Seeking Advice - Is an Ostomy Worth It for Crohn's Warriors?

Hey! I'm battling with the choice of getting an ostomy or not. I've lived with Crohn's since 2011 and no medication has really worked on me. I'm in constant fear of something happening, never feel comfortable, being scared of shitting myself every time I go outside, etc.

I want to travel without having to hesitate or worry about my Crohn's, I want to have an active full-time job without problems, I want to live my life without limitations!

Getting surgery can be the way to get my life back, but is it worth it? I will never be the same again and there are several complications. I can manage life without surgery, but not a comfortable one.

Hello mm0112.

Thank you for raising this question, which I wrestled with for over ten years whilst I was incontinent of faeces.

It is, of course, a very personal decision to make and despite the fact that every doctor I saw in that time advised me to have a colostomy. I tried every other route available before 'giving-up' and opting for the surgery.  All I can tell you is, that in my case, it changed my life completely, from that which you describe to one where I no longer even think about those sorts of problems during the day.

Having said that, I would also say that irrigation has a lot to do with my daytime freedom as I don't have to tend to the needs of a bag.

We all have to weigh up the advantages and disadvantages in having the surgery and some will lay greater importance on some facets of the situation than others. Once we have laid it all out and ascertained which set of circumstances are worse than the alternative, then we can make a rational decision.  The problem, as I see it, is that none of us really want a stoma if we could live in a perfect situation without one. It's all a matter of 'balance' and weighing up the pros and cons to see which is the least distasteful.

Best wishes in your decision making

Bill 

If you have an ostomy, it won't cure your Crohn's. It could come back somewhere else in your tract, so it wouldn't actually stop you from worrying about becoming ill, would it? If I were you, I wouldn't get one unless you must. But that's because I don't like having one. It's uncomfortable for me and I can't feel free to just roll over in bed like before. I have to worry about it leaking, which it's only done a few times. It's also painful around it. I am new to having it, but I don't think these problems will ever go away fully for me. No one can say my stoma nurse cannot tell me it will ever become not painful. It's just not a nice thing to have.

It's a very personal decision. Minimoo is correct, it won't cure your disease, it will return in other places. That being said, I have battled UC for 17 years and also tried every medication, injection, infusion, I could find. Nothing worked for me and the side effects were terrible. I said I would never have the surgery because as an RN, I've seen so many complications from surgery. I became very ill the past 2 years and was nearly dead last August when they rushed me in for emergency surgery. They removed my entire colon and I woke up with an ileostomy. Best thing ever for me. I can do so much more than ever and I have no pain. It's a bit of a hassle dealing with the bag and all, but for me, it's way way easier than dealing with diapers and constant trips to the bathroom.

mm00112,

I have an ileostomy since 2012, supposedly due to UC. By doing a lot of reading and research, I have found a way to control my inflammation. Besides all the supplements I take, I now make myself a Turmeric Latte every morning that I drink on an empty stomach or after coffee. Days that I am too rushed or traveling, I take a high-quality Turmeric supplement. I just had my rectal stump checked and there is no UC inflammation. I highly suggest you research Turmeric yourself. They have now done studies that have found it to be very helpful in treating Crohn's and Ulcerative Colitis. I wish someone had told me about it before I had to end up in emergency surgery. But if it has to be, living with an Ostomy has a learning curve but is really quite doable and doesn't have to limit your life.

Living with Your Ostomy | Hollister

I have had Crohn's disease for 20 years, and have had an ileostomy for 7 years now. Having my large bowel removed was the best decision I have ever made. I too had chronic Crohn's and most medications only worked for a short time. I became housebound and always had a constant fear of soiling myself while out shopping or visiting friends, etc. This happened to me numerous times, always so embarrassing. When my specialist suggested I have a total colectomy, I decided to think of this as a second chance at life and enjoy everything life has to offer. I travel overseas often, swim, work part-time, enjoy a great social life. My friends all know I have a "bag" and are all very understanding and supportive. I now control my Crohn's instead of it controlling me. Don't be scared of having a stoma and ileostomy bag as it's not as important as having a normal life again. Good luck.

I don't have Crohn's, so I don't have that experience to compare. Mine came about as emergency surgery to handle severe peritonitis. However, I expect that mine will end up being permanent, although originally the doctor said we could probably reconnect in about a year. Subsequent complications, and reconnection options appear to be closing off. But that's OK - although I seriously wanted to be reconnected when I first got the ostomy, my quality of life (incontinence and other problems similar to yours but from a different cause) before the ostomy was so poor that I am no longer wanting the reconnection so badly. In fact, my life turned around with it! Once I got used to the rhythm of my body, I seldom if ever had any issues with leakage or blowouts. Yes, there is a learning curve. There is with most things in life. But I would have to say my overall quality of life is so much better after my ostomy than before - even taking EVERYTHING into consideration - that the minor inconvenience of carrying extra supplies around is just no big thing at all. No travel worries, no eating out worries, no running around town doing errands worries. It's all good.

Hi Mm.  I think you lucked out with some terrific opinions/suggestions from experienced, caring people.  I would just add it's all about the quality of life and we don't want your decision to be a gamble.  I believe your suffering with Crohns is way more severe than the stuff we put up with as ostomates.  We learn to handle things better and, like Bill wrote, we sometimes can improvise to make it even better.  I know what living in the bathroom is like and putting up with your stuff since 2011 suggests you're a much stronger person than I am.  Unfortunately, too many medical folks, including doctors, think an ostomy must be avoided at all costs.  Not true!  An ostomy can give us our lives back with more quality than we ever imagined.

Respectfully,

Mike