Permanent Ileostomy Surgery: Anyone have any regrets?

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.

https://www.healingwell.com/community/default.aspx?f=17&m=1311376

my regret is that i didnt' do it sooner

i had UC for 8 years, 8 long, wasted years. numerous days spent in the hosptial, even more spent laying around too sick to do anything, months of work lost, just basically no life.
While i was pregnant i was in complete remission i could eat whatever with no problems, and after i had him i went back into a flare and it just kept getting worse and since i had had those 9 months of "regular" life it was even worse. So when he was a little over 1, we were at the beach and i was missing him out at the beach cause i was too sick to go out there i decided i was going for surgery. When i went the dr talked me into tryign remicade, which worked for a little while, but i was always waitingon it to fail. I will admit i didn't try many meds, and i might could have found something else that would have worked, but i didn't want to keep wasting time trying things that MIGHT work, when there was soemthing that i KNEW would work.
I knew surgery was going to be scary and that my life was gonna be sooo different afterwars, but i looked at it this way,
I HATED life the way it was and i KNEW It. And sure i MIGHT hate life afterwards, but there was a big chance i wouldn't hate it. and even if i did hate having the bag, i would be healthy.

So anyway, i opted for hte perm ileo because honestly after 8 years of UC i never wanted to us the batrhoom the normal way again. Also, i didnt want two surgeries or the chance of pouch failure.

So anyway, the surgery wasn't fun, and it was def a little weird waking up with the bag. When i first woke up i saw it and i thought, "What the *(&) have i done???" and then i realized i felt, the only way i can describe it is clean, and i knew it was worth it.

It can be annoying at times, just like anything can. As a general rule though i forget it's even there. noone can see it, and most people don't even know its there.
I have so much more energy and i get to do fun things that i could have never done with UC.

Anyway, YES it's worth it, and NO i dont' regret it!
good luck!

Someone on here had arthritis that went away after surgery. I can't remember his name. Hopefully he'll see this post and will share his experience with you.

I figure that without the operation I'd have been dead in a month or so.. I had blood pressures so low (30/50) and no energy to do anything. Going to work each day was a nightmare, between going to the bathroom every 20 minutes with diarrhea ... vomiting as well... no energy.. I have no idea how Imade it the three months before having surgery...

Also no appetite.. I was afraid to eat because i knew where it was going to be.. The evil prednazone.. and my daily regiment of 5 or 6 other prescriptions, plus suppositories to shove up my butt so medicne gets to the colon even faster.. in the end.. none of it worked.. I recall in September 2007.. one month before my surgery I got up the strength to get on an airplane and go to my 35th high school reunion in Pennsylvania.. It was simply mind over UC and I was determined to go... I was glad to see my old friends but I know I must have looked like death warmed over to someone who hadn't seen me in 5 years. much less 35 yeaars...

3 weeks later i'm heading to the ER and the tech can't find a vein in my arm to put an IV in as they all had collapsed.. I'm sick and no strength and the tech is using my arm like a pin cushion trying to put that needle in it and I'm saying it's not hurting each time she missed ... uuuuughhhhh

I don't have a 2nd thought about the operation.. There are things you will have to learn afterwards. but the bottom line is if the medicine isn't working for UC.. your options become very limited...

Here's a different point of view for you, because I did not opt for the perm ileo! I had UC, and had my colon removed in August 2007, I had an ileosotomy for a year, until my jpouch takedown in August 2008. Although I did choose to try a jpouch, I was not unhappy with my ileostomy. I can say the end ileo is sooo much better than the loop! Because you have Crohn's a jpouch may not be an option, but my point is, even if I ha had to live with my ileo forever, I wouldn't have minded it one bit. I will admit that at first, I went through quite a struggle, trying to phsyically and mentally get used to my new plumbing situation.