To resection my Ileum, or not to resection....

[Vanabanana]

I don't even know where to start with this... I'll give you a run down of my disease story and would appreciate other stories with Crohn's and resection surgeries.

I've known something was wrong for 12 years, but wasn't diagnosed until 7 years ago. I've landed myself in emerg a few times in the last 7 years, but have managed my disease quite well without meds for the last 3+. I've tried Pentasa, Imuran (with no great success), cortosteroids, and most recently Prednisone for 7 weeks. This latest trip to the hospital and Prednisone was the worst. I was in the most pain I'd ever had- unable to eat or pass stool. I was told from my CT in the emerg that I had a fistula, but after the course Pred, it could no longer be located with two ultrasounds.

I feel a lot better than I did this summer, but still have symptoms- rashes, joint pain, stomach pain, constipation etc. I've been given the option to have laparoscopic surgery this Spring to remove the possibly strictured Ileum.

I guess my two questions are:

Anyone ever had a fistula "disappear" after steroids? And
Has anyone elected to have a resection surgery in the hope to avoid taking medications?

 

[kiny]

To cut is not to cure.

People can't make the decisions for you, but I hope you take that into account, people with surgeries are not cured, any bypassing medication is temporary for them. There are people who relapse within weeks of surgery and need to go on medication again.

I have had croh's disease as a child, I have had it for about 12 years now, in the beginning of my crohn's disease I refused to take medication, I refused to believe I was sick, I was in ER more times than I wish to remember, I had been close to dying twice of ruptures, fainted multiple times from bloodloss, woke up once where doctors around me said "you're lucky you're still around", not once did anyone talk about surgery, unless everything else has been tried, surgery should imo not be considered. They did eventually convince me that I could not handle this disease without proper care. Surgery doesn't cure the disease for people, it often leads to other issues, and it doesn't seem like you tried out everything there is to prevent surgery so I don't know why you're considering it instead of treatment.

Also, if you can't live reasonably without considering surgery, there are other options to treat a stricture than simply cutting away part of your intestine. There is balloon endoscopy and strictureplasty, which should be considered before any other major surgery.

 

[Jennifer]

Hi Vanabanana and welcome to the forum!

Feel free to check out other people's surgery stories here: http://www.crohnsforum.com/showthread.php?t=30212

First I'd want to know if I actually needed surgery. We only have so much intestine to work with and since Crohn's is a chronic illness with no known cure, its best to keep as much as you can and use other treatment options and try to keep surgery as more of a last resort. Its very common for Crohn's to pop right back up at the resection site, when just depends on the person.

Fistulas can be healed yet I've never had one before so am not that informed yet I'm not sure if an ultrasound is really the best test for finding/detecting them. I'd want to be sure that was actually gone and have proper testing to show if you do in fact need surgery.