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looking for information about total colectomy with ileorectal anastomosis

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Posted 4/9/2012 6:49 PM (GMT 0)
Hi - I'm new to this group and I'm hoping some of you will take the time to reply to me with your experiences. My son has no motility in his colon at all and has had a cecostomy for about 8 years now. We were hopeful for a while that he would regain some motility at some point and be able to have the cecostomy removed but since there's been very little progress in these 8 years, we're trying to make the decision on whether we should remove his entire colon to allow him to get rid of the cecostomy. He is 14 years old and will be starting high school in the fall and it would be nice for him not to feel like he has to hide his cecostomy during his high school years.
I've been reading the posts on here from people who have been through this surgery and what scares me is how it seems like once you lose your colon, you may be faced with diarrhea many, many times a day. I can't imagine him being faced with that in high school as the whole reason we're considering this is to give him a little freedom and normalcy. His dr did warn me that diarrhea can be a factor, but said that it could be controlled with medicine and that after a while, sometimes the small intestine starts performing the role of the colon and things level out. I don't think it would be a good trade to get rid of the cecostomy but be faced with diarrhea 10 + times a day. Does this happen to everyone when they have a total colectomy with ileorectal anastomosis and lose their entire colon? If so, has it leveled out eventually? We currently flush his cecostomy every 3 days and he has been living fine like that but he's very self conscious about it and if his colon is never going to work, we may as well remove it but if the trade off is constant diarrhea that is going to have him running to the bathroom constantly, that doesn't seem worth it. I would welcome any and all feedback as this is one of the hardest decisions we've ever had to make and I'd love to know how other people are doing that have already been down this road. Thank you!
Posted 4/9/2012 7:01 PM (GMT 0)
I have the ileoanal anastomosis because of UC and I do not have diarrhea. However, since your son has motility problems the results may be different, but I don't think so. My stool is looser, at times, but no where near diarrhea.

Sue
Posted 4/9/2012 7:03 PM (GMT 0)
Thank you Sue. It's reassuring to hear that someone has had it and is not plagued with diarrhea. Do you experience any other difficulties living without a colon?
Posted 4/9/2012 7:17 PM (GMT 0)
The stool coming from the small intestine will necessarily be different than what comes from a healthy colon, which none of us on this forum have. The 10+ bowel movements you are reading about is in the early stage, during the first months after the stoma has been closed and the person is using their jpouch for passing stool. I have been living with a jpouch for exactly 3 weeks today. It is a bit chaotic. I initially had about 15, 16 or even 18 small bowel movements a day, I now have about 10 or 11 and this will continue to reduce, I am told, to an average of 6 to 8 over the next six months.

Most of the jpouch experiences on this forum have been successful and positive, yet each one has been very individual in terms of what happens during these first months. I am taking immodium and tincture of iodine to achieve non-liquid stool. What comes out is either blobs or pieces, if I may be so graphic. I also have to add that I am experiencing some incontinence, but am told this is part of this first stage. Some people have this problem in the beginning and some don't.

So, it is possible that a person could have diarrhea for the first few months, but this will resolve itself.

I would keep talking to people and also get 2nd and 3rd opinions from surgeons who specialize in this procedure.

Posted 4/9/2012 7:27 PM (GMT 0)
Hi B'Dereh
Thanks for your response. I have to admit that I'm not familiar with the term jpouch. I was told my son's small intestine would be hooked up to his rectum so I'm not sure if that includes a jpouch or not? I don't mind your graphic description at all. I'm sure I feel like everyone on this forum does, pooping is part of our daily conversations and nothing can phase me at this point. Aside from my son's issues, I have Crohn's so again, nothing phases me. I just can't figure out what the lesser of the evils is at this point. I'm so afraid to change his current situation to one where he may wind up having to go 10 - 15 times a day. How would a kid be able to handle that with school? I know you don't have an answer, I'm just thinking out loud. Anyway, is a jpouch part of the surgery that everyone has when their entire colon is removed? If so, can you explain what it is?
Posted 4/9/2012 7:32 PM (GMT 0)
I never had diarrhea, even in the beginning.

My life with the ileo anal anastomosis/jpouch has been outstanding! I'm a long distance hiker (100-200 miles) and have hiked and traveled extensively all over the world. No one would know that I was any different. I don't share my jpouch story, and even with sharing hotel rooms, no one has ever thought of me as being different. Life has been very very good and I'm grateful I had the surgery.

Sue
Posted 4/9/2012 7:34 PM (GMT 0)
Thank you, Sue. I wonder why some people have the extreme diarrhea in the beginning and others don't. If I knew he'd follow your footsteps, I'd schedule the surgery for tomorrow!
Posted 4/9/2012 7:43 PM (GMT 0)
Hi kdr,

This is where you need to have conversations with surgeons. I would get very literate about these different procedures before taking action. The jpouch is what most of us here have. It is a pouch made of the end of the small intestine, and it is meant to somewhat assume some of the role of the colon. Obviously nothing is going to replace the colon. Getting a jpouch involves usually two, although in some cases three operations. I have heard of this other procedure, where they attach the small intestine directly without forming it into a jpouch. All I know is that this procedure has less success rate than the jpouch, and that jpouch has become standard procedure when the colon is removed, except when the patient has Crohns.

Here's a link of a jpouch explanation that I found to be alright: http://www.j-pouch.org/illustratedpouch/

Again, I really think you need to consult with a few different experts about what will be the best for your boy's life. I don't know where you are, and I am in Europe, but I would recommend writing an email to Dr. Itzkowitz at Mt. Sinai in NY, and also with someone at the Mayo Clinic in Ohio.

Also, while the entire procedure (whichever) will take some weeks of your son's life, probably he can manage to keep up with school enough so as not to have to repeat an entire semester of high school.
Posted 4/9/2012 7:46 PM (GMT 0)
Hm, just realized you are talking about attaching the small intestine to the rectum. He doesn't have an inflammatory disease so he gets to keep his rectum. With a jpouch, the rectum is removed. So, with a rectum, it may be so that the direct attachment technique is better. I have no idea, so talk to the doctors!
Posted 4/9/2012 7:49 PM (GMT 0)
Because your son will keep his rectum, his frequency should be lower too.
I had a GI tell me that I would have permanent diarrhea. He was wrong. My surgeon gave me
great information on life post surgery and he was right!
Consult with top CR surgeon. What state do you live in?

Sue
Posted 4/9/2012 9:38 PM (GMT 0)
Thanks for your input. He will be keeping his rectum so I guess that's why I didn't know what a jpouch was. There is a small area in his colon that has decent motility, not perfect but decent, but his doctor is advising us to remove it all because the motility is not perfect and we may have to just have a second surgery down the road. His experience with other similar patients is that if the motility isn't totally normal, it's not worth keeping as it can just continue to give him problems. He is having his 4th motility study next Wednesday just to confirm that there is no area worth saving but I don't expect any strong developments in that area since he never has the urge to go. His stool just sits there doing nothing until we inject 800 cc's of saline via his cecostomy, crushed dulcolax and liquid glycerin in it every third day to flush him out. I live in MA and we will have the surgery at Tufts. The surgeon is the head of colorectal surgery so he's supposed to be very good. We haven't met with him yet and I do have a great relationship with his gastroenterologist but I know from past experience that it's so helpful to talk to people who have lived through it. I truly appreciate everyone taking the time to share their information with me. If anyone has more info to share, I'd love to hear it.
Posted 4/9/2012 10:18 PM (GMT 0)
I have a j pouch and I do not have diarrhea. My stools are certainly different from when i had a healthy colon, but they are formed most of the time. If he has the surgery as I understand his small intestine will be attached to his rectum....his stools will be different but not diarrhea. The body is an amazing thing...the small intestines over time will start to absorb more water compensating for the missing colon. Good luck with everything!
Posted 4/9/2012 10:56 PM (GMT 0)
Nice to hear your story ByeBye UC. Thank you for sharing it.
Posted 4/9/2012 11:01 PM (GMT 0)
thank you for your reply B'Dereh and for the link you provided.
SueBear, if you have any recommendations for surgeons in MA, I'd love to hear it.
Posted 4/10/2012 1:12 AM (GMT 0)
The Lahey gets top marks for CR surgeons. Go to www.j-pouch.org and ask for Boston surgeons. You'll get a few recommendations.

Sue
Posted 4/10/2012 4:05 AM (GMT 0)
Hi, I am 25 and 5 months ago I had my entire colon removed due to lack of motility. Of course stools are liquidy at first but after a couple of weeks everything normalized. Now my stools are looser than the average person's but I do not have diarrhea, and can always take my time getting to the bathroom. Bless his heart, your son must be a real trooper!
Posted 4/10/2012 10:19 AM (GMT 0)
hi there are many on here with ileostomies, ileo rectal anastomosis and the like - the only way to find out is to have the operation and see how it goes - everyone is different but if his rectum is working ok then there is every hope of a successful op for him. If it doesnt work out an ileostomy is very discreet unlike the catheter he has now.  However i have heard the small bowel learns to become like the large bowel and slows with time.  how much time is a personal thing and he may need some time off school to adjust.
Posted 4/10/2012 12:07 PM (GMT 0)
Thank you to all who are sharing your stories with me. It's encouraging to hear that people are living their lives fine and I appreciate all of the information.
Posted 4/10/2012 12:15 PM (GMT 0)
I'm also glad to hear that everyone is living fine lives! I'm three weeks out of the jpouch take-down surgery and still having it a bit rough.
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