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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 ForumsFAP Forum
For those wanting info on FAP and support
Jan DollarJan Dollar
Vonnie Thank you Angie! I will take a look at the book. [ more ]
Angie Wilson Thanks for the website. I found the book! It helped me a lot - not because it changed everything...but this guy truly has walked through this - his a Pharmacist and PhD and as I said- he goes through all the docs who just do not hear him - as if he is making his pain up. He didn't want opiates - he wanted help. Well, this guy didn't give up and the book is affirming. It is: "When There is No Cure" - subtitle "How to Thrive Wile Living with the Pain and Suffering of Chronic Illness" by Craig... [ more ]
Running on MT ❤️
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J-Pouch ForumsK-Pouch Korner
Master List of KP/Bcir surgeons
JaniceMJaniceM
amos Dr Schiller is retired. [ more ]
Kushami Updated after contacting surgeons: Quality Life Association has two surgeons listed in Melbourne, Australia. Mr Philip Smart https://www.drphilsmart.com Email from surgeon states: Can help patients who already have a continent ostomy, but does not create them at time of enquiring (2023). Mr Satish Warrier (Note: His name is spelled incorrectly as “Warriner” on the QLA website. It’s definitely “Warrier”.) https://www.epworth.org.au/who...or/mr-satish-warrier Waiting to hear back (The QLA list... [ more ]
Razorback Dr Robert Jacobson has retired and none of the drs that took his place know anything about the KPouch He was my Dr and was great. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and Wegovy/Ozempic
J juliemk3
kta I posted above after just starting Tirzepatide. It has now been almost 11 months and I have had no problems with the pouch. I did stop Lomotil because my gut slowed down, but have had no constipation or blockages. I have also lost 50 pounds. There was a bit of nausea at first. That is now gone. [ more ]
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 ]
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J-Pouch ForumsHelp! Need advice now!
dehydration
P Phil1010
Phil1010 You're correct, Scott, about coffee. Though a diuretic it still has water, as one med journal noted. Get this. In my third hospitalization a physician told me to drink no water at all. I was there, he said, because I had flushed all my sodium out with H2O. He advised any liquid but that: tea, soda, coffee, whatever, just no water. I rather swiftly ignored that, I do drink water and I still dehydrate but not nearly to a hospitalization point. Only the salt tablets have retained the water I do... [ more ]
Scott F Coffee is *not* “very dehydrating.” It is considerably less hydrating than water and most other beverages because of its diuretic effect, so it’s far from an ideal rehydrating solution, but it’s best not to spread myths about it. Some folks get dehydrated from drinking too little, some get dehydrated from losing too much (from frequency and/or poor water absorption), and some have a combination of these. It’s best to work out what’s causing a hydration problem before proposing a specific... [ more ]
Mary2017 Since you have dehydration issues. I would develop a plan on "How to drink more water". First: Coffee is very dehydrating because it is a diuretic. I would give up coffee but if you cannot give up coffee, I would drink a cup of water behind every cup of coffee to replace what you lost. I always put salt in my water to help me retain the liquid much longer. Maybe that can be something you can try? Drinking water: before during and after every meal will help as well. Drinking water behind... [ more ]
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J-Pouch ForumsGeneral Discussion
GLP-1 interesting mechanism
thumprharethumprhare
Sara Marie The article makes GLP-1 sound like it has a positive influence on many organ systems. What about removal of the colon creates this need? Also what weight problem are you talking about? Too much weight or too little? What would cause a doctor to prescribe this and does insurance cover it? Thanks! [ more ]
Sara Marie ❤️
thumprhare Read through my sausage fingers and auto correct errors. They beat me everyday! [ more ]
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J-Pouch ForumsGeneral Discussion
20 years trial error this is what I suggest
F FRH
Adventurecookie ❤️
FRH please my conversation has now turned into blockage discussions and hydration and suggestions that don’t relate to my first post. Either start a new conversation or help those with a different issue in the correct area of forum. For one thing cranberry juice is NOT the same as water for those experiencing burn. It is highly acidic and totally counteracts my suggestion and experience that took me a full hour to post here in hopes of helping others. Why bother! But now that I have to... [ more ]
FRH The conversation was started by me with my experience. If others have different suggestions or debate my help new conversations can be started to not confuse those wanting to continue referring to my experience. [ more ]
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J-Pouch ForumsGeneral Discussion
Website Question
R roseviolet
roseviolet Thank you for checking, Jan. Am hoping that Bill puts it back the way it was. It's hard to improve upon perfection! Or "if it ain't broke, don't fix it!" 😄 [ more ]
Jan Dollar I heard back from Bill J and it is indeed an update. He is still tinkering with it. Jan [ more ]
Jan Dollar At first I thought it was on my end too, since there had been recent OS updates on my devices. I agree that the new formatting is clunky. I will send Bill J a message about it and see what I can find out. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about a J-Pouch
J JPouchWannabe
FRH It’s so difficult to answer this. I have a J-Pouch 20 years and have had a lot of issues (rectocele cystocele and prolapse (all three) pretty miserable as far as what I’m able to eat. Irritation. Incomplete emptying. That being said I hated the “bag” and still can’t bring myself to go back to it even though doctors have said it might be better. I am thankful to feel whole again on the outside but the compromise is really having to watch my diet and to be frank it’s quite exhausting, no... [ more ]
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 ]
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J-Pouch ForumsGeneral Discussion
Abdominal gas
N Nancydiane
Jan Dollar It can take a year or more for your gut to adapt to the lack of a colon. Most gas is produced by bacterial action on undigested carbohydrates. Much of this is fiber. Some people find that probiotics are helpful. Others get relief with short courses of antibiotics. Avoiding foods that are most gas producing is another tactic. The main thing is that it is an evolving process, and the fact the it is always changing can be quite frustrating. I found that my function improved over several years. [ more ]
Nancydiane Thanks she is prescribing a medication to help with gas told me to not do psyllium too soon and.to use lomotil instead of Imodium. [ more ]
Mary2017 ❤️
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J-Pouch ForumsGeneral Discussion
Scared of Upcoming Ileostomy
JH Jen H
Scott F There are some folks who need lots of hydration with temporary (loop) ileostomies, but most have more reasonable needs. What is true is that without a colon we need to become knowledgeable about how our new plumbing manages fluid, and what tools work best for us to take proper care of ourselves and avoid dehydration. This is often a combination of strategies, but drinking enough is quite important. [ more ]
Sara Marie I didn't have the ORS but maybe it would have been a good idea. Currently, I make sure to have extra electrolytes regularly, especially when the stools are watery, but not necessarily every day. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
And the answer is ... rectocele and cystocele!
S SeattleJane
Mary2017 I learned something new. I would have thought the vaginal canal would need to get checked for HPV or STDs [ more ]
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 ]
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J-Pouch ForumsPouchitis
Has anyone ever had pouchitis turn back into ulcerative colitis?
O OscarThePouch
OscarThePouch Luckily nobody promised me this was the cure and they were very straightforward with me about what the risks are and the long term complications could be. I signed on to surgery because the risks sounded less bad than the severe case of UC that I had. I almost died from sepsis once from a flare up. The only regret I have is doing alternative medicine instead of proper medicine, which was tantamount to doing nothing for my illness which is how the sepsis arose. My UC dragged on for so much... [ more ]
AMB This chain has me thinking back. Many gastroenterologists used prednisone as first line and maintenance therapy for Crohn's and UC back when I was diagnosed, which was routine and routinely bad medicine for many years. The 5-ASAs were in clinical trials for UC, not super effective, and they came with probably under-reported liquid diarrhea - so what was the point? 6-MP wasn't commonly prescribed. It was so un-common that pharmacists would question me when I went to fill my script! So... [ more ]
Jan Dollar Back when I had my colectomy, Remicade was considered experimental (and not covered for treatment for UC). So, not an option at the time. I think the best solution is the one you can live with. Maybe the problem is that there is so much information to be had that it becomes a mine field. Hard not to imagine possible side effects as likely side effects. Some doctors are better than others at helping you sort through it all. But in the end, we are the ones that have to accept our choices. I... [ more ]
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J-Pouch ForumsOstomy & Skin
excision surgery
P Pouch2021
Mary2017 Oh that's amazing!! I am happy you gained 12 needed pounds. I love how you said needed lol. Be careful with working out with your ostomy, working out can cause issues like hernias so be careful. I use a ostomy belt at all times. I love the wrap idea you mentioned So happy your well dear!! Why did you have to get your pouch excised? [ more ]
n/a Hi - I had my jpouch removed in '18 (1 year after it had been disconnected). I posted my experience with the removal at the Cleveland Clinic, if you'd like to take a look at it. https://www.j-pouch.org/topic/...al-date-and-time-set . The Cleveland Clinic team was just great. I did travel about 2-1/2 hrs to have the removal done there, and while travelling did have its inconveniences, I felt the Clinic was well worth the trips. I'm doing well with my end ileostomy, it's so nice to feel good... [ more ]
Mikah the Bike Lover ❤️
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J-Pouch ForumsHelp! Need advice now!
Intense Overnight Gas, almost no matter what - Please help!
V VHDan
Mary2017 I honestly think that gas is going to be a part of our lives. The colon absorbs gas so since the colon is gone- were always going to have extra gas unfortunately. I think its just a matter of accepting. What helps my gas is Maalox, its treats painful gas too! https://www.webmd.com/drugs/2/...alox-ms-oral/details [ more ]
scallop Of the foods you mentioned I only eat broccoli and occasionally teeny amounts of cauliflower but I might as well give beano a try. Thanks! [ more ]
Scott F Not all fiber is created equal. When I eat broccoli, cauliflower, cabbage, Brussels Sprouts, etc. I *always* take Beano to reduce the gas. Gas can fill up a pouch pretty easily, and then there’s no room for poop. [ 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
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 ForumsHelp! Need advice now!
RV Fistula
C colitisfree
Andreita I'm currently dealing with a RV right now. I'll have my J-pouch excised next week and get a permament ileostomy. [ more ]
Doug K Dr. Remzi is a super surgeon and a great guy. He has an enormous amount of experience. He did all three surgeries for me. I would recommend him. [ more ]
Mary2017 I am sorry you are going through this! I would strongly recommend Dr. Remzi [ 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 ForumsOstomy & Skin
J-Pouch Issues - At what point did you decide to go back and get a permanent ostomy?
Mikah the Bike LoverMikah the Bike Lover
CJR Caty, Thank you for sharing your story & experience. I am in a similar situation and symptoms. J pouch was fine until last few years, but now never out the loo, pain and lost a load of weight, restricted diet....I miss all food so much. Time to make a series decision. God bless you [ more ]
Mary2017 So happy to hear that! Thank-you! And your welcome! Anytime! [ more ]
Kushami ❤️
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J-Pouch ForumsFAP Forum
Blood test for fap when to make it
BorislavBorislav
Mary2017 ❤️
Mary2017 Wow, thank-you for sharing this story! That sounds very traumatizing! I am sorry to hear all of that. I am glad you got your colon/rectum out, I hope your kids will be okay. [ more ]
Lana I have FAP and I may be the 1st in my family. I am 61 yrs old but had j pouch surgery at age 35. My kids were 17 & 13 and because the genetic doctors could not identify the gene at that time, my kids had to have upper endoscopy and colonoscopies. Neither had polyps. The doctors recommended repeating these tests in 5 years, etc. I just had genetic testing this year and they identified the APC gene that causes colon cancer along with 2 other cancer genes. My kids got testing and neither of... [ 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 ForumsHelp! Need advice now!
Going from J pouch back to ileostomy
JM Jim M
LORI726 That makes a lot of sense. I might have stayed there for a year if I had that many bowel obstructions! So painful. Glad things are improved now! That is no way to live. [ more ]
duck11 No major complications, but I did have an endless ileus, my guts took almost 4 weeks to wake up, but I think my surgeon, whom is nothing short of a hero to me, kept me in to save my mental health given where I came from going into that surgery. I had over 45 bowel obstructions in 2-3 years and so so so many ER visits and hospitalizations, dismissals and even hostility from other health professionals who weren't skilled or knowledgeable enough to diagnose my rare problem, accusations of being... [ more ]
DanniO ❤️
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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 ]
See all 12 replies...
J-Pouch ForumsPouchitis
Medication for pouchitis or another type of bacteria infection in the pouch
A Alice
Indiana Just to be clear we can get it in Oz but not on the Public Scheme for pouchitis so we would pay private prices which is $466 for 56 pills. [ more ]
kta This is an old post, but I wanted to add something. I get my Xifaxan from Israel Pharmacy. There, it is called Hepazek. It costs about $200 for 30, 550 mg tabs. Well worth it when I need it. My concierge doctor turned me onto this pharmacy and they are very good. [ more ]
Former Member ❤️
See all 17 replies...
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 ]
See all 4 replies...
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 ❤️
See all 3 replies...
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 ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Partial blockage
B Brellis
SeattleJane Hi, Has your doc ordered a simple CT scan of abdomen/pelvis with IV contrast yet? Maybe that was part of the hernia work up - I know nothing about what's involved with that. The value of the CT scan with IV contrast is it shows if you have a partial blockage. You could call your doc on Monday and ask they put in an order for that diagnostic. Or, if you want clarity sooner, a trip to the ER might be in order. The ER admitting folks just need to know you have a j-pouch and are afraid you might... [ more ]
Mysticobra Sorry. That sounds serious. E. R. trip? I know when one is coming even if it's partial. But I have an ileo. I ate some leftovers yesterday. And everything I ate has a tendency alone to cause one. So I only had tiny portions of each. Chewed well. Drank a lot of water. It started anyway. But I got lucky. Been 16-17 hours since I ate. 4-6 after I knew. Couldn't find mirilax. I use a tad. Not a cap full. Works just as good. So I put a heating pad on high on the bulge for five hours. Having an... [ more ]
Brellis Im afraid that this never will solve by itself and my mind starts to think catasthrofic thoughts and just feel so sad… the buldge is still as much as it has been for a whole week now. The left side of my stomach is soft and the right side with the buldge is much more tense and swollen.. [ more ]
See all 13 replies...

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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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