Terminal Ileum Resection

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New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 1/7/2008 8:31 AM (GMT -7)   

I have had Crohn's disease for 12 years. The disease has remained localized in the terminal ileum the whole time, but it fistulized this year from the terminal ileum to the psoas muscle. My doctors want to resect a foot of intestine including the terminal ileum and part of the colon. They said I could potentially manage the area with medication, but surgery seems more appealing in that it can the fistula will be gone, and I won't have to worry about 'opening' it up again. I have one major question and one minor question.

Major question:

Has anyone had this surgery and NOT had recurrence?

Minor question:

What can I expect after having the ileocecal valve removed? If I am not having diarrhea now, will I start having it? Bad gas? Difficulty controlling when I need to go to the bathroom?

Thank you!

Veteran Member

Date Joined Jan 2003
Total Posts : 1152
   Posted 1/7/2008 9:25 AM (GMT -7)   
I had a resection of the TI almost 8 years ago. I have NOT had disease recurrance. I do however have scar tissue and adhesions that have casued some other minor issues (not intestinal related), well minor to me.

I did not have a D problem b4 surgery and yes, I do have D quite frequently after having valve removed. There are meds to control it, but I'm so use to it now, It doesn't bother me to much. For the first couple years following surgery, I had a problem with urgency and "making it" on time to the potty, but that subsided over the years...... could be diet change as well.

Good luck to you. For me, the surgery was a good desicion, I had SOOO much scar tissue though, so the surgery was the only way for me to get back a normal life without pain.
Good luck to you!


Post Edited (jdiane) : 1/7/2008 11:23:01 AM (GMT-7)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/7/2008 11:17 AM (GMT -7)   

I have had the same surgery myself.  I ended up having to have another resection 3 years later because I became narrow in the reconnection site and was suffering with alot of nausea.  From I hear, most people do well after their resection.  Be sure to take any maintainence meds.

I only had D for a couple months after each surgery.  Some will get alot of D afterwards and others like myself only have it until my intestines wake up and figure out how to work again.  The only time I had the explosive stuff was the first 3 weeks or so after surgery, then it seemed to quiet down.

I wish you a very long remission after your surgery.

God Bless,

Gail *Nanners*

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Regular Member

Date Joined Feb 2007
Total Posts : 136
   Posted 1/7/2008 2:45 PM (GMT -7)   
I had the TI resected 32 years ago, and was in remission - no drugs needed - for 16 years.  The D never went away unless I ate a strict bland diet, which is too regimental for me.  After 16 years of remission the scar tissue caused a stricture and my doc worked for a year with me, on & off Pred before finally having another resection.  Now it's been another 16 years, and I had one partial obstruction in 8/07 that Pred took care of.  I still have a narrowing, but if I eat properly, I can avoid surgery hopefully for a long time.  Good luck - surgery can be a great relief!

Veteran Member

Date Joined Apr 2004
Total Posts : 2284
   Posted 1/7/2008 6:52 PM (GMT -7)   
It is my understanding that with the removal of the ilical (sp), the bile salts build. There is medication to control and bind the salts.
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Dx'd with Crohn's at age 12. Symptoms since age 5.

Learning to live with this Disease rather than be its victim after 36 years.

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 1/7/2008 8:36 PM (GMT -7)   
I don't think it is the loss of the valve that causes bile salt mal-absorption. It is the loss of the terminal ileum, which is where bile acids are reabsorbed into the blood stream. Whether fat mal-absorption diarrhea becomes an issue after resection depends upon how much of the terminal ileum is removed or diseased. The bowel is often cranky after surgery and can take two or three months to settle down. As for what will become your new norm re: bms, You won't know until it happens. Just about everyone has a different experience.

After my first resection, I didn't have problems with fat mal-absorption, but diarrhea began being a feature relatively soon. Turns out the disease was active almost immediately and, because I wasn't receiving the medication needed to get the inflammation under control, eventually the bowel strictured again and 12 years later I had a second resection. My disease returned within three weeks of surgery. Now I am adequately medicated and, I think, in my first sustained remission. I do, however, suffer from fat-malabsorption diarrhea, which I treat by eating a low-fat diet and taking a cholestyramine supplement as needed. Cholestyramine binds with the bile salts and neutralizes them.

The loss of your ileo-cecal valve can complicate things in your gut however. The valve is designed to keep bacteria from the feces in the colon from backing up into the small bowel. With the valve removed, so too is that barrier. Bacterial overgrowth can become an issue for people who've lost the valve. Typically, the biggest problem is excessive gas. I control mine reasonably well by eating plain yoghurt with active cultures every day.

At this stage of your disease, you sound like you might be running out of medical options and surgery is probably necessary. BTW my first surgery was done in 1993 when I had run out of medical options. My stricture had closed my bowel and I was forced to go on tube feeds for six weeks prior to surgery. Although not detected prior to surgery, a fistula was discovered running from just above my stricture to the sigmoid colon. If i had not been quite so determined to hang on until the very end, I might not have developed the fistula and I'd still have my sigmoid colon.

Maybe your fistula is the wake up call, telling you that it's time for a surgical response.

It's a hard decision to make, but many of us on this board have experienced rellef from unrelenting misery and pain after finally going under the knife. Your quality of life will probably be a lot better. Just give yourself plenty of time to recover.

30+ years living with Crohn's.

New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 1/10/2008 10:03 PM (GMT -7)   
Thank you all for your thoughtful responses. I really appreciate the input. I have a specific question for oldchronie: you said that you went for 16 years after the surgery in remission without drugs... does this include immediately following the surgery? i am curious to know more about the details of your recovery, as i have managed my disease primarily with diet, and have done my best to avoid medications....

Regular Member

Date Joined Nov 2007
Total Posts : 165
   Posted 1/11/2008 7:10 AM (GMT -7)   
I had my first resection in July - 14 inches of the terminal ileum. As soon as I was recovered (for the most part) from the surgery, I went back on the only maintenance med that had kept me in remission which was remicade. I had the blockage before I started the remicade as a result of 10+ years of being undiagnosed and untreated. I am currently still on remicade and feeling great. My GI and surgeon have both said that without maintenance meds afterwards, the crohn's is very likely to come back at the site of resection. GOOD LUCK!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks

Veteran Member

Date Joined Feb 2003
Total Posts : 1441
   Posted 1/11/2008 7:30 AM (GMT -7)   

Just wanted to bump this up, since I too will be facing my 1st resection of about 12 inches of my illieum.

I want to continue reading all new posts.

I want to Thank ALL of you for your very honest and informative replies.

Diagnosed Bipolar - August 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 

Veteran Member

Date Joined Jan 2006
Total Posts : 3143
   Posted 1/11/2008 8:06 AM (GMT -7)   
I had 18" at TI resected in 1990.  Mine was emergent so it was not a decision I had to make.  I can't tell you how my CD meds/care changed before and surgery, as I was not diagnosed (or even considered I had a problem) before I ruptured.
I can say that I went from constipation since age 5 to D after the surgery (makes sense, the narrowing was removed).  I went for many years without any major care---1990 to 2002 I only had three flares big enough to put me on prednisone and they were short bouts of pred.  In 2002, I had my first fistula experience.  Other than the fistula and a recent flare due to not taking my meds, I have been in what you could call remission. 
I have issues beyond the TI that have gotten worse over the years, but I would say the surgery was very helpful FOR ME.  I hope this helps those who have to decide on surgery or no, but it is so personal a situation.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

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