JPouch

Interesting information. I have had a j-pouch for 5 years now and I have not narrowed down anything. I am just beginning to write down what I eat, how much and how I feel throughout the day so I can find out what I should or should not eat. I hope that I will be able to narrow down my BM as low as yours because I always feel I am in the restroom and also have the gas problem as you do which is difficult in public. Anyone wanting to chat can e-mail me at BelindaKurtz@gmail.com I will be more than welcome to answer any questions also.

I have had a jpouch for 7 years and I still use the bathroom 4-8 times a day I don't know if I am eating the wrong things of not. Any suggestions

The foods on my list are what work for me. Although there are general rules of thumb (avoid carbonation, gassy foods, etc), each person has their own quirks to their system that makes their optimal diet unique. You can start off with my diet and try changing things around and take notes each day on what you eat and how you feel/how many times you go. Over time you will limit things down.

Interesting page...hubby has procolectomy (sic) in a week....liked your food list
denise

I had J-pouch one and half month. I started your list. Main complain is watery motion 7-8 times, very hard to control because it's so fluidy. And the rawness of the back skin is very annoying

I have J-pouch 3years.
"That being said, do not drink water at night." water never made me go to toilet. If you drink tomato juice then yes.

Iam going to toilet 3-6 times a day. I sleep all night without going to toilet.

i have had my j pouch for 15 years now, and im still learning how it works sometimes.

i love all of this information! everyone is so different. ive had my j-pouch for just under a year and it has been by far, the best choice for me. i have had a wonderful experience with very few problems. you just have to listen to your body!! ps. i can still toot if i lay down!! and your bm's will be thicker over time, i take 6-8 immodium day faithfully! i should buy stock!

is it safe to take that many immodium?

You know, I remember coming across a programming, game, or interactive site of yours in the last few years. Maybe you used the same logo. Now I stumble across you again with these issues! I've had recurrent IBS so I follow anything in this line so I'll know what I might eventually face. You've done really well.

Yea this site has been up since 2004 :)

I've just had a total colectomy and still have to go for the J-pouch. Thanks for some tips...

Thanks. Didnt know where to look. Page made me know im not the only one.

I had my j-pouch surgery when i was 16 im now 21 and i some what regret having it done. At the time there was no other choice, but it seems having 8 bm's a day is more than an inconvience especially when im at work and canèt just step away to go to the restroom or on a day trip where their is no restroom for miles it can get really embarrassing i've tried a number of medications right now im on lomotil but nothing seems to help any suggestions?

Try not to eat foods that could cause gas, most of the time when I have to go it's because of that. I haven't taken any medication since the surgery but it seems like lomotil is like a glorified immodium, I'm not sure that's going to help since the problem isn't from the same issues that normally cause diarrhea; it's from the lack of a proper water filtering system (the large intestine). Of course that's not to say you shouldn't drink water because that would lead to a much worse problem than going 8 times a day. In short, if it's not working, don't take it; there's no need to make your life more complicated than it needs to be. Other than that, I have written above pretty much everything I've tried and know about.

I have had the Jpouch for 5 years now and shit all day and all night. Infact, I take opium tincture 3x a day and soon will be a nurse with a bachelor's degree next year!! I notice that exercise helps pass a formed stool along with the use of psyllium occasionally. I have a very high output and have had pouchitis since the surgery. I am striving to become an ostomy/wound nurse in the profession to help all of the people with Colitis, Chron's and surgery. The pouch can leak and get very bothersome on your belly. Petroleum jelly for your chaffing and huggies wipes are a must at the toilet side. Wonderful page you've put up.

I live in Australia and can not find a decent website for people with pouches or bags in Australia. I have had jpouch for 4 years after having colitis for too long. I now suffer chronic pouchitis after having a perfectly working pouch for about 3 years. I take the imodium - about 3 a day and am also regularly on antibiotics and VSL3 but find the ABs arent as effective as they once were. I havent really looked into my diet, but its only in the last 6 months that I think diet is starting to affect me more and more. The pouchitis is worse then colitis symptoms in my opinion. Toilet visits are endless, and then there is the losing weight and nausea, so bad, and its so hard to put anything back in to you to get your strength back, you get really dehydrated, and then the vomiting is endless. I have been hospitalised several times for this, I sometimes regret having this op. I read about people who are having a wonderful life, and I wonder what I did wrong, why am I in the 10% of the nation that gets it chronically. I am seriously considering having the ileostomy bag permanently because I've just had it I'm at wits end, I want to live my life without constant pain and nausea and bowel problems. Can anyone tell me if they have had to take the last option available and have the bag for good? I dont know what to do anymore.

The most common causes of pouchitis for me are diet and stress. Usually <u>being stressed out triggers it</u> when my diet also happens to not be great at the same time or I am not being healthy in general like not exercising etc. Of course once you get yourself into the loop of stress, pouchitis, unhealthiness, hospital stays, etc it becomes a hard thing to break out of because they all feed into each other.<br>
One thing that disturbs me especially about your case however is that you are experiencing nausea. I never experience nausea as a symptom of pouchitis. My symptoms are usually <b>urgency, pain, loosing weight and occasionally blood</b>. I did experience nausea though when I had a <b>stomach ulcer</b> (the doctors insisted at the time that I had Chrons but I pressed them to look again and they eventually found a duodenal ulcer instead). Have you been tested for that?

Hi, great comments - it is so hard to find information about a good diet after J pouch surgery. Thank you.
I know diet and stress were the biggest factors of my disease, changing these has made me feel the healthiest I ever have. October 22nd 2009.
PRE SURGERY:
16 yr old girl formally diagnosed with UC in 2001. I had loose runny stools, flatulance, bleeding, cramping, 4 hospitialisations, cortisone, sulfa medications, worked 50-60 hours a week, poor love relationship, poor diet (microwave dinners, take out, Macdonalds, lots of white bread and milk with prepackaged cereals + tonnes of sugary snacks) and regular marajuhana use.
In 2003 I was hospitialised.
Option 1. Begin Imuran (an immunosuppresent medication given to organ transplant patients) or
Option 2. Total colectomy.
I opted for the Imuran - no effect, I was too sick by this time.
My parents (mother's side has family history) convinced me to have a J pouch constructed.
4 Surgeries over the next 2 years with temp. colostomy bag, I experienced 1 blockage due to adheasions (which I feel was from the low fibre diet the Dr's prescribed me).
After the blockage and research into fibre discovering why it is important part of a healthy functioning digestive tract, I began to take my health seriously.
Ate vegetables (cauliflower, brocolli, cabbage, carrot, water chestnut, red capsicum - but not green) in the form of stirfrys, chewing each mouthful 30-40 times (as colon's don't have teeth).
Removed all dairy and gluten products.
Onions were out for me as well due to the gas production.
I had massive improvement in the consistancy of my stools, my stoma did swell at times and get bruised as the size hole I had cut that morning was sometimes too close fitting.
POST SURGERY:
Reversal complete in Oct 2005 and I have continued becoming the healthiest happiest person I can. I never smoke marajuhana, drink alcohol, coffee, eat processed sugar or pre packaged meals or take medications. I am in a loving relationship now and work part-time (25hrs a week).
I eat most of my vegetables raw or lightly steamed, take phytonutrients, mineral and vitamin supplements, drink 2-3L of filtered water a day (not including herbal tea), eat plenty of fresh fruit, small amounts of nuts, seeds and legumes everyday with no problems. I do eat grains now but only organic whole grains and not more than 3 x week. Eggs are fine (smelly gas but no cramping) as is raw milk (organic unpasturised and non-homogonised) and organic goat's cheese occasionally but no more than 3x week.
BIGGEST CHANGE:
Best aid for thickening my stool, decreasing frequency and passing gas without having to sit on the toilet was Psyillum Husk (take 2 x day). I recently began adding Slippery Elm powder as my Naturopath advised it is more gentle and promotes mucous along the digestive lining without being as abrasive as Psyillum Husks and probiotics.

I hope you all find a diet that works for you, going organic, becoming educated about health and food, ignoring the Dr and eliminating stress was the best thing I did for myself.

Sorry - probiotics are not abrasive, I ment that I also take them to prevent Pouchitis from occuring.

ibdcrohns.about.com/od/pelvicpouch/f/pouchitis.htm

Hi:
I haven't accessed a chat/help site for years. My ostomy takedown and correction was completed ...a long time ago..in 1994.
So I have a bit of history...the whole procedure at the time was a bit complicated maybe because the initial surgeon attempted to do it all in one stage....his first kick-at-the-cat...and I was in more agony before than previously.....after finding an alternate surgeon (because the first one told me I should just have a permanent ileostomy and get used to it), I had corrective surgery (the second surgeon's thinking was the pouch was initially placed too high in my abdomen) and recovered to have some degree of success...On good days(24 hr period) I still need to visit the washroom as many as 10 times daily...most vists occur at night...for some reason...being horizontol and no activity..my pouch is ineffecive....I don't think I've slept more than 4 hours consecutevly in 15 years.....and this is with the assistance of a high dosage of coedine contin which moderates the bowel/pouch function....to be honest...I probably early on became dependent on this drug when I was having more problems....that said....I was given a new lease on life after all the surgical errors were sorted out.....I returned to work as a carpenter and although over the years there have been many inconveniences (maybe too many for some) I have been able to succeed at a highly physical occupation...in conditions that may have been considered unusual to most...for the larger balance of my life I've worked in the Canadian Arctic...in severe conditions...for extensive periods...as many as 12 hours per day.....I've just returned from a 6 month contract at the Kandahar Airfield in Afghanastan working in 55 degree celsius....that's over 120 in Farenheit measure......and was able to overcome electrolyte depletion on a regular basis........so why am I writing??????....from the beginning I've had episodes which were extremely uncomfortable....after eating mushrooms.....I knew that they were somewhat of a problem prior to the jpouch....while I had the ileostomy when I ate mushrooms I could literally feel them pop out whole (to whatever size I had chewed them to) out of my abdomen into my appliance....so when I had the first occurence after the arrival of the jpouch...no big stretch to what it was....I was careless and at that time it was agonizing....I didn't think I would survive and was 10 seconds from calling the ambulance before everything cut loose...an obvious major blockage...later I had other occurences...most not as bad....you might say, "well, doesn't he ever learn?"....but most of the time I knew what I was getting into and either was prepared to pay for it....such as eating tomatoes....and/or onion laced foods....and other times I would try to mitigate the future events...for example...chewing my mushrooms well.....but in the last year or so I've had a few episodes I feel are connected to mushrooms.....I have the sensation of an almost complete blockage without the accompanying extreme pain.....but I begin to manufacture progressively more watery stools with greater frequency coupled with intense constipation and manufacture of gas.....I obviously need to expel this gas through as sit down and a loud farting musical (out of tune) anouncement...in conjunction with the watery defecation......as well I burp continuously with the taste of rotten eggs in my mouth although I haven't eaten any......all very uncomfortable......and this will usually last a week or so....
I'm not sure what is going on but I think that either I have a mushroom blockage that produces a major amount of gas as it rots away....or I am just developing some sort of alergy to mushrooms....and not all mushroom species, because at times I will eat other mushrooms in soup or whatever with no ill effects........so given that this is my first visit to any help site in years, I don't know if I can expect to find the most knowledgable contributor to respond but I'll keep my fingers crossed and at the same time I watch, I will help anyone else I can......as bad as this all might sound....I am grateful I survived a very virulent disease..and have lived already another 18 years....I am happily married with a beautiful 14 year old daughter....still any improvement on what has been the problem the last year would be great....thanks so much for your responses.....this is the best site I've seen towards j pouch interraction......all the best....

Having to frequent the bathroom more at night is the same with me, I think it's because I am more relaxed or maybe it's because of the horizontal thing. I also always have to go after eating because the whole GI tract wakes up when you eat. That's great you are able to go to so many places and not let the pouch get to you.

I'm not sure what's going on with the mushroom breath but mushrooms are usually poorly tolerated with jpouch people but I've never heard of them causing gas. Are you eating anything else with the mushrooms or always cooking them a certain way with certain seasonings/oils? You may also have an allergy to that species of mushroom, it's not unheard of.

Thanks for the compliment about the site.
- Will

Thanks for your response Will..I've never compared notes of night time frequency before and your explanation pretty much concurs with my thinking...about mushroom though, my theory concerning them is that my digestive acids literally don't touch them....at least some species in any case....in retrospect I would say those would be the "common mushroom" available to us here in Canada in the produce section....later I will find the species name but again these would be the common species which come in white or brown skin colors and although usually consistent (maybe ping pong ball size) can range from the size of marble to the size of a small fist...
these are the ones I believe to be at least one of those types which could give me problems....there may be others....and the most normal reason for my episodes would probably be a result of swallowing them at too large a stage when they might be contained in a soup/sauce/casserole.....I would like to say that I'm a diligent chewer but I'm not, and while when I am eating them as I side dish I would more likely be careful....I probably blow it when they are contained in a recipe...
but I do know as mentioned before, my body just does not break them down..as above, when I was connected to my appliance between procedure....I could feel the results (collecting as little chunks of rubber)by kneading my appliance.......I just wish to correct my chewing inattention there existed some way to flush or dissolve the mushroom chunk which causes my blockage...but more than likely I just have to suck it up and wait until it comes loose or rots away.......so thanks again for your site and allowing me to use the space to ramble on......

I have the same Problem, Just like everyone else, the bathroom thing is the worst. In the bathroom 8-12 a day gets to be hard. When you want to go out for few hours with family or even at work. They tried just about every pill, IV, Foods, Vit. Drinks. Nothing helping yet. Just starting this week taking- Slippery Elm Bark, Super Digestive Enzymes, and Probiotic Acidophilus. So we will find out if this helps. I really hope so...... Anyone have any info or can help anyway please email me. r.riehl@comcast.net Subject- Colon J Pouch. Thank You Everyone for help...

Hi, I am 3 weeks post-op (one-step j pouch) for slow transit (chronic constipation). I have had significant rectal pain (no abcsess, fistula, obstruction) which has turned out to be a function, or lackthereof of my sphincter muscles. MRI shows my pouch is fuller than usual. Have similar issues w relieving gas...end up not releasing in most cases (tense up). I don't want to take colase to relieve and am still on soft foods at this point. Dr recommended walking (which I have been) and adjusting way I sit on toilet. I am also using a nitroglycerin compound rectally. has anyone experienced similar issues w muscular dysfunction? Any help is greatly appreciated!!

Your pain is probably being caused by the gas being stuck in there. Have you been eating many gassy foods? Also the muscles will heal and strengthen with time, the vast majority of people have really weak sphincter muscles post-op.

Hi everyone! First time I find a site to share info and connect with great people like all of you!Have had a J-Pouch for 6 years, one episode of pochitis 4 years ago which healed with 5 day hospitalization, antibiotics and pumping of stomack with tube down my nose, clear liquid diet for a few days and then started implementing foods slowly. Was super healthy for past 4 years, taking probiotics, paying attention to my nutrition, taking nutritional supplementation, exercising 3 times a week and working part time and paying attention to how I managed stress oh and also taking omega 3's fish oil. This last year I went completley out of balance with my life. My business doubled which was a great thing but I didn;t have enough leaders trained to help me and I ended working avg of 15 hour days Monday to Sunday for 6 months and got away from going to the gym,,,,,having triple the stress from the business plus family mother and brother serious issues which added more stress, strated eating junk, to much red meat,cheetos, chocolates, ice cream, cookies, chili, lots of cheese, greasy food, fast food, stoped taking my supplements and vitamins and probiotics and omegas;s, skipping my meals,having emotional issues and there you have it recepie for disastr, My body was pushed beyond it;s capasity, I caught a bad case of broncotis and the pouchitis I've been down in bed for 2 months and on my way back up to my dicipline. It's bed time I will share more on how I;m getting out of this one without doctors!!!It can be done! Stress management is the main killer and the nutrition, Will connect again soon! Best of luck to all of you! Blessings!

Hey Will, I ended up having EXTREME pain in my right side and went to gastro. Had emergency CT and endoscopy to remove gas (said my intestines were dilated...also had bleeding). Even after they removed gas/stool I still had pain (took two Dulcolax and suppository) which seemed to help. It has been a week and again my stomach is distended and hard. Is there anything that you can recommend to increase output x-laxatives? I have spent seven years dealing with constipation, liquid diets, TONS of laxatives and suppositories and am afraid that I will continue to in the future. Really appreciate your help!

I've never had a problem with being constipated after the Jpouch surgery; that is rather odd. I have had problem with gas building up however which is why gassy foods are on my avoid list. I'm not really sure what laxatives to recommend but I wish the best for you.

hi,
i have had j pouch for 15 years. I dont stick to the diet like i should but try. I have been taking 6 lomotil tablets per day. Also taking a tablespoon of fiber laxative mixed with water for regularity 3 times per day. Wondering why noone else on here is doing the same.

Hey. Im due my take down in 2 days and reading the blogs above has really put some doubt in my mind. I realise that everyone is different and their body's will adapt accordingly, but it looks as if the majority of people use the 'kazee' 5 - 8 times a day. Granted this is alot less than when i had ulcerative colitis but will be hard to manage as i am a physical training instructor in the RAF and take recruits for sports, circuits and running. I am grateful to find such good advice and will definately be asking the docs about some of the medication mentioned to control BM and dietary needs. Will endeavour to update post surgery. Plus, does anyone think that alot more research should be put into such conditions? as i am still unsure wether or not Crohns, ulcerative colitis etc are hereditory. By the way, my mum suffers from crohns!!

It took a while but I'm able to work out now with the jpouch and reduce the number of times I go to the bathroom. The jpouch is really tied into when you eat/drink so if you want to not go to the bathroom during a time period it helps a lot to not eat/drink during that time.

I am way excited that I came across your web site! I am realizing that I have a lot in common with most of you and it's nice to no that I am not alone. I have had my J pouch for 3 years now. I, like some of you had a difficult time during my first surgery and my takedown. I was diagnosed with F.A.P. causing my colon to be completely covered with pre-cancerous polyps and faced with no other choice but to have this procedure done. My question is about something that none of you have mentioned but I have seen people talk about on other web sites, and that is weight gain. My weight was good for the first two years post surgery and it's only been in the last 11 months that I have had a sudden weight gain of 35-40 pounds. I have been asking myself what I have been doing wrong. So far I have not found anything that is helping me to loose it and it's becoming very depressing. The only thing that I can think of is my doctor just gave me the green light to eat "whatever" with no restrictions and my system doesn't know how to handle it. I do have gas on a regular basis and I do have smelly bowel movements. I guess at this point since I have not been able to track down what I can and can't eat I will take your advise and keep a journal and well start "over" with food so to speak. Since there have been no one out there with an answer to why this is happening or what to do to regulate my weight I am looking to any of you who may be in my position and reading this now.... Any thoughts or suggestions would be great.
Thanks for starting this awesome web site.

I'm not sure about the weight gain (I can't ever seem to gain weight actually but I already had a fast metabolism before the UC) but I do know eating a lot of protein will make your bowl movements very smelly. I should actually add that tip to the website. Thanks for posting!

Thanks for your response.

Hope this doesn't seem like a strange question, but is this still a current site? I have been researching and looking for this type of site but many times find it is not maintained etc. What I have read so far has been so helpful. Mainly because I see others struggling with the same thing I am. It is nice to not be alone. Feb. 2010

Yes this site is current though I should put up a more updated picture on here :) I started this website in 2004 and people still post on it on a regular basis. I just don't record the time that people posted their comments.

Thanks! I just started the Greens first. I am hoping this will get me back into the gym. I barely have enough energy at night to say boo. I had my first surgery Dec 2008. The ostomy take down was not until July 2009. I am still trying to navigate the food thing and it is not fun!

I have had my jpouch fo almost 2 months now. The main problem I'm having is that in the evenings, after dinner, I start having sever diarrhea with terrible burning and itching. It is unbearable. I don't know if it's something I'm eating, or ph is off, yeast, etc. Any one else with this problem? Any help would be greatly appreciated!!

I updated the page with more current information. Yes Gayla, you will be tired for awhile after the surgery. It took me a good 8 months to feel physically normal again and much longer for all the psychological trauma from the UC to subside. Theresa, I usually have that problem when I eat something really acidic and/or spicy. You can get PH (litmus) test kits for pretty cheap if you want to be sure about acidity.

This is fantastic, hearing about others, going through what my son and i are going through, i was 15 when i had my first operation removing the large bowel full of polyps,my family have fap, my dad,sister and brother all passed away with bowel cancer in their prime off life, i had another surgery in 2002 for the j pouch, even with all the pain,drama and depression, i am very lucky to be alive, my son had his operation at the age of 17, just in time for his formal, poor darling going to his formal with a bag stuck to his belly,it's very hard to keep working when you spend most of the day in the toilet, but we all have to just keep going, and help eachother through it, for the burning and itching Theresa, i use rectogesic cream, it stings a little when you first put it on but it makes a big difference to the itching, i get a lot of anal fissues,it will give you a slight headache for a few minutes, just check with the dr,

My condolences about your father and sister. I think we all learn through having these conditions to have a much stronger willpower than most people; we have to to carry on with our lives.

My heart goes out to you and your family Deborah. As I mentioned above I also have FAP. I am also very grateful to be alive. Since this is new to me I am curious to know more about the condition. I have been advised to have my children tested but I am much to afraid to even think about that right now. I would like to learn more about this condition if you were up for sharing.

Just wondering if anyone else has to use medina catheter (via the rectum)just to be able to relieve themselves? I have had the pouch since 1990, and have had to use a catheter from almost the beginning due to being unable to go "normally". I have to carry a shortened catheter in my pocket (and small tube of vaseline to help with insertion) wherever I go, just to be able to "go" when needed.

I'll also add what has worked for me. My pouch has always been a problem for me. But I have made it almost 20 years now without any more surgery, which is good. But working with diet, has made a big difference. Cutting sugar completely out, and limiting starches such as mashed potatoes, and white bread has really helped me. Drinking buttermilk, taking acidophilus, plus vit. and minerals helps. When i am having problems, I also try to avoid the sweeter fruits. For meals, I eat a sugar-free cereal such as grape nuts for breakfast, a large meal at noon, and small evening meal. Try eating the evening meal early such as 5pm or so, so the body has time to digest the food before going to sleep. What has helped the most with diarrhea problems has been to take 1 or 2 pepto-bismol tablets after the evening meal, or at bedtime. If you are having real problems with pouchitis, a prescription of flagyl has always worked real well for me. I try not to go to the doctor for that if I can help it, but sometimes it is the only thing for me that will get everything working properly again.

I had my J pouch takedown surgery a week ago. I go to the bathroom at least 30 to 40 times a day. My butt is soo sore. I have used three different types of ointments to relieve the soreness but they don't work as well as I would like. I am trying different foods that were recommended on a site called jpouch.org. This seams to help a small amount. I find that if I sit down on a firm seat I can hold back the urgency to go a little better. Laying down seldom helps. This site has given me some ideas that I will try to slow down the frequency of bowel movements and ointments to help with the itch and pain on my butt. I can see after reading the comments on this site that I am in for a long haul to getting better. Some other people on other sites have gotten much better alot faster than I believe I will. No one has written that they have had as many bowel movements as I have experienced. I hope no one has to go that many times. If anyone has any suggestions for me let me know. Thanks. This has been the most informative site I have seen.

I had FAP with 2 areas of stage 1 cancer and had my first surgery July 09, with my reversal Dec 09. From what I've read, I'm doing very well and lucky. I was glad to hear about others that have to go to the bathroom to alleviate gas. I do find that when I have gas pain/cramping and can't get right to the bathroom can be painful, but try to muster along. I am a veterinarian and do work long hours, but am learning that if I have to go to the bathroom, it's ok to run a little behind in appointments, rather then being in the room with a contorted face from discomfort. My bowel movements are often still watery but sometimes consistency of applesauce. Occasionally I will have it a little more formed than that. I am having trouble becuase I love fruits, salads, coleslaw and pickles, so trying to find where I can still have them, but not pay the price. Shannon, if you would like more info or to chat more about FAP my email is jabo808@hotmail.com. Good luck to all and thanks for the site Will! (Feb 28, 2010)

I forgot to leave an email address above for anyone who wants to give me any recommendations or suggestions or just compare notes.

my email address is desertsage@plmw.com. Can't believe I forgot to leave the email address again. Must be old age.

Thanks to everyone for sharing your experiences. My doctor has been pushing me to have J-pouch surgery for my crohn's disease for a year now, but I've resisted as I have been skeptical of the rosy post-surgery picture the md's paint ("it will fix everything!"). Hearing that some people are still experiencing urgency and so many BM's a day, plus the night-time incontinence and other problems, is giving me a more realistic picture. Plus people with CD often have recurrences post-J-pouch or ultimately end up with an ostomy, which I would really like to avoid. It seems pretty much impossible to know whether the surgery will improve my life or not.

By the way, I especially appreciated that you were willing to share photos of your surgery, Will.

Yea the surgery isn't a cure-all, *especially* for Chrons. But what you have to do is compare the quality of life, this part was really hard for me to do as I resisted the surgery for a long time too (2 years). One day I was in the hospital and I was down to 85 lbs with an IV of dilaudid not able to eat or walk and I thought to myself long and hard 'is having my large intestine really worth all this suffering; do I really expect to get the disease in remission at this point.' That's when I decided to have the surgery; though because I had waited that long, the surgery almost killed me. It's up to each one of us individually to make that decision on what you think is best for you, there is no formulaic answer to it.

I have had ulcerative colitis (with sclorosing cholanghitis in the liver) for 15 years. Half year ago I had the colon with cancer removed. Two weeks ago I had the J-pouch re-connected. I think I am doing reasonibly ok. But a bit incontinent. And with it the burning. I am almost vegan and health-consious. 10 BM's a day, which is what I expected for the first few weeks. I have no gas, thankfully. But the incontinence, I hope I will get on top of that. I can hold it easily, but notice it coming too late. The psyllium husks have taken care of the wateryness, and I will try slippery elm instead next. I use an electric toilet seat, called bidet. It gives me a wash and dries me too. I have had an awful burn before I used the (double dose) psyllium husks, and I wonder what would have happend if I did not have the bidet to douse the flames. Isen't that what they always say 'pour water on acid burns?' I keep records of what I eat and how it affects me. For me, starchy food is good, fried onions and much brassica gave me gas before the reversal, so I avoid them. And I avoid complex meals for now. Surprisingly beans, at least the ones I cook (very long and slow)are no problem. Aren't we J-pouchers a very diverse lot?

I am very excited to have stumbled upon this site. If only i had access to this information 10 years ago. I have a j-pouch and can relate to almost every comment. I was told by my surgeon to NEVER take imodium. I see that the majority of j-pouchers have benefited from it. My current problem that i have not seen addressed has to do with the amount of time i spend trying to eliminate the stool from my body. I have to physically pushed on my abdomen & forced it all out. If i don't do this, i end up going back & forth to the bathroom. This gets embarrassing if im with people who don't know my medical history. Also, its explosive! My friends & husband say it sound like a rocket is taking off. I poop around the clock. Shannon, my surgoen told me to i will gain weight. At that time i was 95 pounds. About 3 years after my last surgery, i gained 45 pounds. I had to actually go on a diet. i personally think it is bc over time your pouch stretches allowing for increased absorption & storage. Plus, you tend to feel better and eat more. when i had UC, eating a spoonful of soup would cause intense cramping & bloody diarrhea. i preferred to skip food. i feel so blessed to have the j-pouch even though it has these complications.

Yea I think the explosiveness comes from the gas going to the top because there's nothing solid to keep it down and make it where you can fart. When all the gas sits on top it acts like a pressure chamber causing pain and tension. The gas/pressure all gets released when you go and it makes it explode out lol. It can be quite embarrassing in public restrooms. I have farted only a few times since the jpouch, all of which my bottom was above my head which made the gas actually rise up toward the rectum.

The Greens First has made a difference in my energy level. I am making it through the work day without wanting to nap on my desk (which I have done before). I am wondering if anyone has tried the Red Alert. It seemed similar to the Greens, just the red fruit/veggies. Wish the Greens First made it to were you could eat normal again. :) However, my husband made the comment I seem a little more like my old self. While what I am going through sucks, it has been just as hard on my husband and children. They are great, but really don't understand.

So its been 20 years since my surgery. I had a bad reaction to the staples used and after 3 major and 18 minor surgeries within a 18 month period, I survived. Since I am bad about watching what I eat, to date, I still go a 8 or more times a day. But I'm one of those me last, family and work first people. It's time for me to get on the right track, I don't like having accidents at night, usually comes on with stress and from what I have read here, eating and drinking water in the evenings. This is the first time I have actually found a site that I can relate to what people are talking about. I thought I was the only one that had "accidents". I plan on using some ideas from this site to help me get on track with my diet. Not sure why, but my weight has always been an issue, I haven't gained any in years but I need to loose 20 lbs. So far I haven't found a diet that doesn't make me go even more each day, which we all know we don't need that. Any suggestions would be great. Thank you for all the info.

I just turned 50 and have had my pouch for 18 years. I have been having perianal skin problems recently so that is how I found this site (which is a really great site). Any problems I have experienced have been mostly diet related. All preventable. Eating a big meal with a lettuce/salad starter caused me lots of problems. Also I would develop pouchitis if I had been eating crap food with lots of sugar. Probitics and yogurt are good. I still use the toilet 5-6 times a day but it is not urgent, have to go now, trips that that I used to have with UC. I pick low fibre food choices if I know I will be out and about. All in all I love my pouch compared to life before. I was in hospital one week after my reconstruction and I have have only been back once at the ten year mark for anything related to my pouch. Common sense and admitting you yourself that you can eat junk. Well you can, but you have to suffer the consequences, which are sometimes worth it. ie chinese food. lol But small portions and chew the food! Another hint, when in public washrooms, to avoid embarrassing noises. I wait until the person next to me flushes, or I flush. The noisy toilets cover the embarrassing noises. Espcially important if you couldn't escape from your partymates to hit the wc on your own.

I am glad I found this site. I have had Ulcerative Colits for 20 years and just 2.5 months ago had my drop down surgery for my J-Pouch. I also found out I have Primary Sclorosing Colanghitis of the liver. AFter a year of being in and out of the hospital my Dr decided I should have the J-pouch surgery. I agreed I had tried everything months and months of prednizone that has damage my bones, Remicade that landed me in the hospital with side effects and pain so bad Morphine didn't touch it. My joints swelled up and I couldn't move. SO I gave in and had the surgery. Well, some things are ok. I could live with the 15 trips to the bathroom aday but the gas is horrible and it doesn't matter what I eat. I can pass enough gas to send the Balloon Boy around the world. And it's so painfuil sometimes. It burns so bad at times and keeps me up all night long some nights. I have tried Imodium and it makes it worse.The only thing that seem to help was Hydrocodone but I can't have that anymore....rats....LOL Anyway, I am trying to pay more attention to what I eat and see if I can figure it out. I also can't seem to gain weight. I got down to 88lbs after sugery. I am now at 92. I am 4'11" so it's not real bad but it's not a good look either. I just look real frail. I have always been very healthy and active and this is very hard to deal with sometimes. I want my stregth back. I guess it will come back in time and things will get better. I just wish the gas would stop. It seems to come on when I go for a couple hours without eating something. Then when I do eat it will go away for a while. But it will always come back at night to keep me up. Trial and error...I guess it's different for everyone but this forum has cetainly helped me understand things. Thanks you

Brenda, it will take a bit longer to get your body back to normal. It's been through a serious trauma with the UC then having a surgery of that level. It took me a good 8 or so months to get back to normal after the surgery albeit I was in really bad shape at the time and down to 85 lbs (I'm 5'7"). With the gas, that will equalize over the next while as well though also watch for eating gassy food and how much you gulp air when you eat. Some people when they drink or eat take in a lot of air and that air has to go somewhere!

Susan, great tips there. Sometimes it just explodes out of me and is smelly to the point of clearing out the bathroom lol! It also helps to flush immediately after it comes out before you stand up.

Thank you Will. Today actually turned out to be a pretty good day. I had to pinch myself....lol! I almost forgot for a short period of time I had all this going on. So little by little I can see it getting better. It's just hard to see sometimes I guess. Thank you again for putting this sight together.

Hello all. I've a J-pouch now for almost 15 years. While I still have to avoid some foods, I can almost eat anything I want to. But the reason I wanted to post has to do with what I'm reading about some of you not being able to pass gas. I also have the same issue, but have found a solution that works! For me anyway. I've found that by laying flat on the floor, stomach down...I am able to pass gas without any hint of the dreaded diharea. This technique has improved my quality of life tremendously. While it is sometimes hard to find a suitable place to lay down, its much better than running to bathroom just to toot a little. The main drawback is public restrooms of course. Expect to get strange looks from ppl if you plan on doing this in a public restroom. Hope this helps.

Hi everyone! I lost my great-grandmother, grandmother and uncle to F.A.P. before they were all 36. My father has it and had j-pouch surgery 15 years ago. My son and I both have it and my son has Gardner's. I had my first surgery in April 2009 and takedown in July 2009. I just made my year mark on Wednesday! It was an incredibly emotional day because what a year it has been! I had a really hard time with my ileostomy. My weight got down to 95 pounds, my teeth and gums hurt, my hair fell out. It was rough, but I've put a healthy 20 pounds back on since July. My hair is growing back in and I'm feeling better finally. My dad told me forever to give it a year before I would get here...and low and behold. I still use the restroom 8+ times a day. I don't eat gassy foods, red meat or any type of red sauce. They just hurt too much. I do have a question about vitamins and veggies/fruits. I pass vitamins almost whole still, so has anyone had success with liquid vitamins? Also, does juicing fruits and veggies make things worse or is it a helpful way to get those nutrients? I really miss them because I've never really been a meat eater. I have never successfully passed gas. It is an ongoing joke in my house that if someone smelled it, they know I definetly haven't dealt it! I just always say, "Wasn't me!" My 9 year old son jokes that we need to go to Nasa and have them invent a seatbelt for our toilet because I'm going to blast off. If you can't laugh at yourself, what can you laugh at? The gas is just bad, no matter what you do. I'm having a hard time deciding when my son will need surgery. He will be 15 in July and already has over 50 polyps. Does anyone else have them in their stomach and esophagus? My doctor is kind of unclear about what we need to do with those? I do have adenomas, so they have a chance of changing. Just curious what anyone else has been told?? It's great to be able to have a place to go to talk about his. It has been in my family years, but other people just don't understand.

Thank you for all the years of knowledge. I have had my J-pouch since 1992. I do relate to the person that had to have surgery to correct the j-pouch position. I had to have that done in 1996 as I was having stool leak into my vagina. I have had bouts with pouchidest but, only for a few days so never have been treated for it. This week I did end up going to the emergency
as I was having problem going to the bathroom and I started vomiting. As going to the emergency is so hard, your scared, your sick and you don't know what to expect. I had to wait 6 hours before I could see the doctor. I prayed and prayed that I'd start feeling better and I ended up going to the bathroom and finally was able to go. I think that by eating peanuts the night before caused this problem. Some of the peanuts had the skin on them. What I was wondering is when you have these bouts with pouchidest do you have a very sore area where your pouch is? It isn't a pain it just feels sore. Even though this happens I am glad I did have the J-pouch surgery. I do everything I did before. I try to stay positive and keep myself busy even if I do feel tried. I know this disease can be very draining. So thank you everyone for sharing.

I'm using my J-Pouch for 7 months and have a wonderful time.
I go 3-4 times a day to the bathroom and sleep through the night.
I eat everything and haven't had any problems with food.

i love this blog. my son is on his 3rd redo of his j pouch and we are still learning. i would like to know if there is any screening tests to show if you will pass on this ulcerative colitis gene to your children or what the chances are. e mail me at skwarek.andrea@gmail .com

Sorry I have not logged on for a while. My doctor here tells me that with FAP you do get polyps in your stomach, liver, thyroid and brain. I personally was informed last year that I have them in my stomach and also pre cancerous ones in my duodenum. I still need more answers as well but wanted to share what my doctor has told me. I will do what I can to see if he has a web site and I will give you all the link. Until next time-

Here is a link on my doctor, Randall Burt :http://globalperspectivesoncancer.org/dr_randall_burt.html

Here is a link that actually talks about the other types of cancers that come with having FAP:http://rarediseases.info.nih.gov/GARD/Condition/6408/QnA/21661/Familial_adenomatous_polyposis.aspx#ref_482

Hi, is RAF John still there? How are you getting on? I was told having UC or a Pouch would disqualify joining the RAF on medical grounds - could you please shed some light on that from your own experience? Or any other military folk out there? Not sure about hereditary link - but my mum has proctitis, so is possible!!! Will - great site, thanks. I've recently had my take-down and finding the site useful.

I think UC is hereditary. My mom died at age 49 of obstruction of the bowel. I have UC and my son also has it. My son is fighting to save his colon and is on heavy drugs. He seems to be doing good. Under heavy super vision by doctors. I totally agree that stress causes the flare ups. He is a police officer so I know he is under a lot of stress. I just got back today from my dr having my J-pouch checked. It has been two years since I have had to have the procedure done. Dr said everything appears to be looking good. He took biopsies. I feel very bless having this pouch for 14 years. Anyone with a new J-pouch please give it a chance. I know at first I was very frustated but as time goes by it will get better.

Hi Jessica C:
I also have FAP (my father and grandfather had it as well). I had a single state protocolectomy/j-pouch construction and attachment in early April 2010 at the age of 23. After experiencing interesting symptoms and knowing about my family history, I went to see a gastroenterologist. During my colonoscopy, he discovered hundreds of polyps and decided that a surgery within the next few months was crucial. The biopsies of polyps taken were not cancerous yet, however, the doctor revealed that we had no idea of knowing when a turn for the worst could occur. Before my surgery date was finalized my surgeon had me complete an upper endoscopy and abdominal CT scan. My upper endoscopy revealed that I do have polyps in stomach (none in my small intestine though). I will continue to be screened every 2-3 years. My doctor informed me that it is very common for individuals with FAP to have polyps in the stomach and they are usually not a problem. Mine were not the cancerous type. I gathered from him, however, that polyps in duodenal area of the small intestine (if they are adenomatous type) are more serious. You mentioned that your son has Gardner's - how was he diagnosed? Every since my surgery, although I'm feeling pretty good, I have an ongoing fear that I may have Gardner's (I'm can be paranoid). I would really appreciate if you could provide more information about your son.
Comments are from May 2010 - feel free to email me at jennifer3186@gmail.com if you'd like to chat.

For those still struggling with lack of energy, I cannot say enough positive things about Greens First. I researched it after noticing Will mentioned it. I was looking for something to help with energy and the fact I am so limited on eating fruits and veggies. I am now back to exercising like I did before my surgeries (I had my take down surgery not quite a year ago). So, it is well worth a try.

I wonder what I am doing wrong then because I have not been able to handle any "green" medicines at all. They make me very uncomfortable and gassy. I used to live on supreme greens before my surgery.

i have had my Jpouch for almost a year and a half now. i never really knew what was supposed to be "normal" but i know it sucked going to the bathroom 15 times a day/night. i started Probiotics (VSL#3) a couple weeks ago and it has been a Godsend - i highly recommend this. esp because i was so reluctant to constantly be put on ANTIbiotics because im thinking "what happens one day when i have had pouchitis or whatever 15 times and the antibiotics wont work for me anymore?" plus i have about had it with Drs. i cant believe Will your story about them telling you you had crohns and being wrong! that was very wise of you to ask for a second opinion and i will keep that in mind. im glad to see alot of ppl here are finding satisfaction thru natural means. i am going to try some Greens Whole Food supplements to see if that will help increase my energy. so far it upsets my stomach a little bit but im going to keep experimenting and maybe just eating some crackers with it helps to have something else to absorb along with the supplement. i have never had an accident. i think if i had known it was so common before surgery maybe i wouldnt have opted to have it. it seems like such a horrible inconvenience and embarassing. luckily tho i can say thats not my case so it must not be the case for everyone, but drs always seem suprised i dont have accidents. its kinda depressing, im sorry for those of you who struggle with that. Will thank you aswell, its amazing how such a simple website has been so successful in bringing us all together. I live in Bloomington, Indiana and my parents live in Taylors, SC and i visit occasionally - my email is bryantcl@indiana.edu if anyone ever wants to contact me i am more than willing to talk more about UC/Jpouch experiences.

i hade my j pouch done 2 years ago, and have laos had 2 liver transplants, i was on long term disability, and they now deicded to "cut me off" my doc sent ample info saying i was still ill, but they neglected to take that into consideration....i still go to the bathroom 15 or so times a day. and have pain when i hold "it". anyone still have problems like this? being immunosuppressed doesn't help the matter, i have alomst a constant pouchitis.....feel free to emal me....scott.hartlen@eastlink.ca

if you are having problems passing wind without creating a mess try lying on your back obviously behind closed doors bring your knees to your chest as high as possible and slowly go through the motions of as if you were on the toilet it takes a bit of practice but I can asure that you will significantly reduce the number of bathroom visits. Its all a question of physics quite simply the gas is looking for the easiest route out but unfortunately there is stool in the way when you lie on your back gravity has a greater effect upon the stool and the gas perculates out quite easily, you really have to train your rectal muscles to open very very slowly in order to do this but it really helps prevent perinal scouring which is caused by concentrated ileum acid which has not been reabsorbed by the large intestine which is a complete nightmare, sounds a bit crazy so is life Ce la vie !!! IF U HAVE ANY QUERIES CONTACT ME BYE
CONTACT: walshe_1@hotmail.com

Hi everyone. this site is amazing, and mostly reasuring for somone like me, who, at the moment is living with an illeostmy, but due to have an J pouch on the 22nd July (6 weeks time!)
i know you all say that different foods work for different people, but there must be some staple foods that work for everyone?
at the moment, i find chips make firm passing. a Macdonals meal works a treat haha!
i dont mind living with my illeostmy but have been recommend the J pouch, over staying as i am now. im 18, in the middle of crucial years of college, and looking to go to uni next september. i reli hope someone can shed some light on how to live with a J pouch from day 1.
thank you so much. im quite nervous about the whole thing.

...also, if anyone can help with a list of good foods or routines or whateverrrr helps anyone of you with J pouches, it would be great if u could send a quick email to me at

claudehoarau@hotmail.co.uk

Thank you!

had j-pouch surgery 2 yrs ago. any suggestions on what is good for but burn
thanks

@manny I use Calmoseptine, it works great

Nice site. Had my jpouch for 17 yrs, still has its ups and downs to be sure. Currently, the "down" is nights. I get up 3-4-5-6-7 times, sometimes I just lose count. What is the deal with that? My days are OK, maybe 6-8/day (give or take). Does imodium take time to be effective, like a week or more, or should it be effective immediately? I've tried it and find no difference in frequency, really. I need sleep or I will go bonkers soon. I have a script for levaquin, in case I get pouchitis symptoms, but I don't even know, after 17 years, what real pouchitis symptoms are. I don't like taking antibiotics unless I am CERTAIN there is a need for them. Anybody have suggestions?

I also find myself going a lot during the night. I have most of my problems then too, especially if I have ate something that disagrees with me. My husband actually found these "sensitive" baby wipes by pampers and they work miracles for me! I just found some others that are flushable, I will let you all know how good they work. Ann, my doctor prescribed me Loperamide 2MG (I am told that this is the prescription for immodium) and although I have not taken it a lot over the last year and a half it worked wonderful for me. I still keep it on hand as it works great when I get the stomach flu. I hope that this helps.

I was a pharmacy tech in the Army for 11 years and I have a J-pouch. Loperamide and immodium are the same drug. Lomotil is the step up(stronger) from immodium. Lomotil is derived from opiots, which slow down your digestive tract. Immodium works on osmotic diffusion, or movement of water out of bowel. So which one works best for you might be different, but Lomotil should work better.

@Jason, yea it was my experience that any opioid slowed down the gi tract and helped out so that totally makes sense.
@Ann, for comparison I usually go twice during the night. When I got pouchitis or when I ate something bad it was a lot more. Are you keeping tabs of what you eat to see what could be causing the problem? Also sometimes when you have pouchitis you don't feel anything, you'll just go to the bathroom a lot and have more urgency so that's something to check into also.

I have had my jpouch for 1 1/2 yrs. It was the best thing I ever did. After suffering miserably with Ulcerative Colitis for 15 yrs. & just not being able to get myself to go for that extensive surgery, I finally did it becuase it was literally killing me. I didn't even recognize myself anymore physically & mentally. I ended up in the ICu for days with severe pancreatitis caused by Imuran. Talk about pain. I tried a few holistic & alternative treatments, magnosteen fruit, aloe extract, VSL3, to name a few, with no positive results.I have 2 small children to take care of & my husband should be a saint for living that hell with me. The inconveniences I have now are nothing compared to the pain, bleeding, accidents in my clothes, chronic prednisone use etc. Now, I am a much happier, healthier person & so is my family. I do find alot of the same problems with night time bathroom use, varying from 1 to 3 or 4 times, gas that I can only get rid of on the toilet or sometimes lying on my side but that is risky because of some possibly leakage. I visit the bathroom 6-8 times a day & even when I only go to pee, I usually then have some BM I can get rid of. But none of these visits are any urgency so I really don't mind going that many times. I also find sometimes excessive gas in my entire GI tract causing even visible bloating in my abdomen up under my breast area. I do not watch my diet much as to avoid gassy foods because it doesn't cause me to be that uncomfortable. I was taking Metamucil early on after I was healed from the reversal but got away from it. My stools vary from very loose to somewhat formed. I use to have night time leakage but haven't had that for at least 6 months now. I have times when I get irritated externally & use a variety of creams that help usually overnight. Baby wipes are a blessing also during times of irritation which sometimes brings with it alot of itching. My nurse practitioner explained the irritation is from the stronger digestive enzymes that are in the BMs that don't go through the colon anymore. One thing I feel I may have is low grade pouchitis alot of times. I never have pain but once in a while a trace of blood but the most noticeable symptom is the strong bearing down when having a BM. I am not sure if this is a symptom, I know the blood is but it is not alot. My nurse practitioner told me there is a chance of inflammation just inside the anus where the small intestine was attached to a small ring of rectum they leave in for that purpose, so there is something to attach it to. This could flare up like it use to with the Ulcerative Colitis. I don't know if that is what it is or if it is pouchitis. I never took antibiotics becuase my symptoms are not severe. I have used Hydrocortisone suppositories which have helped really calm down the strong uncontrolled pushing or bearing down, but it eventually comes back. I really don't have urgency, in fact, I can hold my BM for really as long as I need to until I find a bathroom. Once I was traveling on the interstate, I held it for 30 min. until I reached home. I take Lomotil at night but it really doesn't seem to do anything, I still get up just as much as when I don't take it. So that's my story. I know I was so sick & had so much pain all the time for so long that I guess I tolerate all the quirks with this jpouch easily. I just hope I don't acquire any more severe problems in the future. I am so glad to have found your site. Just reading everyone's stories has given me a real sense of support, somewhere to turn. Thank you.

Forgot to ask, does anyone experience a very uncomfortable/discomfort sensation at the site of the former ostomy? Thanks

Thanks for your post Sheri. I did notice a strange thing recently in regards to the former ostomy site. I was recently at Stewart Mineral Springs near Mt. Shasta taking a mineral bath and the former ostomy site got irritated and sensitive for some reason and all these red bumps appeared there. I'm still scratching my head about that one.

This has been very interesting to here everyone's experiences. I have had a J pouch for at least 7 years now. I have a very hard time eating healthy foods. I have found out over the years that pamper baby wipes are the best to use every time you go to the bathroom. It can take a very long time for your skin to become normal again. All that wonderful wiping. I still get up at night to go to the Bathroom. I also use medication to control my bowels. I seem to stop eating if I want to go out. It changes your life quite a bit. A lot more planning now! Am glad to here all your stories. It's nice to know your not alone.
Thanks again!

Ann,
I have had my j pouch for almost 18 years and I find that I have to eat early like at 5:00 p.m. And than helps with the bathroom visits at night. The most I go at night is one to two times. A few things I try not to eat at night is ice cream, and chocolate. Eating late at night is not good for me. I don't take any imodium at all. I do eat a lot of fiber. When I first had my pouch I used over the counter imodium I ended up in the ER as it stopped my pouch from working so I guess everyone is different but, you need to be careful of taking things. I know I get pouchidest and I just wait it out. My simpston are going to the bathroom a lot with a little cramping. It usually passes in a few days. I know it can be annoying, however, this disease as made me have patients and keep a positive attitude. Hope this is some help to you.

Thanks for all your suggestions! I'm seeing my PCP in a couple weeks (painful neck glands ... weird), and will ask him about lomotil, just on a trial basis. My surgeon seems to be getting the "the fewer the meds, the better" attitude, and generally I agree with that 100%. But I need sleep so badly - work a full-time job, and it's not easy after being up so often at night. A few nights ago I got 5 hours straight sleep. A record! The next day I (almost) duplicated the food I'd eaten the previous day, and I had to get up 3-4 times, and had an accident (not uncommon with me). I am not very skilled at figuring out what food, if any, is the culprit. I finish dinner at 6 pm, and eat nothing after that - bedtime is 9:00. I do have a thing for ice water, and am cutting that out at night, also. It just seems like --- I lay down, I have to go poo. Anybody ever try tincture of opium? I hear pouchers get good results with that, although I'm certain my surgeon wouldn't give me a script for it. Thanks again for everyone's input.

Opioids are known to slow down peristalsis so I'm sure a tincture of opium would really help. Opium is illegal in the USA though but I'm not sure about other countries.

Hi Will, all of this information and people's insights have been very valuable to me after I came home from the ileostomy closure and began 'using my pouch'. Im 30 and was diagnosed in 2008 with U/Colitis and I really did not know much about it. I was taking a mild drug - not predisone and I thought I would be fine. I did not realise how serious U/C can be till one year later in 2009 I had a major 'flare' resulting in hospital admission. My body did not respond to IV cortisone or cyclosporine and after 3 weeks in hospital and nearly dead from blood loss, I had a full colectomy and was in intensive care for days post the surgery, requiring blood transfusion and critical care. Since then I have had a tempory stoma, a second operation that created the jpouch and 'loop ileostomy' (that sucked - high output stoma - food literally went in - then came out about an hour later. I coped with both stoma's well and like you I watch what I eat and am cautious. Only 2 weeks ago (June 2010) I had the ileostomy closed and now using my new jpouch. Originally I was on the toilet 30+ times per day, but slowly it has reduced and the last few days it has been 6-8 times and only some nights I will have to get up once, most I have gone the night through without having to go. I am taking one immodium after my dinner and have taken a lot of advice from all these previous posts. I have also been given a booklet titled 'is that a pocuh you've got'. Its from the United Kingdom and written by a man who has also been though U/C and has a Jpouch. The best piece of advice I read was quite simple. Being; If you expect to go back to a normal life, how you were before when you were healthy, you will be sadly disappointed. Your jpouch is man made and is doing a job that it was never intended to do. I am very grateful to firstly be alive and secondly that I am now quite healthy, even if that means I have to go to the toilet 6-10 times per day. Your story provides great information and was helpful to me and my progress.

Hello. I have had my pouch for a little over 3 years now. I fully assert that it is 100% better than living with UC, but I would never say it is easy. I have had constant problems with my pouch since the beginning. Chronic pouchitis, dehydration, anemia, no weight gain and intense pain. I am still trying to try new things and make my health the most important thing to me, although there are many days that I wish I was only a head floating around with no body. I am usually in the bathroom around 20 times a day. I noticed that alot of folks here talk about foods that help slow the output. My 2 recommendations are pretzels, and MARSHMALLOWS (sugar free). A random person mentioned it to me once and it really can help.
I have just started seeing a naturopath. She started me on vitamin B-12 injections, which have helped my eneregy. I was basically disabled for the last 6 years. I would sleep for more than 12 hours and still be exhausted.
Keep the faith everyone!

I came upon this website as I researched problems with the Jpouch. I've had mine for four months and am very happy with it, for the most part. I am continent, taking Imodium twice daily. I will have problems from time to time with itching and burning and have found that they're generally caused by toasted almonds and chocolate. I cut those foods out and I'm . The one problem remaining is that I'm bleeding again. I've had UC for about 15 years and that was common then, but now-- I thought that I was supposed to be through with all of that. Has anyone else had problems with rectal bleeding?

Deb, In order to have a J-pouch, there is less than an inch of your rectum left in. That little part sometimes doesn't know the other organs have jumped ship and is still has UC flares. This is one reason for pouchitis, according to what I have been told. I am not sure the volume of your blood. What color is it? You can generally tell where the bleeding is based on the color. So it could be the remaining rectum, you could have pouchitis.

My comments are from early July, 2010.

Thanks Tammy, I'm really not too worried about the bleeding. It's bright red and a small amount and I do have times when the symptoms resemble pouchitis. I just was surprised to see the blood and of course, disappointed. I'll contact my doctor.

I like your site, and the fact that you're sharing your experiences, Will. I read through some of the comments here, and in case it hasn't been mentioned, there is a great site for Pouchers; www.jpouch.org. It has a valuable discussion forum, but don't make yourself crazy filtering through the numerous posts. Take what is helpful and leave the rest. Each person's history and course of disease is unique. Best wishes to everyone.

hi all. good work on the blog will. i need to do this too.
I've had a jpouch since 2002, can't believe it's been so long! I'm up now because of food blockage, and finally after a few hours it is passing. the main culprit for me was almost certainly short-cooked mushrooms and spinach stem fibre. usually if i'm a bit dehydrated or have been drinking alcohol i am more susceptible to pouch irritation and blockage.
an interesting point for everyone to consider about diet is bloodtype dieting. i think it's well worth looking into considering our dietry restrictions. eating foods that don't conform to your bloodtype can have very volatile effects, such as passing rapidly through your system. for me, type O (something) pork for example is a bad meat to eat. this has always been the case, as has been with orange juice, literally poisonous to type O bloodstream.
Well, I don't have all the facts but there's lots of info around and good books with recipes.
Good health!

Hi there, I am a 50yr old female with a complicated health history from age of 29. I had UC some years ended up with a temp ileostomy for a year while the jpouch that was formed was healing. After the year ileostomy taken down and a year after that jpouch failed due to high doses of prednisone so another ileostomy on the other side of my abdomen as surgeon couldn't put one back in the same old place. My question to anyone out there is I have had my 'stanley' ileostomy 6years now but recent emergency surgery for a hernia twisted round my bowel had surgeons asking me to reconsider a jpouch again.....I am on low prednisone now keep very good health after finding out I had after all these years Coeliacs disease so my diet before the ileostomy and now is very different with eliminating gluten.....so with the current situation I am thinking now of having another jpouch. Can anyone tell me if they have been through a second one after an original failed one. God bless all of you brave people too

Hi everyone! I had my last surgery 7 hrs ago, since that time Ive only been to my dr two times , both right after the drop down.... Today I finally went to a gastrologist due to pain and an embarrassing symptom... Sometimes I leak stool into my vagina. I'm so mad at myself... I didn't even tell him that was happening. It's so embarrassing ! He is going to do a sigmoidoscopy on Monday so hopefully I will find the courage to tell him about this before he starts. My life since the pouch 7 hrs ago is 100% better than before but now the symptoms are so embarrassing I can't tell anyone to find help.I have leakage into my vagina, explosive bowel movements , I always have to wear a panty liner due to leakage and the lack of sleep is horrible!

Mary, I hope you told your doctor. Fistulas can be a big problem and need to be fixed, especially in that area. I had one a few years back (3 surgeries in 6 months), but it seemed to heal on the 3rd try. I am very happy I got the J-pouch: it saved my life. I go 3-15 times a day, depending on what I ate and whether or not I'm having a flare up, but considering I went between 50 and 100 times a day with colitis, I feel true freedom. Will's diet is spot on to mine, and I have had little to no leakage since I had the surgery 6 years ago (knock on wood). I take antibiotics religiously and avoid lettuce like the plague. The biggest downside is the constant itching, so I carry Calmoseptine with me all the time. It's glorious. Keep up the good work everyone--we're not alone!

Hi everyone. I'm 4 weeks post-op after my one-step total colectomy and jpouch construction surgery. I must say that I pretty much wholly agree with the above list of good and bad foods. I have been avoiding spicy foods and foods with high citrus/acidic content and have only had one very mild run-in with "butt burn," so if you want to avoid skin irritation down there, you should totally do the same. I don't get very much vitamin c intake, so I take a daily chewable multivitamin for that, and to help with the vitamins I'm missing out on in my diet. I didn't have any food problems pre-surgery because I had my colon removed as a result of having Familial Adenomatous Polyposis (FAP) instead of another colon-related illness; I just completely did away with my risk for colon cancer. My surgeon made me aware that females are more prone to constant gas, especially when waking up in the morning. I take Gas-X when I'm having a lot of trouble with it. My surgeon also informed me that it's okay to take up to 16 Imodium per day for thickening movements/output. I don't take that many, just 2 in the morning and 2 before bed, but I also take 2 Lomotil tablets before most meals and it seems to help some. That's my story.. And I'm sticking to it. Good luck to all of you, and thanks, Will, for such a wonderful website and great information!

Thank you for a very informative site Will. My note is mainly for Shannon and any other F.A.P. families. I have FAP and my two sons also. My brother and one of his daughters has it too. Our mother died with bowel cancer at 44 yrs of age and we assume she had the mutated gene. I had a colectomy at age 28 and am now 70. In those days the J Pouch wasn't known about, so my smaller intestine is joined to the 5 inches of rectum/larger colon. My sons have the same operation with the joining of 9 inches. We have been on 12 monthly checkups for both gastroscopy (we have polyps in the stomach) and flexible sigmoidoscopy. Up to this point, we have had the offending polyps removed through the day surgery and there has been no problem. I have only just been found to have a cancerous polyp in the upper rectum and now am hoping to have the J Pouch. I also meant to say we have Gardners in my family too. I lost my second boy 7 yrs ago at age 38 with and an inoperable Desmoid Tumour and last year I had a Desmoid Tumour removed along with the rectus muscle and part of a transverse muscle (both of which have been replaced with Gortex mesh) and am on 3 monthly checks with that. I am hoping to be able to handle the J Pouch and on reading the variety of letters I think I will be able to. Because of losing my larger colon 42 yrs ago I can remember going through the process of trying to control the bowel,colic/gas and wondering what to eat etc. I guess I'll be back to square one with the J Pouch. At present I can eat anything and losing the colon didn't stop me from doing anything. At the beginning if I went anywhere I had to make sure there was a toilet accessable because I knew I would be going after the meal, but now I go about 4 - 6 times a day and don't think anything of it. I'm hoping with the J Pouch - although it will take some time to get used to - that I will eventually be able to adjust to it as I did when originally losing the colon. Regarding the FAP condition, I don't know if you are aware you can have a blood test to isolate the gene so that any future members of your family will only have to have a blood test to determine if they have the condition. It took 9 months for them to isolate my gene, but now the rest of my family only have to have a blood test not any other invasive tests. Thank you again Will for providing this site. I couldn't find anything like this here in Aus.

Thank you for your post Barbara, one thing that I often wonder about is if having a JPouch will affect my lifespan. The fact that you are 70 and still doing well having had the colectomy 42 years ago gives me a lot of hope.

Hi Will, I can assure you from my side my life has not been handicapped in any way up 'til now. I have always been an active person - have played all sports, gone on lots of trips, done a lot of handyperson work (laying tiles, gardening and all that goes with that and lots of other physical jobs). After working in an office all day, I enjoyed those activities and consider myself blessed to be able to function normally all these years. I might add my niece who has the J Pouch had it done at age 15, and is now 35 yrs and has gone on to produce 4 children during that time. She is still doing well and living a normal life. That is encouragement in itself. We are so lucky to have these options. Isn't it wonderful what can be done now.

After reading these comments I feel fortunate. 1992 I had surgery for colon cancer and a reoccurance in 2010. Surgery in Jan and an Ileostomy with a reconnect at the end of Feb. My Dr. really gave me no help regarding diet saying everyone is different and I will adjust to a new normal. I have had a rollercoaster ride of trying to determine why some foods seem to bother me one day and not again the next time I eat them,. Last week I was on vacation and through some really miserable days of constant trips to the bathroom and really feeling bad. I realized it is most often what I drink than eat. Tons of beverages (including soft drinks and even tea) have citric acid and ascorbic acid and it goes right through me just like grapefruit and pineapple. I am now a label reader to be sure about what I am consuming. I am feeling fortunate to have figured this out finally after 8 mos but am surprised to not have seen anyone else commenting on liquids.

Hi i had j pouch surgery on june 4 2010 because of u.c. for 6 yrs.it was the worst idea i have ever done.i kept getting infections and beeing hospitalized.This was the worst summer of my life.If anybody wants to get this surgery i recommend do this in the fall or the winter seasons.My reconnection surgery was put off twice because of the infections.I had drain tubes hooked up for weeks draining blood and bio fluids.It was the worst pain i have felt.Then i got addicted to strong pain meds dilaudid.Its been crazy.The doctor told me ill be able to eat spicy,drink beer,and nuts.After reading this im pissed that i can drink and eat what i want.I hope after reconnection everything works out ill let you know.surgery is sept.13 2010

You can try the nut butters to slow down the transition time of your stool and this will help you put on weight. Be careful not to choke on the nut butters and do not mix it with your food as well. Possibly take it before you eat. If you want to relieve gas at night and avoid messing your pants, try lying on your right side and then let out the gas...My diet is mostly just meat ..I do high protein low carb..no sugar, whether artificial or not and no grains at all. I uae to have body aches until I took out all the grains...and I have not had any problems..I recently graduated and am a nurse with a BS..plan to become PA in a few years...life goes on with the pouch..

Thank you for your wonderful site-love the comments and helpful suggestions-I had a J-pouch done nearly 2 years ago complicated with an anastomosis leak exactly 2 months later. I had many months of multiple loose stools, never seemed to changed with diet/medications (lomotil/immodium.) I take 1 heaping tablespoon of Metamucil 4 times a day and have good control but still get up 1-2 times every night. I recently started to have trouble with my breathing am now wondering if there is a connection with the GI problem. Thanks for all the info-