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J-Pouch ForumsGeneral Discussion
DO NOT POST PRIVATE INFO!
Jan DollarJan Dollar
NickM ❤️
Maverick Plus ❤️
Suerte Recently some of the surveys are way off topic of J Pouch. As an example today I received an Email and the survey wants to know at what age did I hit menopause? This has nothing to do with J Pouch and is limited to only those who are female by birth. Surveys like this are a waste of time. [ more ]
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J-Pouch ForumsGeneral Discussion
Too many emails? Change your notification settings.
Jan DollarJan Dollar
Jan Dollar Do you want your member profile completely deleted or just edited? If just edited, you can do that yourself. But you cannot change your screen name. As a moderator, I can do that (just tell me what you want to change it to here or send me a private message). That will also change the screen name on your past posts. I can also delete your profile if you want. If you change your mind, it cannot be restored. You will have to register again. Let me know. Jan [ more ]
Former Member How do i completely remove my info from the internet involving the internet [ more ]
Former Member Hoe do i remove my profile totally from the internet [ more ]
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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
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
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
And the answer is ... rectocele and cystocele!
S SeattleJane
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 ]
FRH I have both for 20 years. It is a closure or partial closure if the rectum making it difficult to pass. My opening is very tiny and I also ended up with prolapse but for mine to be fixed due to my anatomy would be too risky so I live with it rather than going back to the outside bag. read my post in general discussion how I manage (the best way I can). You may have better luck with ability to have fixed as we are all different. But there is a balance between fiber, types of fiber (psyllium)... [ 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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
Dr. Ashburn vs. Dr. Dietz
S scallop
Pouchomarx Dr Dietz was at Cleveland Clinic and then with University Hospital in Cleveland. When Dr Remzi left cleceland he said if i ever needed a colorectal surgeon he would only recommend Dr Dietz. Well Dietz has now left Cleveland and is at NYU Langone in NYC. Remzi left Langone and went to Northwell. I also had Dr Shen as my GI in cleveland and they have all left me and it sucks as they are all best in their field for jpouches [ 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
Exercises
LyssicoleLyssicole
New577 Yes they can order PT to help the pelvic floor. i never did the therapy due to wait list constraints. however, my pelvic floor did recover on its own after about 9 months. i also take Imodium 3x daily to slow things down. and it works for me most of the time. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation or Partial Blockage?
I itaintraito
itaintraito Hi @SeattleJane . I'm sorry to hear you're in what sounds like a boat similar to mine. It hasn't been fun for me so I can only imagine what three months of it has been like for you. I'm doing about the same as last time I posted but have stopped skipping dinner; I can't imagine that was doing me any favors. I also still couldn't really help but take MiraLax out of what I guess must be an abundance of caution. Tripling water intake sounds like a reasonable idea. I've started to think water... [ more ]
SeattleJane Hi, @itaintraito - 18 years ago I had a colon resection and jpouch surgery to remove most of my large intestine due to polyposis (not FAP, just 40+ polyps discovered at my first colonoscopy, go figure). After 16 years of managing diarrhea, for these past 3 months I have been managing constipation. It's quite the unexpected change. I drink Miralax daily, use an enema as needed, sometimes take senna or dulcolax, and probably most importantly, have tripled my water and liquid intake. I have... [ more ]
Sara Marie ❤️
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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
Pouchoscopy.
RenReevesRenReeves
SeattleJane @RenReeves I am sorry I can't help with any reasons why you would be experiencing back pain after a pouchoscopy, that's a new one and I'm sorry you are going through that. But as to the drug reaction, it would be helpful to send a note to your doc's office about your reaction and/or to tell the anesthesiologist before your next scope so she or he can adjust the dose or try a different drug. As for PTSD reactions - you have my sympathy. I was initially so terrified of the first few... [ more ]
Jaypea I'm sorry you have such bad PTSD. I had a pouchoscopy last year and needed no sedation. It is not comfortable but compared to what I have been through absolutely tolerable for the brief time they are having a look. Like you said it only takes a few minutes. I breath through it, say "ouch that's uncomfortable" when they inflate the pouch and by then it is usually done. Unfortunately anything used for sedation has side effects that generally last a while. Plain propofol wears off extremely... [ more ]
ytcrockpot I take nothing for my pouchoscopy. The very first time after my surgery 40+ yrs ago they gave me some type of anesthesia. But after that nothing. I’m in and out in less than an hour. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Excessive gas,bloating
K kentuckyboy
Sara Marie Hey @ nocolonstillrollingbb , Can you tell me more about "Heather's Tummy Tamers"? They have a lot of products. Which ones do you take? Also what do they help with and how often do you take them? Thanks! [ more ]
nocolonstillrollingbb I had AWFUL gas for the first 4 months. I think I have a post about it lmao. I'm talking about 100+ 2-5 second long farts a DAY. Low dose probiotics, a low fiber diet, and 2 pills 2x daily of heather's tummy tamers, 2x beano with every meal, and 1 extra strength gas x with every meal, have solved most of it for me! It took a LOT of trial and error. Here were the list of things that I tried before I figured out what worked for me: - Blood work - Pouchoscopy - Low FODMAP (didn't work for me) -... [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
J-Pouch Sleep Difficulties Group
G 97Guy
lclassen ❤️
97Guy That works better! [ more ]
Jan Dollar May I suggest that folks PM you with their WhatsApp number? Public posting of info like that invites spam (or worse). To send a private message just click on a member’s screen name to get to their page. On the right there is a list of options, including “Start private message.” Just click on that and you can converse privately. Thanks! Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
IgG supplement for gut health?
SM Sara Marie
Jan Dollar Yes, Sara, that is my interpretation. If there was something very clearly beneficial, it would be big news. Most of what I read indicated it as helpful in some cases of C. difficile. Most pouchitis cases are not C. diff infections (thankfully). Jan [ more ]
Sara Marie Thanks, Jan. I hope so too! Guess it's nothing to write home about or we would have heard more by now. [ more ]
Jan Dollar I have never heard of IgG for gut health, so I had to look it up. Usually, IgG is given IV or subcutaneously. But, in this instance, it is an oral supplement. Even though it has been around for years, it does not seem that there are clear indications of efficacy. I am not sure how it survives digestion. Like probiotics, perhaps it is a mixed bag. Hopefully, someone with some personal experience comes along. Jan [ more ]
See all 4 replies...

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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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