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My experience after J pouch and your opinion

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Ostomies
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Posted 8/27/2013 6:08 AM (GMT 0)
Hi. I'm a 16-year old boy from Serbia. I suffered from UC for at least 6 years and found about it less then year ago. Before that my doctors were convicned that i had Conctipation even if i went to bathroom 10 times a day confused .A year ago my stools became full of blood. Blood on start of stool,after stool in stool. We were telling doctors that but they werent listening. I asked for rectal examination which he did and saw a little blood on his finger,he was so afraid and put me right in hospital. I pass through a colonoscopy and through about at least 50 rectoscopy for 4-5 months. I was taking Prednisone,Imuran etc. In first month after medicine my colon was in good shape. I was also in good shape. Had two stools at 8 pm and that was about all. But you can't drink prednisone forever so when they took 10 mg of my perscription the inflammation was back . It was bad and even with taking back more Prednsione it did not help. They tried for about month. Then they said they can no longer wait and that it's time for Colectomy. I was prepared for it and was little sad too,but what can you do thats life.I was told that I will go to bathroom a lot( didn't really care cause I already had like 10 stools or more a day with disease) so I said why not.There wasn't no Ileostoma. My intestine was put down to my anus immidetly. It's been three months now after the surgery. My healing process was very hard cause my wound had a lot of pus in it and it took a month and half after surgery to heal. Now three months later, I go to bathroom like 10-15 times. At certien time of day( not always the same) I have only diarea and other times it's like normal stool but not really. My ass is maybe 2-3 days good,then 5 days it has terrible rash on it and blood comes from it . It's around my anus and stool is provoking it. Can you tell me did anyone have same experinece as me?
Posted 8/27/2013 3:15 PM (GMT 0)
Okay, sounds as if there are a number of things going on. First, are you using any ointments to help with the painful rash on your anus? Talk to a pharmacist; there should be ointments that ileostomy patients use that would help you with the pain and discomfort. In the US there is a cream called Calmoseptine, but I'm not sure if it's available in your country.

Second, are you taking anything to slow your frequency and bulk your stool? Diarrhea drugs can help with the slowing. In the US we have a product called Imodium. If you can find the equivalent you can take up to 8 per day to help with lowering the frequency. As for bulking, try adding powdered fiber like psylium. Ask your pharmacist about this. Use it with half the water that is recommended for colon patients. The consistency of stool will vary with diet. Sugar tends to make things loose, so if you don't like that, avoid anything with sugar in it, even fruit juice.

As for the bleeding, this might be a couple of things. Did your surgeon remove your rectum? This is important to know. If you still have your rectum you might still have UC. In the US the surgery usually involves removing the rectum but leaving 2-3cm of rectal tissue to connect to the anus. This tissue is critical for continence but sometimes jpouch patients find that the small amount of rectal tissue can cause bleeding and inflammation. It's called cuffitis. You can treat cuffitis with UC drugs like enemas or oral pills (not prednisone but 5-ASAs).

I hope this helps.

Sue
Posted 8/27/2013 7:53 PM (GMT 0)
Thanks for some tips. Also my rectum was removed,only tissue that controls when I want to go to bathroom is left. Blood is not coming from my anus it's coming from around it. Rash around it is so irritated that it started to bleed.
Posted 8/27/2013 9:25 PM (GMT 0)
Thanks for the clarification. Yes, you definitely need some ointment for your butt. You might find relief in creams that are made for diaper rash in babies.

Sue
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