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New to Crohn's at 55 - ? colostomy reversal

Mon, January 27, 2014 9:49 PM

My name is Susan... I was diagnosed with Crohn's disease this past summer at the age of 55. I have no history of any GI issues. My introduction to this disease was in June with sudden onset of bloody diarrhea 20+ times a day. I was fortunate to find a wonderful GI doctor who diagnosed me by early July, however, I am hypersensitive to steroids and became gravely ill and severely anemic by the middle of July due to these drugs and continuous bleeding. I experienced a perforated bowel with peritonitis and had bowel resection with a colostomy. 15 units of blood, TPN, and 3 hospitals later, I finally improved enough to go home at the end of August. I am getting Remicade infusions and am now in remission. My question now is whether to have the colostomy reversed or leave well enough alone. From what I have read, and my brief experience with Crohn's before the bowel perforation and colostomy, is that I may spend my life in the bathroom. Any opinions?

namaste57
Joined Oct 10, 2013

Tue, March 11, 2014 4:58 PM

Reply posted for namaste57.

Hi Susan,

I am not sure I can give you the response you are looking for but I will try. I was diagnosed with UC 5 1/2 years ago. I did not respond/had reactions to all the meds (including Remicade and Humira) and eventually had the total colectomy surgery on 7/30/13. I had a temporary ileostomy for 10 weeks then the take-down surgery on 10/08/13.

My experience with bathroom visits has been pretty decent. With the temporary ileostomy I struggled badly with hydration and weight and was readmitted for critical dehydration. I also lost 35 lbs between the two surgeries and was pretty frail. Because of this I took the full 8 imodium a day.

Since the take-down I have gained back 13 lbs and hardly ever take imodium. I take one occasionally on weekend nights if I have eaten later in the day so I can get a better night of sleep. Other than that I don't take it. I go to the bathroom about 8 times a day. I could take imodium to slow myself down, but I prefer to let my body figure itself out naturally and I am only 5 months post surgery so my body is adjusting all the time.

Unfortunately I have now been told that it is very likely I have crohn's not UC so all may change for me, but I wanted to let you know about my experience with the J-Pouch. If you do decide to go down that path, I have some great tips :)

Good luck.

Laura

laura4164
Joined Jul 31, 2008

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