Replies sorted oldest to newest
Don't get yourself down/psych yourself out. You have a long way to go to get to your best. It will get better!
I don't remember having to get up quite that much with my takedown, nor do I remember having daytime accidents. I *did* have some leakage at night, in the very beginning.
Have you changed your diet drastically since you went home? Are you advancing your diet too quickly?
Back when I had my takedown, in 1991, I did not have the internet or many people to talk to this about, but it was suggested to me to eat "thickening" types of food, at first (now, I don't know what other issues you may have; stuff like "SIBO" and whatnot was not identified back then, nor was anyone afraid of gluten or whatever, and I don't think they even mentioned "pouchitis" to me at the time as something that could happen).
However, it was suggested to me to eat things like pretzels, potatoes, breads... also, of course as today, my doctor suggested Metamucil and Imodium if necessary (I never needed them; they made things *too* thick), but are you utilizing things like psyllium and meds like Imodium? Or maybe ask about Lomotil?
I also Kegel'd like a maniac. I'd keep up on those, too. Can't hurt.
Overall, I never really did alter my diet much, except at first doing the pretzel type thing. Peanut butter, too, worked for me. But I've been someone not bothered by loose stools, and had good luck after a short period of time with being continent and not having accidents. I was also only 19, too, and I do think that youth was on my side (I'm a nurse, and I do know that for the most part, EVERYTHING medical/surgical gets harder and harder the older someone is, it just is a truth). Plus, you've had two takedowns, so maybe that contributes to things?
Anyway, those are my suggestions. Nothing new that you probably haven't heard or tried in the past... not trying to reinvent the wheel here or tell you stuff I'm pretty sure you've already heard. But those are the things that worked in my favor. I hope you get some relief soon!
thanks rachel.
its weird. this morning i took my meds, had 3 eggo waffles took my meds and here i am 4 hours later and have not gone to the bathroom but my bottom has so much pressure. no pain anywhere else.
Never know, you could go to the opposite end of the spectrum, if on things like Imodium. Might need to tweak things.
I remember at first doing the Metamucil, because they really pushed me to, and it made things WAY too thick! Could barely get it out, so cut that out immediately. Things for me were not as loose as I think some pouchers experience in the beginning. I've always wondered if I might have a lengthier small bowel than some, equating to more absorption time? I'd be curious to know that info...
dgtracy,
It's frustrating, I know. I had my first and only daytime accident with the j-pouch about 3 or 4 days after coming home from the hospital. Before that everything had been fine. I had been watching television, stood up and had sudden urgency, and just didn't make it down the hallway to the bathroom. I was so upset and frustrated, thinking that this would be my "new normal." Thankfully it was an isolated incident, and I just chalk it up to getting used to the pouch. The point is, early post takedown this is not unusual, nor does it mean that this is going to be an ongoing or permanent problem.
Some of the reasons you may be having issues now while you weren't in the hospital is probably due to the fact that you are moving around more since coming home, as well as eating more, or else eating different foods and at different times. It does improve. You can take up to 8 imodium during the day - if your pouch is more active in the evening and overnight, you may want to increase your dosages from midday onward in an effort to slow things down. Also try thickening foods, like rice, oatmeal, bananas, and pasta.
Hopefully this is all just the adjustment phase and it will get better!
Hi dgtracy,
I just wanted to commiserate with you. I just recently had surgery as well (1/29/2015) and am now home and feeling like "did I go through all this for nothing??". Although my surgery was different (I've had a j pouch since 2004 and had to have adhesion removal surgery for constant bowel obstructions), I've been home less than a week and am back to feeling how I did before the surgery...bloated/gassy/uncomfortable every time I eat. I hope that this is just a bump in the road for both of us, and hope that you get to feeling better soon.
-Jill
Metamucil was GREAT for me. It's worth a try.
