J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Straining *might* have caused an issue for me. A likely bout of pouchitis and straining is what my CRS said could have caused my anal gland issue to abscess which then 50% become a fistula. I don't know exactly how he thinks that works, but that was his first assumption. My GI thinks I have larger IBD issues. [ more ]
Scott, I think that the cause is mechanical / psycological: when I empty, I want to empty full, but the first "batch" is overwhelmed by the weight of what is above, so it goes out very well. When it remains something (that I definitely feel) I have to decide if keep it, or strain to expel it. And psycologically I always choose the latter as I like to be really empty. But this is the case, I already lose blood every single time I strain too much. [ more ]
Straining won't cause anal cancer, pouchitis, or fistulas, but it can lead to hemorrhoids, pouch prolapse, just a variety of miseries. If looser stool doesn't reduce your need to strain then it's due to other causes that may be trickier to work out. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Mark, I'm so sorry you are going through all this pain and complications. Sounds similiar to what my son Jeffrey is going through. Have them check you for kidney stones. My husband just had one surgically removed. They don't show up on CT scans as far as I know, and IBD patients are much more prone to them. And they hurt like hell. I've heard women say, giving birth was less painful. Just a thought. please feel better soon. dianne [ more ]
I am so sorry Mark, No, no experience with that but I know what it feels like to have non-stop complications that seem to never end...until they finally do. One day. I am somewhat out of the frying pan...the fire remains but it is slow burning so I can manage it. I hope that you finally find and end to all of these complications and can get back to a "normal" life whatever that is for you. Good luck and get well soon... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Willie, if your anal sphincter is no longer present, your options to continuing with an ileostomy are the k pouch and the BCIR. These procedures are similar in that the surgeon creates an internal pouch (similar to a j pouch) that is emptied 3-5 times a day with a plastic catheter. The stoma is located below the belt line, is button hole size and does not need an external bag. There would be no problem being a “normal teen” including swimming, sports and a normal sex life. These procedures... [ more ]
Well, neither one is anatomically correct, but a Ken front would be awfully invasive surgery. [ more ]
Now. Jan... That's funny! [ more ]
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J-Pouch ForumsOstomy & Skin
Thanks LHetti! No drugs sounds like a dream.... May you have continued intestinal happiness!! [ more ]
I had my jpouch removed and my dx was Crohn's (fistulas, abcesses, 4cm mass next the pouch). I take nothing. It's amazing! No new issues and I hope it stays this way! I've not had any issues with my small bowel, so no need for medication. [ more ]
Thanks for asking Lori. My surgeon is leaving my j-pouch in. I am not emotionally able to handle that big removal operation at this time. Plus this is what she suggested. I was hoping I was hoping to have the option of getting an operation to get rid of my cuff and advance the pouch down. She said that wouldn't help as my pouch is not working. She suspects pelvic floor dysfunction. I am sad but she is probably right. After she dilated me under anesthesia it didn't improve much. I have... [ more ]
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J-Pouch ForumsGeneral Discussion
If this was PSC, there surely would be bile duct involvement prior to pancreatic duct involvement. I have no doubt they would have looked for it in Lisa's case with the MRCP. Perhaps in your case, Lisa, the pancreatic duct dilation was caused by a blockage from a stone that had dislodged by the time the scan was done. If so, serial scans should show gradual improvement in your duct. Sounds like your doc is being very proactive. My dad died of pancreatic cancer a number of years ago. He had... [ more ]
Lisa, There have also been some members here who have had PSC and I recall a thread about the linkage between PSC, which is a bile duct disorder, and autoimmune disorder. There was a member by name of Shell Worrall from the UK who posted fairly regularly who at some point was diagnosed with PSC. More on PSC here: https://en.wikipedia.org/wiki/...lerosing_cholangitis Here is Shell's board profile here. Looks like she hasn't visited since January of this year: ... [ more ]
Lisa, Please post the link to that study, if you can. Back in June, I was diagnosed with thyroid cancer. My endocrinologist told me that my form of thyroid cancer is caused by a genetic mutation that developed during my lifetime, for unknown reasons. The thyroid is a gland that secretes hormones as well. I had total thyroidectomy and one lymph node removed July 14. So now I am without colon, thyroid and a lymph node. I am wondering what will be taken out next. There have been studies linking... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks for the replies!! I finally spoke to my doctor yesterday and it sounds like pouchitis is a highly subjective, learn-as-you-go kind of deal in terms of what triggers it. I definitely don't think I actively have it, and suspect that flare was indeed cycle-related. So no antibiotics for now, but we did agree to try cipro first, flagyl second if I do have a more prolonged episode that requires treatment. [ more ]
Had to go on birth control to chill out my ovulation and period cycles. They do affect my pouch, with increased frequency and overall just discomfort and bloating. [ more ]
Menstrual pouchitis like symptoms here. And vsl #3 ds is prescription so Insurance may pay for it! [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium husk mixes much better when shaken than when stirred. Konsyl gives away plastic shaker cups for the purpose. That won't fix a gas/bloating reaction, of course. [ more ]
I am fine with fiber in foods. But, I am 20 years post op, so plenty of time to adapt. Just remember that a diet high in insoluble fiber (like roughage of fruits, vegetables and whole grains) is not recommended early on as you adapt. Adjust to your own tolerance. There is no "rule," just what works for you. Jan [ more ]
I got the psyllium husk this weekend and can't tolerate it either . Very painful gas and bloating. and even though it didn't have a flavor I found it didn't mix well and had a hard time gagging it down. Looks like more $ to try another. Jan do you have a hard time with fiberous foods as well? Because I don't do well with whole grain stuff either. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Don't worry about your cough causing a hernia. You are supposed to cough post op, and the incision is built to take it. Jan [ more ]
Jan Yes my mom had the same thing after taking her to allergist for a year and she continued to cough and choke . I was told by my neighbor that someone she knew had same thing and it was her blood pressure meds that was causing it. So when I took her to her heart Doctor I told him about my moms cough and he took her off that med and she was fine after that. [ more ]
Branchy Maybe you have a post nasal drip..Ask your Dr. about nasanex or one of the nasal spray medications. That would also make you cough and sometimes choke.I hope you get answers Grace [ more ]
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J-Pouch ForumsGeneral Discussion
A CT showed a leak near the coccyx must have always been there since 1986 they suggest it healed itself to stop the leak into the pelvic cavity and stool flows into it and out of it kind of like the tide the surgeon said. [ more ]
how was your tip of jpouch leak fixed??Originally Posted by dtmack: Originally Posted by maey2462: Has anyone ever had a J Pouch leak? If so how was the surgery to repair. Thank you in advance I have fought a tip leak for almost 2 years and am now successfully reconnected. My surgeons are also in Cleveland. If i can help, please let me know. I have gone through everything with this thing. Derek [ more ]
Originally Posted by maey2462: Has anyone ever had a J Pouch leak? If so how was the surgery to repair. Thank you in advance I have fought a tip leak for almost 2 years and am now successfully reconnected. My surgeons are also in Cleveland. If i can help, please let me know. I have gone through everything with this thing. Derek [ more ]
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J-Pouch ForumsPouchitis
In my early days of my pouch i had cuffitis and mild pouchitis and he had me on Entocort for several months. Once it all calmed down i was off of it. It stayed good until of course my sinus and leaks started happening [ more ]
Another suggestion is to bring a family member or friend to hear and remember what was said. Docs can talk pretty fast sometimes, and when you are anxious it can all go 'poof!' I agree that experimental treatment is fine and dandy, but if your insurance does not cover treatment considered experimental and they are not offering it as part of a study (no cost), then I'd want to know EVERYTHING it entails. It does sound like you need face time to fully understand the treatment approach, and for... [ more ]
I'm not opposed to trying experimental treatments in addition to proven courses of treatment, but I will not continue to suffer and likely pay a lot of money just to be a guinea pig. I am only taking Canasa 1/day and am not taking Anucort anymore. This seems like a rather conservative approach. It's kind of frustrating that they are not at least trying other treatments at this point, but maybe their data has shown that long-term Canasa use alone is sufficient. Maybe I just need to be more... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Well, for one thing, your ileal pouch (and your rectum, when it existed) would lay next to the spine, behind your bladder, and not insubstantial abdominal wall. It is deep in the pelvic cavity, under the bones of the pelvic girdle. So, unless you have x-ray vision, you are seeing something other than your ileal pouch. I am not saying you do not have a s-pouch, just that you cannot know without looking at your records or asking your surgeon. The reason they do not do s-pouch procedures much... [ more ]
Originally Posted by Jan Dollar: Realistically, I think you have as good of fuction as anyone after a total proctocolectomy. You seem to be doing very well. Typically, 4-8 bowel movements per day are to be expected. To expect or strive for less than your 2-4 is not advisable, as that can lead to bacterial overgrowth from fecal stasis. It is impossible to tell what sort of ileal pouch you may have by looking at yourself externally. A pull-through procedure may mean anything from no pouch to... [ more ]
Realistically, I think you have as good of fuction as anyone after a total proctocolectomy. You seem to be doing very well. Typically, 4-8 bowel movements per day are to be expected. To expect or strive for less than your 2-4 is not advisable, as that can lead to bacterial overgrowth from fecal stasis. It is impossible to tell what sort of ileal pouch you may have by looking at yourself externally. A pull-through procedure may mean anything from no pouch to an S, W, or J. S and W pouches... [ more ]
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J-Pouch ForumsGeneral Discussion
I have this done often (actually too often like every 3/6 months over last few years). I am always sedated as they cannot enter the anastomosis easily without sedation for me (opening is about 1 centimeter). I am actually considering having minor surgery where the surgeon either places several small slits in the anastomosis or cuts out the scar tissue around the sides and lower part of anastomosis and restaples the pouch. The second approach really scares me as I worry about possible... [ more ]
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J-Pouch ForumsGeneral Discussion
Update from the family outing this past weekend. Day 1, perfect and slept the ENTIRE NIGHT for the first time in a long time. I even had a beer for dinner and some beef/steak shishkabobs. (sp?) for dinner. Walked around outside for most of Sat and Sun and did well, but was exhausted at night and probably not enough water in the sun. I think I had the combination of missing some Imodium AND some fair food, like fried dough and huge ice cream that loosed up the works quite a bit yesterday. I... [ more ]
Awesome news!!! Hit my 5 month anniversary of take down #2 today and am also doing very well. Keeping fingers crossed for all of us [ more ]
Great! Hope it helps! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
No reason they can't fit you in before Friday. As some who knows waiting a week can eat a divet in the skin you have to get in sooner then later. You may need convexity. You may be getting a pressure ulcer....you may need a better barrier system. I was going through one appliance every 24 hours because of skin breakdown and leaking. Call them and push to be seen! [ more ]
I put stoma powder on the broken skin, dusted it off, and sprayed a film of skin barrier over it. On my second stoma, my output never thickened, as I had a bowel obstruction and couldn't eat solids. But I used Coloplast barrier strips and convex wafers, and they worked surprisingly well, considering my output was completely liquid. They didn't leak, and I had some skin breakdown, but not too bad. Because I was also always dehydrated, my surgeon did the takedown after five weeks instead of... [ more ]
I only had a 2 step open surgery in 1991. I quit all pain meds in the hospital, when I developed an ileus, so can't help you there... stupid? Maybe... but I think I have a weird pain tolerance, honestly. I was told to eat thickening foods, but honestly, if it's a "loop" ileostomy, or even an ileostomy, it's never going to be super thick. Loops are higher up the small bowel, too, so will be even more liquidy. Small bowel stool just isn't the same as colonic stool. I didn't do anything... [ more ]
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J-Pouch ForumsGeneral Discussion
it might be worth a trip to visit your surgeon. During my first two years of post op, my surgeon found that the opening between by jpouch and and small intestine was too small/narrow. He had his nurse give me self dilators and I had to work my way up to the one they wanted me to be at over a long course of time. It is defiently worth doing it because it helps the opening so you can have an easier time emptying. Also, if your getting itchy a small amount of desitin may help. It's really think... [ more ]
Fybogel is pretty cheap (still psyllium but called isphagula here in Blighty) I take half a sachet in the morning and maybe the other half if needed later on in the day. For me it creates that middle ground taking psyllium/isphagula [ more ]
Thanks for all the replies. No haven't rest taken immodium thus far. I've actually been really loose the last 2 days and finally fully emptying. Just need to find a middle ground now where I am emptying but it's not too loose. I'll have a look at the psyllium, I know a lot of the things reccomnded on here are pricey to get in the UK. Purchased beano and calmoseptine recently, and it want cheap lol. [ more ]
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J-Pouch ForumsGeneral Discussion
The topic of weight loss caught my eye as I too am struggling in this area. I have just passed the one year mark since my first surgery and I am still struggling for my body to adjust to this. For those of us in this group it is a disappointment to have gone through such a major surgery, 2 really and in my case I have the exact same symptoms as I did before my colon was removed!! I know my UC had reached the point where I had no other option, no medication had worked and I now had some... [ more ]
It's normal to lose some weight after takedown. The weight will come back. It took me about 6 months to start gaining it back. [ more ]
I lost 65 pounds in less than 2 months before they removed my colon. I just, last week, had the pouch constructed and I've kept off 50 of the 65, and I'm losing more again, rapidly. I'm having issues with eating. Once I get that figured out I suppose I'll put weight on, but until then I'll just keep losing until my system settles down. I try to eat, when I can, foods that are healthy for me, fruits, veggies, no sugars, that kind of stuff. The weight will level out and you'll find one day you... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Yes, if you have too much stricturing in your colon, they can remove it. I am not sure how much colon is needed to do a colonic j-pouch, so that may still be an option. That, none of the options are guaranteed, as it all depends on your individual anatomy and if there are internal issues, like adhesions, that may interfere with other surgery. BCIR is not done in very many centers. The Kock pouch is more common, but even that is not done in many hospitals. If you go to the K-pouch Forum,... [ more ]
Thanks for the quick clarification. So, if I was to get either a ileal j-pouch or BCIR, can't they just have the rest of my colon removed? I just don't want to have a ileostomy bag or a colostomy bag for the rest of my life. AJ [ more ]
All j-pouches are created to replace the rectum, thus are considered a "neo-rectum." Most members here have an ileal j-pouch, made from the small intestine and have had a complete removal of the colon and rectum for ulcerative colitis or polyposis. In the case of rectal cancer with a low anterior resection, a colonic j-pouch may be created to replace the rectum. The difference between the two is that a colonic j-pouch will produce a function more similar to a normal colon and rectum, while... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Oh, I am sure there is profit to be made, as there is a great expense in preparing the transplant. I would suspect that over time they will grow the perfect fecal microbiotica in the lab, removing the need for continuous donors. They then can market it in pill or capsule form, or even enema or suppository form. But, the jury is out on whether it will be useful for IBD without C. diff infections. This is because they are unsure of the role of bacteria in the inflammation cascade. The current... [ more ]
I am curious what other form of medication can get as high a success rate as FT against C. Diff? And since it's a treatment that pharmaceutical cannot make billions on, would that slow the rate of adoption rate versus other forms of treatment? I also wonder if this treatment would be effective against all forms of inflammation, including Chrones, Colitis, pouchitis, etc? (Oh, thanks, Sharon .. now the neighborhood dog owners will charge us for their stool donations!) [ more ]
Wow! It is finally mainstream and acceptable to talk about on CNN... I asked a friend of mine who is a Vet andhe says that he uses the technique regularly on dogs who are antibiotic resistant...no problems at all with doners...They are everywhere! He obtains great results. Seems that Vets have fewer prejudices and contraints than humans on many treatments. Sharon ps. Thanks for the article [ more ]
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J-Pouch ForumsGeneral Discussion
i was struggling with the same questions/issues after takedown a year ago. recovery/adaptation times vary widely from person to person. my recovery took about 6-9 months, but my takedown almost failed because of my height, and the surgeon had to perform a pelvic resection to make things reach. this one of the reasons i think mine took "longer to adapt." other reasons: stress, diet, family issues, bad relationship with GI doctor. everyone is different, try to be patient and listen to your... [ more ]
It seems to take anywhere from 6 months to a year to reach what will be typical j-pouch functioning for each of us. Patience is not easy but very, very necessary Best wishes! [ more ]
I agree. You should not worry. Your concern is a very common one. Expect improvement by 8-12 weeks. Improvement, NOT perfection! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I'm on Cipro long-term, and I've had great result with few side effects. Nevertheless, it's well worth exploring whether it's necessary in each case. Most cases of pouchitis really are cleared up with a course of Cipro or Flagyl, and they just don't come right back. It's also worth considering whether some gentler options (like VSL) can reduce or eliminate the need for antibiotics. [ more ]
I have the same fear for my son. His experiences sound very similar to yours (except he is now diagnosed with Crohns). He is 3 months post takedown, they started him on Flagyl for pouchitis but after almost 2 weeks it didn't have any effect at all. I asked his doc if he could try Cipro and within 12 hours of his 1st dose he had significant results. He was having 12-15 bm's thru the day, 3-4 at night with accidents...and is now down to 5-6 per day with 0-1 at night and no accidents. He had a... [ more ]
Daniel, it might well turn out to require antibiotics long-term, but there are some other things worth trying before coming to that conclusion. Have you tried VSL #3 DS in significant doses? It's expensive, but it can help prevent pouchitis from recurring, or at least delay recurrences. Also, some people get good results by significantly reducing their carbohydrate (sugars and starches) intake. If you can manage that it might provide a surprising amount of help. Good luck! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Definitely drier - aging, along with no colon - not a great combination in my situation! Not just my face, but my hands, feet, legs... I've taken to mixing my own concoctions and have found coconut oil to be especially good in dealing with the dry feet situation, as well as nice everywhere else. [ more ]
One thing I noticed (but this was 15 years post pouch surgery), is that losing a lot of weight caused a lot of facial wrinkles to appear. I guess losing signifigant fat definitely can make the face appear more aged and dry. But, in reality, it is just the loss of the fat and the skin was already old with some loss of elasticity. Jan [ more ]
Thank you guys! This helps! It's a minuscule thing to worry about---but I thought I'd ask anywho. My UC has been so bad this past year and I've noticed my skin has aged fast on my face. Probably from the stress and loss of nutrients. I'm excited for my j-pouch surgery! It'll give me a chance for a real life! [ more ]
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J-Pouch ForumsGeneral Discussion
For a few weeks post op, opiates are fine. Plus, there is the added bonus of bowel slowing. Pretty small doses can be quite effective for taking the edge off. Just don't expect to be pain free, just comfortable enough to function. Some people like tramodol, which is similar to an opiate, with less abuse potential. Walking and moving about will help mitigate the pain, paticularly the considerable gas pains you can get early on. Don't walk hunched over, but staighten up slowly before your fist... [ more ]
Got knocked off the internet. Anyway, my family doctor will be able help me. Was the 2nd of the 3 surgeries this difficult on others and if so, what did you do to get the pain under control. My skin even hurts, I have to wear big pajama pants that have stretched out elastic waist bands, can't tolerate it touching my skin. And how long after the 2nd surgery did the output in the ostomy bag begin to thicken up? I've been trying to only eat, when I can tolerate eating, things that will bulk the... [ more ]
I did not realize ibuprofen will do that. I will stop it. I thought it was a high dose anyway. I don't drink any alcohol but I don't like taking lots of Tylenol either so I cut back on that. I'm having a difficult time getting the pain under control, the pain meds they sent me home with, I can't even tell if they're working. i see my regular family doctor tomorrow and she'll get me to where I can function [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Jan! After taking a probiotic for 4 days now, I don't think they are for me. I'm having more bm's and having difficulty emptying. [ more ]
I think what Scott was referring to was that the terminology of digestive health is not used in the medical field (as it is vague), and is mostly used by those selling supplements. This is OK because supplements cannot be marketed to treat a disease. Unfortunately, there are numerous probiotic products out there, some of better quality than others. Plus, few have been studied in those without a colon, which makes the workings of our gut very different. For the most part, any that were... [ more ]
Is that your opinion or a documented fact? [ more ]
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J-Pouch ForumsGeneral Discussion
To answer some of your questions: I had j pouch surgery 5 yrs ago. I can hold a bm for quite a long time if I have to. Example: I was at concert a couple of weeks ago and the public restrooms were positively disgusting. So held it until I got home and that was 4 hours. It was pretty uncomfortable by the end but I at least I can do it. Point is I have zero urgency. I haven't had to make any life style changes after my surgery. Things only improved. I would do this over again in a heartbeat! I... [ more ]
I would do every thing possible NOT to have surgery. 15 years ago there were not too many options for me. Although because my disease was severe I probably would have ended up with cancer at some point. As for bag or pouch. I don't know what to tell you. First had the bad for a year cause I had complications from the surgery. The pouch did have an adjustment period. But I also had to deal with chronic pouchitis from day 1. At first meds keeped it in check. But by year 14 every thing thing... [ more ]
I'm about six weeks post-takedown, and in the last few days things have gotten really good. I was dealing with cuffitis and pain in the pouch, but now my pouch is much quieter, with no pain. I go around 6 times a day, including usually one at night. Yesterday I went back to work for the first time since February. It was great! No worries about running to the bathroom, no pain, no ill feeling. I was in a terrible flare before the surgeries for a year. I was very sick, and almost died of a... [ more ]
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J-Pouch ForumsGeneral Discussion
Just wanted to follow up. I went back on Cipro and felt 100% better within a day. [ more ]
Maybe you can try it again and rotate it with a different one. I'm rotating Augmentin and Xifaxan but the Xifaxan is very expensive. [ more ]
When Cipro stopped working for me, adding Flagyl did the trick. I tried other individual antibiotics first (Augmentin, Xifaxan), since one drug is preferable to two, but none were effective for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Your situation is similar to mine, dx with UC 20 years ago, surgery the following year and the last 15 +/- years have been relatively smooth, and then problems started popping up. Tests revealed Crohns, and my doc had put me on first 6-MP and then Humira, which helped somewhat in reducing inflammation and symptoms, but not completely. Now I am trying to improve things with my diet, so far, eliminating all grains has been helpful, and when I do eat bread, I notice some bleeding. It's stil not... [ more ]
Hi, Your stories sound similar to mine!! Had j pouch formed 1992 for UC and developed all kinds of problems about 5 years ago and re-diagnosed with Crohns. Is it really Crohn's or an older pouch problem...who knows?!? Remicade was a lifesaver for me. I loved that drug. Unfortunately, I developed lupus like antibodies about a year ago and that was the end of remicade for me. Tried Humira and cimzia but have had fistula/abscess formation on them so I am planning for perm ileostomy. I despise... [ more ]
Thank you very much [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Yes! It will get better. I didn't have the frequency issues you are having, but I did have severe rectal pain and pressure. I saw my surgeon about two weeks post-takedown, and he diagnosed cuffitis. Medications helped, and I'm also on a low dose of anti-depressant for irritable pouch syndrome. I'm six weeks out now and feeling really good. Do you try to hold it when you have the urge to go? I know with UC there was no chance of holding it, and I was so used to having to run to the bathroom... [ more ]
I was there two weeks post takedown. It. Was. Horrible. I actually started doing a BM tracker app, he'll why not I am in the bathroom anyway?! It really did take weeks to see a trend. I have a menagerie of pastes. I think using an antispasmodic early on would have been helpful. I take levsin. I think earlier use of choleystiramine May have helped. I was treated for pouchitis around three weeks out. But sadly, frustratingly....time is the big helper. Now four months out....I have an idea of... [ more ]
I clearly remember thinking I had made a huge mistake after the surgery. Although I didn't liket the 'bag' it seemed preferable to the ridiculous number of bathroom trips, the burn, the frustration. I know that there was a marked difference at four months and then another qualitative difference at six months. I never did get to the four to six bms that are supposedly average.I am more like 7 - 8 but it all feels quite comfortable now. I urge you to be patient, to use a 'thickening agent'... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
knock on wood the diversion pouchitis has not been an issue. I will be having my redo/revision on October 19th with Dr Remzi at the Cleveland Clinic. I remember when i had my pouch initially i dealt with cuffitis but Canasa cleard it up and minor pouchitis at some point but i took Entocort for several months and it went away. I never really did the antibiotic thing. I have a very nice pouch, it just has this damn leak and a sinus as well. lol [ more ]
Pouch, hope you are feeling a little bit better. Jeff has diversionary pouchitis as well. If he has any symptoms, I have no idea what they are. Come to think of it, he did have a little bit of bleeding. But other than that has been doing ok. [ more ]
I was diverted back to an ileostomy over a year and a half ago due to a jpouch leak. The only symptom i had with the diversion pouchitis was alot of bleeding. Dr Shen went up with a scope and sprayed pouch with dextrose and plugged it up with a tampon, yes a tampon..lol. after two days bleeding stopped completely. A month or so afterwards i started to notice a little blood again, and i did the Rowasa enemas before bed for 3 days and it was all better [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsOstomy & Skin
I'm eating thicken foods and Ensure plus. I guess my body is still healing. I think it will be a while befire I head back to the gym Unfortunately. I'm not recovering very quickly and it's so Fustrating to be tired all the Time from simple stuff. [ more ]
Ally, I have an end ileo so my output isn't liquid (unless I eat ice cream or drink a lot at one time.) I hold onto food much longer with the end than the loop. I was very underweight with my temporary loop ileo five years ago and throughout my five years with my jpouch. I gained five pounds about one month after my last surgery and am holding although I eat a lot (it took me at least six weeks to feel comfortable eating anything.) I teach exercise classes to older seniors so it's not very... [ more ]
Exercise can help you GAIN weight, because it helps build muscle. You don't build much skeletal muscle just laying around. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
everyones food suggestions should just be suggestions because what works for some doesn't work for others . I am like 10 months out and I'm still having difficulty and figuring out foods. I don't eat a lot of salads because it doesn't break down well enough for me because of a very narrow " exit" . Lots of people day things like " well I didn't baby mine and just ate what I wanted right out of the hospital" well that didn't work for me unfortunately and I'm sure some things I eat you all eat... [ more ]
hey, i would not say salads are bad for the pouch. I eat a salad atleast once a week or twice a week. While, a salad is considered roughage for like a newbie j-poucher. No literature or doctor on the planet will tell you "salads are bad for the pouch" because that isn't true. What works for some of us, eating wise, isn't the case for everyone with a pouch. Some can eat what others can't and visa versa. Eating ANYTHING with a pouch is TRIAL and ERROR. But i would'nt go as far as making a... [ more ]
Hmmm. I eat raw salad every day, and have done so since my pouch surgery in 1995. Never had a problem with them. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello Polaris I really appreciated reading your story. I am 2 and half months post surgery and suffering with the same symptoms you are. My G.I. Dr. and my surgeon keep telling me I should be patient, that it isn't an exact science and it can take 6 months to a year to settle down. I am so fed up that I am considering having my ileostomy again. My colitis was so severe, that the last time I was hospitalized in Sept 2011 I begged them to take my colon, which they couldn't save anyway it was... [ more ]
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Polaris, I have been in your shoes not long ago. I'm sorry, but you have a lot to realize about the position you are in now. Two weeks is not nearly enough time to make any kind of judgements about your j-pouch. You can start making these assessments on a scale of months. By getting the j-pouch you have taken the plunge, and now you have to try to swim. Right now, you just have to treat your symptoms as best you can and achieve the highest quality of life you can achieve right now. I don't... [ more ]
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J-Pouch ForumsOstomy & Skin
I wonder why my surgeon gave me a loop and not an end? Can u reconnect with a end? Would u ever consider it again? I would ask your surgeon for some meds like Canassa or fatty acid enemas. [ more ]
Hey all, thanks for your responses, I did have my pouch disconnected 5 years ago due to pouchitis. I have been good since then, but after reading some posts on the forum I think I have either diversion pouchitis / colitis or cuffitis . I hope I can find a way to manage this without needing to remove it with another surgery. I actually have an end ileo - not a loop. I don't have trouble with calories - but if I were you I'd seek help from a dietician. Thumprhare - Im not sure this is period... [ more ]
Saff, I get this a lot, Why were you just discounted? Had emergecry surgery due to bad pouchitis. Im assuming you have a loop like me. Im having real issues. I have to wear convec to stop leaking which is not comfortable. I can't get enough calories into me this is a real problem Any help would be appreciated thanks [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
The reason for taking antibiotics for some dental procedures is precautionary for your heart. I think the antibiotic was okay, it may depend on what kind of antibiotic it was? I had c.diff several times with my colon and the first time it was caused by Cipro. Before I had chronic pouchitis I had to get 2 stitches in my lip. The Urgent Care doctor prescribed a heavy duty dose of the same antibiotic given Pouchomarx. I contacted my Internist and she said NOT to take it as I would notice right... [ more ]
had a few very hard chips come out of bag this morning so hopefully the rest will be passing soon as well [ more ]
I would think after being exposed to gastric acids it would be pretty broken up by the time it gets to the end of the line if you find things are not passing then you can start to worry. [ more ]
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J-Pouch ForumsGeneral Discussion
Poucho, you and KNKLHEAD are real adventurers! Was it something like a reed, used for clarinets and saxophones, in shape but made out of resin? You are brave! I need to search your past posts to see what they used the grafts for. It is a mucus like consistency. [ more ]
Come on, don't keep us in suspense already! Did you pass it? [ more ]
Hope it's all still passing! (Or already passed!) [ more ]
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J-Pouch ForumsGeneral Discussion
First time my pouch was created I had to use a self-catheter for 3-4 months before I was able to finally pee normally. Also had some ED issues for 1-2 months. So to answer your question, yes it is a real possibility especially since they are hling to be working down around those nerves. [ more ]
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William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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