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Terminal Ileum - Colon Resection Surgery

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Crohn's Disease
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Posted 12/23/2011 12:08 AM (GMT 0)
I have had Chron's for about 12 years and have been putting of surgery as long as possible.  I just started getting treatment with Remicade and now Humira about 3 years ago.  From what i am told the affected area is about 4 cm long and occupies the very lower part of the terminal ileum and the top of the colon.  It has been strongly recommended to me by two doctors to get the resection.  I am sure people on this board have had this type of surgery and i am looking for any advice anyone can provide about what i should do, how i can prepare, what i am in for after surgery, etc... Thank you all in advance.  This board is great. 
Posted 12/23/2011 3:04 AM (GMT 0)
Hi gapman. Welcome to HealingWell. I had an ileocolectomy 4+ years ago. I chose to have the surgery because I wanted to enjoy life more than I was able to - with a stricture, scar tissue, whatever it was, I was in pain after eating and was up a good part of every night in pain. I didn't realize how crappy I really felt until I had the surgery and life became much more normal. I was in the hospital 3 days after surgery, never was really in a lot of pain, except when I came home and had so much diarrhea that it became excrutiating to have a bm. So, I would recommend that you take it very easy on the gut after surgery and add foods gradually. 4+ years out, I recently had a colonoscopy that showed ulcers at the anastamosis site. I have an appt tomorrow with my GI - I have to decide what meds I want to take now. I was on Pentasa for about 1 year after surgery, then bumped up to Imuran. Now, it will be either a higher dose of Imuran and/or one of the biologicals. I highly recommend the surgery. Life has been great these past 4 years and I plan on keeping it that way! My advice - consider getting the bad stuff cut out, make sure you get on a maintenance medication after surgery, ask your doctor to prescribe questran, if indicated (best drug ever) and feel well!! ~SB

Post Edited (ski bum) : 12/22/2011 8:09:24 PM (GMT-7)

Posted 12/23/2011 3:37 PM (GMT 0)
My first resection was an emergency, so you are lucky to have a planned resection. If you are able to do it laproscopically you will do pretty good. I had two open resections. The hospital stay is shorter and the recovery a little faster. It still is major surgery so it will hurt some afterwards, but they give good pain meds for it. You should try to walk as much as possible as this will help your bowels to wake up. You will have some explosive diarrhea at first, but for most (not all) this will get better as your bowels adjust to the changes. As for diet you should stay on a softer blander diet at first until things heal up in there. Slowly work up to a more normal diet. I did find that somethings no longer agree with me afterwards, so you will have to find your new normal. Do as stripey suggested and make sure you get back on maintenance meds afterwards so you don't have to do a repeat surgery anytime soon. I had a doc tell me after my first surgery I no longer need meds, and that was a big mistake. I ended up needing another one only 3 years later. So do get back on your meds. I hope your surgery leads to a long long remission. Good luck to you!
Posted 12/24/2011 5:02 AM (GMT 0)
Hi Gapman,

Every situation is different, but I can tell you about my daughter who has Crohn's Disease and had surgery at the terminal illeum in February, 2005.  She had 3 flares in 18 months and was tired of being hospitalized with obstructions and not being able to live the kind of life she wanted to live.  She decided on surgery and, in her case, it gave her back her life.  She has been on Immuran for a maintenance drug since the surgery.  Her colonoscopy in 2006 was perfect.  Even though she felt good, her colonoscopy this year showed some inflamation so her dose of Immuran has been raised.

She had laprascopic surgery and spent 5 days in the hospital.  She was encouraged to walk around the day after surgery.  She only took pain medication for one day after returning home from the surgery.

Good luck with your decision.

Debbie

Posted 12/25/2011 1:21 AM (GMT 0)
If you can get your disease activity into remission or at least quieted down as much as possible prior to scheduling your resection I firmly believe that it increases your chances of a long(er) remission.

I was fortunate that I spent 6 weeks in hospital on IVs and an NG tube, completely resting my gut prior to my resection (I had obstructed and they said perforated - I'm not sure I buy the perforation tale). I was blessed w/a 20 year remission after that resection and firmly believe it was due to no disease activity at the time of the reseciton.
Posted 12/28/2011 9:52 PM (GMT 0)
Thank you all for your great advice.  Looks like i am going to take the plunge in a few weeks.  Any more stories or advice you have on how to deal with this surgery and what to expect helps greatly.  I am on Humira now and that drug has been awesome.  My joints were really bad before the Humira and Remicade stopped working.  I plan on staying on the Humira as my maintenance drug into the future.  I have to for my joints.  I figure they will not get better with the surgery. 
Posted 12/29/2011 3:29 AM (GMT 0)
Keep us updated I would love to know how it goes as at some point I will probably have to have a similar surgery. Good Luck!!!
Posted 1/5/2012 9:01 PM (GMT 0)
gapman, you could check the 2nd link in my signature for a lot of good tips that were shared by folks on this very topic a couple of months ago. The day after surgery was the worst for me, but every day after that gets better & better. Within a day or two of being home, I already felt better than I had felt prior to my surgery. Good luck!
Posted 1/6/2012 9:29 PM (GMT 0)
Hi,

I had my terminal ileum and right side of the colon taken out 5 years ago. Surgery was done laparoscopically and i was out on the 4th day. Pain wise on a scale of 10 it was 0. No pain whatsoever. Even when i got back home unless i coughed or laughed or sneezed. I did take some meds at home but can't remember which ones. The day of the surgery i got up to go to the washroom on my own. Again no pain.

Back home i lived on chicken soup with bread for an entire month.

But when i finally stepped out, which by the way was in the middle of winter, just walking to the bus stop would tire me. And i felt that tiredness still 3 months later. But slowly went away.

The surgery was also long due for many years before i actually agreed. And although i've been feeling great ever since the only major downside is diarrhea. Sometimes i'm ok but sometimes 3-4 times max per day. So i have to be careful if i'm gonna be going out with friends or eating out at restaurants. I take loperamide before hand.

All the best and hope things work out fine for you :)

Posted 2/8/2014 8:36 PM (GMT 0)
Hi to all I had small-bowel reception on the 10/12/2013
For Crohn's disease strictures 1 meter of bowel removed
I had open surgery
I am getting severe abdominal pain in the right Side now
Cannot believe The crohn's' has came back so quick
Is this normal?


Diagnose in 2006 with Crohn's disease
Thanks
Posted 2/8/2014 11:24 PM (GMT 0)
Essexboys - welcome to Healing Well! You posted on a somewhat older thread. I am concerned that others may not see it. I am going to start you a thread of your own. Then you will be able to check both places for replies.
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