Janice, Have you had the J-pouch procedure with Dr. Kaiser? I just had my colon removed and am looking to meet with him regarding the J-pouch. He has come highly recommended by a friend in the healthcare field. Chuck
Hi dpol, I've had my K-pouch since 1978 and have not noticed that it needs to be emptied more often now. Only time it feels like it needs to be emptied more often is when I'm starting to get pouchitis. Then I'll take Mycostat (3 capsules twice a day after meals) for a few weeks and my pouch returns to normal. Eating right makes a big difference for me. Debbie
How did you hear of Mycostat? I take a probiotic and my output is pretty thick and consistent so I do not think I have pouchitis. My problem is after I eat I have to go to the restroom within an hour or so or I can have trouble with my valve and getting in. This messes with my going out to dinner,etc. and is not appreciated. I am happy you are doing well, did you have your surgery at Mayo under Dr. Beahrs?
Hi dpol, I started seeing a naturopath about 4 years ago, and she is the one who had me take Mycostat when I was getting pouchitis. (The GI doc used to have me take flagyl for 6 weeks and I would feel nauseous the entire time. I hate that stuff and it's really hard on your liver). I too take probiotics, but still get pouchitis occasionally (although much less often than before I took probiotics). I don't get diarrhea with pouchitis, but feel the need to empty the pouch even though there's not much in it. Eventually it gets crampy and feels like it constantly needs to be emptied. But even after emptying it, there is not that empty feeling. After a couple of days on Mycostat (3 capsules after meals, twice a day) I start to get relief. Recently I started having some problems with intubation, and then I noticed that I was starting to have that pouchitis feeling. I rationalized that I probably wasn't getting everything out of my pouch because it was too hard to put the tube in and out. I used to put it in and out several times per emptying in order to grab any roughage that remained. But I stopped doing that because it wouldn't always go back in once I took it out, so I think there was food remaining and pouchitis was setting in. I took the Mycostat and got relief from the pouchitis feeling, and then I found this forum and read that switching catheters could help with intubation. So I switched to a bullet tip catheter and THANKFULLY that helped me. Perhaps because you are having difficulty with intubation, food is remaining and you are getting pouchitis. I don't think it can hurt to try Mycostat and see if it helps. However if the pouch isn't emptying completely, that's not good. Which of course boils down to the bigger problem of not being able to get the tube in. It was just awful when that was happening to me. I feel for you. You never know how long you will be in the bathroom waiting for that tube to go in, if it even will. I was late to work many mornings because I couldn't get the tube in. I still need to find out what's going on with my valve since something obviously changed, but I haven't found a K-pouch doc in northern California yet (my search has not been exhaustive, but it's not looking good). My original surgeon was DenBesten at UCLA, but that was sooooo long ago. Let me know if you try anything that works. Good luck to you! Don't give up. We are all so different. Debbie
Thanks for the name and recommendation! I will give him a call if I can't find someone up here.
I take Mycostat Complex Caps by Professional Complementary (I buy it on the internet). I start with 3 capsules after meals twice a day, and then after a week cut back to 2 caps twice a day for 3 more weeks. Then 1 cap twice a day for another month or two. (My naturopath does things very cautiously). In the beginning the Mycostat would cause me to burp and had an odd smell, but either the burping went away or I got used to the smell, because it didn't seem so bad after awhile. Please let me know how it works for you.
I would warn anyone who thinks they may have pouchitis - to first contact your surgeon / GI doc. They may or may not order a scope. Flagyl and or Cipro usually works after a 12 - 14 day dose. I am not against probiotics or vitamins. But if you do have pouchitis and you let it get a foothold - you could end up very sick. Then it will be even more difficult to cure! Trust me, I have had a K-pouch since 1976.
I do not think I have pouchitis because my output is very consistent and not runny. My only issue is that my pouch does not seem to hold the same amount it used to and when it gets kinda full my valve doesn't work as it should. Thus I have to do special things to enter my pouch that I can not do in a public restroom.
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