You might want to seek a second opinion. I have never heard of Crohn's being diagnosed by just "looking". How does he know it's not ulcerative colitis, the other inflammatory bowel disease? If you have UC you could opt for a j-pouch or a Kock or BCIR pouch. I think you might want to see a GI who is experienced in IBD and get a firm diagnosis before resorting to surgery. I had severe rectal disease, mine was UC.
Hi Sue. I was diagnosed with crohn's in 1993. first it was at the ileum and then jumped down to the rectum/lower colon a few months later. since the inflammation/perianal disease is in the rectum and anus, they cant save it, hence no pull through/temporary ileostomy. they dont want to do an internal pouch since they dont have a lot of success with that for crohn's patients for one reason or another, so you end up with a permanent ileostomy and an external bag.
what exactly is the j-pouch? is that an internal ileostomy? (forgive my ignorance, this whole type of surgery was scary for me on day one back in 1993 that i never educated myself in it. now i have to crash course).
A j-pouch is a false rectum that is made from the small intestine. You are right, this is not recommended surgery for one with Crohn's unless the Crohn's is limited to the colon.
It is a scary thought to have a permanent ostomy, but I think after the initial shock of the surgery wears off and you are on the road to recovery you will realize how much better your quality of life is. The first month of recovery will be the toughest and after that you will notice that with every week you will feel better and better!
I have UC and although my ileostomy is not permanent, at 24 it was a huge decision to have the surgery as I am not married (or even dating) and was worried about how it would affect my appearance. I had the surgery in March and even though I had some fairly serious complications I do not regret having the operation. And I have to live with my ostomy for a lot longer than most people who get reversals because of a blood clot that I developed about one month post-op. So in total I will likely have mine for around 9 months where most people only have theirs for about 3 months before getting a j-pouch.
You cannot see the bag through clothing, and yes you will be able to tuck in your shirts! I can wear clothing that is quite fitted (more so than I think a man would ever wear) and the only reason a person would know I have an ostomy is if I had told them so! It really is no big deal to maintain it either. Once your stoma has stopped shrinking (it can change size for about the first three months) you really only have to change it once a week and without the hassle of measuring it etc.... Do not hesitate to ask your ostomy nurse any questions, they are there to make this process as easy as possible for you. There are no stupid questions.
If you have any questions that you don't wish to ask here, please do not hesitate to email me and I will do my best to answer them for you.