may not provide the full effect. Indeed, provided that a medication is stored properly, it may be good even years... [ more ]
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J-Pouch ForumsGeneral Discussion
What is our disability called?
K Kobe
Former Member A lot of good responses! I agree that we will always have UC and IBD. What we have is not a cure for Autoimmune Disease and IBD. Our J-pouch/ileostomy are our treatment plan. Our condition is called what our disease is called, in my case UC. I like to use the word special or difference over disability/disorder. [ more ]
ytcrockpot I thought I was the only one that asked this question. My psychiatrist asked me yesterday to find out from my gastro doc what the medical term for my disability is. Apparently it's a hard question to answer. no one understands, 35yrs post total colectomy, chronic diarrhea, pouchitis, no meds working and everything else that's associated with it. [ more ]
Rebe0505 kobe i think you might say i have chronic intestinal issues..thats what i say when it has me down and out or someone wants to know why i am such a food police eating.. and if someone goes any further i just say i am missing my large intestines..that usually stops all questions! i did not have my colitus or my pouch during my working years so i guess if it effects your ability to perform your job it does become an issue you have to deal with. but i still would not consider it a disability.. [ more ]
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J-Pouch ForumsGeneral Discussion
iLex alternative search results
K ken31cay
Ljz Yes!! Thanks for sharing that! I will definitely call- and my husband will call and I will call again to request it! I did before but never got through nor did they answer emails. Would be wonderful if Ilex became available again! I too have found Kens compound to be similar to Ilex but because the stomadhesive burns I was using maybe 20% of that with 80% of the Cerave which is nice and thick. I will try the alchohol free convatec paste right away but very thankful to ken for finding that... [ more ]
hiyakat Hi @ken31cay and everyone, I've been an iLex user for 25 years, and unfortunately, Medline (who now owns iLex) has stopped producing it. I called them, and while they suggested trying "Remedy," I found it doesn’t compare to iLex in terms of consistency or effectiveness. The representative told me she will let management know. If you miss iLex as much as I do, please consider calling Medline to express your support for bringing it back . The more of us who reach out, the more likely they are... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Oregano Oil.
V van
Chris KCMO Cross-posting a status update: https://www.j-pouch.org/topic/...9#728953969407754529 [ more ]
Sara Marie Oh I forgot to say that Jini Patel, who wrote "Listen to Your Gut," took oregano oil for a year. And yeah, this experimenting can be expensive. I hope to find some things that work and hopefully they won't be the most expensive. I'm not wealthy and it looks like the gap between the poor and rich will probably keep on widening in the US, where I live. [ more ]
RondaC ❤️
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J-Pouch ForumsGeneral Discussion
Sleeping through the night
Mema 1Mema 1
ibirdie ❤️
Mema 1 Wow, thanks so much for all the information .... you're incredible! [ more ]
Scott F Psyllium is the most common soluble fiber used by J-pouchers. Not everyone does well with it, and some find it gassy, but it does tend to thicken and bulk up the stool. I’ve used it every day since my surgery 17 years ago. Alternatives to psyllium include Benefiber and CItrucel, and some folks do better with one of those, while others do best without soluble fiber supplements. Some doctors apparently recommend taking these with smallish amounts of water, but I think that’s bad advice, and I... [ more ]
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J-Pouch ForumsGeneral Discussion
Upset - maybe misdiagnosed and biologics concerns
B BlueFlame
CTBarrister The Prometheus results should be ignored, totally. IMHO this test is just a money grab by pathologists much like propofol was a few years back by anesthesiologists. Then when everyone started doing it became a craze until patients objected because it is 15 times the cost of conscious sedation which they do not tell you upfront when giving you a choice. As far as Prometheus they give something to the Docs like kickbacks for pushing these tests even though responsible and ethical doctors know... [ more ]
BlueFlame I don’t know but, while it’s quite easy to be negative, I choose to stay positive. [ more ]
Jan Dollar Sounds like it was a big waste of time and money... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
sugar free vs. with sugar metamucil
D dawn58
CeeeeCeeee I love Metamucil and use the sugarless variety when needed. Typically, I no longer use it regularly. I am over 10 years post takedown. However, when I feel I need more comfortable b.m.s, I either use Metamucil or eat oatmeal. They both seem to have the same effect on me. How easy is that treatment!!!!! [ more ]
dawn58 So far I have only tried the orange smooth metamucil. I take a tablespoon diluted in a few ounces of water before or during each meal. I will let you know after I try the Kirkland brand. I think the result may be different after takedown than it is with the loop. [ more ]
KeepMovinOn Thanks for the tip on the sale at Costco! I use the same kind you do and have not tried the others yet, except for the smooth vs. the original coarse. I did not do as well with the smooth. Can I ask how you take the Metamucil? Do you take some before every meal and how much? I still have my loop ileo and have been trying to experiment before takedown, but have not had a lot of advice from the doctors in this area. I will be interested to hear if the non-brand name works as well for you! May... [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids in a J-Pouch?
BS Ben S.
Sara Marie Agreed! Hemorrhoids are not funny! [ more ]
Len78 Hemmorroids not humorous lol [ more ]
Len78 I don’t have a rectal cuff anymore since transanal mucosectomy done 4/17 via minimally invasive surgery so I don’t have the issue of humorous anymore the pouch is handsewn to the anus now due to fap and a risk of high grade dysplasia /cancer which thankfully came back benign len [ more ]
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J-Pouch ForumsGeneral Discussion
cipro
Holly MHolly M
kangaroo woman Hi. I have had several pouchoscopies without sedation/anesthesia, and they are not bad at all. Nothing compared to a colonoscopy...there must not be as many nerve endings in your small intestine. You just feel a little bloated when they add some air to increase visualization. With that being said, I have had them with anesthesia as well, and the only time I didn't was when it was more of an emergency/on the spot necessity. [ more ]
TinCan I definitely agree with CT and Spooky regarding your desire/right to have sedation. It was not difficult in my case, but I wasn't exactly looking forward to it given the number of times I had been poked and prodded. I think we all reach a point where we just can't take it anymore, even if the pain is relatively minor. If you are at that point, then sedation is a reasonable option. By the way CT, I actually opted to have my last colonoscopy without sedation. One reason was simply for the... [ more ]
CTBarrister Spooky, I am glad you brought up this point. In my case it is essential that they go higher up in the ileum since I have inflammation in my ileum 30 cm above the pouch. Another reason why I choose sedation. The thing is that if Holly M has a good GI, he/she will take a "peek" above the pouch at the neoterminal ileum to see if anything is cooking up there, and if it is, there will then be a deeper penetration further up the neoterminal ileum. No way to know whether this will be happening in... [ more ]
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J-Pouch ForumsGeneral Discussion
Awesome bidet
DeDe
De Here is the info from Amazon. Both items came to $58.xx. The bumpers help keep the toilet seat level because of the added bulk under the toilet seat on the bolts. LUXE Bidet Neo 185 (Elite) Non-Electric Bidet Toilet Attachment w/ Self-cleaning Dual Nozzle and Easy Water Pressure Adjustment for Sanitary and Feminine Wash (White and White) FOOFOO Bidet Toilet Seat Bumper for Bidet Attachment with Strong Adhesive White 4PACK Please tell me how you like if you get it or any other one. [ more ]
De I bought the Luxe a few months ago and posted a note. I love it, so much less soreness from not having to wipe as much. As well as cleanliness. Wish I had had it when the pouch was new and BMs burned and felt like glass coming out ! It is so easy to install. I only have cold water but it not freezing (maybe because it is sitting in the pipes). Everyone would/could be so much better with it. [ more ]
CTB23 ❤️
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J-Pouch ForumsGeneral Discussion
Pain Chest, Sides
JE Joe Evans
Jan Dollar Makes sense to have some screening tests done. At 76, osteoarthritis is a likely culprit. However, it is possible to have both osteo and enteropathic arthritis. I am one of those people. Your symptoms are not typical of enteropathic arthritis, but it is not uncommon for it to manifest a decade or more after colectomy. That said, it can mimic all sorts of things. Your primary doctor or ortho can order screening tests as a starting point before seeing a rheumatologist. Jan [ more ]
Scott F Some blood testing sounds like a good idea. You might ask them to check your Vitamin D as well - I had lots of vague-but-significant pains when that was low. It sounds premature to involve a rheumatologist, unless there’s more to the story. [ more ]
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J-Pouch ForumsGeneral Discussion
Entyvio or any med
chili123chili123
Pouchomarx i have had a pouch in 2008 with alot of structural issues and then a Remzi redo in 2015. I deal with minor leakage from time to time since my redo which Remzi stated redo with mucousectomy is a 50% chance of having some leakage. but for the past several years i have had 2 small ulcers in mid pouch that just havent cleared with antibiotics but not really causing any issues. I am still with cleveland clinic and my GI has not talked about biologics at all. I dont want to go on them unless... [ more ]
Jan Dollar I have been dealing with UC since 1972. The concept of “no meds” has been pretty much of a fantasy for me. Maybe some folks can control some symptoms with diet and lifestyle, but my experience is that does not work in the long run. I started out with pancolitis when I was 15 years old and eventually had nearly 2 decades of remission with only an occasional flare and intermittent medication treatment. Then it all blew up and I wound up with a j-pouch. I had another run of some med free years... [ more ]
Scott F You really ought to manage that inflammation, if you can. Diet alone probably won’t be adequate. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone else having trouble buying Ilex?
JS julie s
Former Member ❤️
ken31cay I posted at the end of the following thread about an iLex alternative that works virtually the same for me as iLex does: https://www.j-pouch.org/topic/...ative-search-results It is a mix of Convatec Stomahesive and CeraVe Ointment. [ more ]
grateful Thank you Ken and Pouchomarx. Same here!!! It’s like gold to me too. I get by, but there just isn’t anything like Ilex. Wishing you both the best and lots of Ilex to buy. [ more ]
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J-Pouch ForumsGeneral Discussion
Thyroid Issue!
CTBarristerCTBarrister
CTBarrister Sharon, Frequent showers are encouraged. Tea, however, is banned on the low iodine diet, as is instant coffee. Certain herbal teas, like peppermint for example, are very high in iodine. The next step is a whole body scan on Sept. 23, one week from today, at which point my low iodine diet will end after 24 days. The purpose of this scan is to determine if there are any remaining thyroid cells in my body (cancerous or otherwise), and if so, their location. Thyroid cells "suck" up the... [ more ]
skn69 Are you allowed to take a warm bath? Maybe a leisurely soak and a hot tea with honey would help you get through the evening...and get some rest. I find that lollypops work best for me when I need to keep salviating but don't want to ingest too much candy (does't happend often!) Do you glow yet? (sorry just had to say it!) What happens after this treatment? What is the next stage for you? How do they test for effectiveness? Good luck and hang in there Sharon [ more ]
CTBarrister Hi, just an update on my thyroid cancer treatment which may be of interest to any J Poucher stricken with papillary thyroid cancer. So as I write this I am quite radioactive due to imbibing radioactive iodine this morning. I arrived at the Smilow Cancer Center at Yale New Haven Hospital at around 9:45 am. this morning. With the radiologist’s blessing I preemptively popped an anti-nausea pill called Zofran at 9:55 a.m. I ended up drinking a 150 millicurie dosage of radioactive iodine in... [ more ]
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J-Pouch ForumsGeneral Discussion
Need Guidance on How to Choose a Surgeon
Sara14Sara14
Sara14 Thank you. [ more ]
New577 Lisa, congrats on your wonderful outcome, I am beyond thrilled to hear stories such as yours. 🙂🙂😁 Sara, I understand your situation and I am so sorry to hear you are all alone. Whatever you ultimately decide to do, please to not underestimate the need for support after each step. This is major surgery and just learning to use an osteomy bag, if you require one is no small feat. As I discussed previously, surgical outcomes vary and you don’t know what if any complications might arise. I... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Heading into Cleveland Clinic - Dr. Remzi re-do
aka KNKLHEADaka KNKLHEAD
AK-NY just to post in regards to my recovery from the redo procedure I wouldn't want to bore people with my background, but to summarize i had a failed pouch which was determined right during the take down procedure. For the Redo pouch procedure I chose NYU Langone over my previous hospital. I was lucky to discover Dr. Remzi had just moved to NYC where I reside. My mother and a friend had pushed me to get a second opinion. As i already had an illeostomy, step 1 of the redo was the construction of... [ more ]
NJshoremom AK-NY, I wish you a speedy recovery. I'm going in for part 3 on Oct 3. I was interested to know how long they keep you in NYU for part 3? Part 2 of the revision was very rough. I truly believe the only way to fix the failing pouch was the revision. There was so much going on that no medicine could fix. Strictures,fistula,intestines were a tangled mess,fused together by scar tissue, large hernia. My pouch was a goner. Thankfully now I'm feeling great. New j pouch is looking good and waiting... [ more ]
AK-NY I just had a redo with Dr Remzi 6 days ago in NY. My last jpouch made was by one of the top surgeons a year ago. Remzi upon surgery also noticed a twisted top part of the pouch which was not observed on any CAT, MRI or xray I was required to take over the past year. Once I am out of here I will write a post on all specifics of how I am. [ more ]
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J-Pouch ForumsGeneral Discussion
Opinions about medicinal marijuana for J-Pouch, and my story
FM Former Member
TE Marie Valli - Too bad your surgeon wasn't much help. I've always had to deal with my Internists to get pain medications. At least she said she was neutral. I'm not telling my doctors about anything as it isn't legal in my state. I buy it in a legal state. If it wasn't for family we'd move. Strange, I'm the same with prescription medication but wouldn't drive after cannabis use that contains THC. [ more ]
valli Saw my surgeon today and she is treating me for pouchitis with flagyl hoping that will help the pressure then I don’t have to try anything. Will get a pouch scope done in a few weeks . If that doesn’t help I will try a few different strains as mentioned above . I asked her about trying something ( cannabis ) and she said she couldn’t help me with that . That she is neutral it just became legal here in Ontario She wasn’t that much help [ more ]
Beth-Jpouch1991 ❤️
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J-Pouch ForumsGeneral Discussion
Digestive enzymes to reduce gas?
SM Sara Marie
Former Member ❤️
Sara Marie I may try the hot water and lemon in the future. That's a nice, cheap, ancient remedy. I have heard it is prescribed for balancing the liver and excessive heat in the body, but not sure what else it does. [ more ]
jhills I’m an ulcerative colitis patient, Jpouch surgery 23 years ago. Recently I tried something life changing for my digiestive system. No drinking at meal times. I wait 45 mins after eating to drink all liquids. Drinking while eating reduced my stomach acids trying to work. Now my stomach acids can work 100% and my stool out out is thick consistency and I maintain good weight. Also years ago I had to eliminate dairy and gluten because they flare up and make my pouch and intestines bleed. I drink... [ more ]
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J-Pouch ForumsGeneral Discussion
Alcohol
ValenValen
Sara Marie I'm 18 years out and alcohol irritates my guts, especially beer. The least irritating are rice wine and vodka. Gin burns holes through me. I could drink anything when I had a colon (except when UC flared up). My pouch is super picky. My small intestine never wanted to be a colon. [ more ]
grateful I use Aperol even with really good Champagne (which sometimes it too dry for me) and it is delicious. [ more ]
CTBarrister 3 months is not that far out. After a couple of years you should be able to drink most alcohol no problem. Red wine is the only thing that remained a problem for me, due to the tannins. [ more ]
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J-Pouch ForumsGeneral Discussion
Special Enema Kit for J-Pouch?
JulieBakerJulieBaker
CTBarrister Yes, it's in the laxative section of every pharmacy and isn't particularly expensive. Make sure you get the clear colored liquid which comes in cherry and lemon I think. I use the Rite Aid brand which is visible in this link: https://www.influenster.com/re...avor-10-fl-oz-296-ml [ more ]
KennyJG44 @CTBarrister is Mag Citrate generally available OTC ? [ more ]
3Cutedogs Hi! I am not sure if this will help but thought I would share. My J-Pouch has never emptied completely. Several years ago, my surgeon at Mayo Clinic suggested I start "irrigating" my pouch. They provided me with a good catheter and catheter tip syringe: 60 ML needle nose syringe which I fill with shower water while I am showering in the morning and/or evening. I insert the catheter in to my Pouch and then insert the water filled syringe into the catheter. My J-Pouch immediately starts... [ more ]
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J-Pouch ForumsGeneral Discussion
How fast is your food passing through
M Marc-Antoine
Former Member Yeah same with me as well, I tried to reduce trips as well but have not been successful either. But maybe that is suppose to be our baseline and I think that is pretty healthy for us if were not having any other issues. [ more ]
Former Member DAMN! That is pretty fast! I am surprised your transit time is faster than mine, especially since I do not eat animals. You must be taking care of your body [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
My world has just collapsed......
G Guest
TE Marie When a divorce happens it is sad. You have conducted yourself well and your world didn't crash. Here's to a HAPPY New Year and New Life for you and your girls. I got a tattoo for my birthday before Christmas. My family was laughing when I told them I wanted one. It symbolizes all the suffering I have had in the past and is a reminder, to me, to keep putting one foot in front of another. It is a symbol that means "Acceptance of Optimal Health". It's an ancient angelic symbol, supposedly. I... [ more ]
mgmt10 A new year and a new start on life for you. Wishing you the best with your health and your personal life. I have helped a friend cope thru a recent divorce. It's so hard on everyone but she will make it thru and so will you. Take care of yourself! [ more ]
Pouchomarx Hey guys, So my divorce was final this past friday. I cried like a baby and she treated it like just another day. I am doing ok though. I havent seen my therapist in over a month cuz cant afford her now, especially since beginning of the year and deductible not met. still on Lexapro. Im finally starting to move on. I will be ok. As far as my health, still have this sinus in my pouch but all is calm. Lets hope it stays that way [ more ]
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J-Pouch ForumsGeneral Discussion
Getting depressed about my ongoing anemia
R RB15
R227 Thanks for getting back to me RB15, much appreciated. Sorry to hear you're still experiencing anaemia issues, I'm sure it's really exhausting constantly having to have infusions like that. Especially if you're not feeling much benefit from them. I hope your anaemia improves, and that the crohns gets under control too. My anaemia has improved in the last four months - but the only thing different is that I completely gave up alcohol. I can't think of anything else that's changed in that time,... [ more ]
RB15 Hi R227, sorry for the delay in replying, i missed the email notification. So since that post i got diagnosed with Crohn’s disease unfortunately, so i guess that could certainly be a factor to the anemia as i was losing blood too. However, i have been on Stelara now for 8 months and it is working well to the point that i bleed seldomly now, but still have the same rate of anemia. Which leaves me to believe that maybe it has been an absorption issue all along, maybe due to the Crohn’s or the... [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Questions About Endoscopic Balloon Dilation
CTBarristerCTBarrister
1993SPouch OMG, I couldn't eat that at all right now so that's the goal - being able to eat something like this! [ more ]
CTBarrister AMB- I am not sure. They are now running an online ordering service. Which is frozen uncooked pies, 3 for like $95. Check here or their website: https://www.goldbelly.com/sallys-apizza Those pizzerias (Sally's, Pepe's, Modern) are all a 10 minute drive from where I live, so I eat there somewhat regularly. But I can eat New Haven pizza and almost anything else. My birthday dinner was Saturday night and it was celebrated at September in Bangkok, probably the best Thai restaurant in New Haven,... [ more ]
Not your average gal! ❤️
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J-Pouch ForumsGeneral Discussion
THYROID
K kk
CTBarrister Sophia, My diagnosis was papillary thyroid cancer and my entire thyroid was removed in July 2015. I have done well ever since and my most recent quarterly blood test showed a good TSH level and my tumor marker was 0. Did they mention if you will be given radioactive iodine after surgery? Thyroid cancers are typically treated with a combination of surgery and radioactive iodine if there is any sign of metastasis, which they will not know until surgery. My ENT surgeon told me the metastasis... [ more ]
TE Marie Sophia, I hope your surgery goes well. I'm glad they decided to do the biopsy. I hope you don't loose your entire thyroid but I think it's going to be easier than loosing your colon! You've got this! [ more ]
Sophia Hi everyone it’s been a while since I have given anyone an update of my situation. Since my last post I had done a lot of waiting and worrying about everything. In October I finally got to see the Ent specialist at first he wasn’t overly concerned about the ultrasound results because there was no calcification or suspicious activity. But because of the fap and the greater risk of cancer he had spoken with his colleague within the same office. They felt in the best interest of my care that... [ more ]
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J-Pouch ForumsGeneral Discussion
Best surgeon for removing complicated j-pouch
S scallop
Pouchomarx Dr Remzi is the best jpouch surgeon in NYC. He handles the very most difficult jpouch surgeries in the world. I am sure he would be capable to remove it. Hes at Northwell [ more ]
scallop Hi Woodstock69 Thank you very much for the recommendation. I hope you don't mind if I ask a few questions: What led you and your son to have your pouches removed? Was the surgery complicated? How was the recovery? How is life with the ostomy? I had my pouch initially done in 1998 and then redone by Dr. Fazio at CCF in Cleveland in 2001. It has never worked well but now it works very poorly - I have to catheterize and irrigate 4x/day in addition to other bathroom trips in between. Because the... [ more ]
woodstock69 Dr Eric Weiss at CC Florida removed mine, he is the most experienced , he also removed my son's [ more ]
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J-Pouch ForumsGeneral Discussion
Prescription Iron Supplements
C CTB23
Former Member Yeah hopefully now it will work. Just like I could not have orange juice with my colon but now i can! [ more ]
Sara Marie Thank y'all for sharing. This is yet another thing that the marvelous colon did for us that we have to find a way to regulate externally! I will make sure my doc tests for iron. It was ages ago, when I had a colon and had active UC, that my iron tested low and I tried iron supplements, which made the bleeding worse. Maybe they have something better by now. This was probably 25 or 30 years ago last time I tried it!! [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Feels like sand under my tounge and down my throat
skn69skn69
skn69 Thanks Ally Kat, It seems to have gone away for now...it took about 10 days...never did figure out what it was or where it came from, I am just happy that it is gone. By the way..my sense of taste is pretty much gone too. Is it related? Sharon [ more ]
AllyKat I'm sorry to read that your having more problems Sharon. You r a good person and I hope this goes away quickly. [ more ]
skn69 Didn't get in to see him...been crazy busy...No, I have never been tested for Celiac but I do have tons of food alergies...just none that ever did this to me...next week will see a doctor..don't know which...whoever has time to take me in...for now, off to another town to do some work and can't slow down or I will never get started again...I'll keep away from all bread and cheese (darn, this is France!) Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
j-pouch vs Ostomy
CR Cindy R
Michael 59 yo. Pouch 37 yrs this fall. Turning 60 next month. Always believed in eating & drinking everything. Lived in the US and Asia. Used to eat street food in Bangkok and Jakarta. Yep, I might have paid for it with more BMs and/or BB, but it's my life and I want to live it. I dislike the, 'everyone is a different mantra' ... probably true but feels like an escape valve nonetheless. To me, it's not about how well your body might handle the surgery but how you choose to live and basically... [ more ]
Kangaroo 2 Imodium before bed. Over 6 years. My output has DECREASED with time. I was 38 when I got j pouch and I'm 44 now. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Imodium alternatives
S slouchypouch
slouchypouch Hey BR, it might be a good idea to buy extra in advance and stock up. It stands to reason that some vendors have ignored the DEA only temporarily until existing surplus stock runs out. That kind of pressure is serious business IMO. Adding to the issue is huge profit increases to CVS or anyone who goes with the DEA recommendation. It makes sense that they'll eventually clamp down like Costco did. I'm just being careful. I ordered that kilo from China so will post more about it after it shows up. [ more ]
brmcguire The cheapest option for Immodium that I have found is the Ship & Save subscription for the 200 ct bottles through CVS. I'm paying on average $15/bottle, so still quadruple the price of what I paid for it from CVS, but since Wal-Mart stopped carrying the 200ct bottles, this is the most economical option I've found. It is also nice that it is shipped right to my door on a pre-set frequency to make sure I don't run out. [ more ]
slouchypouch Maybe not ruffling feathers but I cause stress-induced peristalsis with my award winning bad attitude You should have seen me as a youth. I'm a glass half-full nowadays, at least after each episode of narcissistic rage. Gotta have a sense of humor to keep from killing myself. LOL [ more ]
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J-Pouch ForumsGeneral Discussion
wife no longer wants to have sex...
5 5459
leo Dear 5459, since my illness and surgeries I have been very curious about how this same journey would affect men. I am sorry to hear that your partner is so...cruel. Our body image and self-esteem undergoes such drastic assaults during illness and surgery no matter our gender. I was still stitched up and drugged out of my skull post-op and my main fear was whether or not I would still be horny and whether it would hurt to have sex. I am lucky to have a supportive partner who is patient. I can... [ more ]
TE Marie Surgeons just want to cut and go to the next surgery...at least mine was that way. That's why I am blessed with an Internist that has many IBD patients. She takes care of all of my medications. The last time I saw my surgeon, a year ago at my first year appt. he said I had some bleeding around the cuff and gave me a prescription for 14 days of Anucort. I came home and called my GI. He treated the cuffitis, which the surgeon blew off - even after I told said surgeon I'd had a toilet with a... [ more ]
5459 my intent was by no means to offend those who contributed resolution based insight and thought. those posts were appreciated and helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Medicinal Marijuana
M maddie18
Stormwatch People who have severe pouchitis. Please try chewing your ABs up like I did. Cipro tastes absolutely terrible. Augmentin not so bad. Dr. Peter Rubin of New York, scoped me and told me that for 16 years it was the first time he saw 0 pouchitis. Probably around 95 percent better than I was. I have a life again. I'm telling you people, try a little indiga for symptoms (and other benefits I believe. I know it helps the symptoms and it very well could be contributing to a cure/improvement.), lots... [ more ]
Stormwatch The government has NO RIGHT to tell us we can't use maraujauna. [ more ]
Stormwatch I have made massive improvements by doing three things: smoking a good indica strain, taking simithicone before meals and chewing up my Cipro and Augmentin. My pouchitis is almost at non existent after suffering 16 yrs with it. Finally it's much much better. I probably use the bathroom 4 or 5 times a day. It used to be 15 or 20. I used to have huge abscesses. I was getting surgery every month on them. [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Bug Advice!!!
RL Rev Lenny
CTBarrister Speaking of which, I am sick right now (common cold I think as I got the flu shot) and made chicken soup in the crockpot, and salted it up pretty good. I cooked it for 18 hours - chicken breasts, onions, carrots, celery, parsnips, turnips and zucchini. At the end of the 18 hour cooking process I was left with a very rich and intensely flavorful broth. The beauty of cooking chicken soup in a crockpot or slow cooker is that the soup is not "boiled down", and therefore broth is not wasted. [ more ]
CTBarrister I totally agree, if it is a stomach bug the last thing you want to use is loperamide as all it will do is prolong the agony instead of allowing your body to rid itself of the toxins through the natural processes of diarrhea and vomiting. This is how your body naturally expels things it does not want inside, so why counteract those processes? As I mentioned in another thread I recently got sickened from eating steak tartare and felt intense nausea for a period of time, dry heaves and then... [ more ]
Jan Dollar Yep, especially if this is bacterial rather than viral, bowel slowers prolong the illness and intensify the gut damage. But, if you are pretty sure this is the common norovirus, then bowel slowers are OK, since there isn't the toxin release you get with C. diff. Salty broths are better than plain water, if you can tolerate them, or non-sugary hydration drinks, like Pedialyte. But, realistically, if you are so weak you are nearly passing out, you need IV fluids. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Seriously bad butt burn
G Golfdrumst
michhebe Calmoseptine ointment has removed all butt-burns for me. but need to use it most of the time to work properly. [ more ]
Lionel For those butt-burn sufferers I have had great success from the beginning of my surgery with a compound consisting of Nifedipine 0.3%, Lidocaine 1.5% in Petrolatum Ointment. It always works very well. Good for itching in that area too! Good luck to all of you... Lionel [ more ]
Katerina ❤️
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J-Pouch ForumsGeneral Discussion
Diet and comfort etc...
RJG-RossRJG-Ross
RJG-Ross Actually, rereading that last comment, I feel that the situation with J-Pouchers is a bit more urgent than just taking it easy with destiny/existentialism etc... Truthfully, we MUST encounter easier comfort... and responses/solutions to our concerns... This truly isn't an armchair situation... And you just witnessed my very own arguing with myself. Ross [ more ]
RJG-Ross Rachel, wow! You are awesome! Without the blast you know that you aren't through. But, truthfully, it's when I can relax as if I had succeed in something, relax into other things... pouch cleared = mind cleared. Truthfully, I don't know why I suddenly started tolerating apples a few years back and use them to remove digestive problems when they used to cause horrible problems... It's not so much about bearing burdens; although it is disconcerting for me, it seems that there are certain... [ more ]
rachelraven Lentils make me gassy, but I tolerate red lentils better than green/brown/yellow ones. Apples do, too, but I did FODMAP and they're a trigger food for me. A slice or two is ok, though, peeled. Yeah, it's definitely trial and error. Also, try small portions of the offenders within a meal that doesn't bother you to see if that helps. Gassiness never bothers me, because I like that blast to help clear the pouch, lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegetables?
V *Valerie*Ann*
Scott F The intestine gets kinked when it twist or pulls around an area attached by an adhesion to the abdominal wall or another section of intestine. I suggest barrier cream *after* every BM, so there's no irritation from any seepage. [ more ]
tinyink Interesting! How does, or why does the intestine get kinked? Or, as you mentioned, does that really only happen with a narrow area? I'm going to meet with a dietician. I realize everyone is different and it's a lot of logic and trail and error, but I figured it won't hurt. absolutely! I actually use an ointment before the BM (I prefer A+D prevent) as a barrier, hypoallergenic wipes and hygienic cleansing lotion , a bidet and then after always apply Caldesene (corn starch powder with zinc... [ more ]
Scott F The blockages aren't really caused by particular food, unless you have a chronically narrowed area that tends to get backed up. Commonly the intestine gets kinked and then perfectly ordinary food becomes a problem, and folks think the food did it. Are you using a barrier cream after every BM? Most butt burn is preventable. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil vs. Konsyl
Scott FScott F
Former Member I don't remember hearing about Konsyl before. I never heard of it. I'm open to trying it. Metamucil is god awful stuff when it comes to taste. It's overpriced too even when I buy it as a storebrand at Walmart. Taking it in capsule form never works too, unless maybe you swallowed 50 of them. [ more ]
Scott F Aussie, I wouldn't suggest mixing psyllium into hot food. Among other things, it's likely to sit too long after getting wet. [ more ]
Aussie Can powdered Konsyl be mixed into morning oatmeal or other hot foods? [ more ]
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J-Pouch ForumsGeneral Discussion
10 YEAR J-POUCH REVIEW COMING SOON!!! ANY QUESTIONS YOU WANT ME TO ANSWER???
FM Former Member
Former Member I have not talked to you or scott for years. I am not going to respond to you or Scott anymore. This is my last response. Leave me alone. [ more ]
CTBarrister Having someone tell you that you are posting nonsense when you are isn't being rude, it's being real. [ more ]
Former Member I am not going to waste my time reading all of this. Just please leave me alone, you and Scott have been nothing but rude to me for years. I want you two to leave me alone! [ more ]
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J-Pouch ForumsGeneral Discussion
Intermittent fasting
D Dave1
skn69 Spooked, I have had a k pouch for 39 yrs...(only difference with a j pouch is just the exit strategy)... So I have tried pretty much every diet and eating method out there. My mom would jump on any fad that hit the media including the very dangerous 30day fast...took me along with her on every one. (Maybe she thought that one of them would "cure"me?) All I can tell you is the very best tool for figuring out what does and does not work for You is a food diary and a crash course in basic... [ more ]
Letlive27 I have tried the fasting protocols of the Snake Diet on You Tube. I did a 49 hour fast last week, but should have just kept going since it didn't really bother me. I just started another fast today and hope to make it 72 hours. I drink my electrolytes of potassium, magnesium (Epsom salt; food grade), and sodium (from baking soda & Himalayan Salt) in a couple of liter bottles a day. I mixed a pinch of cayenne and cinnamon in too. I sleep terribly getting up 4 to 6 times a night. I have... [ more ]
GrannyJ64 Valli, I have had my pouch for going on 16 years. I actually made no changes in my diet. I eat whatever time I want and still eat sugar and vegetable and fruits and even popcorn! I did not eliminate anything from my diet. I have had pouchitus a few times and have had blockage problems that were all mechanical not food based because I have problems with scar tissue from surgeries. I have had 3 scar tissue surgeries in 15 years. I have also always had complete control of my pouch. I have... [ more ]
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J-Pouch ForumsGeneral Discussion
Tissue Engineering
Epic ScotsmanEpic Scotsman
CTBarrister I am reading a book right now called "Next" by Michael Crichton. It's the last full book he wrote before he passed away in 2008. It's about the very issues discussed in this thread. Tissue engineering and transgenic experiments, including a transgenic chimpanzee (which are called humanzees) and a transgenic grey parrot. Like most of Crichton's books it is an interesting weave of science fact and fiction. Indeed, in true Crichton fashion the forward message to the book is: "This novel is... [ more ]
new2thisstuff Lou, It's interesting you say you got colitis after an accident. Same thing happened with me, three months after an auto accident (where the car flipped three times going about 60 mph on the hwy) i was diagnosed with UC. [ more ]
Laurie49 I believe some of us are born genetically predisposed to certain diseases. What happens in our lives in terms of diet, environment, physical activity, stress...etc., all contribute to what happens. Some with a predisposition will never suffer with it and others will. If autoimmune disease wasn't in our genetic make-up, we never would have had UC/Crohn's/Cancer/FAP regardless of car crashes, other illness's, parasites, etc. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone using Rinvoq
RondaCRondaC
Karenchase Chiming in late to this party. After a year of waiting for it to be approved in the US for Crohn's (my current diagnosis is post-colectomy Crohn's, not pouchitis) I started Rinvoq about 3 months ago (June 2023) and I started it only a few weeks after my last Entyvio infusion. I felt all right at the beginning -- nothing revolutionary, just not gross. Then, I think, the Entyvio started to wear off and I was having some pretty nasty symptoms -- wicked gas and bloating, and my butt was on fire... [ more ]
RondaC Yes I'm still happy with it. I still have a flare every now and then but I don't have any pain just liquid output. I definitely feel better. [ more ]
Angieb Hi Ronda its 2023so I’m pretty late regarding your post! I tried Rinvoq back in September 2022 for about 2,weeks however needed surgery so had to discontinue! I’ve started it again as of 3/28/2023 so too soon to kno! However would like to know if it’s still working for you! How long did it take to kick in! I too suffer from chronic pouchitis and nothing was helping [ more ]
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Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


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