Considering an Ostomy - Will it Give Me My Life Back?

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 didn't. It got me in my early 40s. I have had my surgery for two years now and unable to work due to my own issues of blowout and leaks. It's no big deal, you just have to plan like you said. What a relief if you don't crap yourself one way, you might in a different way. But there are lots of people on this site that you can ask questions and/or just vent. Get it off your chest. It's free counseling 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 hassles and the fear of embarrassing accidents ....although I haven't had any yet (knock on wood lol). I had a lot of complications after surgery--infections, abscesses, 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 appointments! 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 its problems, 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 things, 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!

Words of Encouragement from Ostomy Advocates I Hollister

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 so long. I had part of my large bowel removed, no pouchy. Then a year later, I had a temporary ileostomy. Then the same thing, 8 operations. This, yes, you will get your life back. Honestly, as I have said, I even bungee jumped, no problem. Just stupidity to bungee jump for my 30th birthday. I promise you, you will have to wait after surgery. I thought it would never get better from surgery. Okay, surgery, well, I was in agony, but there are drugs for that. Thousands of us Crohn's sufferers never have remission. I didn't, but do it. Yes, yes, and hurry up. Don't waste another bloody day. I feel like I wasted 15 years of my life. Having a pouch is not as bad as you think, but sometimes it freaks me out. But I can go to the loo whenever I choose. Put on weight. Food is wonderful to start eating again. I was so skinny. Being female, thought I looked like I had cancer and/or heroin addict. Bloody lovely, hey! 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 were like a job for me. Go, go, go, go, go, go, go for it. If I could come see you, I would go to the hospital and see you through it. While being an Aussie, have a beer or 10 as well. You read your post and you really can see it's not normal life. It's actually shit. Mine was. Please do it. Everyone here has different problems. We are all different. You're young. I am now 43. Had my last operation in 2008. Not good pain-wise, but everything is fine. I am crazy anyway. Please 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 that's normal as well. I will nag you. Do it. Life is good, mate.

Hi... Thought I would weigh in here for a moment.... you know you can read a lot of horror stories in here about getting an ileostomy 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 ulcerative colitis... I had maybe 6 attacks (approx. 3 months each) between 1974 and 1999... then went 10 years with zero symptoms... only to 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 ileostomy July 31.... since then I have had no blockages, maybe 5-8 brownouts... 3 due to the clip opening, a couple because I waited too 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 (except mornings) get 3 - 3.5 hours between dumps.... in a nutshell... it is because I have so few issues with the ileo that I am going to stay with it... rather than experimenting with a reversal.... so as many have said in here... the ileostomy is a lifesaver. 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 eliminate the chances of rectal cancer. (Rectal cancer is a nasty one too!!) Go for it.... going by your memo I would say you have suffered enough.... just be sure you get a very experienced surgeon.... no newbies.... your success will be in proportion to the skill level of the surgeon... and a healthy dose of positive attitude.... Hope you're 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 a lot like mine was 25 years ago. I had UC and was sick and tired of doctor visits, medications, and recurring flare-ups. I was married and raising a young daughter, but I was unable to participate in any activities. I have an ileo, and the only serious drawback happened about 2 years after my initial surgery when adhesions caused a total blockage. I needed emergency surgery to fix the blockage, but since then, I've had very few problems. I enjoy an active life, working 40 hours a week, deer hunting, fishing, traveling, and riding my 4-wheeler. So, I would recommend the surgery, but make sure to find a good colorectal surgeon to do the job. Good luck, Ron in Michigan.

Hi, Matt. I can, in no way, shape, or form, relate to the discomfort you have been experiencing with Crohn's. My little guy, now almost 3 years 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 Crohn'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 rebirth (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 two pence 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 tumors. 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 about what the toilets were like at that bar. Quite often, I wouldn't go because the toilets were so poor. Theaters 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 Crohn's, and I have to say, for the first time in approximately 20 years, I actually feel like I have a life!!! For me, the best decision ever made, and I wish I had done this years ago. So far, I classify the procedure as not so major but not minor either. Obviously, I weighed up the decision to have the procedure done in the first place (although in my case, really emergency surgery as I was so sick with so many complications). But I had gotten 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, I had various complications on top of normal life with Crohn's, including fistulas, fissures, etc. - horrible - so that helped with the decision. But overall, Crohn's was making life a misery, and I really got to the stage of what could be worse, disease or 'bag'? i.e. ileostomy 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 the 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 a blockage! Well, huge pain, etc. (definitely don't want that to happen again) and 4 days in the hospital to clear, but now I am more careful with diet, etc., so all good. Oh, and I did follow guidelines, but it 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 definitely exclude known problem foods (e.g. nuts, some fruits, peas, corn) as well as others that may have trouble 'passing through'.

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 was diagnosed with UC at 20. Flares became more frequent and worse. I knew that surgery was coming at 'some point'.

I almost waited too long. I was in the hospital with a flare, it 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 operation.

So looking back... it would have been good to have the operation 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 operation to do that... it would have added hours to my ileo operation... the doctors 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