Crohns surgey. Is a colostomy bag needed?

[joe-swift]

Hi guys,

Sorry I am asking so many questions but already you people have already answered so much I feel confident in asking

Ok so I was diagnosed in sep 2012 with crohns disease of the ileum. Recently my G.I. has referred me for a colonoscopy because of my sudden urge to have bowel movements and occasional diarrhea. She is concerned that maybe the disease is in my colon too. My question is that If I am given no option but to have surgery which is looking likely will I need a colostomy bag? Is there any way of having surgery and not having one at all? I am only 23 and fear that it will be really difficult for me to have a relationship with anybody if they knew I had a bag. Its a terrible thought to have but I guess that's just what some people are like. Thanks so much in advance. You guys have been so good to me since I joined

 

[afidz]

Have you had your colonoscopy yet?
Just as everyone is different in disease progression and what helps or doesn't help, every surgery is different. Its hard to say if you will or will not have a bag if you do need surgery.
I use to have the same worries as you about how I would manage life if I ever needed a bag. But since joining this site I have heard so many positive inspiring stories of people who have them (even younger than you or I) that can now live life to the fullest.
Here is the link to the stoma sub-forum, take a look around there, you may get better answers than you would anywhere else in this website.
http://www.crohnsforum.com/forumdisplay.php?f=46
Also, there is a support group as well, to join it all you have to do is type a response or click the button at the top to join with out posting in it
http://www.crohnsforum.com/showthread.php?t=45979
hope this helps!

 

[Cosmojo]

I am only 23 and fear that it will be really difficult for me to have a relationship with anybody if they knew I had a bag. Its a terrible thought to have but I guess that's just what some people are like.

Hey Joe, I'm 22 (female) and do not have a bad but I totally get it, I know that I've been lucky not to so far, but some day in the future I might need one yet. Is it bad that I worry about swimsuits and that I wouldn't be able to wear cute dresses ect? Honestly yea it stinks to think about but right now I'm with someone who has always been really supportive of this ever since we met. It helps that he has had family with severe health problems so he understands a lot of it, but point is, there are people out there.

PM me if you ever need to vent or have any questions, I was dignosed in high school but have had symptoms almost all my life, I like having ppl my age to relate to about this stuff, its always been helpful.

 

[PsychoJane]

Hi Joe!
Just to say, every surgery does not mean the need of a bag. Certain resections won't or only require to have an ostomy for a few months to give a chance to your system to heal. Also, having a bag like Afidz said can really bring a quality of life for some. I never had the chance to have (without any derogatory intents here: "a vanity dilemma"). My surgery was needed in a pretty urgent manner. I don't know if Id appreciate it on a different level if I had lived with urge and pain for years before getting it. Within 3 months of diagnosis I had to get the surgery. Anyway, the point is that I've lead a normal life with it and I don't regret it and I've been able to get relationships with it.

 

[valleysangel92]

It does depend on what operation you have, but yes it is possible to have an operation without having a colostomy bag. Ive recently had a hemicolectomy (removal of part of the colon) and a colostomy was only mentioned if the re-join ruptured after surgery and there was no other option. Its pretty rare for re-joins to rupture though, infact my surgeon has never yet had it happen.

If surgery is the only treatment offered then your surgeon will be able to tell you about the likelyhood of a need to create a stoma. Sometimes it is a case of "we'll see when we get in there" but they usually have some idea.

 

[hbrekkaas]

I didn't end up with a bag, but they didn't know what would happen when I went into surgery. I was marked for a bag (so they knew where to place it) just in case. I got very very lucky. No one thought I was walking out of there without one. So no, not every surgery ends that way.

 

[joe-swift]

Thank you all very much for your reply's. I am sorry to hear that some of you have been in the horrible position of needing surgery. I can only imagine the worries you would have had. I feel bad whining about myself when ye have had it worse than me that required surgery. I wish all of you well with the disease and hopefully someday all of us can be cured. Thank you

 

[valleysangel92]

Dont feel bad about asking questions, its perfectly normal to have worries about this sort of thing and this is the perfect place to talk about those worries. If you ever do need surgery remember that we are all here to help you through it and share our experiences with you.

 

[shamrock15]

I had four surgeries before I needed the bag. Even then, it was only temporary in my case. Funny thing, almost everyone who gets the bag is actually grateful when they get them. They do give you a lot of your life back. It's almost like a win-win situation. You will almost certainly get relief after the surgery, and if your doctor puts you on a maintenance medication, you should be able to live quite a good life afterward.

 

[joe-swift]

Thanks for being so supportive guys. Il keep you posted on how I get on Friday

 

[Marx]

Hey Joe, I'm 23 also and possibly might end up with a bag so I totally get your concern. The truth is, nobody can tell you for sure atm. It depends how bad your situation is and also your own individual circumstances (weight, protein levels, medication amongst other things). Once you have your tests done and speak to your surgeon he will hopefully be able to tell you the probability of needing one. Until then, my only advice is to cross that bridge when you come to it. Don't think about it (easier said than done, I know) but try and be positive.