Extremely uncomfortable and frustrated!

How far along are you with your pouch? I'm at 23 years. My GI guy and surgeon both said that after about 20 years, the biopsies they send from pouches look more and more like colonic tissue (he had a name for the conversion, I can't remember it... said if they don't tell the pathologist it's a pouch from small bowel, they can't tell and think it's large bowel mucosa). My pouch is sometimes *too* efficient these days with water absorption. I've never ever needed fiber supplements or Immodium or Lomotil, or things like that... so I always tended to have thicker output than some. The docs both agreed that this can happen (better water absorption), and thicker output.

However, I also had a stricture that made going COMPLETELY horrible and difficult to pass. But you had a scope and exam, so that's likely not your case (I would suppose they would find that). For me, I had a few dilations under anesthesia. My surgeon just examined me Monday, and said all was good, but I'm still having mild trouble sometimes passing stool. Mostly because it's thicker.

I had to really edit some foods, too. I used to be able to eat ANYTHING, but things that don't break down are no-nos for me these days and include: corn, peas, Chinese vegetables, nuts, seeds, quinoa (ate that once, thought I was going to DIE), mushrooms, granola... For almost 20 years, I could eat all of that stuff; now, I don't even chance it.

But sometimes, when things are too thick, I take Milk of Magnesia, in a smaller dose than recommended. It's a non-stimulant, and the only one I can take that doesn't cause me awful cramping (though I've not tried Miralax, either). I usually take about 5-10 mls, at bedtime. This does often cause me to wake up around 3am, but I don't normally care. If it's REALLY bothering me, I'll do a small Fleets enema (I save the bottle and just refill with tap water), and that's often enough to get out what's bothering me in there.

I told this to the GI guy, he wasn't too concerned, and he said that it's ok to do these things if I need to. Today, I started out a bit thick, got most out... then after breakfast and lunch, I went, and things were passable and fine. Didn't have to do any MOM or Fleets for it, so sometimes it's also just a time thing for me.

Hope this helps.

I take 2 doses of Miralax daily to keep things flowing and comfortable although right now I am in the hospital with a slowly improving partial blockage so even with that regimen I sometimes get obstructed. I can understand your frustration. I find that walking and lots of fluids are the best thing for pouch happiness. Everyone says it and it's true. I hope you get some relief soon.
Savannah

Thank you guys. My pouch is only 3 years old, but my previous surgeries/ removal of the colon was 6 years ago. I've never had this problem before, even when I was on pain meds. I try to stay away from things that I know are definitely going to cause me problems (such as corn).

My GI doc told me not to take MOM, not really sure why though. I've been trying to increase my fluid intake by also drinking more juices (which helped in the past, before my surgeries) I just hate taking anything because when it does finally make me go it literally feels like acid and I'm tears and can barely walk.

I will definitely keep up the fluids/ Miralax and add in more walking. Thank you for the helpful posts

I would get a second opinion.

I'm seeing my surgeon on the 24th of this month. It's still hard for me to go (only going about twice daily and have to strain) and I still feel crappy (headaches, trouble sleeping, nausea) I stopped taking the Miralax because I was feeling so nauseated. Now I'm just not sure what is nerves and what is actually wrong because I've been so stressed about not being able to go and in pain.