Crohn's: Considering an Ostomy... Is It Worth It?

Hi everybody,

First, let me say this is a fantastic site! A WOC nurse led me to you, and I've learned so much from here in the past few days. Maybe too much.

Let me quickly explain my situation: I've been struggling with IBD for years now, been through all the meds, lifestyle changes, alternative therapies, etc., and have only gotten worse. Unlike most IBD patients, I've never known remission. It seems to be worst in my colon - thankfully, I don't have the abdominal pain a lot of Crohn's sufferers do. However, my butt is a mess of fistulae and (if I'm not extremely careful) abscesses. I am constantly fighting off infection. I spend half my day literally running to or on the toilet (often up to 20x a day). And that brings us to the kicker - I am practically incontinent. If I go out, there's a 50/50 chance I'll have an accident even on 5-minute trips.

I am a young man, and my social life pretty much doesn't exist because of this. I rarely leave the house but to run errands. Thank God I can work remotely, or else I don't think I'd be able to support myself at this point.

SO...

The doctors say all that's left is surgery. They want to do another scope to decide their approach, but this will almost certainly result in some form of ostomy - most likely ileostomy.

At this point, I want to let them. I'm so tired of living like I have been. Of course, I realize an ostomy is no picnic either. So here's my question (and I'm surprised I haven't found others asking this - seems not many "preops" find this site, which is a shame!):

Am I nuts for wanting this done?
Can it give me my life back like they say?

Would love to hear from any of you but am especially interested to hear from any ostomates who "opted" for the operation due to similar circumstances. Was it worth it? Any regrets? Anything you wish you knew beforehand?

Thanks in advance!
Matt.

we knew that one day i would end up with a bag we were hoping that it would have hit me in my 50s or 60s but it didnt it got me in my yearly 40s i have had my surgy for two years now and unable to work do to mine own issues of blow out and leaks it no big deal you just have to plan like you aid what a relief if you dont crap yourself one way you might in a different way but there are l;ots of people on this site that you can ask questions and or just vent get it off your chest its free councling here lol good luck and happy health

Thanks for the reply, weewee!  I've got that similar sense of inevitability.  I know, physically speaking, I can hold out a while and not have the operation.  But I do think it's only a matter of time.  And I'm not sure I want to live like this in the meantime.  

And I should mention aside from my large intestine, I am in the best shape of my life.  Realizing there's always the risk of complications, I feel like the risk would be a lot smaller now than it would be if I waited for things to further deteriorate.

But yeah, I'm seeing on this site the distinct possibility that things may not improve so much as just... change due to this operation.  Could end up still spending just as much time in the bathroom.  Could end up still having accidents - they'd just be a little different.  These are definitely outcomes and possibilities I'm going to discuss further with my GI and surgeon.  Don't want to do this if it ends up being a zero-sum proposition (or worse).  But if there's a good chance it can help get me out into the world again, I think I should go for it.


Thanks again and best of luck to you!

I was in a very similar situation, and I chose to have the surgery.  The doctors called it "elective surgery," but I saw no other option.  It is definitely no picnic. For one, dating becomes very difficult/awkward, and there are lots of hassels and the fear of embarassing accidents ....although I haven't had any yet (knock on wood lol).  I  had a lot of complications after surgery--infections, abcesses, skin issues, etc.-- but I still feel that I made the right decision.  In hindsight, it is hard to believe how long I put up with being so sick -- for over a year I could barely leave the house for my doctor's appointents! I guess you forget what healthy feels like after a while....  I also remind myself daily that I would not be dating at all if I had not had this surgery, period. I would not be going out with my friends having fun all the time. I would not be going to school and getting a degree in art. I would not be eating all the foods I love.  So, really, there is no regret here.  
I think every individual situation is unique, and you just have to ask yourself, can i live the rest of my life the way it is right now and be content?  All surgery has risks, but maybe it is worth the risk.

Hi Matt and welcome into the mix here!   Well.....I feel terrible about your situation and soooo many of us on this site read your words and we really, truly understand your situation and how it can disrupt your life....we know of the physical effects and the emotional and psychological effects as well.  You are among friends here dear.   Most of my friends in various situations have discovered that having an ostomy, though not without it's probs, has actually given us more freedom and comfort in life than how it was before the ostomy.  I agree.   I was given my ostomy at the age of ten, I did not have much of a childhood until then, hard to go anywhere, do thing, hard to play with other children or do any of the normal activities if one is needing to stay so close to the bathroom.   After the surgery, that aspect of my life was liberated.  

It's all truly an individual experience but I wish you luck and please do keep us informed as to how you are doing!

Hi Matt

I am sort of in a reverse situation as you ...... my question is to reverse or not to reverse .... and to be honest I am leaning towards keeping my stoma so that I don't have the life you are describing .... personally I would rather leak or have a bag fall off than crap myself!

Rach xx

Mate i was in your situation for sooo long i had part of large bowel removed no pouchy then year later had temp ileostomy then same thing 8 operation this YES U WILL get your life back honesly as i have said i even bunjee jumped no prob just stupidity to bunjee jump for 30th birthday i promise you will have to wait after surgery i thought it would never get better from surgery. ok surgery well i was in agony but there are drugs for that ..Thousands of us crohns suffers never hav remission i didnt but do it YES YES AND HURRY UP DONT WASTE ANOTHER BLOODY DAY I FEEL LIKE I  ME WASTED 15 YEARS OF MY LIFE Having a pouch is not as bad as you think but somtimes freaks me out but i can go to the loo weneva i choose put on weight food is WONDERFUL to start eating again i was so skinny bein female thought i looked people thought i had cancer and or heroin addict bloody lovely hay!!! I had to leave work like so many young people but you are lucky working from home .I got used to feeling sick it was like part of my life appointments was like a job for me ...GO GO GO GO GO GO GO GO FOR IT IF I COULD COME SEE YOU I WOULD GO HOSPITAL AND SEE YOU THROUGH IT WHILE BEIN AN AUSSIE HAVE A BEER OR 10 ASWELL ..YOU READ YOUR POST AND YOU REALLY CAN SEE ITS NOT NORMAL LIFE ITS ACTUALLY SHITT MINE WAS ...PLEASE DO IT
EVERYONE HERE HAVE DIFF PROBS WE ALL DIFFERENT YOUR YOUNG I AM NOW 43 HAD LAST OP 2008 NOT GOOD PAIN WISE BUT EVERYTHING FINE I AM CRAZY ANYWAY ...PLS DO IT THIS SITE I THINK IS HONEST AND WE ALL NEED TO VENT PEOPLE GET IT EVEN WHEN PEOPLE ARE SICK OR WELL WE UNDERSTAND CAUSE NO ONE ELSE HAS A CLUE AND I FIND THATS NORMAL ASWELL...I WILL NAGGGG U DO IT LIFE IS GOOD   MARE

HI...Thought I would weight in here for a moment.... you know you can read alot of horror stories in here about getting an illiostomy and various problems many seem to experience, but if I was to bet on the issue, there are many more that got their life back and prospered both personally and financially, than those who failed.  My experience was With U Colitis... I had maybe 6 attacks ( aprox 3 months each ) between 1974 and 1999... then went 10 years with ZERO symtoms... only to be have my entire lower bowel go to crap in June and July 2009... the options were surgery or going broke experimenting with drugs. I had the illiostomy July 31....since then I have had NO blockadges, maybe 5-8 brownouts...3 due to the clip opening, a couple because I waited to long to dump, 1-2 because I failed to secure the bag.... I experience virtually no leakage...and the real benefit of the ostomy is that I dump on my terms.... I can usually ( accept mornings ) get 3 - 3.5 hours between dumps.... in a nut shell... it is because I have so few issues with the illio that I am going to stay with it... rather than expeimenting with a reversal.... so as many have said in here... the illiostomy is a life save. As far as the fissures etc. are concerned... if a reversal is not an option of choice.. then have the rectum removed... and in so doing you elliminate the chances of rectal cancer. ( Rectal Cancer is a nasty one to !! ) Go for it.... going by you memo I would say you have suffered enough.... just be sure you get a very experiences surgeon....no newbys.... your success will ber in proportion to the skill level of the surgeon... and a health dose of positive attitude.... Hope your feeling better soon. Cheers Mate.... Scotiaman

Wow.  You folks rock!


So glad to hear from all of you - thanks for the warm welcome and encouraging words!  I'm also happy to hear most of you are glad to have done it and have seen your lives improve.  Here's to you!


It's amazing what you can get used to isn't it?  I've taken a few road trips in the past year - one thing I've gotten very used to is staring down oncoming traffic while I'm squatting in a roadside ditch.  Although I'm pretty desensitized to it now, it'd be nice not to have to do that anymore.  Maybe it's naive but I think going through stuff like that may have prepared me for the challenges of surgery.


And those challenges are what's so hard about the decision when it's "elective" isn't it?  It's almost like you're giving up on some miraculous cure coming along and making you "normal".  But at the same time, this option presents itself as a way to at least make things better.  At some point you just gotta take that option.


As far as dating goes, even before I got sick I was weird enough that I never really had to worry much about dating haha.  And since I've gotten sick I don't really leave the house.  So at least I don't think it's really going to hurt my luck there


I just hope I can maintain my determination between now and then.  So far, so good and I'm grateful for the reassurance you've all provided so far.


Hope this transmission finds you well!
Matt

Just to put in my 2 cents.  The words you used "getting my life back" is exactly how I feel after having my "elective" colostomy.  Years of living in the bathroom, no sleep at night, raw skin, unable to go out or eat...horrible.  Small price to pay for not being chained to the toilet any longer.  Free at last.  best of luck.

hi matt your situation sounds alot like i was 25yrs. ago i had U.C. and was sick and tired of doc. visits and meds. and recurring flare ups. i was married and raising a young daughter and unable to participate in any activities. i have an ileo. and the only serious draw back happened about 2yrs. after my initial surgery when adhesions caused a total blockage and i needed emergency surgery to fix the blockage, since then vary little problems. i enjoy an active life work 40hrs. a week, deer hunt, fish, travel, ride my 4 wheeler, so i would reccomend the surgery, but find a good colorectal surgeon to do the job.   good luck ron in mich.

Hi, Matt.  I can, in no way; shape; or form, relate to the discomfort you have been experiencing with Chrons.  My little guy, now almost 3-yrs old, was born without much of his large intestine and with no anal muscle or cavity, had -no choice- but to have the colostomy surgery to allow him a way to dump.  We've battled with the idea that, if medicine improves, do we -want- him to have surgery to remove his bag and have him poo from his bottom area.  And.... from what I hear from others who have had the reversal... I think he will probably want to keep the bag!!!

So... why my comment; I have read from so many people on this site... and many, many, many other sites and groups... who have battled with Chron's and various other intestinal challenges... that they wish they had not waited so long to have the 'elective' (yeah, right) surgery!

My opinion... get your life back and have the surgery!  It won't be the same life (a blessing at that!!!!)... but your re-birth (as many have called it) will be a day to celebrate!  For my guy, all he knows is his poopy bag (thanks, ostomate friends, for helping me realize this fact!!)!!! and that is just fine for us.

Don't know if this little tidbit has even helped... I just wanted to offer my 2 cents for what it is worth.  Good luck!  You have a -huge- support group even with just this site.

-Ryan's mom

Here's my tupppence worth: okay the bag ain't so great and i'd rather i didn't have it but hey ho, at least i get to be alive to complain!

Before my op I couldn't walk too far as the motion would help a little bit of stool find its' way past my tumours. This became steadily worse, from having a half hour walking range at first before anything happened but towards the end it was down to five minutes. It meant I couldn't really go anywhere too far away and if meeting friends for drinks I would always have to think what the toilets were like at that bar. Quite often I wouldn't go because the toilets were so poor. Theatre and cinemas were out of the question!

I remember saying to my boss at the time that my quality of life is so poor it can only get better post op. It has become better, as someone else said, you do get your life back.

With whatever you decide to do, good luck.

Hi Matt

Well I am a new ileostomate (3 months) after Crohns and I have to say, for the first time in approx 20 years I actually feel like I have a life!!!  For me, the best decision ever made and wish I had done this years ago.  So far, I class the procedure as not so major but not minor either.  Obviosuly weighed up the decision to have the procedure done in first place (although in my case, really emergency surgery as so sick with so many complications).  But I had got to the stage of wearing the same black pants to work every day and having at least 2 spare pairs with me always.  Well, I usually required at least one of the spare pairs each day because of 'accidents'.  Hello, I am 42 years old and I required this?  And then, had various complications on top of normal life with Crohns including fistulas, fissures, etc, - horrible - so that helped with decision.  But overall, Crohns was making life a misery and I really got to the stage of what could be worse, disease or 'bag'?  i.e. ileosotomy could not possibly be worse!!!  And it was not!  So much better than I had ever thought!

Well, even with a whole 3 months experience, I already know best thing I have ever done!!!  I feel soooooo good now.  I did have a complication just before Xmas ( at 2 months post ileostomy) with blockage!  Well, huge pain, etc (definitely don't want that to happen again) and 4 days in hospital to clear  but now am more careful with diet, etc, so all good.  Oh and I did follow guidelines but turns out I ended up with adhesions after surgery - not major but you should be aware 'just in case' so although most people can eat a normal diet after surgery, some people such as myself need to be more careful with diet and definitiely exclude known problem foods (e.g. nuts, some fruits, peas, corn) as well as others that may have trouble  'passing though'.

But it obviously depends on your circumstances, overall health issues, etc.  For me, great!  But for you, you need to consider your current health, have you reached the top level of medication available (for me when Humira stopped working there was nowhere else to go), what about your life, personal stuff, etc.  Everyone is different and at different life stages/ life goals, etc.  So you need to do what is right for you!!!

Hi Matt,

A couple of things that come to mind after reading your post.

I too had problems for years (30 or so) and diagnosed with UC at 20. Flares became more frequent and worse. Knew that surgery was coming at 'some point'.

I almost waited too long. Was in hospital with a flare, wasn't remitting, pan colitis, c-diff infection. A ruptured colon was a real possibility. I almost didn't make it through, I was extremely ill during my op.

So looking back ... it would have been good to have the op when I was feeling as good as possible (as you are now).

Talk to the surgeon about whether the rectum will be removed/closed (Barbie/Ken butt ). I was left with a 6" rectal stump that is giving me grief (still have to wear a pad for the mucus/blood leakage and I still get uc flares in the stump).

With your fistulas in the rectal area ... I'm betting they will remove it. I'm in line for another op to do that ... it would have added hours to my ileo op ... the docs didn't want me on the table any longer than absolutely necessary.

Good luck with your decision.

Having the operation tomorrow.  Looking at having the entire colon removed potentially along with a few centimeters of ileum, leaving the rectum (yay?)

Thanks again for all the support and kind words, everybody!  I'll certainly be lurking around here in the future and you'll probably even hear from me again... if nothing else I will be able to answer this question first-hand soon!

Good luck Matts and keep us posted!

Rach xx

Well it's all over and done with.  I am officially an ostomate!  So far so good.  Pretty sore but not as much as I expected.  Looking forward to recovering and getting my freedom back!

Hope this transmission finds everyone well!
Matt