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Help? Can patients with Crohn's have their ileostomy reversed?

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Crohn's Disease
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Posted 10/28/2008 8:11 PM (GMT 0)
I'm a 32 year old male and I'm recovering from my colectomy surgery performed on 9/2/08.  I was initially diagnosed with ulcerative colitis roughly 17 years ago and at that time, only a small portion of my colon was affected.  For the most part, I had always responded well to medication and remained symptom free for much of this time.  At the end of August, I was hospitalized because I had a major flare up that would not respond to steroids.  After being in the hospital for 5 days, Drs. determined that I had air in my abdomen and thought that I must have perforations in my colon (I did, 8 in total).  I was taken immediately to the OR where they removed my entire colon but left my rectum behind.  Prior to hospitalization, I developed a fistula and abscess.  Because of this, my current Drs. questioned the initial diagnosis of UC and had the prometheus test done.  I saw my surgeon today and he told me that I have Crohn's disease rather than UC.  This news was overwhelming, to say the least.

That being said, I was meeting with him to talk about a reversal or takedown surgery.  Prior to hospitalization, a flexible sig showed that the rectum was affected as well.  If I'm diagnosed with Crohn's, doesn't this prohibit me from having the reversal?  If the rectum is affected, would he remove the rectum and connect the small intestine to the anus?  I'm really confused because everything I read says patients with Crohn's should not have the take down performed but my surgeon feels I'm still a candidate for the surgery and doesn't expect me to have to live with my ileostomy permanently.  Has anyone with Crohn's that had their rectum removed (sorry, forgot the technical term) had the reversal surgery performed?  Any help or insight with this would be greatly appreciated.  Thank you for your help with this.

Posted 10/28/2008 11:37 PM (GMT 0)
Hi I know of someone who did but did not have all the colon removed. If your surgeon says you can then He must know what he is talking about. Let us know how it goes. Are they going to let the rectal area rest for awhile? lol gali
Posted 10/28/2008 11:46 PM (GMT 0)
Wow, that is alot of news for you to take in.   Do you have a teaching hospital around.  I know when I wanted a second opinion I went to the University made sure what I was being told was correct.  This is a big decision for you.  Wish you the best!

Posted 10/29/2008 2:05 AM (GMT 0)

Thank you for the responses you too.  I really appreciate it.  My head has been swimming since my appointment this morning. 

Sorry my response is so long, but yes, I am seeing a surgeon at a University hospital.  They have a major cancer center and perform a lot of collectomies yearly for patients with UC that develop colon cancer so you're correct, I should have faith in my surgeon.  I'm scheduled for a flexible sig January 15th where he'll look at the rectum as well as the small intestine through my stoma and then schedule the takedown after that as long as the small intestine is ok.  I've never had ulcers in this intestine which is why I thought I had UC rather than Crohn's. 

I appreciate the suggestion to wait awhile before having the surgery.  I'm sure my rectum will have to be removed as my rectal stump "blew out" after my first collectomy surgery while I was in the hospital and I had to be rushed into the OR for round two of abdominal flushing.  Because of this, I am somewhat worried about having the reversal surgery, assuming it involves removal of the rectum, but I would perfer not to live with this ileostomy pouch! 

I'll continue to post on this site as I learn more.  I may be wrong, but it seems like there may be patients with Crohn's that could be given the option of having this surgery but often aren't (that's the feeling I got from doing research on the web).

Thanks again, J (colitis or crohn's?)

Posted 10/29/2008 2:07 AM (GMT 0)
"You too" should be you two - gachrons and Crohn'snme
Posted 10/29/2008 2:13 AM (GMT 0)
I have asked my surgeon to take out my colon because that is where my disease is and my fistula and abscess problems, but he won't unless there are absolutely no other options left. The reason being is that the disease will just come back farther up, and you only have so much intestine. He's right.
Posted 10/29/2008 2:21 AM (GMT 0)
I just had a total colectomy (10/10/08), with rectum left intact, and a temporary ileostomy.

I too started with UC, then had a promethius test which came back Crohn's. All of my disease remained in my colon, confirmed by upper endoscopy, as well as the pill cam test.

I am treated by the GI who created the promethius test, Dr. Targan at Cedars-Sinai in Los Angeles, and he stands by my Crohn's diagnosis despite my clinical presentation. Interestingly, my surgeon, who works with Targan at the IBD research center, disagrees with the diagnosis. He recently submitted a journal article which has been accepted that proposes a new category of diagnosis for folks like us: he feels that it is UC which presents similar to Crohn's. According to his research, the surgery will cure my disease, and the disease will not come back in other organs.

So, to my surprise, (as I was prepared for a permanent ileostomy, as I thought that was the standard treatment if you had your colon removed and a Crohn's diagnosis) he recommended a j-pouch, and feels confident that I will not have future recurrence of disease.

Unfortunately, due to my long-term prednisone dependence, it has to be a 3 part surgery instead of 2 as he had hoped. The second surgery will be takedown of the ileostomy, formation of the pouch, and then another ileostomy. The third surgery will hopefully be a successful reversal.

Sorry for the long post! My surgeon is a leading expert, who does A LOT of surgeries, and I trust him. Sounds like a common theme, since you are hearing it from a place where they do a lot of surgeries too. You are in good hands!
Posted 10/29/2008 2:23 AM (GMT 0)
Oh, forgot to add: my rectum is not in too bad of shape. Not sure what the surgeon's recommendation would be if it was.
Posted 10/29/2008 2:26 AM (GMT 0)
I guess I don't understand what the risk would be in re-attaching. If the disease came back couldn't they just unattach and hook you back up to the bag? Obviously I don't know much about this. Welcome though!
Posted 10/29/2008 3:41 AM (GMT 0)
Pibbin- thanks for the post. Glad to hear you are moving forward with your treatment. My surgeon had mentioned that I may have the newly diagnosed "indeterminate" disease (e.g., not completely clear if it's colitis or crohn's) but once I saw the results from the prometheus test, I was pretty much floored. I'm glad to hear I'm in good hands and that others still disagree on exact diagnoses. I appreciate your response. It's kind of eery. We may have been in the hospital at the same time. I was hoping to be in for just a few days to get my UC under control but ended up hanging out for three weeks. I'm in the process of weaning myself off prednisone and will be monitoring the number of times I empty my ileostomy bag daily to see if I have an increase which would then further suggest that I have Crohn's prior to my flex sig.

FitzyK23- To answer your question, I have two surgical teams- the team that performed my collectomy and the one that would do the reversal. The team that did my collectomy is a trauma surgery group. I have seen them twice over the last 5 weeks since I was released from the hospital. They monitor the healing of my wound. Unfortunately, my colon was removed during an emergency procedure as my colitis or crohn's disease lead to the perforation of my colon and I developed peritonitis. To make matters worse, the staple used to close my rectum blew out and I developed another round of infection roughly five days after the first surgery causing me a second trip to the ER. Because of these infections, I'm healing "from the inside out". To start, my wound post surgery was 45 cm long, by 7.5 cm wide, by 8 cm deep. They sutured the abdominal wall, but not the skin. I've spent the last 5 weeks eating like crazy trying to get the wound to fill in (this is the only good thing about prednisone, increased appetite). They told me that reversal surgeries aren't performed in patients with Crohn's because the rectum is diseased and isn't strong enough to hold the small intestine following reversal.

Today, I met with the surgeon that is going to perform the reversal and he didn't seem too worried with my results from the prometheus test stating that I have Crohn's. My fear is not so much having the reversal and potentially having a permanent illeostomy, my concern is if there are future complications, e.g., I end up with peritonitis because something lets loose. If this happens, then I'll be looking at another 8 weeks of wound healing. I was released from the hospital September 22nd and I don't think I'll be able to return to work until my wound is completely healed, which will be around the beginning of December. My boss is cool, but I don't know how cool he is. Hopefully, I won't have to find out because things will be fine. Thanks for your question.
Posted 10/29/2008 3:53 AM (GMT 0)
Makes so much more sense now. Thank you. If you are eligible, make sure you file for FMLA - (this is a federal law but many states have their own versions that may be even more generous. At a minimum if you have been at a job more than 1 year and they have 50 more employees you are entitled to 12 months leave due to your illness. You can google it.
Posted 10/29/2008 4:26 AM (GMT 0)
hey C o C. i dont see why not either. this probably would be a good time for some rest of the rectum area as well as some treatment like with steroid foams etc.. and letting it try to heal up while its disconected. goos luck and keep usposted. i would think though thta it should be several months before they try to reconnect things anyway to let you heal from the first surgery.
Posted 10/29/2008 2:57 PM (GMT 0)
Wow, C o C, you have been through the wringer! So sorry for all the complications.

I was hospitalized in late August for 2 weeks for a UC/Crohn's flare, which is when I made my decision for surgery. Then I had a month to interview surgeons, and the one I chose put me on his rush schedule so that I didn't crash and have out of control flare up again prior to surgery.

My surgery was laparoscopic, and he was able to use my C-section scar, so I was pleased. My surgeon did not seem phased by the idea that my rectum may not be in great shape, he is insistent that a j-pouch is still possible. I must have 3 months between the first and second surgery, to wean off the prednisone (like you), and to allow my body to heal. He wasn't able to fashion the pouch as planned during the first surgery, b/c he said it was so fried from the prednisone that it was too delicate for him to attempt. After the second surgery he plans 8 weeks before surgery number 3.

Hang in there, and definitely check out Family Medical Leave as Fitzy suggested. But to my knowledge it allows you 12 weeks, not 12 months.
Posted 10/29/2008 3:38 PM (GMT 0)
Thanks for all the help everyone. It most certaintly has been helpful and has made me feel much better, most importantly, more positive about things moving forward from here. I can't imagine that I'll have anymore surgeries until atleast February of 09 because of my surgeon's schedule but after reading your posts, it sounds like that's a good thing. Thanks again! I'll let everyone know how things are going. Pibbin, good luck with your next surgery- J (c.o.c.)
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