What are the odds?

[Grey Hawk]

Doctor told me if he was me, he would get surgery now and have a quality life for my younger years(I'm 20). I asked if I would have to have a bag, and he said no, but it could change once the surgeon gets in there, but he found it unlikely.

This scares me of having a bag. The reason why is, I'm 20 and I have had only one flare since 15(when diagnosed) and even while flaring, like right now, I barely have any symptoms. I go to to the bathroom once a day, its formed, and I get pain maybe 3 times a day for 10 seconds max. However the colonoscopy showed it was pretty messed up inside. Infact they didn't even want to go into my small intestines, because the area where the small meets the large was pretty bad.

I think they wanna remove part of my ileum, do you guys think I'll need a perment bag? From what I have read, most bags are because of removal of parts of the colon.

 

[Kris]

If they say it's pretty bad and to have surgery, it's most likely not going to get better on it's own. As far as I know, I have never heard of anyone getting a permenant bag just for removing part of their ileum. Your doctor may be saying you could get a temporary bag if he opens you up and finds something else going on. I have a temporary bag because I had my colon removed and my rectum had inflamation. They weren't able to hook up to my rectum right away. Hopefully in 3 months. Ask more questions and if you still aren't comfortable with what your doctor is saying, get a second opinion. Just don't let it go to long. A lot of folks on here had to have emergency surgeries and woke up with bags. I think it's better to know your options and prepare. I waited too long and my crohn's spread from parts of my colon to my entire colon by the time I agreed to surgery. I probably wouldn't have had this temp. bag if I had it done when they reccomended the surgery.

 

[free]

HI Grey Hawk, be careful doctors told me the same thing 25 years ago I refused. After many years fighting with the Docs I went my own route that didn't follow the mainstream meds.More dietary and common sense,now when they look in they don;t bother me any more.If you want to know what I did you know my name .Free out

 

[ameslouise]

Hi Grey Hawk - Not much to add, I agree with what Kris has said above.

There is another user here, Ian, that is having the same dilemma as you. He feels pretty good for someone in a flare, but the docs are saying he may have to have surgery. Read his posts because it sounds like you two are having the same quandry.

Making the decision to have surgery is a hard one anytime, but really rough if your day to day life is not so bad that you would feel drastically better by having surgery (bag or no bag).

My advice to anyone would always be to get the surgery before you end up in an emergency situation. Have you seen the pics of your scopes? How bad does it look to you?

I took one look at my last set of pics and just knew it was time for surgery. Helen Keller could see that it was time for me to go under the knife!

Good luck in making your decision. - Amy

 

[Grey Hawk]

Ya it does look bad from the picture. But the thing is, I haven't even exhausted all my options. I have to even try remicade.


But the thought of the bag does scare me, it would change my life drastically. In fact I doubt it would improve anything about my life. The main problem I have with crohns isnt pain or anything. It's being anti social and the visual side effects that go along with it and the medicine. A bag would just make matters worse. I'd be trading one problem for another.

Doctor said I'll need surgey eventually but I'd hate to wake up with a bag at 20 and mess up my whole youth when I could have waited till I was older an married with a carrer where it wouldn't be as big of a problem.


As for what is being removed I re looked at my notes and it says part of ileum and a little of the colon. The colon area is small. Does this change anything?

 

[CDDad]

I don't think you would get an ostomy, unless the surgeon could not reconnect your ileum to a healthy area of your colon. The surgeon will not want to reconnect to a diseased area because it won't heal well. If you have "skip areas" of healthy tissue seen on colonoscopy, you should be fine.

But, if you are not doing that bad, why have surgery at all? It sounds like you might want to try meds (or different meds) first?

 

[Grey Hawk]

I don't think you would get an ostomy, unless the surgeon could not reconnect your ileum to a healthy area of your colon. The surgeon will not want to reconnect to a diseased area because it won't heal well. If you have "skip areas" of healty tissue seen on colonoscopy, you should be fine.

But, if you are not doing that bad, why have surgery at all? It sounds like you might want to try meds (or different meds) first?

Idk why. This is what 2 doctors recommended me or remicade. But both said surgery is more of a when not an if.

 

[Kris]

Where at in your colon? It makes a difference where it's at.

 

[Grey Hawk]

Where at in your colon? It makes a difference where it's at.

My cecum and appendix

 

[Kris]

I don't know why you would need a bag for that. I think the doctor has to say that to cover his butt just in case they open you up and find something they didn't see in your pre-surgery tests. Did the doctor say permenant or temporary bag? The first surgeon I consulted with was irritating, because his answer to everything was "maybe, maybe not." My second surgeon (who did my operation) gave me his honest opinion. He was great. Ask more questions, and make them answer you until you feel comfortable. I know it's hard to do, escpecially when you are so young and the news you are hearing is so scary.I know I have gotten the "deer caught in the headlights" look while talking to the doctors. If you can, take a parent or someone else who you trust and respect with you. It's always good to have a second person with you who can hear something you might have missed or ask the questions you forgot to ask. Ask them point blank why they are reccomending surgery instead of trying other meds.

 

[CDDad]

Just beware, sometimes surgery does not improve the quality of life. When I had my first surgery to remove a mass in my transverse colon, my life took a turn for the worse. I was never the same after that. Diarrhea increased substantially, to the point where I was waking up 3 to 4 times a night - horrible.

But, I had 1/2 my right colon removed, which is mostly responsible for liquid absorption. Plus, the removal of the ileocecal valve can cause issues because there is nothing anymore to stop the flow from small to large bowel.

Bottom line, be careful before surgery and know what you are getting in to. Trying Remicade / Humira first sounds very reasonable.