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I felt like I needed a place to vent and share some frustration, so thank you for giving me the space on this forum! Definitely TLDR...

One year ago today I was in the hospital, recovering from step 3 of my J Pouch procedure and looking ahead to what I hoped would be a brighter, less chronically poopy and fatigued future. My first surgery had gone perfectly, in and out of the hospital in a few days, but my second surgery resulted in an ileus, NG tube, and ten days of groggy hell, and my third surgery hadn't gone great either. In retrospect, we rushed it a bit because the placement of my stoma was causing me so much skin burn and pain, but I just wanted it to be gone. After five days in the hospital, I was sore, tired, and unsure of what was next, but within a few days I would be home and ready to regain my life. We had a one-year old, I was working full-time and finishing graduate school, and I felt like I knew I could conquer this obstacle -- heck, what was the alternative?

Prior to my surgery, I suffered with ulcerative colitis (initially diagnosed as Crohn's, then indeterminative colitis, and finally ulcerative colitis) for 8 years, from 2013-2020. Although I never suffered weight loss or countless surgeries like many of you, at my peak I would have 20-25 bloody bowel movements/day, with no control and almost no ability to leave the house. If I had a nickel for every alleyway, bush, or private restroom I snuck into, I'd at least be able to afford a McDonald's Happy Meal, if not every item on the dollar menu. I tried every biologic on the book - sometimes I'd get a brief response, but I never really worked my way into remission. I even tried doing a temporary ostomy in 2014/2015 to give my bowels time to rest and heal before going on Vedoluzimab, but it ended up being the same story as the other biologics. At least, I told myself, I'd know what an ostomy would feel like if I ever needed to have one for the rest of my life. The only thing that really helped during those years was prednisone, but I was on steroids so long that at age 25 I had to have cataract surgery -- bye-bye perfect vison, hello cat's eye.

My 20's weren't easy, but they were also some of the happiest times of my life. I met my wife; worked a demanding and fulfilling job; developed some lifelong friendships; pursued my passions; and I entered my 30's about to welcome our first child into the family.

About that time, with the onset of the pandemic and my son entering the world, my ulcerative colitis stopped responding to steroids, the one thing that had always managed to trigger some kind of response. After much consultation and soul-searching, I decided to go for the J-Pouch. I spoke with a number of folks who had J-pouches, including some people on this forum, and heard stories of success and stories of long-term challenges. My surgeon thought I would be a success story, and I hoped so.

So, here we are, one year out, and I don't feel particularly successful. Last night, like most nights in the last month, I woke up 2-3 times to poop, struggling to sleep after. I'm tired all the time. I try to go to bed early, but it takes me at least an hour to finish pooping in the evening. I poop at least 10+ times/day. Most days I have to use ilex after every bowel movement because of the burning. There are times when the searing pain of raw skin and dripping stool brings tears to my eyes. My surgeon and GI doc did a scope two weeks ago to see if there was anything that looked wrong, but nothing was off. No pouchitis, no issues. I guess that's good?

They recommended that I start pelvic floor physical therapy, which I will, but I feel so deflated. I thought that one year in, I would be doing better than this. I hoped for it, prayed for it. We're expecting our second child in a few months and I just wish I were healthier for her. No one needs a sick, frustrated Dad who can't stop pooping.

I'm open to any advice, I just don't know what to do anymore. Thanks for reading, much love to you all.

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Hi Newdad!

I am a 23 year EXPERT in managing output. It is fantastic that you don't have ulcerations in your pouch. There are a few things that help immensely if you have not tried it, yet.

1. NEVER! eat an onion or garlic or anything made with onion or garlic. Its in EVERYTHING (mustard, katsup, salad dressing etc) Try a low fodmap diet. Easiest think to do is only buy one ingredient items. Eat only things on that list to see if your symptoms improve.  I was telling my doctor about this 20 years ago. She didn't believe me. Now there is so much data. This will especially lessen gas and irritation and need to go.

2. Eat SOLUBLE fibre. Avoid insoluble fiber. Metamucil wafers (cookies in the pharmacy section) are the best thing in the world. They thicken the stool and seem to slow things. I will eat up to 4 packets a day of Metamucil. Eat INSTANT oatmeal. Add Pure physillium husk powder to whatever you eat (active ingredient in metamucil). Start slow on the metamucil wafers to let your body get used to it. Eat white rice.

3. NO Caffeine. It increases the go.

4. NO carbonated drinks. Increases gas and need to go.

5.Try alternate to cow milk.

These are the quick and easy things to try (plus you'll be on the same diet as your baby!)  I can't urge you enough to go to the store and get instant oatmeal and Metamucil wafers.

Good Luck!!!


1 Step Jpouch after UC 1997, 21 years chronic pouchitis with ulcers/antibiobtics, Remicade started today

Hi newdad,

I feel ya bro!

I am 9 months post takedown 1 and 2.

I spent the entire month of November 2021 with what I thought was fire shooting out of my butt.

I finally turned it around by taking loperamide 2mg 3 times daily on a schedule; breakfast, dinner and bedtime. It’s the only therapy that slows my gut down enough to have somewhat of normal life.

admittedly I have not really tried the Metamucil route consistently enough to see a difference, but for now the loperamide has given me a satisfactory QOL  for the time being.

many foods and drugs will throw off my balance, but I can finally say I have I am having more good days than bad days.

Hang in there

Hey mate,I had my takedown in Nov biggest help would be psyllium husk,I take a teaspoon three times a day , just tip the spoon in my mouth and then drink something.I drink a sugar free electrolyte sachets from the supermarket. Portion sizes and Asian style foods like teriyaki chicken with rice or noodles with peas,egg fried.,shrimps.but psyllium is the key for me.still not normal but today I went 6hours without a bm.

A work day .

5.30am take 2 loperamide, 1 1000mg vit c with echinacea and a mens multi probiotic then get up bm then shower and put sudocreme on batty crease.

5.45am small banana.

7am bm,1 litre of prescribed electrolyte drink during 8 hrs shift.

10am coffee with milk no sugar and teaspoon of husk with water  bm.

12.30 cheese,tomato,two slice of rye

4pm teaspoon husk,bm

5pm chicken ,rice or noodles,peas,egg.or chicken burger of things.

8pm teaspoon

Anyway I'm just trying to help but I m not saying this is the way.

Last edited by Chook2

Really appreciate the responses and recommendations! Since posting, I tried using psyllium husk and it definitely makes a difference! I use it before each meal and before bed - mixing with a bit of juice and water. Really thickens the stools and reduces butt burn! I can’t say I have had a huge reduction in number of bms, but I’ll take a thicker poop over hot fire water any day of the week!

The other change is that I also started taking a prescribed opioid before bed. The first few nights I slept through the whole night or had one wake up, which was a big improvement. Since then it has been a bit more hit or miss, but I’m continuing to experiment and find something that works.

Re diet, appreciate the recommendations Valerie. I’ve been on low fodmap before and never saw much improvement (both before and after J Pouch), but I definitely support more bananas and oatmeal. I am also eating more yogurt, which I think is helpful. Truth be told I should probably be more diligent about diet, but I also love food! It’s always been a joy, and I think I’m ok living with a few more bms if I get to enjoy a diversity in what I eat without feeling deeply stressed about meals and possible ingredient contamination.

I’m feeling more optimistic about things, but if I get down again I’ll consider going low fodmap elimination for a few weeks and see how I feel. Maybe I’ll do it around beach season

One more question - has anyone tried pelvic floor physical therapy? My surgeon recommends it and I’m setting an appointment up next week. Would love to hear if it has worked for anyone!

Last edited by Newdad5152

Hi, Newdad. I joined this site last night just to answer your question. :-) I did pelvic floor pt before my pouch creation. My gyn prescribed it because I could not distinguish uterine cramping from uc cramping, but whichever it was, I needed it to improve. And my gyn and gi docs both thought pelvic floor pt could help. The short answer to whether it will work for you is: it might.

My therapist asked a lot of questions and did a battery of many tests, which surprised me (about a 2-hour appt). One was like biofeedback, where she put a little device (think tampon made of plastic) in my anus, and had me do a bunch of different exercises that were basically kegelling while I watched the strength of my muscles graphing on a screen realtime. Looking online, I think it's called rectal surface electromyography (SEMG)-assisted biofeedback. I'm a person who exercises nightly, but not always kegels. I had pretty good pelvic floor muscles. But, we discovered that when I'm in the relaxed position, I'm not really relaxed. I think with UC and a history very similar to yours, I had gotten to where my resting position was still contracting my sphincter. Which is pretty exhausting for any muscle. For me to relax my sphincter, I would feel almost like I was going to poop a little. She gave me exercises, which are a customized set of kegels for me that include relaxing my sphincter (is it sad that I have to practice relaxing? ha!).

On December 9, I had my jpouch created, which means rectum removed, and since then, my relaxed position is more normal. I'm doing my kegels regularly now that my surgeon cleared me at my jpouch followup. My hope is to have my pelvic floor ready for my closure on March 24 (especially after reading your post). I plan to see my pt specialist again before and after that surgery so I'm as prepared as I can be.

Did it help my pain? I'm not sure. I honestly think that removing my rectum helped my pain the most. I'm still getting moderate cramps, and maybe the kegels are helping those, because they used to be stop-in-your-tracks painful, and now they are just "is it time to take more advil yet?" painful.

So, pelvic floor therapy might help you, especially if there's something unexpected or subtle going on that you could improve with a few exercises. Idk if it will help you toilet less, unless the floor strength helps you retain stool in the pouch for longer. If you try it, I encourage you to find a *specialist* in pelvic floor therapy. Lots of general PTs offer pelvic floor therapy, but even my usual physical therapist told me to find a specialist because she herself saw a therapist for pelvic floor once, and that person just gave her kegel exercises, so not very useful. Look for someone who offers rectal surface electromyography (SEMG)-assisted biofeedback. Mine was at a teaching hospital and took months to get in to see her, but well worth the wait.

Hope this helps you...


I was diagnosed with ulcerative colitis in 2015. I was initially treated by a gastroenterologist who almost killed me when he prescribed 6-Mercaptopurine. I was prescribed every TNF inhibitor and biologic on the market. Nothing worked except Prednisone. As a result of long-term Prednisone use I developed bilateral cataracts and osteoporosis. In 2019, while awaiting scheduling for J-Pouch surgery I suffered a complete fracture of my distal femur, requiring surgery and placement of a titanium rod and screws (I’m still recovering from this).
  In February, 2020 I underwent stage 1/3
J-Pouch surgery. Following surgery, despite taking Lovenox, I developed DVTs in hepatic, splenic and mesenteric veins. This required a week of hospitalization for Heparin and 2 months of Lovenox.
  My temporary ileostomy was a nightmare! I can’t thank the Cleveland Clinic Ostomy nurses enough for their care and expertise. With the ileostomy  very little nutrition was absorbed, I was hospitalized 4 times for dehydration and malnutrition, and lost over 60 pounds, including muscle mass. I looked like a walking skeleton (and walking wasn’t easy due to the fractured femur). All of these events delayed the next 2 stages of
J-Pouch surgery. My last surgery and ileostomy take-down was December, 2020.  I have come out on the other side of all of this, and now enjoy relatively good health. My diet has liberalized some with the J-Pouch, but is restrictive in a good way. I try to follow the Specific Carbohydrate Diet, as it is what keeps me most comfortable. The only GI-related medications I take are a daily probiotic, and Cholestyramine as needed for burning stools (which can usually be controlled with diet). I support the use of a skin barrier with each BM. For the most part, petroleum jelly (Vaseline) is effective, but when skin is very sore I change to Zinc Oxide. Personal hygiene is a 3-4 time/day activity, including showers day and night.
  The Cleveland Clinic Department of GI Surgery is second to none in surgical techniques for J-Pouch surgery, and in particular Bradley Champagne MD and his team of professionals. He saved my life and my sanity.

  One complaint I have in this whole process is that when a diagnosis of ulcerative colitis is made, why nutrition management isn’t as big a part of treatment as biologics. I only learned of the benefits of the Specific Carbohydrate Diet AFTER taking multiple medications (that didn’t work!)  and AFTER my total colectomy. I learned about it not from a physician or dietician, but from doing my own investigating.

  I do hope that each if you is able to find the right plan that allows you to have a comfortable and healthy life for many years to come.


Hi, new dad, I went thru PELVIC FLOOR P/T 2x, the 1st time after I had to have a total augmentation of my j-pouch (1 yr AFTER my original j-pouch creation by a different CR Surgeon)! Dr. Fazio had to open me bck up to do the pouch augmentation; shortening, reshaping, + reattaching it to my anal sphincter muscles.                             When that was all completed, they gave me a script for the P.F. p/t. I went to the fibromyalgia clinic where they this uninary incontinence biofeedback computer training program. (It was just like biofeedback program "Kellydg" went thru.) Even tho it was for UI, I was the 1st patient they tried it for fecal incontinence + to strengthen the anal sphincter muscle. It worked gr8 for yrs. I did a refresher round of the biofeedback p.f. p/t training program a couple yrs ago.                 

To address frequency of my BMs per day, almost everyday I take 2 or 3 Lomotil tabs at once.  Taking Lomotil slows dwn my peristalysis (intestinal waves that give us the urge "to go bm"), therefore, in not running to a bathrm a dozen times per day. Also diet is imprtnt, very low suger, plus all the other suggestions from the above posts, the Metamucil helps, too! Gd luck!


Hi @Newdad5152.  I'm an old mom! And a 40 yr UC suffer at the 9 month mark from  take-down. I cycled through biological and used 6MP successfully during some years, had blood transfusions and intravenous iron from time to time. And obstinately stayed off meds during many others. Absolutely avoided prednisone after my first bad flare following onset in my 20s. I was a high-functioning disabled person my entire adult life, though few people knew it. Then a final flare, high-grade dysplasia caught up with me & the colon had to go.

My surgery was two stage with no complications. And my pouch has no ulceration. But I had many of the same issues that you describe post take-down.  It turns out that I had a mucosal prolapse. This narrows the opening and makes elimination more difficult, causing you to strain which in turn makes the prolapse worse. This was suspected by my GI and diagnosed with a barium study.  I underwent a minor procedure during pouchoscopy to address it. Also added Metamucil-like fiber supplement (psyllium husk powder) as many on the chain have suggested.   It helped a lot. As did dietary changes: low insoluble fiber, low sugar/refined carbs, and no late meals. (Lots of oatmeal, rice, lean protein.)  But I'm also doing one other thing:  antibiotics.

Basically, some pouches tend to be "floppy" causing mucosal prolapse, can occur in different locations in the pouch. People are reportedly more likely to have this if they are tall and thin with little abdominal wall fat.  Even if antibiotics are not needed for pouchitis, they can be useful to control the bacterial overgrowth that may occur when the pouch isn't emptying easily.  Some folks use Flagyl & Cipro. A few weeks of the combination was life altering for me.  But each time I stopped the symptoms returned.  Xifaxan is the antibiotic favored for long term use because it is not systemically absorbed. If your doctor uses a specialty pharmacy that can get past the insurance pre-approval, as mine does, it could also be something to consider.  Right now, I'm still dealing with minor leaking at night. (This is more common when the rental  "cuff" is removed during surgery). But my days are almost normal with Xifaxan and psyllium husk and a few Imodium or Pepto Bismol at bedtime. Starting to add back more varied foods.  Still getting up at night, but only once, whereas a few months ago it was every hour or two.

I understand that the pouch mucosa actually changes over time, and others on this site have noted improvement over several years. I feel as though I've turned the corner. You will, too.

I'm just over one year out and finding the free pedometer step apps great in doing 10000+ steps a day which helps my digestion but improves sleep and energy.and intermittent fasting by eating between 12-6pm helps lower bms and improve energy as taking psyllium husk but also white sandwich bread with dinner .been making my own meatballs lately which are easy .

Last edited by Chook2

I have no experience with the pelvic floor exercise or physical therapy.

After 1.5 years of pain with my new jpouch I decided I had enough and consulted Dr Remzi. I was previously told I had ischemic pouchitis. He asked me how I was feeling and I said I'm in diapers and starving myself because eating causes pain. He agreed to treat me. He redid my jpouch (which itself was viable however it was twisted) and ever since then I've been doing great. I have 6-8 trips to the toilet each day. I eat 3 meals a day. I sleep through the night. Life is really good now.

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