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I'm new to this forum and I just got approved today. Well, I had my colon removed October 2016 with a temporary Ileostomy until my take down in December 2016. I had to get my colon removed due to having fap and a high chance of getting colon cancer one day. I had found this out because I had a colonoscopy and upper scope in August 2016. My colon had hundreds of pre-cancerous polyps. I also have polyps on my stomach and have a high chance of getting stomach cancer. I have to get an upper scope every six months because of this. When I found out I had to get these surgeries, I wanted to cry. I didn't want to get the surgery, but it's not like I had a choice in the matter. Everybody told me it would be okay, but they have no idea how not okay it is! They just don't understand it at all and some people try not to understand. 

Post take down has been a hard time for me. Not just because of the pooping all the time and the butt burn. I was recently in so much pain from my chest to the upper part of my legs. I went to the er and they said I might have infection. They also said I have fluid in my abdomen. They gave me antibiotics, but it didn't help. My surgeon Dr. Hutchinson said it could be gas or the bowels slowing down. She said to eliminate soda from my diet and it helped a lot. Now I just have this pain in my butt and when I have this pain, I can feel my heart beat in my butt at the same time. Does anybody else ever get this kind of pain? Sometimes it makes it feel like poop is coming out, but when I check my underwear, there's no poop there. It also feels like something sharp is poking my butt and it hurts really bad. I also have to strain a lot when I poop and not much comes out. I'm constantly in the bathroom though. I take colestipol for pooping because lomotil didn't help me. My GI said not to take too much of it, though he didn't say why. I know colestipol is for lowering cholesterol, but it helps keep my poop somewhat formed. I think it might be making it hard to poop though. Has anybody else took it for the same reason as me? Just curious because I haven't read anywhere about anybody using colestipol. Well, hopefully things get better for me soon. I'm glad I found a place where I can talk to other J pouchers. Sorry my post was so long.

 

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Hi, Ericalee - welcome! I'm sorry you're struggling with your pouch. It sounds like you may have developed an anal fissure, which is very painful. It's best if your stool is soft but not liquid. Straining is part of what can cause anal fissures. Plenty of folks use cholestipol, and the other common resin that binds bile acids, cholestyramine. Welchol is the brand name of a third one. If you search here for those names you'll find most of the discussions about them.

Anal fissures (if that's what you have) can be treated with nitroglycerin or nifedipine (or diltiazem). Even Botox is sometimes used. Hot water baths can also help. Good luck!

Apply ilex Paste to affected area either to prevent of relieve pain and discomfort.

I also insert ilext paste just to the inside of the sphincter, as far as comfortable to apply on tip of finger, this works for me and durring application, due the cooling effect of the ilex, I'm able to pinpoint exactly where the fissure is.

Hi Erica,

 

For buttburn, I use a bidet seat (you can buy them on Amazon) and calmoseptine paste. They've been a life saver. The bidet washes away the acidic output and also gives your bottom a break from the rubbing / irritation of toilet papers. In terms of difficulty evacuating, I bought a squatty potty which seems to have helped! I've also found that sometimes I just have to sit on the toilet for 10mins and wait....

 Also, I try to keep my stool a bit more towards the liquid side as I found this helped evacuations.. Try a few days without the stool thickeners and see if it improves!

Hope these solutions work for you.

Last edited by min990

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