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My specialist did a scope on Monday. Half of my pouch is terribly inflamed and bloody. Has anyone heard of this before? 

I had the j pouch connection done 4 years ago now. Right from the start I needed a pad or folded up toilet paper because of leakage. I still need to do this. I have bad diarrhea all the time when I go to the toilet, and the odour is quite bad too. And often I pass blood, quite a lot sometimes. I often feel a little sick. Kind of expect a stomach ache to hit any minute but it doesn't quite get there. I just feel ill and pass a lot of blood when I feel like this. 

Last year I was in hospital from feeling so sick. They put me on anti biopics and pro biotics. At first I noticed a big difference. My 'doings' were solid. For the first time in a long time. And no odour either. But when the drug prescription ran out everything went back to what I now consider normal.

I go to the toilet 12+ times a day, that's including a couple times during the night. And this week there is a lot of blood and illness feeling. 

I've started drinking Turmeric and ginger tea for it's anti inflammatory properties. I don't work at the moment so I can't really buy much in the way of drugs.

My specialist wants me to go see him but I can't afford it. He seems to think I need to go back on some strong drugs that I had when I was first battling UC. He also seems bewildered by half of the pouch being inflamed and not the other half.

Has anyone experienced this?

Last edited by MadMax
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It sounds like the antibiotics helped you a lot. They aren't very expensive (except for one called Xifaxan), but you can't get any medicine without a doctor's prescription, and that usually requires a visit. 

The fact that only part of your pouch is inflamed might mean you have ischemic pouchitis. That's caused by a poor blood supply to part of the pouch. Since you have had good results when you were able to treat your pouchitis with medication, your biggest problem seems to be inadequate health care. Perhaps there are free (or low cost) clinics you could check out?

When you say the bottom half of your pouch are you sure your doctor was not talking about the rectal cuff? This is the bottom segment where the pouch connects and is rectal tissue. Most of us only have a centimeter or two, but some have several inches of retained rectum. This can lead to serious cuffitis/proctitis with a great deal of rectal bleeding. Even if you have a short cuff (1-2 cm) there can be severe cuffitis with bleeding. Mesalamine (Canasa) or hydrocortisone suppositories are usually prescribed. 

Unfortunately, you need serious treatment for a serious problem. Supplements won't do it.

Jan

Who did the scope?  Can you call back that office for refills? Hydrocortisone suppositories are inexpensive compared to others. You could also ask for samples of those as well. My GI had sample Canasa suppositories when I first tried. These are very expensive but if you could get samples to see if they help then you might figure out if your rectal cuff is the problem.  Since the antibiotics helped maybe they could give you a prescription for a generic antibiotic too. I feel for you as I went thru 5 years of hell with mine before I had it removed. I am not saying you need your's removed. 

Thanks for the replies. My specialist has put me on 40mg Prednisone. See if that helps. 

I have around 1 cm cuff left behind. But it is literally the bottom 50% of the pouch which is terribly inflamed and bloody. Horrendous. 

I have been on the steroids for a week and it seems to have made the bleeding worse, or more frequent thus far. Hopefully will improve.

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