Ileum Resection

[TBmom]

Hello,
This is my first post here.. I've been reading all the responses and it seams like a lot of really great support happens here.. I am in desperate need right now of support. I am going to be seeing the surgeon Monday because I have been told by my GI that I have to have part of my Ileum /Cecum/Appendix removed.

Back story - I was diagnosed with Crohns 15 years ago.. I was really bad in the beginning went on Steroids/Pentasa.. Was off within a few months.. And have only suffered a handful of 'flares' since..

This time last year I started having this weird pain/uncomfortable feeling on my right side.. Kind of floated between the bottom of my ribs down to under my hip... After lots of testing and year later the doc's believe this pain is due to a fistula that is attached from my Ileum to my appendix. They have also found another fistula attached from my Ileum to some more small bowel a little higher... This was all discovered in Nov/14..

I then heard about this IBD Team at Mount Sinai in Toronto so I got a referal and have been dealing with Dr. Croitoru since Feb/15.. He did all his own testing and with a team of IBD doc's they decided I need to have this surgery... He said my Ileum is so inflames/ulcerated/scar tissued that he couldn't get the colonoscopy scope even a little bit into my Ileum. So I see the surgeon Monday and I am feeling very overwhelmed and anxious!! I have two young kids and it's looking like this is going to happen really soon and I don't want to ruin my families summer...

Right now I have good and bad days.. The good outweigh the bad... My doc said I am partially obstructed and I am in tons of pain when that happens.. He is concerned a full obstruction could happen anytime... I would really love to put this operation off until August.. It's hard not knowing if my body can handle that or not...

Any good suggestions or stories about your experiences would be really helpful..

 

[Clash]

It shouldn't disrupt your whole summer. My son had an ileocecectomy last August. He was in hospital for 4 days would've been shorter but he has issues with his bladder shutting down with anesthesia and pain meds. Surgery was in the morning, he was sitting up that evening and walking that evening. He stopped pain meds the 3rd day and left the hospital on the fourth. He didn't require pain meds once he was home and returned to work the next week. The main limitation is for 6 weeks after surgery you aren't allowed to lift over 10lbs which was a bit aggravating for a teen. And can imagine it would be frustrating with little ones but the risk of full obstruction is really and dangerous if you are having partial obstructions and have stricturing or narrowing. You could possibly ask about Exclusive Entetal Nutrition(EEN) which is a formula only diet until August. That might prevent obstruction but it could also affect your Summer since that is the time for travel, food and fun.

My son did EN(enteral nutrition) with an ng tube he place and removed each day, for weight gain for a long while but he was allowed food as well since he was trying to stuff in calories to gain weight.

 

[TBmom]

Hi Clash, thanks for the tip on EEN.. This is something I could ask the surgeon about Monday..
That's amazing his recovery was so quick!! I really hope the same goes for me.. What about diarrhea afterwards?

Also, I need some good questions for the surgeon... Thanks!

 

[Clash]

He may have had some D after the surgery but in the hospital and at home afterward it wasn't excessive. Now due to his CD being in his small bowel he has always had a normal bm schedule of maybe once a day or every other day. After surgery he had a bm once maybe twice a day.

I would voice my concerns to the GI about having the surgery now. He may feel like you can wait but then again with partial obstructions he may feel it is nothing to play around with. We have several members that have had to have emergency Surgery due to full obstruction and I think you'd rather have your chosen surgeon and schedule as opposed to an emergency situation that can lead to serious issues. My husband's niece had emergency surgery. She had her bowel perforate due to obstruction and this lead to sepsis and weeks in ICU.

I would ask the GI about pain relief methods as there are a few including epidural.

Go ahead and get the schedule as to what he expects after surgery so you can prepare yourself. My son knew ahead of time the surgeon would expect him sitting up at this time, walking by such and such time. I think this had him more mentally prepared.

Walking is so important. It gets the bowels moving and helps in recovery time.

I'm sure others will have more questions that are pertinent before surgery.

 

[Clash]

Oh here's a great thread involving questions to go over with your surgeon

Questions for your Surgeon - Crohn's Disease Forum - Support group and forum for Crohn's Disease, Ulcerative Colitis, and other IBD
http://www.crohnsforum.com/showthread.php?t=27387