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J-Pouch ForumsGeneral Discussion
4 months past surgery - a few problems.
New pouchie Nicolajs, you history is EXACTLY the same as mine! I am also 4 months post op as well! [ more ]
Nicolajs Thank you guys for your answers, it's really helpfull. I went to my surgeon and he took a look inside the pouch and everything looked fine. He told me that as long as the bleeding was just a tiny bit on the paper, i shouldnt be worried but if it gets worse I should contact him again. Often it's just a tiny bit on the paper, but every once in a while there is also some blood in the toilet. Hopefully it's not pouchitis beginning. It's now a few weeks since i stopped taking the antibiotics, and... [ more ]
lholdem I felt like it took me a good year or so to get things kind of “normal” - I think the full healing process takes longer than we think. Plus there was the added challenge of finding a new normal with how your pouch operates. I highly recommend doing the FODMAP elimination diet - it really helped me in discovering what foods made me feel gassy and terrible. And in general try to baby that new pouch- mine does sooo much better for me when I’m taking care of my body. It lets me know really quick... [ more ]
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J-Pouch ForumsGeneral Discussion
Handling other illness after surgery
JanW2 Thank you Sharon I am not on Facebook, but will get on as I am really excited and interested in connecting with other Kpouchers! Have followed this forum since 2006 without comments till now. Have appreciated everyones help. Janice [ more ]
skn69 an, I am one of the oldies on this site...I have had my k pouch in one form or another since 1979 after a very long and painful journey since birth. I faced it all with courage and stoicism until I couldn't. No one had told me about the colon/brain connection and that fact that our colons produce something that helps us keep calm? Stable? Emotionally balance? Who would have guessed? (thanks for reminding me TE Marie). It explains a lot... If you wish to talk with k pouchers, share and ask... [ more ]
JanW2 Happy Easter to all! After reading all of your thoughts so far, I’m feeling less alone! I’ve had 2 j pouches and 8 months ago received the Kpouch. I’m not a candidate for an ostomy anymore . So many things have happened that all it takes is the thought of a blood draw, which is quite an ordeal for me, to make me feel like I’d rather just die. Medications must be crushed or liquids so not always available... I get really depressed and easily aggravated with how life is now, afraid of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Symptoms or Something Else?
Scott F If it’s ordinary pouchitis (and it might be), then Levaquin may help within a day or two. If it’s C. diff, though, Levaquin is a very poor choice. Is that what you meant by “CD?” “CD” most often means “Crohn’s Disease” in this forum. Has your stool been tested for C. diff? The strong smell is sometimes a sign of C. diff. The joint pains aren’t very helpful, I think, in figuring this out. And lots of us have unsettled GI tracts for some weeks after a viral infection. [ more ]
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J-Pouch ForumsGeneral Discussion
I think I have Crohns
CTBarrister Well that explains it. You probably do have Crohn’s (that’s my operative diagnosis as well) but your main concern should be finding a proper treatment that works. Entyvio will hopefully be more effective than Remicade and Humira. [ more ]
AARON It is also not SIBO. I was already tested. [ more ]
AARON I have ulcers in multiple places. As far as the duodenum. So I really wouldn't think that could be caused by backwash ileitis. The reason I got the surgeries was because remicade and Humira failed. Can't go on them. That leaves Entyvio. [ more ]
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J-Pouch ForumsGeneral Discussion
What to do? Pouch redo or permanent ileostomy
BillV You may want to look up Dr. Zane Cohen in Toronto for a second opinion. I do not know to what extent he is still in practice, but he might recommend a doctor in Canada who could help you. In the event that a pouch redo is not an option, there are two procedures that do not require an external bag: the K pouch and the BCIR. There is a lot of information about them on the internet. The button hole size stoma is placed lower than that for a conventional ileostomy and is covered with a small... [ more ]
Scott F I think you ought to get a qualified opinion to inform your choice. Dr. Remzi is certainly qualified, and perhaps you can plan to make a trip to New York a delight instead of a burden. Broadway show? Museums? Dr. Remzi might even know of a qualified surgeon in Canada for you - perhaps someone he’s taught. Also: a permanent ileostomy generally works much better than a loop ileoostomy, but it will look pretty much the same to other people who see it. Someone actually worth spending your life... [ more ]
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J-Pouch ForumsGeneral Discussion
Just Checking In, fellow j-pouchers :)
skn69 Hi Steve, What wonderful news...on all fronts...how wonderful for your daughter that she has found a safe environment to feel free and be herself. It is essential for her healthy development. I come and go on the site but mostly I try to pop in on a regular basis to see what everyone is doing and how I can help (if possible). Things are stable here, pouch-wise... I try hard to maintain some sort of balance in my life, both food and exercise but I have had 2 broken arms (1 is healing the... [ more ]
ElmerFudd Wow - this thread is great guys! Thanks for stopping in and updating everyone. Glad to hear from you all, and glad (overall) things are going well for so many! Steve [ more ]
J moons ❤️
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J-Pouch ForumsGeneral Discussion
Percocet in my bag found whole?
Lew I have a pouch and I have learned to bite my pills to avoid them showing up in the toilet! One of the pills I take I bite several times to make sure I get all the benefit from the med - it tastes bloody awful but guess that’s the price I pay! (Often wonder how long they were going through me before I noticed, LOL)! [ more ]
CTB23 I had a fish oil pill show up in my bag when I had the temporary ostomy. Now I chew gummies. [ more ]
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J-Pouch ForumsGeneral Discussion
Insurance assistance - new Forum?
Jan Dollar We already have a lot of forums, so it probably will not happen. Also, there are so many variables. Different health plans and health plan companies. Different providers. Different states. The ACA regulations are nationwide, and the “no cost” colonoscopy is part of the ACA. However, to be “no cost” it has to be a routine screening colonoscopy. Once you have symptoms and/or a diagnosis, it is for diagnosis or follow up/maintenance. If you have a j-pouch, you ovbiously have a prior related... [ more ]
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J-Pouch ForumsGeneral Discussion
What Is The Monthly Cost of Your Private Health Insurance?
CTBarrister I have considered moving to Canada, and I really love Montreal, but it's just way too cold. The winters in particular- my goodness what cold! I definitely agree that for sick people like us, Canada has a better health system. In the USA you pay for being sick, in a big way. [ more ]
valli I literally had no idea what you paid out of pocket. Yes, I am Canadian. My whole life I wanted to live in the states Florida. But now I know if my parents originally from Poland settled in the states I would be officially bankrupt I work for myself. Two surgeries in three months and one left to go countless attempts with meds Hermia etc.... trying to send me into remission from my colitis which didn't work. What would happen if you didn't have insurance you work for yourself like I do? And... [ more ]
ceew I pay a little over $1,800.00 per month. $2000 deductible then they pay 100% after that if I use an in network provider. They also pay medication after I reach deductible. Before I had J-Pouch surgery I hit my deductible real fast but not anymore. The price is ridiculous! I’ve checked into cheaper policies but I can’t use the doctors or surgeon that I now use. Deductible much higher too. [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch or Permanent Ostomy?
StarKitten Thank you all, I'm hopefully going to see about planning a surg for a jpouch in June. (Or May, but prefer June) [ more ]
marc nolan I had a bag for 13 years, by choice, as I was afraid of the issues with a J pouch. For me, it was fine, it let me eat and drink everything apart from popcorn. I emptied , as you say 4-6 times a day, emptied lots more with alcohol and fried food. i eventually got it reversed and had a temp ostomy that produced so much more, it was not as comfortable. Having a J pouch for me has its ups and downs but I am delighted I did it, I have my issues with it but I am learning. I am in the minority as... [ more ]
Mysticobra Well put Scott. [ more ]
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J-Pouch ForumsGeneral Discussion
Problem constant urge to poop
Scott F This could also potentially be a spasmodic pouch. If so, your doctor could provide an antispasmodic (like Bentyl or Levsin) until this calms down. [ more ]
Still Standing You might want to be checked for pouchitis. One of my symptoms for the ‘itis is urgency to go whether or not much comes out. [ more ]
Former Member I experienced a similar sensation accompanied with excruciating pain a few days after takedowm; the uncontrollable urge to bear down & pass what felt like a golf ball sized object but nothing would come out. On the advice of the Hospital Pouch Nurse, I applied ilex Protectant Paste just to the inside of my anus, which instantly alleviated the pain and within a matter of hours the uncontrollable urge to open my bowels also ceased. However, on the ilex packaging and tube, it does state FOR... [ more ]
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J-Pouch ForumsGeneral Discussion
2nd surgery out of 3 when will I feel better
valli Thank you for the advice and knowing I am not alone or imagining the pain helps. I do walk down the street with the help of my kids once or twice a day, as hard as it is I fight the pain and just do it. Just so looking forward to getting all these operations over and done with. [ more ]
CTB23 Definitely got better for me after the third surgery. [ more ]
Still Standing It will get better, but as everyone else has said, "This surgery is the worst". All that flipping and twisting of our insides takes a while to recover from. My doctor mentioned that I could alternate between ibuprofen and Tylenol every two hours to help alleviate the pain. It took the edge off, but time is the only cure Keeping you in my thoughts and prayers! [ more ]
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J-Pouch ForumsGeneral Discussion
2 Weeks and counting to Permanent Ostomy
maggies4 ❤️
TE Marie I had to make the same decision to have my j-pouch removed. I wish I'd made it sooner. I am off all medications I was taking except I still take hydrocodone for adhesion pain. That is minimal compared to what I took before. My surgeon too spent 5 hours lysing my internal adhesions during the 8 hour surgery. The permanent ileo is on the left side whereas the temp ileo had been on the right. I was in the hospital 5-6 days afterwards and the recovery was much easier than after... [ more ]
Croachpa Thanks Bill, I talked with Dr. Schiller in LA about the BCIR and while I am a candidate for the surgery - He feels will all the problem of chronic pouchitis it could show up again and cause problems with either a K-pouch or BCIR and I could loose two more feet of bowel and have to have additional surgery. I've decided in my case that the risk is too great, with my history. Thanks, Carolyn [ more ]
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J-Pouch ForumsGeneral Discussion
Chemotherapy with a j-pouch
Auntie JoJo Hello, I have a jpouch, (2000-2001, UC for 30 years) and was recently diagnosed with CLL Chronic Lymphocytic Leukemia. I now need treatment and based on research and patient reports over 50% of people have diarrhea from mild to severe on the drug will be taking. Ibrutinib or Imbruvica is the name of the drug. Has anyone on had chemotherapy, biotherapy or immunotherapy and how did their pouch do? What kinds of therapeutic interventions helped? Thanks so much. [ more ]
mgmt10 I don't have any experience with this but I just wanted to send well wishes your way for a complete recovery. [ more ]
skn69 I am so terribly sorry for you cjay, Unfair does not cut it. I barely remember...I was so young and I have a k pouch (but that should not matter really) I did 2 sorts of chemo (they are not always the same drug, chemo is just a catch all name for a nasty chemical treatment against cancer these days)...for vaginal cancer due to DES...I remember being sick as a dog, throwing up my guts (I was around 25 at the time) and losing about 30lbs in 1 month. They hospitalized me for 31 days then gave... [ more ]
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J-Pouch ForumsGeneral Discussion
red meat bad?
CTB23 I eat some red meat, on occasion, mostly in chili with ground turkey also. I very rarely have steak, unless it's a filet. Mostly fish and chicken. I just try to eat it in moderation, like Jan suggests. Not because I worry about my pouch, just because I've always eaten this way. Also, my husband has to watch what he eats. [ more ]
MIKEEY I eat burgers once a week and seems to not bother me. Just love spiral ham or baked ham ans keep away from it and wondered if it digests well with pouch? [ more ]
Spooky I agree with Jan. I love Mexican and Indian fare. In moderation, these choices are worth the butt burn! More on topic though, and this can't be repeated enough: what is a trigger for some is fine for others. For example, even though I eat mainly vegetarian, I don't tolerate mushrooms or peppers or corn, though these are staples in many vegetarian diets. Carbs for me, it depends. I'm okay with having pasta once in a while, but if I eat it too often, I have problems. You'll probably find a lot... [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch and diabetes
Winterberry Hello, Kim. I am doing really well. My surgeries were completed two years ago! I have no complaints with my j pouch. The first few months of j pouch life were difficult with frequency, burning, and a few bouts of pouchitis that were resolved with cipro and food choices. After the first tricky year, everything settled down and I can eat what I like, but I always avoid nuts and seeds because they don't dissolve. I can even eat spicy food! The challenge now is getting my diabetes A1C glucose... [ more ]
Scott F While it’s true that carbs tend to be helpful during the post-op period, in the longer term many J-pouchers do much better on a low-carb diet, since that seems to reduce the impact of pouchitis. While it may take some exploring to find what works best for you, reducing the carbs tends to be very J-pouch-friendly. [ more ]
Trotts Hi, I thank you for all the information you have given me! I have done a lot of reading on low carbs, high fat, processed foods. I just brought Michael Pollan's book "FOOD RULES". I am learning a lot about lowering my A1C. I don't know is all of the things that I have been doing is going to work because the doctor said I have a 50% chance of getting type 2 diabetes because both parents had it in there 60's. I am 60. I am the type of person to over do it with exercise and diet. I am not... [ more ]
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J-Pouch ForumsGeneral Discussion
fistula seton
n/a Well, in my case it did not stop the drainage. I don't understand all there is to know about fistulas ... I personally still don't know how the seton could stop all drainage since my fistula is connected to something that holds poo (the jpouch). My drainage only let up - almost completely - after the pouch was disconnected. No source of poo, no drainage. I'm guessing if I were reconnected (NOT going to happen), the drainage would resume. However, I think every fistula is different - widths,... [ more ]
JHendrix Thanks for your input N/a. I am correct in assuming though the seton would not stop the drainage of the stool from the pouch to where ever it ends? [ more ]
n/a JHendrix, I've had my 1st fistula with seton for 6+ years now. A newer one for about 5 months. My 1st one is termed an RV fistula, but it's not really, it comes out just below the V opening. Anyhoo, I was told by my CRS that a seton would allow the inside skin of the fistula to "heal", thus possibly helping a future repair attempt to be more successful. For me, apparently the healing didn't take place, but the draining did slow down quite a bit over time. I had planned on living with the... [ more ]
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J-Pouch ForumsGeneral Discussion
Digestion Question
Patricia Walker Yes after over 40 years of K pouch I now have this problem. I would imagine mine is due to adhesions. So painful as food passes. [ more ]
Nora S. If it's liquid or liquidy like yogurt, regardless of what's in it, no pain. If it's a food that has to be chewed, even if it's just one chew and swallow, then it's an issue. I also have multiple hernias, again. Not sure if those may be causing problems!! Just wondered if anyone had this happen. I've had the pouch for 2 years now. Thanks for the info you guys! I'll contact my Gastro. [ more ]
CTBarrister It sounds like it could be a partial obstruction. I would definitely go to see your GI or Pouch specialist. If this doesn’t pass some testing may be warranted. [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch
Still Standing HI Isabella, I think your doing the right thing in finding a different doctor. You need someone with the heart of a teacher and who is knowledgeable about J-pouch issues. Unfortunately, we are different than the 'normal' colon people Have this new GI check you for possible pouchitis. It could be you're having issues due to this or another issue that medicine can help. That said, you might want to try to adjust when you eat certain foods and see if that helps to control output. I only use... [ more ]
Isbella Hi Bill thanks . My doctor is not very useful , she has no time for questions.She is always in a rush. She just love to do procedures I guess! I am looking for another doctor right now. We all had some issues but this is what we have to live with...Take care [ more ]
Isbella Thanks Scott. I have to look into that . My doctor and a pharmacist had advise me to take that but it added more bathroom trips. [ more ]
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J-Pouch ForumsGeneral Discussion
Banatrol
TCM I tried Banatrol a few months ago but it neither helped nor hurt. I am still trying to find the right dosage and frequency of Metamucil. So far, it seems to work the best for me but still far from perfect. It may be HOW I'm using it rather than what. I take a teaspoon of it mixed with 2 heaping spoons of applesauce first thing in the morning. I do pretty well then until late afternoon, so I may start taking an equal dose in the early afternoon to see if it helps. Or maybe stir it into my... [ more ]
ChelleH Any updates? I'm an RN and out nutritionist is launching this as a pilot for cdiff patients. I instantly thought it may benefit to prevent leakage. . [ more ]
TCM So here I am nearly 2 years later, investigating Banatrol. I changed primary care docs last week and he suggested I consider it. I asked my GI surgeon and she thought it is definitely worth trying. She advises I start with just Banatrol, then if I need to, add psyllium back to my daily routine. Banana flakes and fiber are apparently very different from each other, but possibly complementary. I have tried so many things without much success, so if a doc said to try standing on my head to and... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch with Diabetes (Metaformin)
Scott F I think it’s important to start with an understanding of exactly what’s wrong. Has your surgeon offered a diagnosis? Do you have (or can you find) a gastroenterologist who might know more than your surgeon about non-surgical explanations and options? If you are being told that it’s chronic refractory pouchitis, have treatment options other than Cipro and Flagyl been tried? Other antibiotics? Biologics? Probiotics? “Pouchitis” should be considered treatable until a careful and thorough... [ more ]
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J-Pouch ForumsGeneral Discussion
Is it possible to absorb nutrients from greens?
skn69 I eat salads constantly...I just have ways of eating them...I tend to eat the chicken with the lettuce without the bread or carbs...that way I seem to digest things better. When I eat salad with both carbs and proteins I tend to have digestive difficulties... Other than that...no problems...I cannot tell you what I absorb or don't...just that I enjoy it and tend to eat for pleasure and not just for nutrition. Sharon [ more ]
CTBarrister Melissa- You do realize that nutrients are absorbed in the ileum whether you have a colon or not, right? What difference does not having a colon make? Your transit time of food through the ileum is what counts, and it is only marginally less with a J pouch than with a colon. Your colon functions to absorb water and break down the waste. Without the colon, the transit time through the ileum is only shortened to the extent of the shortening of the ileum for the J Pouch. And to the extent that... [ more ]
melissa111 I kind of get that, but I still wonder if it stays in long enough when you don't have a colon. [ more ]
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J-Pouch ForumsGeneral Discussion
SCD vs FODMAP?
JHendrix When I try making dietary changes or a supplement, sometimes I think it's as much my way of feeling like I'm at least trying. It may just be my way of feeling hopeful. There is always the danger though of making ourselves crazy trying every suggestion we come across. (Whether it helps or not, I stick to a pretty low carb diet. Can't hurt. Might help?) [ more ]
Jan Dollar So here are my thoughts, for what they are worth. Sure, studies show an increase in IBD once regions become industrialized. So, maybe, yeah diet may play a part in triggering IBD in those who are genetically susceptible. On the other hand, there just does not seem to be a strong correlation that diet does much to induce or maintain remission, once IBD manifests. In regard to eating a “great” diet and being more healthy and fit goes, eating a varied diet with fresh, whole foods is healthy,... [ more ]
CTBarrister It definitely could help. It did for me. But, I don’t think the proper inquiry is which is the best diet as opposed to what principles from all of these diets are going to best benefit your son. scott, I am not accepting of the theory your post puts forth that having 2, 3 or 10 relatives with IBD shows it’s genetics and not diet. It’s the other way around. The genetics provide a disposition to IBD that is then realized when a certain type of diet is consumed. Until the industrial revolution... [ more ]
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J-Pouch ForumsGeneral Discussion
How much straining is normal and can it cause strokes or heart attacks?
CTBarrister Actually this is what killed Elvis Presley, straining on the toilet from constipation due to his addiction to prescription pain killers. He was found keeled over in front of the toilet seat, pants around ankles, dead. First of all, do not abuse pain killers. Second, if you do get constipation from taking bowel slowers, counteract it with natural laxatives, or reduce the bowel slowers. Last, don't strain. Not only may it cause a fatal cardiac event, but even if you have a healthy heart, you... [ more ]
Jan Dollar Anal manometry for the most part. This abstract lists the various tests. https://www.ncbi.nlm.nih.gov/pubmed/28259741 Jan [ more ]
melissa111 What does a doctor do to test your pelvic floor function? [ more ]
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J-Pouch ForumsGeneral Discussion
Weight loss on purpose 😀
BillL First of all, congratulations on losing 33 pounds! That’s awesome! I had my single stage surgery in 2016, and went into the surgery already wanting to lose 20-30 pounds. The first 9 months afterward were torturous, with small intestine failure resulting in 10 days with an NG tube, constant trips to the bathroom, etc. Yet somehow, despite the feeling that everything that I ingested ran through me at lightening speed, I frustratingly gained 50 pounds in 6 months! I’m not sure how I managed to... [ more ]
lclassen Thanks Scott. I have been on Metamucil for 20 years, but went off of it for the diet. It's probably a good idea to start back on it. 😊 [ more ]
Scott F Have you tried adding soluble fiber (e.g. psyllium) to bulk up your stool? That might be all you need. I’d avoid the sugar-sweetened ones while on a weight loss regimen, but Konsyl original mixes up pretty well as long as you shake it rather than try to stir it. If you can’t stand the plain old psyllium, Metamucil makes an artificially sweetened one. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy blockage/Cramps
Mysticobra Yes. And 14 hours of excruciating pain to find out afterwards it was a twisted bowl. Temp ileo. Soooo.. while they were in there they decided to hook up my pouch after only two plus weeks and get rid of the ileo. Pouch never worked. Ended up having that removed and now with an end ileo.. Which is ok. But I must say. That blockage was the worst pain I have ever felt in my life. Never ever want that again! I had my pouch a little over two years and never had a blockage. Not even the feeling of... [ more ]
JHendrix NickP. \ Are you ok now? [ more ]
NickP Thank you for responding! [ more ]
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J-Pouch ForumsGeneral Discussion
Turned out to be internal hemmeroid
Bubba1028 Thanks. Yea the burning goes away within a minute or so. I picked up some ointment today and have been using that. Thanks for the advice. [ more ]
Jan Dollar If the burn is constant. Stop using it. A little buring initially should be OK. Are you using suppositories, ointment, or cream? The suppositoriesand ointment are for internal use, but cream is more for extenal use. Jan [ more ]
Bubba1028 Been using prep H- it burns when I put it on the inside. Is that normal? [ more ]
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J-Pouch ForumsGeneral Discussion
Online support for Crohns
Saff Thanks, yes i've only just recently had a crohns diagnosis but there are others who alike. I agree. [ more ]
Still Standing To be honest, I’ve gotten the most help here. I realize we are all different in how are bodies adapt with a Crohns diagnosis, but I have learned so much on this sight by reading how other people dealt with similar problems. The greatest feeling is that we’re not alone in this fight. Someone else has been there too😊 [ more ]
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J-Pouch ForumsGeneral Discussion
cold weather = I'm a zombie
AI_matrix Sharon, that's perfect! I got more rice than a North Korean restaurant at hand. I eat boiled rice everyday. I did mange to get a heat blanket and its been working just fine. instead of a expensive hot tub I just fill my tub with hot water and bath in it . thanks for the input Sharon .. very thoughtful of you. allycat, I never been on a cruise before. With a world so crazy as it is I think I'll stay In where I'm at? But, maybe a trip to the south pacific would be nice? bluefire, I never been... [ more ]
Still Standing My family laughs because I’m always cold, even if they’re “boiling “. I blame the pouch, but notice it’s worse when I drink something cold. I’m thankful for my electric blanket, unless I forget to turn it off before I go to sleep, then I’m really really warm😊 [ more ]
BlueFlame Have you had blood work to check your levels? [ more ]
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J-Pouch ForumsGeneral Discussion
Members Here!
Jan Dollar Thank you Richard! Without Bill J’s generous creation and sponsoring of this site, we would not be here. He saw the need after muddling through on his own from UC to j-pouch to k-pouch. This support group is different and is why 8 have stayed with it for so many years. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Bad cramping
Jan Dollar Each person is different. You may have some internal scarring (adhesions) that causing recurring symptoms. If these episodes keep sending you to the hospital, it may require surgery to release the adhesions. In the meantime, you’ve gotten good advice. [ more ]
Bubba1028 Wow- 4 blockages- you’re a trooper! From my experience with blockages and from reading on here, this is what they suggest- lots of fluids, walk and try to get the gas out, beano or gas-ex, heating pad. Hope some of that helps. Given your history, you may want to give your doc a call. It could just be you’ve got a kink in your small intestine and the loop keeps kinking in the same spot. [ more ]
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J-Pouch ForumsGeneral Discussion
Is J-Pouch Surgery Worth it?
Mike in MD Hi all, i registered some years back but I don’t believe I have ever posted - here’s my short story My experience- I’m happy with the surgery (1990 at 27, active male) - had UC along with IBD Arthritis. The surgical process was an ordeal but my UC had worsened to the point it made life hard. I fought it as long as possible 6-7 years but finally Md’s said colon had to go. Dec 1990 - colectomy, spring 1991 pouch creation, summer 1991 takedown. Other than a trip back to the hospital that year... [ more ]
njpublish I had UC for 20 years and got a jpouch 10 years ago and can't tell you how pleased I have been post surgery. No more running to the bathroom concerns, no cancer concern. I'm not on this board very much but saw your post and wanted to give some positive feedback. One of the best decisions I ever made. [ more ]
CTBarrister I have had a J Pouch almost 26 years after having UC for 20 years, and have battled pouchitis for almost 23 years. Pouchitis is kind of a different animal and different disease than UC. The pain I had with UC was searing and severe and the UC inflammation riddled my colon to the point where it was dissolving when taken out. This is not to mention that dysplasia has been found in the colon 9 months earlier and I had been asked to lose weight in preparation for surgery in the interim. My... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking lomotil for years
cr Ally cat ! You’ve been thru the wringer!!!!!! I’ve had pouchitis a few times but not much lately. I added exercise to my routine and that must be what helps me. Then I go off proper diet and eat chocolate!i pay for it so back to yougurt, bananas, blueberries . I tolerate Raisin Bran and oatmeal. Good luck Allycat, after so much trouble [ more ]
AllyKat 3-4 count your blessings [ more ]
cr You are already doing better than when I had mine. Mainly cuz u don’t have to see surgeon for a year. That’s great! Hoping it will continue so well! Keep it up. It is worth it. Guess we really don’t need to hang on those colons!!!🤣 [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy Reversal
Mariiuccia Hi Nick I had my ileostomy for 5 years and then had my jpouch redo and reversed! Had some issues such as ileus where intestine paralyzed. After 5 months of hospitalization with A few medical challenges it has now been close to 3 years with my reversal! Need to watch my food intake but all is good! Wish you luck ! What was the reason for your 2 year wait! Mine was abscesses at Jpouch! If you have any questions I’ll be happy to answer them ! [ more ]
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J-Pouch ForumsGeneral Discussion
Bidets
Former Member ❤️
maggiemarsupial Before I bought the bidet toilet seat I just used an old squirt bottle and it worked quite well. It just needs to be soft enough to get a good spray going. Has anyone ever used perineal spray for their sore butt? I just saw some for new moms and thought it might be a good thing for us. It is basically just witch hazel and essential oils, easy enough to make ones self. [ more ]
Curly I am a renter and didn't want to bother with trying to install an actual bidet, so I got a very inexpensive "travel bidet" plastic squeeze bottle with a spout, via Amazon, and find it very helpful. It leaks a bit from the bottom and that's no problem at home, I just keep it on the floor next to the toilet, but I don't take it for travel - it hasn't been a problem. The Charmin Freshmates sound like a good idea for travel though - will check it out. Anyway, I recommend the squeeze bottle as a... [ more ]
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J-Pouch ForumsGeneral Discussion
Kind of a dumb question, but something I was always curious about
Former Member Jan. I could not agree with you more. Here in the UK, I regard it as a silly, child like question and I assumed "'dumb" meant the same in the US..... me and my assumptions; I wasn't criticising or attempting to belittle or discourage the OP. I'm not saying the questions is so silly or dumb to the extent that it should be ignored or not asked, regardless of an OPs age, otherwise I would never of replied. I just believed that answering a question of such a nature didn't warrant a wealth of... [ more ]
Jan Dollar Strange, I do not wish this to become a debate, so do not feel the need to reply. However, it is best not to make assumptions about a member. Would it matter if it was from a teen or someone with less education? People come here to communicate in a safe and welcoming setting. While no reports were made about the original post, there have been about your most recent reply. I am going to assume your intent was not hurtful, but it still comes across that way. Please try to avoid making those... [ more ]
CTBarrister Although a lot of you have focused on obstructions, gas and other causes, the most obvious and common cause of weakening of the intestinal wall is inflammation. I know this from looking at MRI Enterographies and discussing with my pouch doc. In 1992, after my colon was removed, my surgeon told me it was so riddled with inflammation that it was "dissolving in his hands". He then admitted to me the surgery should have been done on an emergency rather than elective basis. Toxic megacolon, and... [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade Relief!
Jan Dollar Yeah, well, Kaiser is like the original HMO. They don’t process forms for outside entities, other than filling out school/camp/sport forms. I’ve been filing my own rebates for years. Much easier when I was on Cimzia, since I had a pharmacy receipt. That’s OK. I am tenacious. Jan [ more ]
CTBarrister Jan, My doctor's office's billing department deals with Janssen Carepath. Since Janssen sent me a credit card over 2 years ago, I turned that card over to my Doc's billing department and I never had to deal with all of those administrative hassles you are mentioning. Although I did get a letter from Janssen recently that asked for stuff. And recently my doctor's office sent me a form I had to sign and return to Janssen. I think it basically was an agreement not to engage in fraudulent... [ more ]
ks1905 ❤️
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J-Pouch ForumsGeneral Discussion
How long should you give antibiotics to work
AllyKat I was never on Humira I had 2 doses of remicade, I was so so sick from it, I lost feeling in my legs as well. That was scary, took 3 months to get out of my system, but it did keep me in remission for over 2 years just those 2 doses. I was so frighten to have to go on E but it was that or lose my pouch. So frustrating to have to go thru surgeries and still be sick. [ more ]
Momma Allykat, How long were you on Remicade and Humira? Did you have a reaction or did they just not work for you? [ more ]
Momma That is awesome to hear and very encouraging. [ more ]
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J-Pouch ForumsGeneral Discussion
What is a pouch redo?
Jan Dollar Pouch redo is the same as pouch reconstruction. The only reason anyone would have it done is pouch failure (pouch complications that do not respond to any treatments and quality of life is such that the pouch must be removed and replaced, or removed and revert to permanent ostomy). Essentially, it is a last resort, and not always an option. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Passing large amounts of blood
rnj2010 Hi Lorna -- so sorry you are having problems. I hope all goes well for you! [ more ]
skn69 Lorna, Do you have something that you could put over the toilet that you could empty your pouch into (do you have a child's toilet seat for example or put a very lager, open container or basin on a chair) so that you can see the 'real' amount of blood and not just the blood mixed with water? This can help to assess how much you are actually losing. IF you start to get dizzy, see 'stars' when you stand up, start to feel very cold and tired etc...please go to ER. Also, start to 'chart' the... [ more ]
lorna Thank you so much for your quick reply, can't say how much less alone it feels. I' trying to stay positive and I'm seeing my surgeon tomorrow. Thanks again! [ more ]
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J-Pouch ForumsGeneral Discussion
Still have Flare ups occasionally
Jan Dollar This does not sound like pouchitis, which would not resolve on its own in a few days. This seems more diet related or like IPS (irritable pouch syndrome). A good idea is for him to keep a food diary to see if there are any consistent triggers for these episodes. If not, you can assume it is IPS, which is treated the same as IBS. Probiotics may help. Antispasmodics and low dose tricyclic antidepressants can also be prescribed for IPS. Jan [ more ]
drone3 Diet is quiet relative to each individual. For me personally trigger food is usually sugar, fruit, oily food, caffeine, wine, canned tomato, too much fibre and most preservatives. These foods have been good fresh eggs, fish, chicken, avocado, lettuce, cucumber, carrots, pumpkin, white rice. Keep things really simple, try stay away from sauces and spices until you can identify which ones can cause issues. For drinks stick to filtered water and herbal tea. [ more ]
Kimmer It usualy starts with major diarra.then he gets dehydrated.and then constipated.usually last 3-5 days.then He is really drained for energy.its my husband who has it.Then the storm is over for him.cant find anything on diets for someone with a pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Supplements
MRO Im trying to come up with a list that may meta reach step more successful for long term more successful. Those are easy basic ones to take. [ more ]
Bubba1028 I take a multivitamin, iron, B12 and vitamin D. I don’t eat meat so that’s why I need the iron. My vitamin D was low and usually is in the winter. And the B12 was low the last time we checked bc I believe it’s make in the colon, or absorbed or something. Can’t remember what the doc said. [ 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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