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I am three and a half months out of takedown. Its been pure hell. I feel physically better, I am strong, but I am on the toilet all the time. Literally all the time. I have had dilatation, several rounds of Cipro, chnaged over to Lomotil, and I am about at my wits end. I am 58 and I did this so I could work another 10 years or so. I dont think I can keep this up. I hardly sleep, I carry a diaper bag everywhere, I am always checking "do I have enough pads, cream, wipes, underwear, etc" that along with the surgeries have left me sef cathering my bladder.
I am seriously considering going back to bag. At least I could count on it working. At least I could sleep.
I dont know.
I had my surgeries at Cleveland Clinic and cant say enough about how good they are, its just this is killing me.
My wife is BiPolar and does the best she can but she has her own issues. We have a 16 year old daughter who now lives with my brother because of all we are dealing with.
I dont really think there is any magic out there for me, I guess I just wanted to vent a litte to someone who gets it.
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did you analyze your diet? i'd try to:
1) avoid every drinking over meals (space at least 1 hour)
2) minimize milk and gluten for a week and see what happens (in my opinion they are not well tolerated) substitute with white rice and potatoes
3) eat lots of bananas on empty stomach (space at least 2 hour)
4) eat grated carrots and zucchini
5) eat good quality fish and white poultries (chicken, turkey)
6) keep the meals simple without much dresses (I think olive oil is the best, and homemade mayonnaise made with olive oil is good)
7) try cautiously some well cooked cabbage (broccoli)

try this for some days or one week and see if things improve.
Though not clear it sounds like you have incontinence which is ultimately caused me to go from J to end ileo. I lasted 20 months and there is the possibility of things improving for you. I was told after a year you basically have what you have and it likely isnt going to change much though a few people have posted major changes (for the good) after a year. Most rapid improvement is in the first months after surgery. One thing that did help was tincture of Opium. The ileo has given me much more freedom.
It is still early in the adaptation phase, so a lot of improvement can occur, if you can wait it out. I was going to also suggest Tincture of Opium or Paragoric, since this can be better than either lomotil or Imodium. Plus, diet can play a big role. Most frustrating about that is that dietary tolerances are also in flux, so unless you want a very limited diet, sometimes you can be caught by surprise.

What do the docs at CC suggest?

Jan Smiler
I'm a strong believer in not setting time frames on these decisions. There isn't a right time to go back to an ileo. It's up to you. If this isn't working for you, even though its only 3 months, well then go to the ileo. There's no rule that says you have to stick it out the year, and certainly no shame in choosing to have more stability.

If you tolerated the temp ileo well, maybe you could disconnect the pouch for a while until things with your family feel more secure? Especially with what is going on elsewhere in your life, you may appreciate one less variable.

I had chronic pouchitis and stuck it out for 3 1/2 years then chose to go back to the ileo (end ileo with pouch disconnected). Wish I had done it 2 years earlier. That was 13 years ago (since had the pouch out 11 years ago) and I've never regretted it.

The most important thing is to decide what quality of life means to you at this stage of your life and then make the choices that give you the best shot at living that way.
Talked to Docs at CC and have tried adding in 4ounces of water with heaping tablespoon of fiber at bedtime. Did eat a banana at supper along with baked potato. No incontinence last night! The nurse was very reassuring and calming.
I will try some of the above suggestions.
What does the tincture of opium do?
How do you take it?
Thanks for the advice, had a much better night.
For the sake of brainstorming, here are some other ideas that have helped me in the past.

1. I've consulted with a dietician that works at my local cancer hospital. She also a naturopath, but her extensive experience in working with cancer patients was helpful in helping me design my diet to work with my unique plumbing. Finding the right person can make a difference. The short advice - reduce consumption of foods that create gas, like carbs/sugar. Once the gut is agitated, it moves everything faster.Cook all your veggies - raw veggies cause more gas/move faster. I take 2 or 3 immodium with every meal. Metamucil and VSL#3 in the morning.

2. A naturopath I've visited years ago would prescribe Butyrate/L-Glutamine enemas - 1 twice a day for 2 weeks as needed for pouchitis. It was special ordered at a local pharmacy. It was very effective with pouchitis, it might help slow you down.

3. Keep an open mind about who you consult with, it may be a matter of finding the right person that can connect you with the best treatment. Also feel comfortable ignoring advice, not everything works.

4. Good luck, hope things get better soon.

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