Hi, EKF. My reversal was in April. It will get better for you. Don't lose hope or be too discouraged. You are very early stage. My first two weeks with my j pouch went well with solid, formed stool, four times a day. I thought, wow, this is great, this is how it will be. Then I developed pouchitis three weeks in. Cipro, then flagyl helped. Like you, I spent most of my time in the bathroom or feeling I had to go every 10 minutes. Sometimes 15 times a day. Frustrating, depressing, worrying. I couldn't leave the house longer than 20 minutes before feeling the BURN that meant leakage. Constant acid leakage, skin tag. I had to wear pantiliners all the time. Waking every two hours, no sleep. I tried Metamucil and Immodium but did not make a lot of difference for me. I felt if these didn't work, I would focus on food intake.
Then a week ago it got better. Now I use the bathroom five or six times a day, down from 10 to 15 in April, May, June. Sometimes it is formed, sometimes fluffy. Nightly incontinence has stopped. Leakage is minimal now. I found that boiled or mashed potatoes worked really well to thicken things a lot. I'm diabetic so I make a hard boiled egg and mash it into the mashed potatoes to slow down the sugar uptake, seasoned with mayo and garlic powder. I eat a lot of broiled or baked chicken, steamed fresh fish, sometimes steak, lots of protein. I try to eat whole foods, no processed foods. Cheese, but no processed cheese slices. Well cooked cauliflower, spinach or broccoli for fiber. No citrus fruits because it burns me coming out. I miss fresh fruit, but maybe in a few months. When I came home from reversal (five day hospital stay), I ate a lot of white rice with a poached egg on top and mashed it together, seasoned with soy sauce or anything non spicy (not ketchup because of the sugar). Sometimes topped with a piece of fish or tofu. The rice and poached egg and fish worked best, for me. It was soft and easy on my j pouch. Orzo pasta mixed with feta cheese, salmon, finely chopped cucumber, olives and red onion, seasoned with olive oil and rice wine vinegar.
I kept going out, armed with liners, moistened paper towels in a zip lock, and squirt bottle. I didn't want to give in after coming so far: I had UC for 30 years with two or three bad flares per year, but did not need medications. After a regular colonoscopy late last year a spot was seen and turned out to be an early cancer. In February my colon and rectum were removed, j pouch created with a temporary ostomy. Ten weeks later, in April, my reversal. After three months of a naughty j pouch, BURN, leakage, frequency, BURN, frustration, I noticed improvement a week ago. I kept gardening, going out, eat mostly what I like except sugar and simple carbs which irritates my j pouch and my diabetes. Try to avoid stress. I used to stress and hold worries. Now I let things go easily, and don't sweat over things or situations I cannot change. Keep active, keep moving, use all your muscles, deep cleansing breaths. I hope this long missive is helpful to you, and I hope things are better for you very soon. Be patient with yourself. Your body has gone through a major change. Let what you do today be enough.
