Ileostomy Surgery?

[ThatGuy2006]

I had a colonoscopy yesterday and things arent looking too hot. My Sigmoid colon and rectum are pretty ulcerated and strictured along with my Ascending colon. My small intestine is in good shape however. I have been on pretty much every medicine for this disease with no avail and now I'm at a crossroads...

Do I get a bag? I've heard that the people that do feel alot better after the recovery and once they get used to it being there.

My other choice is to try Imuran but from what my doctor says, it could take months before I know if it is going to work and I feel like I've wasted enough time with medicines that don't work. There is also Tysabri but I'm in the same boat as the Imuran when it comes to that. I am tired of wasting time on waiting, it's like that's all I've done for the last 4 years. I want to get back into college and be able to hold a job and I, personally, think the bag is the right way to go.

Can anyone tell me if I'm being rash? Should I try the Imuran or go for the bag?

Thanks guys!!

PS: I've been flaring on and off (more on than off) for 4 years now so I'm ready for some relief

 

[Brindle]

I had a Proctocolectomy and Perm Ileostomy in Oct of 2009 after being in the same position you are currently in. It has been GREAT for me. I was dx in 1996 and if I could turn back time in 1997 I would have had the surgery. It has given me the freedom to travel and not worry about pain or where the next bathroom was. I no longer take any crohn's meds. I have lab work that is in the normal ranges again after being low for 14 years. For me it was the right choice. If you have any specific questions, I would be more then happy to answer them to the best of my knowledge.

Hang Tough!!!

 

[CDDad]

I'll pretty much mirror what Brindle said. I had my Proctocolectomy in April and now I am doing great. I can do so much more with the bag than when I was sick. I am training for a half marathon in Dec, and enjoying having energy to play with my kids.

The recovery can be tough, it was for me. But now 4 months later that's all in the past.

Making the call is a tough decision. Once you remove the rectum and anus, there's no going back, no reversal in the future. But, sometimes the colon is just too far gone for medicine to help. All I can say is that having the bag is not at all as bad as I imagined.

 

[ThatGuy2006]

Glad to hear that you guys have had positive experiences...definitely eases my mind a bit. How often do you have to change your bag? Can you shower with it and stuff?

 

[CDDad]

Well, with an Ileostomy, I empty my bag about 6 times a day. I change it to a new bag every other day. Some people use the same bag for 7 days or more. I just like a nice fresh bag, and insurance is covering it.
I shower with it, swim, dive, hike, run, get sweaty, just about anything. Personally, I use the Hollister New Image system with a Hollister Adapt barrier ring (optional).

 

[kello82]

sorry to hear that youre not doing well buddy

i had the ileo done last april, but did NOT have an -ectomy of any sort. nothing was removed. and i am doing better, but not great. my crohns is still quite active everywhere in my body. docs think that my colon is like the epicenter of inflammation and when they take that out, everything else will calm as well. but i dunno, i struggle with being 20 y/o and tossing out an internal organ. thats such a perm decision to make this early in my life, and me personally im not ready to make it. but it may happen in the near future who knows.
point is, i was 83 lb day of surg and i am now 105. granted its been like a year and a half to gain this weight back, but it happened and that means my body is able to break down food into nutrients and use them and THAT to me at least represents a serious improvement in some senses.
would i feel great if i had just had the full procto done? maybe i dunno. i still deal with cramping in my colon and the urge to go and passing mucous all the time, so those issues would be gone.....who knows though really it is just up to each of us to decide when its time you know?

I, personally, think the bag is the right way to go.

THAT says it all for me. it seems to me you have already decided that it is time? a statement like that is pretty much the end of discussion in my eyes, i remember the day i realized in my head "omg that is what i have to do. that is what i WANT to do." and to come to such a realization after much time spent worrying about the possibility of a bag, i mean thats big. truth is you have been thinking about this decision for a long time maybe not really conciously but it takes time to change those thoughts.
so IMO you are not being rash at all.

best of luck =]

 

[ThatGuy2006]

Thanks for the words of encouragement kello

I think it's weird how the one thing I feared most when I was first dx'd 6 years ago is now the one thing I'm looking forward to.

 

[kello82]

I think it's weird how the one thing I feared most when I was first dx'd 6 years ago is now the one thing I'm looking forward to.

EXACTLY. haha thats exactly it! and that flip of opinion doesnt happen overnight, but the realization that you have a different opinion, that is what happens in a heartbeat it seems.
its so very strange when you realize your world has changed so much around you that it has changed your view as well. kinda awesome though.