Community Forum

My husband is in the hospital post colectomy as I write this. This has been an emotional roller coaster. My husband has gone through a lot. You can read the basic story that brought him to surgery at www.scottypoopoo.info.
Scott has surgery on Friday. Up until we where in pre-op getting ready to go into surgery we thought scott was going to have a j-pouch. He has Chrohn's disease and has has had only a couple times ileum involvment. My husband did NOT want a ileostomy bag at all cost and was willing to take a risk with the j-pouch. So the surgeon agreed that if his rectum was in good condition he would try an ileorectal anastomosis (connect his small intestine to his rectum. Two days post op he was up and had a massive bleed that put him in ICU. He was VERY healthy when he went in and that is the one thing that has really helped him through this surgery. (Before the surgery he kept saying he felt so healthy it is hard to have surgery when you are healthy) He was very anemic but avoided a transfusion. Now he is on a liquid diet 5 days into his surgery and he is loosing massive amount of fluids including his iv fluids with diahreaah. His urine output is really bad and he is getting dehydrated. I am concerned because he has no bowl control. As he is sitting there it just comes out. No warning, just lots of fluids. The question I have is why an I not finding anything on the internet about this procedure. You might ask why hasn't the dr answered these questions, he said everyone is different and doesn't seem to know. I know my husband does not want a ileostomy but he also doesn't want to have to wear a diaper either. At least with the ileostomy he can change it. If anyone has any info I would love any advice I can get.
Jodi (Scotts wife)

 Reply posted for scottswife.

I had a colectomy and illeostomy in Feb for Crohn's disease.  I was advised by 2 surgeons that Crohn's patients were not candidates for the J-pouch since the Crohn's can be anywhere in the GI tract, and there is usually rectal involvement, which would lead to a bad outcome for bowel control. 

I was worried about the procedure, but feel 100% better; have control; go to the bathroom on my schedule, not my colons; the bag changes are not a big issue, but it does take some time to get confident with the body image. 

No one wants a bag, but the life you get back far outweighs the negatives in my opinion. 

Good luck to you and your husband. 

 Reply posted for scottswife.

I have a Colostomy, I have had Crohns for 23 years and over a year ago, I had my rectum and anus removed.  Getting a Colostomy was alway sorta being considered, but it go to the point after 8 or so operations, Remicade and Imuran complelely stopped working.  I have nothing be great things so say about getting the ostomy bag.  The more you learn about it, I was far less intimidated.  As a matter of fact it not only has made me feel 10 times better, finnaly, but after you get used to it, its such a noraml routine. its no differant then brushing your teeth.  I can start to play ice hockey again, and am trying my best to get back into police work.  So you can be just as active, it has allot of benifits, such as going on a road trip, dont have to worry about disgusting bathrooms.  Hope this advise is benificail, take care.

 Reply posted for wildcat.

Hello, I have crohns and a bag on my lower right side, They have both been there since I was 15 years old and Iam 48 this year. Some of my best friends for over 20 years or more never new that I had it. I only began telling them about it recently because I recently needed another surgey and was stuck in the hospital for 4 months. Im from Iowa and had my sugery at the Mayo clinic Methodist in Rochester. This was my 4th surgery and my body just would not cooperate and let me out of there to go home. When I FINALLY got out I decided just to tell them everthing, they were amazed that I wore a bag. It"s honestly not that bad.

 Reply posted for scottswife.

So he did have the J-pouch?? sometimes it takes awhile for the body to get used to the "new connection" and it is very common to have freg bowel movements-I have spoken to ppl who have 20/day- and some who have had problems with incontinence....hopefully this will get better- as his body adjusts