Advice Needed - Ileostomy Reversal and Dilated Intestine Options

Hello everyone, it's been years since I've been here, but today I got the news that I could get an ileostomy reversal. However, I also have something bad within me. I got an X-ray of my intestines and everything seems fine except the bottom (or somewhere near). Doctors told me that I have a dilated part on my intestine or colon. Doctors gave me 3 options: 1) keep my ileostomy how it is, 2) changing the ileostomy to a colostomy, which I don't get why? And the final option was to cut the "dilated" part and reconnect me to my colon, but with that comes some type of risk. The doctors said that if cutting could also put a risk that they might cut a nerve receptor and could also cause diarrhea and other uncomfortable things if I get the part that's dilated cut out. So I wanted to see if I can get advice or maybe someone that has been through what I am going. Please, any help/comments would be useful as I am young and don't know anything about this. I hope you all have a wonderful day and hope that the people that I first talked to on this website are doing well and healthy. Thank you

Lando :)

No one can make this decision for you, Lando, but I can say that I was your age when I got my ileostomy.  That was in 1964, and I've managed to have a full life notwithstanding the presence of the bag.  The trick is not to let it rule you; you rule it.  Good luck, kid.  

Hi!

So, do you still have all of your colon and small intestine? Mind me asking the reason for the ileostomy? (Feel free to say, "Jodie, I do mind sharing that. Thank you very much.") For the options you were given and not really understanding why I would get a second opinion. Any teaching/research/university hospitals close to you?

Hi Jodie!

Reason for my ileostomy was because I simply couldn't go to the bathroom and I was just bloated/constipated. Yes, all that the doctors did was just make a loop so just small intestine is being used, and the hospital that I am at is UCI Medical Center.

Hello there

I went from having an ileostomy to a colostomy and I tell you what, I like having the colostomy more than the ileostomy. With the colostomy, you kind of have more controlled stool. It's not always runny like an ileostomy. But also what I did was watch some YouTube videos and did lots of research on the difference between the two. Not everyone is the same when it comes to the 2 different types of ostomies. But just do some research and decide on what you would like to do.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi Lando,

As folks have said... it's not a simple decision to make and everyone is different... so you can't rely on our experiences to predict yours. It sounds like you have the liberty of time, so use it to find out as much as you can about the details of your condition and the options offered to you. And make sure you get a second, and I'd get a third, opinion before you proceed with any choice you make. In terms of ileo vs colostomy, the more bowel you have functioning the more normal your life will be... it's really that simple. You came from the factory with all that intestine for a reason. If we could function 100% normally with half of it... nature would have only given us half. That being said, underlying conditions tend to throw that oversimplification I just made right out the window. What I mean by that is for example... I'm short gutted with only 3 1/2 feet of small bowel. No terminal ileum, no colon. So I have a lot of output that's mostly liquid because all the bile my liver makes that's normally reabsorbed by my terminal ileum... isn't. So in my bag it goes. And without any colon the water isn't drawn from my stool to hydrate me. Sound pretty bad, but I wouldn't trade places with someone with a complete small bowel and most of their colon if they had any underlying disease. I'm completely healthy other than having a shitbag, but having Crohn's or Ulcerative Colitis still going on, even with a lot of intestine, would be a friggin' nightmare. So you can see how you need to weigh everything to determine what your true quality of life will be, and not just how much bowel you still have. Plus you're young, so you'll have the option of changing your mind and picking another path if the one you choose doesn't work out.

From the way you post your question I suggest you get more informed on exactly what your underlying condition is/was, and what each of the 3 options offered to you entails, and see if there are other options as well... that's where the 2nd and 3rd opinions come in. Don't rely on any doctor or surgical team, no matter where they're from, to dictate what path you take. You'll just regret it later. Do your homework and ask lots of questions. The right option for you will become very obvious the more you know about what your long term prognosis is and what's being proposed. And in the end you really do want to make the best informed decision possible... which only you can do. I know, it would be nice to just go to one doc and do what they suggest... but that, my friend, is a recipe for disaster. Because at 5:00pm they go home and forget all about you... while you're stuck living with their decision 24/7/365 for the rest of your life. And you have no idea what their true motivations are. You're luckier than most in that you've got time to figure it all out. Use it wisely and you'll be very glad you did!

;O)

That was the same reason I had to get my loop ileostomy a few years back. They didn't know why, but my colon was just not working. One doc felt that it was a medication I was taking that destroyed it.
I was in the same position as yourself 2 years into my loop ileostomy. I was given choices as well. One was to reconnect me. Another to remove the colon and do end ileostomy or to do some inside the body pouch thing where I could still go from the anus as usual. Being that I was told my colon was not working properly and that before my ileostomy I had severe rectal pain with spasms and pelvic pain, I decided to go for a total proctocolectomy with end ileostomy. My choice makes this permanent and there is no going back to anything any longer. I'm happy with my personal decision. I could not see going back to living the way I was prior to my ostomy, but they explained each choice, the good and the bad. Like others have said, it's an individual choice and you just need to get as much info as you can before deciding. If you decide to get hooked back up, you can probably always go back to another ileostomy.

Hello Bob

Man, I am glad you responded to my post. I was looking back and I've seen that you also commented on my old posts when I first got my ileostomy. Hope you've been doing good and from what you are telling me, it seems like you are. Thank you for your advice on this thing. It's been some time and at first they told me it was only going to take a couple of months after tests/exams they've done to me. The doctors finally tell me that I can get a reversal. (After years) I will go ahead and do what you've suggested: do my own research and ask a ton of questions because in the end, I do want what's best for me and hope to not come back to a bag. But if needed, by all means, I'll die with this shit bag, no doubt haha. But thanks again, Bob. I really do appreciate you and hope you do good, man. Have a good night.

Lando

Have your doctors used the terminology: Disorder of Brain/Gut Interaction? (I asked for a better diagnosis name for why I had my colon removed and they told me this is what they are calling it in the research world right now)

If it's me, I would do the least risky decision and keep things the way they are. But, that's me.

Just wondering what medication you were on that destroyed your colon?

Hi LandoLando

I had an emergency transverse colostomy about 3 years ago, and within a few months had problems that included it prolapsing more and more until it reached the point where it totally prolapsed and half my intestine fell out, dragging part of my bowel with it. I underwent emergency surgery to revise the colostomy to an ileostomy that I've now had for almost 2 years. The difference it has made in my life has been fantastic. Once I found the appliance that suits my needs best, I live a perfectly normal and happy life once again. My surgeon does not recommend I have it reversed, which suits me just fine as I've had enough surgery to last me a lifetime, and I prefer to let sleeping dogs lie, so to speak.

I know not everyone will have the same experience as I did, but for me, an ileostomy worked out best.

Best of luck with whatever decision you make.

I think that's a great idea! Since you're unsure what you want to do, what would it hurt to get a second opinion? The more informed you are, the easier it will be to decide what is best for you. Good luck! Hugs