Permanent Ileostomy Surgery: Anyone have any regrets?

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New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 12/10/2008 5:18 PM (GMT -6)   
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.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 12/10/2008 7:54 PM (GMT -6)   

I had active Crohn's for 7 years in my rectum and descending colon and tried every medicine available, so I understand what you're going through. I did not want to have surgery, but my colon was also in such bad shape that I had to do something.

I started out by getting a temporary ileostomy and kept the colon and rectum in. That was a good first step for me, since I could try it out, knowing that it was reversible. Well, much to my surprise, I really liked the freedom it gave me. I never had to run to the bathroom anymore, and I could finally sleep through the night.

Eight months later, I started bleeding from the rectum, so I had my colon and rectum removed. I was out of the hospital in four days, so it wasn't as bad as I thought it was going to be. It took about 9 months for the rectum wound finally closed up, but that was not a big deal.

Bottom line... I have no regrets. I am completely Crohn's-free and medicine-free and haven't felt this great in years. I wish I would have done it much sooner.

Good luck with your decision,

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/10/2008 9:36 PM (GMT -6)   
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!

New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 12/11/2008 7:20 AM (GMT -6)   
Thanks for the response. Would like to hear from anyone else that would like to share. One other question that came to me last night that I'd like to ask. Did anyone experience chronic arthrytic joint paints prior to an ileostomy and did it go away (or minimize significantly) after the surgery? I have what they refer to as crohn's arthritis and it is real bad in my needs. It fluctuates and gets wose with flare-ups and is almost non-existent when things are fine. So I was curious on that.

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 12/11/2008 11:04 AM (GMT -6)   
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.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 12/13/2008 9:15 AM (GMT -6)   
Spindy--I did respond to your linked post...but here's some more colon and rectum were in terrible shape! I was living hour to hour making sure I didn't have accidents of all kinds and after a small blockage (I think it was 9 years ago) I had a resection which led to a temp ostomy. I wasn't thrilled, but I did feel better. Well I had it reversed and went back to the old miserable life. Many months later and went back to my Doc and he agreed to go back to a loop ileo...that was my best decision and for the longest time my colon/rectum responded to the rest! After several years, I started seeing more rectal problems and it just got to the point that NO medication was helping. It was at that point that I had my proctocolectomy (Feb 08) and I haven't looked back!! I did have a small complication in August and had to be hospitalized but it was no big deal and here I am...feeling GREAT!!

I haven't been on any of my old Crohn's meds since February (although I was on antibiotics from my complication in August) and cannot believe how much better I feel. I don't have any of my arthritis pains anymore and my joints don't ache like they used to.

Now all that being said, I know that my surgery wasn't a CURE for my Crohn's but it was a risk I was willing to take. My small intestine have been very quiet and I am hoping that they stay that way!! The percentage gets smaller every year that I could have problems there...

I am a very active person...I travel with my family and spend many hours with my daughter and her horse (which usually means NO bathroom to speak of!!!) and I can control my output by what I eat/drink beforehand so I don't have problems...I also workout a few times a week and I even just started riding my horse (doc made me wait until my skin had time to toughen up) and it was the BEST feeling in the world...

Good luck with your decision and ask away if you have more questions!!

Regular Member

Date Joined Dec 2008
Total Posts : 91
   Posted 12/13/2008 9:16 PM (GMT -6)   
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...

Regular Member

Date Joined Apr 2008
Total Posts : 63
   Posted 12/14/2008 2:24 PM (GMT -6)   
Not regrets whatsoever. I was housebound the 6-12 months prior to exhausting all rx options. I had experience arthritis that would only respond to pred.

I am now 6 months post op, on no meds, back in shape and working and working out. Like most everyone else, I only wish I had pursued surgery sooner.
55 yo male
First UC flare at age 49
All medical approaches failed (including Humira) and opted for total colectomy on 6/17/08. Permanent Ileostomy

Regular Member

Date Joined Feb 2007
Total Posts : 420
   Posted 12/14/2008 2:40 PM (GMT -6)   
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.
If at first you do not succeed, then skydiving is surely not meant for you.

Jo - UC, total colectomy and ileostomy on August 24, 2007. Step 2 & ileostomy switched to left side - May 27, 2008, and take down August 8, 2008. Gallbladder removed December 5, 2008. LIFE IS GOOD.

New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 12/14/2008 2:53 PM (GMT -6)   
Thanks for all the input from everyone. I'm still struggling with my decision and have a few more appts before I need to make a final decision. At this point I'm probably leaning better than 80% to the surgery rather than trying more meds that may or may not work. People I've talked with have told me I should consider the new trial drub (IL12), but I don't even know if I'm a candidate for that - then you don't know if you're getting the real thing or the placebo. I haven't heard a negative ileostomy response yet and everyone seems quite happy and comfortable with it. I'll post again in early January once I have completed all my appts to let everyone know the final decision. Thanks again for all the input.
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