Hi - looking at a potential small bowel resectioning for Crohn's, advice welcomed!

[Dave-in-Michigan]

Hi everyone,

My name is Dave. I'm a 31 year old male that works in the Detroit auto industry and was first diagnosed with Crohn's in July, 2010. My doctor at that time put me on Entocort EC (9 mg / day) and Asacol HD (too much to remember the amount!). Remission lasted until November, 2011 when I had another flare up. At that time, my new doctor put me on Imuran (50 mg / day) and Humira (40 mL / every other week). I am still continuing that regimen but experienced another flare up late last month (August, 2012). After three days in the hospital, I was put on a decreasing dose of Prednisone (40 mg / 1 week, 30 mg / 1 week, 20 mg / 1 week and so on). Once I reached the 20 mg dose, the pain started to comeback and I'm temporarily at a higher dose as of today. My GI doctor, at my post hospital follow up visit, is now recommending a small bowel resectioning, specifically in the area of the terminal ileum. I have scheduled a barium X-ray for tomorrow and two surgical consultations for next week. Frankly, everything I've read about this surgery scares me. I fear that once they are in there, things wouldn't be so simple as the doctor is saying now and I'd end up with an ileostomy. I would love to hear from anyone that has gone through these surgeries to see if they did work, how much relief have you experienced, and how long you were recovering. At the end of the day, was it worth it? Thanks for reading my story and I look forward to interacting with everyone on the forum.

Dave

 

[Ckt]

Hi Dave!surgery is always a formidable undertaking that's for sure.ive been through 6 bowel resections and 10 abdominal surgeries related to crohns. I didn't really have a choice on most of the bowel resections as they were emergent for complete obstructions due to adhesions(scarring outside of the bowel)and a ruptured appendix.
My surgeries for the most part went through uncomplicated except for once when I had an absess following one of them requiring it to be reopened and packed. The surgeries DID help with my symptoms and pain for a good while. There was about 2 years between my last bowel resection and my surgery in December 2011 for an obstruction that needed no resection just cut down of adhesions and freeing up loops of bowel.
If this is your first surgery, I would ask if it's possible to get a aparoscopy instead of a full open belly laparotomy research shows that this cuts done on adhesion formation and also limits the time of recovery. It's worth asking the surgeons if this is a possibility and also, new techniques involving robotic assisted surgeries also cuts down on adhesions forming.
I actually did really well post op besides having the absess. It could also give you such a better quality of life for a good long while.
I have also found that having an epidural patient controlled analgesic device helped immensely with pain and recovery. I was able to get up and walking so much easier which got things in my bowel moving. My pain was bett controlled with less side effects. I also had other medicine for break through pain and having the epidural doesn't mean you don't get general anesthesia. You do. Just not as much so the chances of getting sick and throwing up due to anesthesia are greatly reduced as well.
I hope that helps you a bit. The gold standard now is to save as much bowel as possible so having doctors say you need a resection probably means that you really do.depending on where the resection is and how much they remove dictates the amount of life altering sequelae that occurs like chronic diarrhea, malabsorption of vitamins and minerals,etc. that usually only happens after a significant part of small bowel, particularly the terminal ileum, is removed.
Please keep us updated on how everything goes!surgery,although not curative for us chronnies can really improve the quality of life for us!

 

[Angrybird]

Hello Dave and welcome to the forum

I take it that your docs have confirmed a narrowing due to scar tissue? I had my first resection last year and it was a lot better than I thought it would be. The discomfort from the op was a lot easier to deal with compared to the pain of the stricture I had. It was done via key hole surgery so I ony had small incesions and I was back to work 6 weeks after the op.

I do hope all goes well for you hun, pls keep us updated on how things are going.

AB
xx

 

[Dave-in-Michigan]

Hi AB,

A CT scan showed some narrowing a few weeks ago and the docs are planning a barium X-ray for tomorrow in hopes of seeing how much of the overall length is narrowed. Then they will go from there.

Dave

 

[Jennifer]

My story is kind of long so I'm not gonna re-post the whole thing. If you want you can read my success story here: http://www.crohnsforum.com/showthread.php?t=19406

Basically I've been in remission ever since my surgery 13 years ago. Everyone is told that a stoma is a possibility but its really not common. Good luck with the surgery! Hopefully you'll go straight into remission and beat my record (an ongoing one so you've got some catching up to do).