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[Dukeis]

I posted this on the My Story Forum yesterday and it was suggested I check in here also. I would love anything you can share with me ( good or bad) about dealing with an iliostomy. Dealing with the surgery or body image part of it doesn't really bother me. It is just the idea of having to deal with the bag is what I'm hung up on I think.

I’m a 48 years old man and this year I’m celebrating my 20th anniversary as a Crohny (not). I’ve been on about every medication they can throw at it. Had the best luck with Remicade, was on it from 2002 to 2009 it was a wonder drug for me, but I developed a nasty case of Histoplasmosis that nearly killed me. Histo is one of those things that never had its own black box warning back in 2002 when I started Remicade. I was put on Humira in 2010, but had to stop it because of Histo in 2011.

What I’m dealing with now and having a hard time wrapping my head around is my colonoscopy report from this past summer. It shows an area that they say is indefinite for dysplasia. My GI is very concerned because the area where this was found had no active disease. He has started me again on Humira (scary) in hopes if it is the disease that will clear it up. I have to be rescoped in December. He told me if the area turns out to be dysplasia he recommends that I have a total proctocolectomy because of the amount of time I have had Crohn’s puts me at even greater risk of developing cancer.

I know we have these scopes so we can catch these things before we have cancer, but it is still very hard to hear that after all these years knowing every time I’m scoped that could be the news. I guess I thought after all the years of good reports I would never get a bad one. I know the surgery is not the end of the world and have been told I most likely will feel better. I sure could use some input from people who have had this surgery. The surgery its self doesn’t really scare me. I’m worried about the psychological aspects of dealing with the iliostomy after the surgery. Thanks for any input and support ahead of time!

 

[Terriernut]

Welcome! :welcome:

Cave City Arkansas? I used to live in Bentonville back in the day. How ya'll doin?

I have a colostomy, so I cant tell you about a panproctolectomy, but plenty here can. As for having the bag, I have to say I am alive because of it, and for that I'm very grateful. Got my life back (mostly) and can live very normally for the most part. We have sky divers etc here for instance!

Getting to grips with the bag is like learning to ride a bike. You have a few mishaps to begin with, but after that it's easy unless you get too confident and dont pay attention! Have a good nose around here, and you'll see although we have our problems, life is pretty damn good.

 

[Misty-Eyed]

One of the reasons I had a total proctocolectomy was because of the cancer risk after having Crohn's for 18 years. Plus they couldn't scope me because I had a stricture in my rectum which they couldn't get past, which meant had I gotten cancer, they wouldn't of found it until it's too late.

It is a hard decision to make as it will change your life forever, it's not something you can go back from which is daunting. But if it helps, I don't regret having my surgery done. I have a full time job which I love and no longer have any pain and lead a normal life.

I've almost had my bag for a year and it's just honestly normal to me now. I forget that other people aren't the same and I don't feel any different to anyone else. I forget about it most of the time and when I do think about it, it's no big deal. It certainly doesn't stop me from doing anything.

I do think though that how you feel about the whole thing really decides on how well you'll deal with it though. I quickly got my head around the whole thing before my op and I found it pretty easy to deal with mentally and physically.

The worst thing about the whole thing for me was the extremely slow healing where they stitched me up down below. Because I had crohn's in that area it's not healed well and I have to have plastic surgery to help with that. Even so, I still don't regret it. It's the best decision I've ever made

Good luck!

 

[2thFairy]

I have a temp ileostomy after total colectomy (still have a tiny bit of rectum) and J-pouch formation in January of this year. I was given the okay for reversal to the J-pouch several months ago, but have decided to keep the ileostomy. I am just amazed at how much life I have now and really quite like Sideshow Bob, my stoma.

It definitely is not an easy decision. The surgery is a big one and a very tough one on your body. I also told my husband before surgery that I wasn't going to leave the house for 3 months until reversal. HA! I was so pleased with my new-found health that I was at the grocery store just a few weeks after being released from the hospital.

Dealing with the bag does have some inconviences, but it's cool to also know that you don't have to worry so much about what you eat, no more mad dashes to the restroom, no more limitations on going to parties (or whatever).

Just this last weekend, I was at a huge bookstore and needed to empty my bag. I had been driven there on a Harley, so had my buttkicking biker boots on. When I first walked into the bathroom it was empty. As soon as I started to undo the bag, several people came in and the stalls filled up. I started laughing at myself thinking of how many women were checking the bottom of the stalls looking for an empty one, only to see biker boots pointed in the wrong direction and wondering if someone came in the wrong door!

But yes, there are good points and bad points in dealing with a bag... a lot of trial and error in the beginning. It truly does not take long before the whole process becomes as natural as anything else you do in a daily routine.

 

[Dukeis]

Thanks for the replies! I just have times when I think will I be able to do this or that. Sometimes when think about some of it seems silly. Like I always wonder in the morning when I wake up on my side if I have the bag will I knock it off every night rolling over. It is the stuff like that that worries me. My wife is a nurse and she tries to reassure me, but she just sees people with these. I know she will do anything I ask with this(she is wonderful), but I don't want to be depended on someone helping all the time. That isn't fair to her. I'm glad I found this forum to ask people that have these because I know I'll have a lot of questions about this in the months to come.

 

[2thFairy]

Having your wife involved with will make it more of a success for you. That is excellent!!

 

[Downnvrout]

Welcome to the forum. It has been a lifesaver reading through everyone's experiences and knowing that I wasn't alone.
I have a temporary ileostomy and the surgery took a lot out of me but I'm alive because if it. My issues in dealing with it were much more psychological rather than physical. Sure I've had a few mishaps but once you find a system that works for you it really does become like second nature. Wow I can't believe I just said that because when everyone told me it wouldn't be that big of a deal, I thought they were nuts. Lol they were right and I hope that everything works out well for you.

 

[Nyx]

Welcome to the forum and our little club here...I have a permanent colostomy and have had it for almost 3 years now. I can't really add much more than any of my fellow ostomates have already said. It's really amazing how used to dealing with the stoma you become, and how quickly. Once you get your appliance down, you really shouldn't have any problems at all. At night I roll over on mine all the time and I've never had it fall off or explode...lol I travel a lot and it's been great not having to know where every single washroom along the way is. Plus, if you have a sick sense of humour, you can really gross your friends and family out...lol

Good luck to you!

 

[2thFairy]

Plus, if you have a sick sense of humour, you can really gross your friends and family out...lol

Good luck to you!

I think that's my favorite part of all of it! Hahahaha!

 

[Misty-Eyed]

Oh don't worry about sleeping. I sleep on my side and subsequently on the bag in the morning when it probably needs emptying and it's fine. It's all about confidence, at the end of the day. I was worried about the same things before my op, but the first few days I was trying so hard to get comfortable from the actual op, that I didn't have room in my brain to think about the bag and what that was doing. So I think I got my confidence that way!

And yes, for the first few weeks you are going to be very dependant on your wife as it is a really huge op and you're not going to be able to do much in the first few weeks. But make the most of it! Take the time to relax and heal. After that you'll be fine. I'm hopefully going to be living on my own soon and having my bag and stoma hasn't brought any added concerns.

 

[Dukeis]

It is good to hear that you can round over in bed and such with the bag. I broke my coccyx a few year back (slipped on ice) and now turn over a whole lot more then I did before that to get conformable.

Sick sense of humor I can do! I told my wife if I get the bag, if someone ticks me off I'll always have something handy to throw at them.

That's again for all of answering me. I'm sure I'll have a lot more questions in the months ahead.