Need advice on contemplating ostomy surgery

Hi guys, I hope you are all doing well at the moment.

I am curious about your opinions on having an ostomy.
I have had constipation since I was around 2 months old, and I'm 19 now.
I was diagnosed with UC 4 years ago unrelated to constipation, and then re-diagnosed (but not definitive) to Crohn’s 10 months ago. I'm currently on Remicade and azathioprine, the former I started 10 months ago, and has put me in remission ever since.
But I still have constipation issues for the most part.
I've been thinking about the surgery for a permanent ileostomy for over a year now on and off. I'm not currently ‘serious’ about it (not going to ask for a surgical consult), but I do often wonder, why not? I figure that at some point in my life I'm going to either need the surgery or be 100% fed up with my colon and want to get rid of it, so why not sooner rather than later.

But when I talked with my family about it, they thought it was a crazy thing to do, like over the top and ridiculous. My GP even thinks it’s crazy apparently. But I feel like they don’t understand what it’s like to be constipated all my life AND have Crohn’s, and all the meds and extra risks later on.
My mindset is stuck between “wow I'm being overly dramatic” and “hey I have the right to be considering this”.

So, what do you guys think? I think the ileostomy sounds awesome, and no flaws that I can think of. Am I being naïve and overlooking some obvious major disadvantages of an ostomy, or is it really not that bad? What would you do if you were in my boat?

Thanks :)

You have to do what's best for you, not what's right for your family or your GP.

I'm fairly new to this--had a colostomy in January of this year--but did have constipation my entire life, from birth basically, due to a birth defect. I can't imagine piling Crohn's on top of that. Constipation is an awful thing. I also had bowel incontinence. That sucked.

For me, although it was a colostomy, not ileostomy, I would say overall, it's worth it to me. I'm still getting used to it of course, and I have my days when I say "i hate this ****, take it back", but I'm adjusting, and having fewer of those days.

I would say the best things you can do are to talk to as many people as you can about it, read up on it (i'm sure you have), and maybe get that surgical consult--they may be able to give you some really good info on their opinion on you having the surgery now, what the pros and cons are, as well as what your life might be like after surgery. You could also ask if there are any former patients you could talk to (about how the surgery affected them and how they made the decision).

Just don't not go into this thinking everything will be butterflies and rainbows after it. There may be problems, but depending on your surgery, they may be very minor and manageable. Don't mean to scare you, just don't want you to think it will make everything perfect. I still have to take lots of laxatives every day to keep my ostomy functioning, but it's ok. I have for the most part, accepted that. Life is still much better than it was, that's for sure!!

I know I don't have an ileostomy, but I'd say the worst thing about having an ostomy for me is that I'm still in the stage of paranoia (remember i'm new at this) about leaking, etc, and I carry around a bag of extra clothes, supplies, etc. Overall, I'd say there are some annoyances that come with an ostomy, but nothing horrible.

Basically, in my opinion, it comes down to quality of life. You have to make a decision whether you can keep living like this, or whether surgery has a good chance (very informed of course) of improving your quality of life. My GI doc, on our 1st appt. took my hand in his and said "I know your quality of life is poor right now, and we're going to make it better."

Quality of life.

Sorry I wrote so much. I hope something out of it helped. Whatever decision you make, go full force into knowing it's the right one for you!


Sunny.

The ileostomy most likely will end your constipation problems. However, you have Crohn's, and it will not cure you of that. You will still have to be on Remicade or another medication. You will still likely get flares. I have had an ileostomy for 14 months and am currently on Entyvio to keep the Crohn's in remission. That being said, my quality of life is so much better now that I have an ileostomy. I'm not afraid to do things where I don't have immediate access to a bathroom. Car rides are no longer terrifying. I went zip lining up on a mountain where I was without a bathroom for two hours.

What's the worst thing about an ileostomy? It still feels somewhat humiliating to be carrying around a bag of poop all the time. But I suppose it's far less humiliating than having accidents. No one can ever tell; it doesn't smell and it's not noticeable under clothes. But I still feel that way. So I guess that is a downside for me, and I have occasional issues of skin irritation and discomfort.

Like previously mentioned, you have to decide what is right for you. I had UC and was a good candidate for a jpouch so that is what I went with. I'm 19 also so I figured maybe I could give you some advice being the same age and all(: I'll tell you that it was very difficult for me to deal with my ileostomy, however, it was temporary and I hear that the end ileostomys are much better and easier to deal with so I can't give you much advice on that cause hopefully your experience would be different. I can tell you though that the surgery (even just the one), is very grueling. You have to make sure it is what you want to do. If it isn't required like mine was and you have the option, do all the research you can and make sure you are ready and confident in that decision because it isn't easy. If you are in college be prepared to have to put some off. I had to put off this past spring semester because of it and am behind my class now. I can tell you that my jpouch surgery was worth it though, and I don't hear much different from people with permanent ostomys. The worst part for me was just mentally getting used to having it and changing it properly. Also it leaked almost every night which would suck. But, like I said it was temporary which are usually very hard to manage. People with permanent I hear are usually very happy with the result and get used to it a lot easier than the temporary. You make a good point about the long term effects of the medicine. I would worry about that also. After my surgeries I am now drug free except for over the counter iron pills, can eat anything I want (besides popcorn), and I only go the bathroom a little more frequently than other people. Overall it was a good decision and was definitely worth it! Like I said just do your research and make sure it is what you want because it is a difficult process emotionally and physically. Best of luck with whatever you decide, and don't hesitate to ask any questions! We're all here for you(:

Well, the worst part of having an ostomy for me have been the complications I've had from the surgeries (and I had very good surgeons -- complications just happen sometimes). From the first one the butt wound didn't close, and I had to have a second surgery, months of staying off of it, and it took three years overall to get that wound closed. Then I started having bowel obstructions, which turned out to be from a parastomal hernia (a complication that can't fully be prevented), and they resulted in blockages where I was vomiting, in pain, miserable, and sometimes had to have an NG tube (from my nose to my stomach). Two months ago I had emergency surgery, where the surgeon had to move my stoma to the other side.

So, here are some flaws, since you said no flaws you can think of.

That said, I'd still do it again. Getting the ostomy gave me my life back. Before then I was running to the bathroom twenty times a day, fatigued all the time, having weird and painful skin and eye complications etc. When I haven't been in the middle of the surgical complications, I've been way healthier than I was for years. I also don't take any of those awful medications anymore (my Crohn's seems to have been only in my colon).

It is your decision, and you need to weigh the potential risks and benefits. If your constipation is partly functional and not caused by your colon, surgery won't fix the functional part. There are new drugs for IBD coming out all the time....

I was so opposed to surgery that I waited until there really were no other options. The disadvantage to that was that I was so, so sick, and it made the surgery harder, plus I took lots of prednisone which has long term consequences. The advantage, is that I don't regret my decision, as it was very clear. Your situation is more ambiguous, and thus a lot harder emotionally. It's great that at this point you see surgery as a potentially very good option. That will help you make clearer decisions as you see how your health plays out.

Had I known in the years and years before surgery I'd end up having the surgery, I would have skipped ALL those brutal meds and gone right to the OR. There is some getting used to, and there is no way around the mental issues. But overall it changed everything for me. I didn't have to live based on where the next bathroom was.
Get as many opinions as you possibly can, then put it all together.

"Larasmom"Losing my diseased intestine and rectum was the best thing that happened to me! I am healthy and happy.

Exactly!!!! Hate to say it, but IT WAS the best thing that could have happened. There are limitations, but they aren't bathroom related anymore. ( except public restrooms, but that's another story )

I had my colostomy surgery almost three months ago. I have not felt this good in many years. The bag is worth it if it will improve your quality of life. The ability to do things that I couldn't for years outweighs having a bag on my stomach. If is an adjustment but you will be amazed at what you can get use to. If you go on Youtube, you will see young people talking about how they have adjusted to life with it and it helped me mentally to get over it. Good Luck!!