Hello to all,
I've been reading through the Crohn's forum and am now going through the ostomy forum. For my full story, you can read my original post (link at the bottom of this post). In short, I've had crohn's for 17 years and have been treated with all kinds of meds. It took me years to get off prednisone and I really don't want to go back to it. Although I am functional, I am having lots of problems and have been seeing many doctors at Mayo. I've had three resections and am now considering an Ileostomy.
The doctors still have other medical options they have presented - although they are not sure yet if I should try them given my current condition (which my original post explains). Frankly, I'm getting frustrated with the meds. The surgeon thinks the surgery "may" be a good option for me, the GI doc is leaning towards other meds and possible trials that are upcoming. The surgeon said my colon is crappy shape (no pun intended) all the way to the rectum from the descending colon, the rest is inflammed, but not as bad, so no J-pouch option for me, the whole thing would have to go.
I know the choice is ultimately mine to make, but not an easy one. I'm going through the same anxiety everyone else faced when considering a permanent ileostomy. That's the direction I'm leaning, but I would like to hear from others that have had it done. For those that had the option and did it (even those that did not), any regrets of doing it? I've heard so many stories of how the quality of life improved after having one. With my crohn's, the good thing is that it has never been present in my small bowel - just the large. But that doesn't mean it wouldn't show there in the future.
I can probably live without and continue meds, but then I would be putting off the inevitable. I go probably go a few years without, but suspect I'll eventually have to do it and I don't want it to turn into an emergency situation like my last resection did.
I appreciate any input anyone has about living with a permanent ileostomy and if any regrets. Also curious for those in the business environment that hold conference meetings, travel, and do presentations or training, what has their experience been with business attire and noticibility by others as well as comfort.
I'll continue to search and review posts in this forum for information, but thought it best to put my own out here. Thanks in advance for sharing. I'm glad I discovered this forum - its a great source of information sharing.