I am 8 weeks out and cannot even walk to the car and back without leakage. It is so disappointing. I thought this j pouch was the answer but now I am regretting it. I am constantly going to the bathroom just to wipe and clean up so I my skin doesn't get to irritated. I don't want to leave the house. Any advice on why this is happening?
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It's still a very new pouch - whatever you're experiencing now doesn't predict what you'll experience over the next months and years.
That being said, there are things you can do that may help. You haven't said what you're already doing, which invites redundant advice, but I'll offer up some things that may help:
1) Even if you haven't been doing kegels multiple times every day for the past six months it's not too late to start.
2) I used Metamucil from the day I got home, with good results. The best dose varies from person to person, and some do better with other sources of soluble fiber (e.g. Citrucel, Benefiber, etc.)
3) I get better results from Lomotil than Imodium, but either one can help. I no longer use it during the day, but I sure did when my pouch was new.
4) Experiment with your diet, making small enough changes that you have a chance at discovering what, if anything, makes a difference. People have all kinds of diet suggestions, and they're often a good place to start getting to know what works for you.
Good luck! Things should start to improve for you soon.
Thanks so much for the advice. I have been using Metamucil and taking immodium. My diet is quite bland. I have followed the doctor's advice to a tee. I just need some sort of hope that this is not my life for the next 40 years. I also have started the exercises.
It will likely get some better, I had the same issue. Some night time leakage is not unusual, daytime leakage is a whole nother thing. I didnt have that much problem at night but I am not a deep sleeper. But during the day walking around was terrible. Bland diet helped, Lomotil minimally helped. Tincture of opium helped the most, it allowed me some mobility. Putting a cotton ball in the end of the anus helped. Warm water enema to clean out what is in there helped. There was no doubt in my mind that it would never be "fixed". After putting up with it for 18 months I went back to an end ileo. Much better life with an end ileo. I do anything I want. The trade off is the external appliance, well worth it for me.
