Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
Age
BA Bill A
Doug K Hi Bill A, There are lots of tips about lowering frequency a lot. Anti Diarrhea meds, fiber, antibiotics, anti motility, and physical therapy. Taking the JPouch out is certainly a big move. Many people are successful at it, but it’s a big deal. I would try to improve the function to the best of my ability first. Best of luck - Doug [ more ]
Scott F Bill, I don’t know what this surgeon might or might not have observed, nor what sort of history you have with this person. I wonder, though, if this is one of those surgeons you should run like hell from. At the least it might be time to switch to a good gastroenterologist, who would recommend a consultation with a surgeon if the need arises. I don’t know what you’ve tried, if anything, to reduce your daily toilet trips, and you didn’t ask about that. We’re here if you could use some ideas. [ more ]
Bill A Thanks for replies. I did not know it was difficult operation. Surgeon simply argued at my age it was wiser. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Mild Chronic Pouchitis
HE herb ear
Scott F As CT said, it’s not that biopsies are always irrelevant, but a biopsy that shows mild inflammation in a pouch that both looks and functions well is not worth paying much attention to. It’s a common finding that typically doesn’t lead to anything worse. [ more ]
CTBarrister Herb: biopsies that show some mild inflammation are irrelevant. I have had a J Pouch for 30 years and have had 30 years of biopsies showing inflammation. Unlike you, however, my inflammation is visible on scope and needs to be treated. A biopsy that should worry you is the one that shows dysplasia in your rectal cuff. I presume they biopsy your and everyone else's cuff on scope because that is the only colonic tissue in your body and the place where a cancer is most likely to start, although... [ more ]
herb ear I really respect your opinion as I have read your posts over the years. Why are biopsies irrelevant? [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Rectal pain
L Lscrabble554
Chopkins Lscrabble554 This sounds very much like cuffitis. I have had this a few times along with pouchitis. My doctor prescribed Proctol for the cuffitis and an antibiotic for the pouchitis. Hope you feel better! [ more ]
Andreita They had left my rectum in and I insisted it was a bad idea. He left it in disregarding my protests. I had a redo where they completely removed my rectum and reattached my still viable jpouch to the anal canal hand sewn [ more ]
lindaslankard I had J pouch in 2011. I have rectum pain almost 24/7. I have to sleep sitting up. Pain meds doesn’t help the pain when it’s the worst. It burns and spasms right up inside rectum. I cry and cry it hurts so bad. I Stan in shower and hold shower and run water on me to wash my rectum clean. This helps if I dry and go straight to bed and pray I don’t have to get up. I take cipro morning and night just to be able to endure this pain and life. Anyone else have these symptoms? [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Help with hemorrhoid problem
D daviwyat
Kangaroo I find Ilex paste is the best to stop the itching and burning. Also, bath salts intended for hemorrhoid relief help a lot with the discomfort. [ more ]
New577 Just as a follow-up, I find two products to be helpful. 1. PrepH (or Walgreens/cvs brand) cooling gel. Straight up prep h is worthless for me. 2. Desitin brand cream. Highest level of zinc oxide and seems to work quickly. [ more ]
daviwyat Thanks [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Remove JPouch
Z Zeninu4
Zeninu4 Thanks Scott. Good information to know. [ more ]
Scott F The rest of your GI tract doesn’t really have a microbiome at all. It’s not perfectly sterile, but neither is it the bacterial playground that a healthy colon is. Okay, the first part of the GI tract, the mouth, seems to have an interesting and important microbiome. I’ve been on antibiotics continuously for about 14 years. Since one of them is Cipro my tendons and aorta occupy vastly more of my attention than my questionable GI microbiome or the real-but-much-less-important antibiotic... [ more ]
Zeninu4 Thanks Scott F and ScottG. I was thinking of long-term A/B use on the rest of my GI tract, not the pouch. Good idea to revisit the insurance company. Appreciate the suggestions. [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
In the hospital. Nothing is working
B Bandy
Frustrated Hi Brandy. Have you tried smooth orange metamucil with real sugar? I love it, turns liquid poop into thick soft tube poop. Only way i can describe lol. Take it with less water than it calls for, then it will absorb your food, stomach acid etc. Ive heard metamucil bars are good too, but i havent tried those yet. The key is to take it 2 to 3 times a day, and use immodium with it, then you might get some overall relief. I only take 1 to 3 immodium all day, usually 2, 1 in the morning and 1 at... [ more ]
Sara Marie Have you read "Listen to Your Gut" by Jini Patel? Totally great information on things to try when managing your condition if western meds haven't worked for you. [ more ]
Spollyk Hey Scott, I have a open prescription for Cipro and flagyl! It does not work for me and makes me sick and mentally violent . I take them and lock my bedroom door. I hate it and will not take it. When I was sick, the only medication that “helped” temporary was IV prednisone and I hate what that crap does to me too. I took Immoran for a short period and woke up behind the wheel in a farmers field , my body doesn’t do medication! So really , it’s not easy to manage at all. [ more ]
See all 42 replies...
J-Pouch ForumsHelp! Need advice now!
Psychological or something else?
ValenValen
SteveG That 'unfelt' stress was part of a documentary I saw on TV some time ago. They had people living in a city and others living on the countryside have a simulated job interview and measured stress indicators. While both groups said from their own impression that they did not feel much stress during the interview, those from the countryside had significantly lower stress levels. That difference was blamed on bacteria of the bowel's microbioma which enabled people from the countryside (because... [ more ]
Valen @Mysticobra Yes! That ‘Unfelt’ stress is really obnoxious. I’m in therapy right now, which helps, but it’s definitely a work in progress. Is there anything in specific you did to find the root of your issue? Or ways to cope until you can? [ more ]
Mysticobra I agree with the stress speculation. Even when what I call "Unfelt" stress is present. Things like doing everyday things. Going to work. Just Unfelt stress. I know for a fact stress was a big factor with myself. I could go into it. But I won't. Well. A little. Once I got rid of my problem all the stress I felt there was gone. I cannot say it was for anyone else. Richard [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Nighttime Incontinece
BE Brad Epps
Frustrated I highly recommend combining metamucil and immodium. You need to slow down your intestines and use metamucil to help absorb the liquid and stomach acid. Experiment the right amount for you. I take 2 heaping teaspoons first thing in the morning with 1 immodium. I add 2 to 4 capsules of metamucil with everything i eat drink that isnt water. Immodium 1 hour before bed time and make sure you go to the bathroom a couple of times before bed. This should help. Also take a gax reducer like gasex. [ more ]
Maverick Plus Gas-x at night helps me. [ more ]
Mrs P Hi Brad, I am so sorry you’re having these issues. I have had the same problem in the past. It is awful. my GI Doc prescribed Xifaxin 3x daily for 28 days. It is expensive but there are manufacture coupons out there. That has helped. More recently I took Budesonide 9mg every morning for several months. That seemed to do the trick! I also take VSL #3 probiotic 2x daily and eat Metamucil wafers daily. As of right now ( knock on wood) I have not had a nighttime accident for a few months which... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
getting fiber right
EI Eric in Seattle
Frustrated I went many years not taking anything, and i had a lot of accidents and butt burn. Forced me to find a solution. I take 2 heaping teaspoons in roughly a 1/4 cup of water every morning before coffee or breakfast. I supplement with 2 to 4 metamucil caplets every time I eat or drink anything except water, throughout the day. In the morning and an hour before bed, i take immodium. Result is no butt burn, poops that feel normalish but soft, and sleep through the night most nights. I still have... [ more ]
Sara Marie Eric, It's funny, I have asked this group if anyone else squeezes their pouch like a tube of toothpaste (or a tube of anything!) and nobody else copped to it. I think I read recently about one doctor recommending something like this, a Dr. Shen, who is highly regarded by some members of this group. I have been doing that pretty much since I got the pouch in 2004, mostly because I didn't have time to wait for the poop to simply drop out of me-especially at work. School teachers barely have... [ more ]
Eric in Seattle Thank You So Much! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Will I ever not be aware of my intestines?
BrigitteBrigitte
Chook2 When I first had my takedown I thought of the movie Gremlins.as there were rules to follow like not eating after a certain time or certain foods or else the calm mogwai jpouch became full of gremlins. [ more ]
New577 Oh yes, I forgot to mention gas-x. I take it three times daily and it has eliminated 95%+ of my gas. [ more ]
Maverick Plus I take gas-x before bedtime, and that helped a great deal. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
VSL#3DS
G GraceB
GraceB Thanks for responding, I will look into the ones you mentioned. We need to have a less expensive pro biotic for all. Thanks for responding. [ more ]
AnthonyA Sorry, I have been looking around too and can't find a cheaper alternative. I can get VSL3 / VisBiome / Vivomix all at £45 for 30x 450B CFU. There are many others that actually work out much more expensive per billion CFU, e.g. Klaire Labs. In fact, looking at the price per billion CFU, the three above are the cheapest that I can find. I would also be interested in cheaper. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Chronic Pouchitis - at what stage do people seek treatment?
A AnthonyA
Katkando I was wondering if anyone has had the opposite? I’ve had a Jpouch 18 years and I’ve had pouchitis a few times but the last few days I can’t go at all! Very uncomfortable and scary after spending so much time always going. thank you [ more ]
AnthonyA Thank you, I will look into those two as well; never heard of them. Glad you have had such great results :-) [ more ]
BK 123 Hi Anthony. I've had chronic pouchitis for the last 1.5Yrs and there were long stretches in the "C" category. About three months ago Dr. Shen prescribed me Tinidazole, an antibiotic, which I am on long term. I was wary about it losing efficacy so I spoke to his nurse who ensured me that they've had patients who have had long term success with the antibiotic. My other GI doc put me on Humira about the same time. It's like a light switch has been flipped. I went from having urgency and nightly... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Bowel blockages and Doctors
BB Burning Brian
duck11 Oh I feel this, vent away. I was the “mystery bowel blockage” person too for two years of hell, back and fourth to the ER, unable to eat, etc. Doctors sometimes would say “maybe it’s a blockage”, and other times it was exactly what you got or being told it’s in your head, or worse, sometimes accused of being a drug addict. Anyway, long story, but after 2.5 years I accidentally found a surgeon with compassion who, only going in a hunch that my j pouch wasn’t functioning, operated and... [ more ]
Brigitte Go to a different hospital [ more ]
roseviolet Brian, does your insurance allow you to go to any hospital & doctor or are you locked into a medical group? If you can go to any hospital, go to UCSF emergency at Parnassus and they'll figure out what you need. If you're locked into one medical group (for example Sutter), you'll probably need some sort of authorization to go to UCSF or you'll get stuck with the bill. You need medical help now, as vomiting is serious and can bring on dehydration. -- Rose -- [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Dr. Bo Shen- director of the IBD Center at NYP/ Columbia.
E ET_RN
Mcalen I am also wondering if he did have consultation with overseas patients during the pandemic as the patients couldnt travel due to restrictions, if that would also be possible if someone cannot travel due to his physical condition(?) [ more ]
Mcalen thank you have opened the link and searched for "pouch" or "shen" but this returned no results on past events. (?) [ more ]
Kim S ❤️
See all 11 replies...
J-Pouch ForumsPouchitis
Visbiome
D. JohannanD. Johannan
Mcalen Thank you for the reply Scott. Would also like to understand more about this. [ more ]
Scott F I have read the claims of an association between probiotics and SIBO, but on balance I think they are likely to be incorrect. There’s certainly no published evidence of this that I’m aware of. I’ve also heard that Dr. Shen doesn’t put much stock in probiotics, but I’ve also read the articles that show some benefit, and (as best as I can assess) found some benefit for myself. I’m not sure why he came to his conclusion, but if I ever see him I hope to discuss it with him. His ideas are likely... [ more ]
Mcalen Hi Scott I also take a high dose of Vivomixx every day for some time now. Have you heard about the possibility of developing SIBO from taking a high dose of probiotics for a long time? I ve read from another patient who claims to have developed SIBO from high dose of Vivomixx (I think 2 sachets of the 450bln strength) taken for a long time, and I ve also read that Dr Shen advises that probiotics are good for the long intestine and I havent read from any of his patients that he advises on... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Butt burn
R RodD
BarbieG RodD, welcome to the “club”! Butt burn is normal until you find what works for you. This site has been very helpful, use the search tool. I’ve had my Jpouch 37 years. Recently I learned that Preparation H w Lidocaine mix w reg Preparation works great for the burn. I purchased a bidet a few years ago. It helps but if you don’t have one just use a squirt bottle to rinse afterwards. I use white washcloths to dry. Taking Epsom salts baths, there are scented ones, really helps the most! Have a... [ more ]
RodD Have you ever experienced an urgency to go but there’s nothing there [ more ]
Scott F Hopefully your GI will have some sense of what’s going on. Pushing on an empty pouch will just lead to problems. At 5 months in plenty of J-pouchers are still adjusting, What things are you doing besides Imodium? Have you tried psyllium fiber (Metamucil)? I used that from the very beginning, and it helps me. Have you tried gently delaying bathroom trips to gradually “stretch the pouch?” What ointment are you using? Even plain zinc oxide applied after every poop will begin to allow external... [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
enterocutaneous fistula
M Momma
New577 10 days after my first takedown, my surgeon removed my staples. 6 hours later my undetected fistula started draining feculent matter thru the wound. thank god I went the ER where the CT scan revealed the fistula. (I knew something was up, because day after first takedown I could feel the flow of my intestine right under the wound. Surgeon ignored my concerns.) anyhow, I had emergency surgery and surgeon told me and my wife that I could wind up with a permanent ileo. The surgeon managed to... [ more ]
TONY LAVICTOIRE Thanks for your input Akteacher! It's hard to find info on the web and your experience is so valuable to those like me who are trying to navigate thru this. I agree, I definitely wouldn't risk losing the pouch over something that's not yet an impediment to my quality of life! [ more ]
akteacher I still have my fistula. I don’t let it stop me. I live by the ocean & go in frequently. I don’t cover it when swimming. Mine doesn’t ooze too often, so I only cover it with a folded tissue. I can’t handle the tape. I was not able to do the hyperbaric oxygen treatment as insurance did not deem it necessary (wish they had to live with it, let’s see what they would). Dr. Shen told me it would be denied & once they denied it his office would resubmit. However, Dr.Shen was in the process... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
J-pouch update! 3 yr anniversary since surgery
K Kh1988
Kh1988 You’re so welcome! Glad I can help ❤️ Yes, the butt burn definitely gets way better as your body adapts and your bathroom visits slow down. I’m a huge salad lover too so being able to eat it is a huge deal. You’ll have to keep me posted on your journey! 😊 And if you think of more questions, please feel free to ask away! Kelsey [ more ]
Kerrymareee I'm really glad to hear about the butt burn part. If that goes away I'll be very happy And I'm happy to hear I can have my salads! I don't have anyone I can talk to about this stuff so I'm glad I found someone who can answer my questions. Thank you so VERY MUCH! [ more ]
Kerrymareee ❤️
See all 8 replies...
J-Pouch ForumsPouchitis
Do you go to your Surgeon or GI when you have Pouchitis?
LR Little Rain
New577 My university hospital GI doc is my long term go to doc. While my surgeon handled the initial post surgical aftercare, my GI, who recommended surgery is tasked with all ongoing aftercare. while my surgeon would be willing to perform scopes as needed and consult with me, I do not see him having a role in dealing with pouchitis, cuffitis, etc. and I am sure he feels the same. [ more ]
Sara Marie Hey Maverick, I did try that. It did not yield good results. I may try again. I have a different primary doc now. I also looked on the internet for my city and landed on one that seems like she might know some stuff. I thought about asking my primary for a referral to her. There just might not be any good J-Pouch follow-up docs in my city. As more rich people move here, we may get better medical options. Of course, like many things, those services may only be available to the rich. [ more ]
Maverick Plus I found a great GI doc with a recommendation from my primary care provider. You might want to ask your regular doc for a recommendation. [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Anotherday, another question: how long did it take for your pouch to mature?
R readann
Maverick Plus It took me about 2 years to get to my new "normal". [ more ]
skn69 Hi ReadAnn, After over 40 years I can honestly say that it is never, ever the same from day to day and month to month. I recently had dental surgery for my wisdom teeth...a 9-day run on antibiotics. I am down to 4xs day which has never ever happened to me before! No urgency or gas. It has been since May and nothing has changed...does that mean that I had low-grade pouchitis? I don't know. I do know that for now, I am enjoying the freedom that not having to intubate 8 or more times a day... [ more ]
readann Thank you! I really, really, REALLY appreciate you answering all my questions on here. You're so kind! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
New to Group - Have ??s
CP CVille Patient
Pouch2021 Hi Kelly, All abnormal labs are not created equal. I wouldn’t worry about the Cl, BUN or AST unless the AST is persistently and significantly elevated. Sounds like the eos have improved to the point that is reassuring. I agree the O&P is less likely to be illuminating but it’s part of the work up. Most of us had O&Ps done in the course of IBD as GIs have to consider infection as a cause of IBD symptoms. The hematologist checked because of the eosinophilia. Helminthic (worms)... [ more ]
CVille Patient Yep. Kinda what I thought. Got a MyChart message from the hematologist & she thinks his labs have corrected enough to push to a 6-month recall. 3-day stool isn’t back yet but said if it shows ++ for parasites, go to GI. I asked her why his hemoglobin & RBC would constantly bump along the bottom (this time low, next just above). And if we correct this issue, might he feel better? If so, how do we fix it. I know they don’t want to hide any real issues but —DANG — he’s giving up on... [ more ]
New577 I don’t think anything will show from a parasite/ova test. Way back when(30+ years) my issue was only IBS, my first GI doc performed this test just to rule it out as the issue. When I switched to another GI a few years later, new doc performed test again just to rule it out. I have never had that test again. It’s a shot in the dark kind of test. [ more ]
See all 29 replies...
J-Pouch ForumsK-Pouch Korner
When you change your stoma covering…
R readann
skn69 I used to use just a folded-up kleenex but as years went by I developed a crook in my valve which holds stuff after intubation. That means that around 10-30mins afterward it pushes out the stuff. A bit of output, a bit of mucus, a bit of whatever...I am no longer scared or shocked. I use a 1/2 of a minpad stuck to my undies and a folded kleenex against my stoma. The minpad stays on for 24hrs unless there is a lot of stuff coming out, the kleenex gets changed as needed (usually after each... [ more ]
readann Amazing detail; thank you. [ more ]
kaydbird I have mucous most times, some days it is saturated, some days not so bad. Sometimes thick, sometimes thin. I haven't figured that out but I guess I don't care enough to try I only change my stoma cover when it feels overly wet cause that will cause skin problems. Sometimes there will be a tiny amount of blood. The stoma is highly vascular so it bleeds very easily and can get dinged by the catheter. I wouldn't be worried unless is it was more than a few drops. I have very rarely had a small... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
The side holes of my catheter is causing my stoma to bleed. Help!
R readann
readann Thanks! My surgeon and I figured it out. [ more ]
skn69 You might also want to file down the edges of the holes...they can sometimes be rather rough! Just use a standard emery board or a fine sandpaper...double-check them for sharp bits. You can also boil them but it works less well. Sharon [ more ]
readann Thanks! My surgeon scoped it today. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
“You have to drink more” Really?
Y ytcrockpot
SteveG If you don't get what you are looking for, perhaps you should ask yourself what is really bugging you. It's surely not that innocent advice of your friends, that is only a trigger. [ more ]
Mysticobra I don't get tired of being reminded. Lol. No one does I get tired of carrying bottles of water all over. That's annoying..... Richard [ more ]
ytcrockpot Wow this post did not get the responses I was looking for. Wasn’t looking for hydrating advice. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Prep for scope
LoriBLoriB
WillLive4ever Thx Bill, that's what i do but its good to get that confirmation from others. I am going to have a talk with this newest doctor so when they schedule it the staff and nurses understand as well. Thanks again. [ more ]
BillV The only preparation for a scope exam is ti stare clear liquids at noon on the day before and flush the pouch before leaving home and then just before the exam until the output runs clear. No laxative is needed since the small intestine will empty itself completely during this time. No sedation is needed since the exam is painless. I always look at the same monitor that my doctor does and ask any questions I might have, I also ask to get copies of the pictures taken during the exam. [ more ]
WillLive4ever Older thread but after having a lot of providers that don't know what a "BCIR" is let alone how it does change the way certain things are done. I am hoping someone with a BCIR or Koch pouch might see this and share the typical prep before a scope of the pouch. They even try to sedate me so you can imagine. Thanks up front. Oh, and what is the reason we don't drink the laxatives? Its dehydration and fluid loss right? I've had this for so long i am refreshing my protocol so it does not get... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Entyvio
JA Joey A
Joey A thank you! [ more ]
CTBarrister The reason why Entyvio is sometimes favored as a second choice after the failure of Remicade is that it's mechanism of action is completely different from Remicade. I have never developed any antibodies to Remicade and still use it, but need to supplement it with antibiotics. I developed a stricture when I went off antibiotics and now I am back on. I am told that Entyvio is my backup plan if Remicade at some point is deemed to have failed. [ more ]
Scott F It can seem like a good idea to get two opinions instead of just one, but in many cases it can just make things more unsettled and anxious. Your GI is probably more aware of the trade-offs between biologics, but the choice will usually be partially arbitrary. I think I’d go with the GI’s advice - Entyvio is a fine thing to try, and if it turns out not to be right for you you can try a different one. The surgeon has taken good care of you for a long time, and it can be hard to give that up. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch daily maintenance
S Susan 1000
Susan 1000 Kerrymareee, it really does depend on the person. I’ve read of many people who can eat anything at anytime, but I never could. You’ll just have to try different things and see. Most of the people in this group have had issues of various kinds. The people that don’t have issues usually aren’t drawn to be part of a group like this. I do know that what you can’t eat easily for the first few weeks or months can change, and you can eat them later. I hope you do well. [ more ]
Kerrymareee Thank you for your information. Honestly I didn’t know about the fruits and vegetables causing butt burn. Is is something we can have in moderation? I’ve read many people saying they can eat anything so I assumed that meant vegetables and fruit. It’s been 10 weeks since my take down so I’m just trying to figure things out I thought I could eat salads after my ileostomy was gone. [ more ]
Kerrymareee ❤️
See all 5 replies...
J-Pouch ForumsPouchitis
Diet: Do you find that certain foods trigger pouchitis or other reactions?
H HappyGilmore
SteveG Roseviolet, for me it's the other way round. I have hardly ever typical allergic issues. There were only about 3 times in my life that I had an asthmatic reaction to red wine (rattling respiration from bronchial slime) and only occasionally reddish spots of the skin (at the legs) that are not even itchy and get darker, vanishing after some days. But if I take into account many of the singular experiences of my IBD history and the foods I avoid - at least to some extent - naturally by now... [ more ]
Chook2 Scollaps are high in protein and low in fat plus have magnesium and potassium.they go with mash potatoes, curries ,burgers etc.peru seems to produce alot of them. [ more ]
Sara Marie I have never heard of natural msg. The synthesized one gives me terrible headaches. I'm learning so much! [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Anal Stricture and Pouchitis
A Aray
Scott F Lots of people do self dilation, typically to maintain the opening rather than enlarge it. This only works for strictures at the bottom of the pouch (the outlet). Pouch inlet strictures require a medical professional. [ more ]
Aray As bad as it may seem, after a dilation, is there a way to periodically dilate yourself? I asked the gastro doctor which comes first the stricture or the pouchitis. He said pouchitis causes the stricture. I just know after the dilation there are immediate results. I’ve also tried to change my diet, Whole Foods, no sugar, will see if I can stick to it and if it helps! I appreciate your responses. Your experience and opinion have helped a lot of people on this forum! [ more ]
Scott F It sure sounds like your stricture may be tightening up pretty quickly after dilation. The good news is that your doctor is being gentle. The bad news is that you’ll probably be visiting that procedure room again. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Macrobid (Nitrofurantoin) wreaked havoc on pouch
O OscarThePouch
Scott F This sound miserable, and I’m sorry you’re going through it. Is it possible that the contaminated water led to a GI infection (in addition to the UTI)? Is there anything known about Macrobid that makes it a particularly bad choice for J-pouchers, or was this just one of those unusual side-effects that we risk with every medication? I’m really not sure that the GP did anything wrong. [ more ]
Sara Marie Gina, I hear that. I have had the opposite experience; many years of unhelpful western management! And I do think that eastern medicine works better for me, or at least I have had good practitioners. I did employ the services of holistic/naturopathic practitioners when I first had UC and their guidance did not help even a little. It was all diet stuff, not eastern and not actually holistic. It could be that I just haven't had awesome western practitioners to manage my guts. I have health... [ more ]
OscarThePouch So far I seem a bit better. I had 20g worth of Metamucil plus 7 doses of visbiome and the tailbone pain subsided and the stool consistency is better. I am still have nauseabut only transient since I haven't actually puked. Maybe this just takes time and it will be a slog. I wanted to say something else though... I'm not against "western" practices persay. I'm a scientist and so I hold many so called western things in high regard. I do reject medicine that doesn't make logical sense such as... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
On the J-Pouch waiting list... Couple of questions.
M MCR_man
LovelyCarrot Great question and welcome to your probable new future as a “poucher”. Like the others have said, there’s various experiences but I have always had very good results from my 30+ year old pouch. I have full BM control whether awake or asleep. I poop 4-6 times a day like many, but can hold it for hours if needed. Like with holding regular non-pouch BMs, it gets uncomfortable after a while but you can do it. Probably not as long though, if I feel like I need to go (and you will get the... [ more ]
CTBarrister This is well said. The tricky part in getting a new J Pouch is figuring out what constitutes staying in your lane. It's trial and error, and I recall getting advice to keep a dietary journal, which is pretty good advice. And also noting what works and what does not work as far as medications and supplements. Many new J Pouch patients come to this board thinking there is a "common J Pouch experience", but even on the J Pouch highway, we have many different lanes and you need to figure out... [ more ]
Scott F New577 reminds me that I do take Lomotil at bedtime, though I’ve noticed that if I forget to take it I seem to sleep almost as long. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Airline pilots with J pouch
H hpinder67
hpinder67 Good to hear! I hope I will be the same [ more ]
Jaypea No, my pouch empties pretty immediately without fail. I have never had an issue and can get out ASAP. Takes more time to pull up my pantyhose and check my lipstick! [ more ]
hpinder67 Thanks for the reply . Similar story with me with this ileostomy when I have to empty it - as there’s no water in the toilet it can be a bit difficult to clean but I do the same thing. im definitely going to go for the pouch and I understand I will have to be patient but I am prepared for that. do you have any issues with time spent in the toilet or are you generally quite quick? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Toto bidet
J Jenny4814
Jenny4814 Tamara, I have my final surgery 1 week from today. All of the social media groups I belong to recommend a bidet for cleaning and butt burn. Yes, it is fitted on your seat. Scott is right you need an electrical outlet by. I also have heard wonderful things about travel bidets, as well. Can’t quite speak from experience. jenny uc dx 2009 2/3 step jpouch surgery [ more ]
Scott F It fits on a regular toilet, but it does require a dedicated electrical outlet nearby. There are simpler unheated bidets that don’t need electricity. It’s more pleasant and effective to rinse off the poop with a bidet than to scrape it off with TP. [ more ]
Tamara Does the toilet seat fit on a regular toilet? How does it help you? Thanks Tamara J pouch - 27 years [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
My covid experience
C Chook2
happytimes We are all getting covid. It will be in existence forever much like the flu and common colds. There is no hiding from Mother Nature. New Zealand had basically zero natural immunity so it was just a matter of time once NZ opened up that Covid became widespread. Be grateful that the virus has weakened and doesn't seem to be wrecking the havoc that it once did. This is normal behavior for a virus to weaken because if it killed off all its hosts it would cease to exist. We have good treatments... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Severe anal pain when having bowel movement
GEB56GEB56
LovelyCarrot About 3 years now and I frankly can’t tell that I’m taking it as far as side effects. So, none. It’s controlling chronic pouchitis. I did Humira for several years prior, which was easier as it’s an at home simple injection, but it stopped working after many years. Entyvio is infusion, so it’s a little more of a hassle. Although I just saw that there’s a company now that will come to your home and do infusions right there. [ more ]
GEB56 Minimal side effects on Entyvio up for you? How long have you been on it? [ more ]
LovelyCarrot I wish you the best! Sounds awful. I’m on Entyvio and it’s working great for me. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Probiotics
Y ytcrockpot
Former Member I love that you posted this. I wonder why it works for some people for their J-pouch like Visibiome for instance. [ more ]
Pouchomarx When I saw Dr Shen, I was told probiotics are not suggested for the pouch as they are intended to work in the large intestines. I was told they can increase risk of getting SIBO as well. [ more ]
roxz I use digestive advantage once a day (the one without the added fiber) with good results, if I start to get pouchitis symptoms I take it twice a day. [ more ]
See all 9 replies...

Join Us!

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

  • Scott F
  • Jan Dollar
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×