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J-Pouch ForumsHelp! Need advice now!
SIBO and tons of antibiotics!
B bkinnear
CTBarrister This is very good advice. It should be added that dietary changes will not necessarily lead to overnight or instant improvement. It will lead to improvement of SIBO over the long term. Low FODMAP is a good diet but any less structured diet restricting sugar and processed carbs will do the trick. [ more ]
Pouchbro I’ve recently read that adding probiotics (as suggested above) May worsen SIBO. Small instestinal bacterial overgrowth, since you already have an overgrowth ADDING more bacteria through pro-biotics may (and logically it makes sense) worsen things. Try the low FODMAP diet and remember that carbs such as bread and rice turn into sugar and the bad bacteria’s feed of sugar and carbs causing gas and other issues. [ more ]
lablover No new meds as I recall. After the last round of antibiotics he was okay. Plus to stay away from beans and stuff. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stool in jpouch while I still have a loop ileostomy.
S Sammie1997
Pouchbro If you are lactose intolerant or have some sort of allergy and are eating dairy or the problem food it could likely be discharge & mucus from your anus passing rather than actual stool passing through. This happened to me when I was in your position. [ more ]
Andreita Hi this happened to me after the second step. The nurse told me that the volume of stool is still less than if you don't have the bag at all. It is good that not all of the volume goes into the j-pouch yet so it still recovers. After the second step I needed convex flanges instead of the flat ones. Without them I leaked like crazy and the disk park around the stoma didn't stick at all anymore. [ more ]
Scott F Just to be clear: is this a loop ileostomy? Is your concern that too much of the stool is bypassing the loop ileostomy and coming out from the anus? If the above is correct then you needn't worry about an infection. Your J-pouch may not be getting quite as much rest as intended, but it’s likely to be just fine. Good luck with that wound healing. [ more ]
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J-Pouch ForumsGeneral Discussion
Change in Pouch Function long term
HeatherF21HeatherF21
Spooky The suggestions above are all good ones. Definitely test for Celiac and rule out SIBO. I would add too that sometimes seemingly small things get overlooked; for example, if you have had any recent changes in diet or lifestyle, such as an increase/decrease in exercise, change in sleep schedule, change in times that you eat, etc? This can all impact pouch function. But if the scopes otherwise look fine and there is no active pouchitis or inflammation, looking at your diet is a good place to... [ more ]
CTBarrister You may have a SIBO situation if Cipro is working well. You claim your diet is good but you don’t comment on sugar consumption. Sugar consumption could be behind SIBO and frequency. Targeting gluten and probiotics is fine but getting rid of sugar in your diet is another step you can take. Sugar is a much bigger culprit than gluten in SIBO and frequency except for those with Celiac Disease. And if you don’t have Celiac Disease gluten isn’t or shouldn’t be a huge issue. If you haven’t tested... [ more ]
HeatherF21 Thanks guys, I’ve never taken any Imodium or bowel slowers since the op as haven’t needed to or been on any medication (except Cipro for a confirmed bout of pouchitis a while ago). All very weird but I know that Cipro works great to alleviate my symptoms regardless of what the scopes are saying...... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bloated feeling
M Mreyna
Pouchbro Kombucha will leave you even more bloated due to the carbonation and most are basically packed with sugar especialy since sugar is used during its brewing/fermentation. [ more ]
Aimc I swear that area was numb for days for me. I guess that's okay because it didn't hurt. [ more ]
Mreyna Yes I did l My first one in Minnesota was not bad. The doctor in san antonio and then my home town was extremely painful after I woke up. I just dont think these drs had done them enough😕 [ more ]
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J-Pouch ForumsPouchitis
Surgeries other than J-pouch like back, neck, ear etc. and effect on pouch
D DJJ2019
DJJ2019 Thanks for the input. Makes me think it could have been both. 20 years in and I have no doubt now that this was pouchitis. About day 7 of Levaquin/Flagyl and I am healing just about on the same path as usual, but with a lot less energy due to not eating for close to 7 days. One side benefit of being on antibiotics is that I an enjoy sugary drinks for a few days before getting off and going back to low sugar to keep gas down. Should I ever need surgery again that requires a long anesthesia or... [ more ]
Scott F This doesn’t sound anything like pouchitis to me, unless you have symptoms you didn’t mention. This simply sounds like a small bowel obstruction that was tipped over the edge by the oxycodone. You probably have a slightly narrowed portion of small bowel, either intermittently as the bowel moves around, or permanently from scar tissue, and this will predispose you to obstructions (hopefully rarely). Antibiotics probably won’t do you any harm, but they will never prevent a small bowel obstruction. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How long did it take for everyone to go back to the bathroom normal?
E Emuhyee
Scott F Emuhyee, you don’t say what you expect to be your new normal. After J-pouch surgery, a normal BM has a consistency more like pudding than solid. A normal frequency is 4-6 times per day. The most important benefit is that the urgency should be gone. People report highly variable amount of time for this. I was most of the way there in 6 weeks after my surgery, and some people say it takes them a year to fully stabilize. [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro/Flagyl Rotation and Dairy
B BlueFlame
Jmarc My new GI highly advised I go on Cipro/Flagyl "rotation" after using only Flagyl for a few years (daily) for chronic pouchitis. It's efficacy was starting to wane anyhow, so I took his advice. Pouchitis always returns when stopping antibiotic. I switch off every 90 days.Cipro makes me feel a little better and it gives me slightly better control. No pouchitis for 1 1/2 years but 6-8 bm is still the norm [ more ]
kubrider Hi All, Personally I wouldn't get to excited with the reduced BM's just yet. These antibiotics are naturally constipating. I was just on the same two for 14 days with the same result but you'll find that as quickly as you slowed down when first taking them you'll more than likely speed up when taken off. Not that your pouchitis won't be cured but your system will speed back up. Best of luck, Rob [ more ]
BlueFlame I thought I’d have to take Cipro and flagyl for a month, but it’s going to be two months followed by an endoscopy to see how things look. Then maybe taper or change to Rifaximin depending on how things look. I feel no symptoms and felt done before the Rx, though I definitely feel better with the Rx. The Rx duration is getting to me though. No appetite, blurred vision, flat mood, tired easily. I started B12 shots last week so hopefully that helps some. I know this is a bit whiney given other... [ more ]
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J-Pouch ForumsPouchitis
Anybody on SCD or grain and sugar free!
JS julie s
nicole450 It's normal to feel horrible in the first few weeks of the SCD diet. If the symptoms are too much, do a slower wean off of the illegals. After you get through the die-off phase you'll start to feel so much better. I have been doing SCD for about 9 years and I think it's kept me from biologics and long-term antibiotics. However, with that said, I don't know if it will help the pouchitis while you're already in a flare. Also, it really helps to understand the science behind the diet and why... [ more ]
julie s Hi Scott- yes he's done several courses now and nothing has helped. We're going to give it a go along with vivomixx and see what happens! [ more ]
Scott F Most people with severe pouchitis won’t get better with diet alone. Has he tried standard antibiotic treatment? [ more ]
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J-Pouch ForumsHelp! Need advice now!
How long did it take for you to resume your normal life after takedown?
I Ibdmom
CTB23 I was able to start working part time about 6 weeks after takedown but probably could have gone back sooner. Really practice kegels when she is able to. That should help also. Starting school half days may help because you are usually more active in the later afternoon. Lomotil or Immodium can help with this once the surgeon gives the ok. I was in my 60’s when I had my surgeries and my sister was in her twenties. We do have a friend who’s son was about 12 at the time of his. I can ask her... [ more ]
Aimc Ibdmom, I don't think in the beginning it's about how many times you have to go as much as it could be making to the bathroom in time. Barring complications, a month should be a good amount of time to wait to go back though. Good luck to your daughter. Hope all goes as planned. Aimee [ more ]
Ibdmom Wow, I didn’t think it would take that much time. I think that physically if all goes well, she will be ok. I think it’s more about training the body to hold it in for extended period of time. I think that is going to be the challenge.i was thinking that she may be able to go back after a month. Maybe she can go back as half days in the beginning & of course she will be allowed unlimited bathroom breaks. Thanks for your input. That sounds like you are doing great at a year after surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Turmeric capsules for help with pouchitis?
J Jmarc
roseviolet Thank you for your reply, JMarc. I'm not on any med other than potassium. Have zero symptoms, only 4 daily movements and feel great. Pouch just had its 27th birthday. On my last scope there was some ulceration at the inlet and some inflammation in the pouch. Have been taking curcumin & boswellia after reading several studies on NIH site. Am hoping these are helping but won't know till next scope. I certainly don't want to take biologics or other meds if I have no symptoms. [ more ]
Jmarc I've spoken with my GI since this posting 2 years ago. He wasn't familiar with anyone who has tried the turmeric but was fine with me trying it. I never went full speed ahead with it as I was a little nervous that discontinuing Flagyl would cause flare up. One daily capsule didn't seem to have much impact. For these past 2 years I have been on a rotating schedule of 90 days flagyl then 90 days Cipro. Been free of pouchitis the entire time. Overall sense of wellness has been good but I... [ more ]
Linguist ❤️
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J-Pouch ForumsPouchitis
Help not sure if pouchitis
TexasgalTexasgal
Scott F Some people are followed by their surgeons forever. I have had all of my follow-up care from gastroenterologists, and never saw my surgeon again. I sent him the occasional grateful email, though. All gastroenterologists have had the training of internists. Only some are willing to practice general internal medicine, though. [ more ]
Texasgal Scott and Jimi- thank you so much for replies sooo helpful. Forgive my earlier incorrect information, I now realize I did have in pouchoscopy 2012. I believe my surgeon said what you mention Scott, Unless I start having issues he said no need to return. Scott Your post was comforting to me not to freak out over no pouchoscopy in 7 years if no issues, I am way over paranoid most days...thank you, eased my anxiety. With that being said Jimi your post prompted me to email my surgeon and ask... [ more ]
Scott F If a pouch is functioning optimally it’s understandably hard for folks to spend the time, money, and hassle to see a doctor about something that’s working fine. Since most problems declare themselves with symptoms, the biggest issues I see with non-care are 1) not having a current relationship with a surgeon or gastroenterologist when you do need help, 2) problems being accepted instead of diagnosed/treated, and 3) symptoms creeping up on you so slowly that you don’t realize you need help. [ more ]
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J-Pouch ForumsGeneral Discussion
Stitches around stoma
K Kh1988
girlunky Well all ileos are stitched into place. Otherwise they would retract. I had so many issues with my loop ileo, and yes, the stitches were one of them. I had issues with the stitches for my end ileo as well. I did very very gently test them and when they were mostly dissolved the offending ends easily fell off. The suture would get under the wafer and compromise the seal, then the leaking stool caused skin lesions around the stitch. I also had one that got a bit infected, but it drained when I... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis dx at scope, symptom free now and hoping to prevent in future
MeganEMeganE
Scott F Normally pouchitis is treated with an antibiotic, either Cipro or Flagyl. For most people 10-14 days clears up the pouchitis, often for a long time. If this is your first episode of pouchitis it might not be worth much effort or cost to try to prevent a future episode that may not occur. For folks with recurrent episodes a high dose probiotic seems to decrease the frequency of episodes. VSL #3 (now called Visbiome) is the best studied probiotic for this purpose. [ more ]
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J-Pouch ForumsHelp! Need advice now!
One more shot at Cleveland Clinic question
J JHendrix
n/a He had me come back 3 times for the doxy injections (done during a pouchoscopy-type of procedure), but no luck. $$$. I had my pouch removed in Oct., along with the fistulas. No more probs, just a tiny bit of leakage now and then. Have you tried a search with "clip" on here? I sorta kinda maybe remember some possible threads where clips were being used/tried ...? [ more ]
JHendrix There was a paper published a year ago. It only involved 29 people (both UC and Crohn's). Twenty six were successful but 16 of those required more than one procedure. One (of the remaining 3) had serious complications. So, the stats are good but the number of participants is low. I will meet with him and see where it goes. Are you managing ok with your fistula? [ more ]
n/a Dr. Shen "experimented" with me about 6-7 yrs ago using doxycycline injections in fistula, they didn't work. Did you ask him how many times he's done it, and what the results were with those patients? [ more ]
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J-Pouch ForumsPouchitis
Potential risk with Remicade?
F Fredrik
JHendrix I had Remicade about 20 years ago with UC. It put me into remission. Fast forward to jpouch and fistulas. Last year I was given Remicade again after having been tested for antibodies (negative) but developed serum sickness a couple of weeks after the first infusion. The symptoms all cleared and I didn't continue on Remicade. The fistula was likely caused by an undetected leak at the anastomosis but in the unlikely event that the fistulae were as a result of Crohns I was given a trial of... [ more ]
Fredrik Thanks for your honesty! I’m thinking I’ll cross that bridge when I get to it [ more ]
PouchLogic Not to put a downer on what is so far a good thing for you but another issue you can have is Remicade putting your immune system into a non working state. I had to go off Remicade because my immune system shut down. I also developed issues with the infusion over time. I hope you have continued luck with it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction - cleared and post hospital release fever
S slouchypouch
Andreita How are you feeling now? [ more ]
slouchypouch Update for anyone who wants to know. I had staph infection, maybe from all of the failed attempts from multiple people to get that NG tube installed. It was a disappointing experience. [ more ]
slouchypouch Thanks Andrina, I'm hoping the fever is due to catching a viral illness from the staff. I had no less than 6 pairs of hands trying to jam that NG tube into my nose before I took over. My obstruction last year required a resection and staple/suture and about 4 weeks in the hospital before my gut. Is it possible for those metal sutures to cause problems later? Besides staf infection/flu, etc, I'm looking for plausible explanations. Unfortunately no one drew blood before releasing me. Very... [ more ]
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J-Pouch ForumsK-Pouch Korner
November is 44 years with a Kock Pouch :-)
KP 1974 Kock Pouch
dgs Thanks, I appreciate the info! [ more ]
skn69 Hi Debby, Thank you. I am a survivor like all of us here, with just a bit more experience than most people...that gave me time to experience more disasters! What is a hook up kit? I start with a large makeup bag and add a free mini tubes of lube, 2 or 3 different sizes of tube (24, 30 and 32 plus a folley Cath), a guide wire (a stiff semi rigid wire that you can place inside of your Cath to help push it past twists or turns in your valve... and once in you can pull it out) , transparent or... [ more ]
Patricia Walker ❤️
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J-Pouch ForumsHelp! Need advice now!
Fluid behind jpouch
K Kh1988
Jaypea If you have no fever, malaise, other symptoms of feeling unwell then it is likely just a post op fluid collection. This does happen and the body resorbs it slowly. Monitor your well being carefully and stay in touch with your surgeon. [ more ]
Kh1988 Thank you!! I definitely hope that’s what it is. I will call the dr right away if I get a fever [ more ]
Scott F It’s probably a hematoma that will clear up on its own. If you spike a fever call your doctor. [ more ]
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J-Pouch ForumsK-Pouch Korner
40 years
skn69skn69
LuckyLady Hi again. I was treated at Toronto General then operated at Mount Sinai when my doctor, Robert Stone, became Chief of Surgery there in 1977. I lived with a conventional ileostomy for 18 months before getting the K-pouch at CHUS in Sherbrooke (I lived in Montreal at this time) in February 1979. I was also warned about the unknown long-term affects, possibility of recurrence of the UC in the pouch etc. Wonderful surgeon Dr. Devroede, a great stomatherapist, Soeur Pierrette Cote, at the... [ more ]
skn69 I always say that this is not a sprint but a marathon...we have to look at the end-game, the long term results and not the immediate difficulties...yes, we suffer, have surgeries, treatments and hell...but in the long run we achieve a better quality of life with our pouches than without them...they are worth fighting for, as all of us here know...we just need more surgeons willing to do them. Sharon [ more ]
jan15 sharon--thanks for the tribute to how you and your doctor worked together. very sweet! and thanks for your never ending determination. it is inspiring. janet [ more ]
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J-Pouch ForumsPouchitis
How to take Flagyl when it makes me gag?
F FreeAtLast
CTBarrister Flagyl pills are small. I have the 250 mg pills. You just power swallow them with a flavored beverage. Crushing them is more likely to make you taste the powder. Do not swish them around your mouth and savor the taste like wine. The power swallow should get it down with no problem and keep swallowing beverage for another 5 chugs to wash down after taste. [ more ]
Andreita I crush it. I almost never take pills whole especially when that big. I swallow it with juice if I need to avoid tasting it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adhesions
M Marj
Marj Thanks for your response. Hopefully since I have 2 different opinions from the Hopkins surgeons (one in favor of operating and one in favor of conservative treatment) a third opinion will help. ) The third person has to agree with one or the other. I do agree that I will still be the one who has to be comfortable with. the decision and that I will be the one who has to make that decision. I want to talk to a physician who is primarily interested in Inflammatory bowel disease and works or has... [ more ]
Scott F Some people have gotten great results from adhesion surgery, but others have fared poorly. A third doctor’s opinion probably won’t shed any more light on this - it’s really about how you feel about gambling in general, and this gamble in particular. I’m sorry that you have to deal with this, and I hope you can find a path that feels right. [ more ]
Marj Scott , Understand that both surgeons are trying to be honest that with lysis of adhesions there is no guarantee that I will be better. Because of the random obstructions andfrequent hospitalizations I feel that we can't travel anymore . I have been hospitalized while vacationing and that can be very scary if you are not near a larger hospital. I also don't like to be put in the position to decide which doctor might be right when one says operate and the other says you are better off to deal... [ more ]
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J-Pouch ForumsGeneral Discussion
anal dilation for stricture
MO Mary O
Mary O Unfortuneately, I've been doing regular dilations for years and additionally have been in pelvic floor p/t for a number of years and don't make much progress. Even with all of that, it is gradually getting worse, hence why I am trying to understand what the options are for the future. [ more ]
Jfill21 Mary I had the same inability to empty and had same tests done at Cleveland Clinic. My diagnosis was a dysfunctional pelvic floor and the prescription was.therapy. Took some time getting comfortable with a therapist but glad I went through it for three months. Definitely helped. [ more ]
Scott F Mary, plenty of folks do fine with regular or occasional dilations. You’re probably not on the road to an ostomy as long as you keep the channel open wide enough. In the meantime you might want to do kegels every day so the sphincter muscle stays strong. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding
FM Former Member
Scott F Cuffitis is more typically associated with bleeding, but if pouchitis causes ulceration, that can bleed, too. You should probably find a knowledgeable gastroenterologist. It’s best to think about treatments before you give too much thought to pouch failure. Most conditions are straightforward to manage. [ more ]
PouchLogic It could easily be pouchitis. See your doctor and possibly get a GI so you know that you have a pro. I've never dealt with cuffitis but pouchitis is usually easily dealt with with antibiotics and or probiotics. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible adhesions/obstruction
DG David Goldstein
Scott F This could be a pouch prolapse. The test to see if that’s it is called defecography. It’s a little embarrassing but otherwise pretty straightforward. [ more ]
David Goldstein Definitely preventing the pouch from emptying. [ more ]
Scott F David, I can’t tell for sure if by “stopped up” you’re describing a blockage in the intestine, something preventing the pouch from filling, or something preventing a full pouch from emptying. Do you have a sense of which of these seems to be going on? [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
C capper
Andreita What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis? The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this. [ more ]
CTBarrister I had sleeping issues before and after Remicade, with no real change in the magnitude of them. I come from a family of insomniacs. As far as a firming of the bowel movements I haven’t noticed that. I don’t think you will see improvements for around 2-3 months. You sound stressed out and looking for cause and effect reactions with Remicade. I would suggest you just relax, chill out and wait. For the sleep issues, NyQuil or the cheaper Walmart equivalent works well, you can also get a... [ more ]
missm Never had a problem with sleeplessness from Remicade. I always get a Benedryl with my infusion that that knocks me out. My husband has always averaged about 5 hours of sleep per night - he started taking 1/2 dose of melatonin (per our daughter who is a Registered Dietitian) and is sleeping much better. I've been on Remicade for 6 years, and didn't have any side effects for a long time. [ more ]
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J-Pouch ForumsK-Pouch Korner
Odor from stoma
T ToothFairy
LadyTay97 I don't know if this is helpful but the only time I ever noticed an odor is when I'm using the bathroom. Once I pull up my pants I don't notice it. And no one has ever pulled away from me or said anything in regard to if they noticed something funky. When are you noticing this odor? Do you have anyone you could ask if they smell anything? What does your doctor say? Have a marvelous day. [ more ]
ToothFairy Jan15, during the week, I wear scrubs while I’m working. I use cotton pads underneath an adhesive which allows me to change the pads throughout the day when they become saturated. I typically only wear the Ampatch on the weekend when I’m in regular clothing because they are less noticeable under form fitting clothes. I have noticed the odor while wearing both kinds of coverings. My fear of others noticing the smell is because I work in very close proximity to other people. I am a dental... [ more ]
jan15 I also don’t think other people notice. Could you try not using an Ampatch for a while and see if the smell dissipates. I happen to have quite a bit of mucus so I use nursing pad, which conveniently adheres to my under pants. Some days I need to change it more than once. I also think that would be better for your skin than having the ampatch on all the time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Day 4 in the hospital after take down spams and no appetite
J Jpouchinseattle
Scott F For some of us severe gas that just won’t quit is a sign of SIBO (small intestinal bacterial overgrowth). It can be treated with a course of doxycycline or (more recently) rifaximin. Doxycycline worked for me (it was a long course). [ more ]
Pouchbro I am over on year post op and I am still having major issues with gas. I agree that there is no medication that helps much with gas, only medications that help pass it (Simethicone aka Gas-x does not stop gas, it breaks up gas bubbles to make it pass easier). Beano only works for what it is intended for, beans and cruciferous vegetables. The only way to relieve the pain is to pass the gas and avoid gas causing foods like sugar and carbohydrates. I have been dealing with SEVERE gas... [ more ]
Aimc So glad things are getting better for. Just be patient with the process. Some days will be better than others [ more ]
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J-Pouch ForumsGeneral Discussion
Extra Ostomy supplies
B BBOP
Winterberry Ask the ostomy nurse if there are organizations they know of that need products for ostomy patients who don't have insurance, or for low-income patients that cannot afford extras. My hospital even donated some of their extra supplies to another country where a new appliance or bag is a luxury, can you imagine. While I had a temporary stoma I ordered more than I needed from my insurance company because I changed appliances sometimes 3 times a day due to my retracted stoma. Luckily my reversal... [ more ]
Still Standing I donated mine to the hospital where I had my j pouch surgery. The ostomy nurses provide them to other people who need them. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira
ktakta
Still Standing I would make a note of how you felt after this injection and see if it happens again at the following one. If you don't feel better in a few days, I'd let your GI know and see what he/she thinks of all this. Hope you feel better soon! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tailbone pain/shocks in rectum and vagina
K Kh1988
Winterberry Google information on "protalgia fugax" to see if the symptoms match yours. After my takedown three years ago, I experienced pain similar to yours which were so sudden and the searing pain stopped me in my tracks. If it's the same, at least you'll have a name to consult your doctor. [ more ]
Kh1988 Yea I was thinking maybe that too..I was reading about that earlier. My sister n law says maybe it’s nerves. Maybe a nerve is getting irritated somehow or just nerves “waking up”. Who knows!? Luckily, it’s happened a lot less today. Only a few pains here and there. Last night it was constant for hours and I was super close to going to the ER it hurt so bad. I really hope it’s just a normal part of healing. I’m going to call the doctor tomorrow and let them know! Thanks for your reply ☺️ [ more ]
Scott F Perhaps the pouch is spasmodic - I don’t know if that’s likely when a loop ostomy is in place. Bentyl or Levsin would be commonly used to treat the spasms. [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal stump
G gdl900
Jlboling ❤️
Scott F There are two different surgical techniques that can be used. The more common stapled method attaches the J-pouch to a short rectal cuff. The technique is easier and usually gets better results, but the remaining cuff can cause trouble if it gets inflamed (cuffitis). The hand-sewn technique is technically more difficult, and should only be done by the most experience and skillful surgeons (IMO), but it removes that pesky rectal cuff. Sometimes a mucosectomy is performed at the same time,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone else have a dull pain making it hard to sit after jpouch formation?
S Sammie1997
Andreita I just saw this. For me it started after the J-pouch was connected. I can't stand as I faint (orthostatic intolerance) and I used to love to sit but now it's torture. Ughh I hope it gets better. [ more ]
Terradon Oh yeah, just had to be gentle for awhile... [ more ]
Bobish I laid down for the first 3 weeks after my op... I stood (albeit hunched) only to go to the bathroom.. I wasn't interested in sitting for quite a while... Even at the 3 month stage I found it hard to sit in a car (more getting on and out though) [ more ]
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J-Pouch ForumsGeneral Discussion
Low residue diets
M Marj
Bobish Marj, it's always best to learn from yourself rather than follow someone else's diet suggestions (even a doctor's) everyone is different and just because a food is tolerated by someone else didn't mean it will by you! I notice you have had a pouch for over 20 years so presumably you have some idea which foods upset you and which don't. Do you have a specific concern that's leading you to want to restrict your diet 95% of digestion occurs in the part of the digestive tract that we still have,... [ more ]
Francesca Hi Marj i haven’t had any food allergy testing but I know from personal experience that milk and ice cream don’t agree with my jpouche. Hence I steer clear of them. I also try and stick to a gluten free diet. Cooked vegetables are fine with me and I limit my fruit also. Other than that I’m fine. Regards francesca [ more ]
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J-Pouch ForumsPouchitis
Does anybody seem to get pouchitis more in the Spring and Summer when the weather is warm?
melissa111melissa111
Mike March Besides the tincture of opium (which is super-controlled and only used as a last resort out there) to control the diarrhea; he suggested: - eat smaller meals (cutting out bread, nightshades and refined sugars) and chew well. Keep a food journal after a complete elimination diet for 3 days.—this was the first step in the more holistic approach. - I had my own supply of cipro and flagyl; but, he discouraged using them unless absolutely an acute episode. - prescribed an anal fissure medicine... [ more ]
melissa111 So what did your Japanese doctor tell you to do? [ more ]
maddie18 ❤️
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J-Pouch ForumsPouchitis
Feel terrible after eating (and other symptoms) - anyone else get this for Pouchitis?
K Kat122
Mike March Hi. If I recall, it started within a year of takedown. I don’t recall ever having complete ‘joy’ with this Pouch. All tests reveal signs of pouchitis and/or symptoms of irritable pouch. I just started my day with 250mg Cipro and 250mg Flagyl. the Pouch is well constructed and no fistulas. If I eat strict AIP/Whole 30, it behaves better. I just find it hard to stick 100% to the dietary guidelines. I traded bleeding colitis and constant prednisone for this; it was a good compromise; all things... [ more ]
HeatherF21 Mike how long after your surgery did you develop chronic Pouchitis? [ more ]
Mike March Hi... I suffer from chronic Pouchitis and encounter same symptoms. Besides Cipro and Flagyl (and Tinture of Opium for the chronic diarrhea), doctors haven't offered me much. I have chronic fissure/hemmorhoid burning/itch which is caused/exacerbated by it. I have (slowly) found that an AIP (Auto Immune Protocol)/Whole30 type diet does help. No nightshade vegetables (though white potato doesn't bother me), no refined sugars, no bread (Gluten-free sometimes ok)..... It sux (I'm Italian and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I need help
A Andreita
Andreita That's what I was thinking that's why I figured I didn't have a blockage because I kept on having bm's and they never stopped. That makes sense. Thank you. [ more ]
Aimc Gas can be very painful with a new pouch. Hard to tell it from a blockage. Unfortunately we are all different, so what works for one my not work for you. Stay with small meals, maybe experiment with gas preventatives like beano. Once you have the gas, pretty much releasing it is the only way to get rid of it. And yes gas can hide out in the small intestine. As your pouch matures, it gets better though. [ more ]
Marj ❤️
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J-Pouch ForumsGeneral Discussion
Kidney stones
B Bubba1028
Raj I only drink that much because I am supplementing creatine in my workouts which demands a lot of water even with a regular person. As for the acidity due to lemon , its infact alkaline once digested. The lemon water itself is acidic but once the body digests it , it acts as a alkaline.And you are right we loose more water than a regular person with colon. I've felt this during intense workout sessions. I constanly need to drink water . Atleast 3-4 times in my 1 hour workout. [ more ]
CTBarrister Kidney stones are a well known possible complication of a colectomy. You lessen the risk by properly hydrating, and not drinking excessive amounts of alcohol and caffeine. It is true that the small intestine never absorbs water as well as the colon did, but you can compensate for that by properly hydrating. In 27 years with J Pouch I never had kidney stones but my surgeon warned me about them and said if I didn’t drink a lot of fluids it could happen. He scared me straight into the proper... [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
J pouch and cancer
M missm
CTBarrister Here is the wiki on toxic megacolon. What I was referring to is the complication that your colon actually perforates and as a result, you die due to sepsis and shock. That’s what can happen when a colon deteriorates severely due to UC. https://en.m.wikipedia.org/wiki/Toxic_megacolon [ more ]
missm What exactly is toxic megacolon? My dr has mentioned it, but never explained [ more ]
CTBarrister I am also taking methotrexate and have gotten away with drinking on occasion with it. I am now on 7.5 mg weekly after my liver chemistries spiked a couple months ago and they reduced my dosage from 12.5 mg. I am now back to normal. My liver chemistries were fine on 12.5 for almost 4 years with occasional drinking but then suddenly crept up. My doctor told me 2 drinks a week but some weeks I have none and some weeks 4 or 5. I only have a maximum of one drinking day a week, and on that day I... [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Rectal pain before j pouch is hooked up?
K Kh1988
Kh1988 That is true! Although I only took dilauded until the 2 day post op! And then it was just Tylenol after that. But yes, I mostly laid around in the hospital bed. I sat up here and there but not too much. I wonder if they put lidocaine in there dying surgery and that is wearing off? [ more ]
Raj You were on high doses of pain meds in the hospital. They do so when you are there but once you are released and the pain meds drastically reduced you start to feel all the leftover pain. It'll go away with time. The tissues inside that have been cut will fully heal and you'll start feeling as good as normal. [ more ]
girlunky Yes, but in the hospital you had painkillers, spent a lot of time in bed, and were not moving around much. I didn't notice until I got home and tried to sit at the table. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch operation leak
T Tigerstripe
girlunky Hi Tigerstripe, this happened to me last December. I had the second (of two) surgeries to close the end ileostomy & create the jpouch. I was recovering well and hoping to go home on the 5th day, but instead wound up with peritonitis , urgent surgery and a loop ileostomy. I was extremely ill and was afraid I would die from that infection. But I went home after 11 days with a loop ileostomy. That ileostomy was very very difficult for me - I had to change out the appliance every day and... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Recommendations for Nashville or Memphis area
V VickiJ
Dude, where's my colon? I used to be a patient at the digestive disease center at Vanderbilt Hospital in Nashville. I had great results with them. My doctor’s name was Dr. Dawn Beaulieu. She was very knowledgeable and helpful. She specializes in J-pouch patients. I highly recommend the Vanderbilt digestive disease center. I think it would be worth making an appointment to see if they can help your husband’s pouchitis before you schedule a surgery. Hope this helps [ more ]
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J-Pouch ForumsPouchitis
Stomach flu and very unusual result
E Elrond
heezy Yes. What you experienced happens to me too. Every time I get the stomach flu, I experience a fantastic reset and period of everything working properly. I do believe that the gut biome does get flushed out and “reset”. [ more ]
Scott F Elrond, you may never know what was going on, and you’ll probably never know why it got better. I’m really glad it’s better, though! This might be a good time to start a probiotic like Visbiome. If what you had was pouchitis that failed to respond to both Cipro and Flagyl then preventing a recurrence is especially valuable. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Not gaining weight
A Andreita
Aimc Hi Andrina, I think you will be fine. 54 kg is around 119 lbs., I don't know your height, but that not a bad weight. As your j pouch matures, and you are eating proper meals, things will even out. Sounds like you are doing pretty good. Aimee [ more ]
Andreita During remission I was 65 kg. I flared and dropped to 55 kg. After the first surgery I came up to 60 kg again. After the second I have been declining and even worse after the third. I'm at 54 kg now. [ more ]
BlueFlame Agreed with the prior replies. Your surgery was so very recent. I’m guessing you were pretty ill and perhaps under weight going into the surgeries? By the time I had part one of the surgery I was 89lb, down from 110-115lb. The surgeon wouldn’t reconnect until my weight was at least 110. It was a tough road getting there and I ate high calories for three months because I was determined to get rid of the temporary ostomy ASAP. It definitely can take time to regain weight after all that. That... [ more ]
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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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