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People who had surgery a few years ago...

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Posted 8/18/2015 9:42 AM (GMT 0)
Can you tell me how often you have a checkup to make sure everything is still well? I don't want to be "that" person who is insisting something wrong every few months and wasting NHS money with unnecessary tests, but on the other hand if the Crohn's does come back, I don't want to let it slide for years.

Also, what tests do you have? Cheers.
Posted 8/18/2015 10:54 AM (GMT 0)
I had/have UC (depending on your point of view) so my situation is different to yours. I'm happy to say I haven't needed to see a doctor (or stoma nurse) regarding it or my ileostomy for 37 years - not since approx a year after my surgery.
Posted 8/18/2015 10:59 AM (GMT 0)
I will still see my GI every 9 months to a year....more at my insistence than his but perhaps after a few years I will feel I don't need those appts. My fear is, however, if I let him go, I will never be able to get in to see him again......that scares me.
Posted 8/18/2015 2:04 PM (GMT 0)
Colectomy November 07. First two years horrible. ....prolapse, retracted stoma, constant leaks, surgery twice more. Then my cousin gave me some Benzoin Compound Tincture. I have had no open skin and absolutely no leaks since.
I have not been to a gastroenterologist or surgeon since. It ain't broke. .......no reason to go

Dan
Posted 8/18/2015 2:58 PM (GMT 0)
Jpouch surgery 14 years ago. For the first 3 years I had an annual scope from my surgeon. Now I go only on an 'as needed' basis. They would still like to see me annually but since I am well I choose not to.

Sue
Posted 8/18/2015 5:39 PM (GMT 0)
NCOT,

My surgeon insisted that I go to my GI annually for scopes for cancer screenings. My GI said that it was only necessary for annual screening if I had my colon removed for cancer concerns and not UC.

I have chronic pouchitis so I am in contact with my GI very regularly and usually have an office visit every 2-3 months. Next month I am going for a SIBO exam with their nutritionist. I've had 2 scopes this year and a CT Scan.

CD by definition is a chronic illness, I think that it is reasonable to watch it on an ongoing basis with office visits, blood work and annual scopes.
Posted 8/19/2015 5:22 AM (GMT 0)
I too am a j-poucher due to a combination of UC and cancer. After this scope my doctor wants to see me yearly for the same to make sure there's no cancer. I think they extend it as time goes on but I don't remember when. I just had my last surgery May of this year.

Personally if I had Crohn's without other issues I would probably go when I felt like I needed too or on a time schedule they recommend if I don't need to be seen. I don't know a lot about Crohn's symptoms with an ostomy but I would presume that if there are inflammatory issues the body sends signals. Best of luck!
Posted 8/19/2015 9:58 AM (GMT 0)
I still have problems with the rest of my digestive system, and occaisionally with my stoma, so yes of course I still see doctors about my digestive system (and about all the other things wrong with me). I don't see how asking what other people do is relevant as everyone has different medical conditions.
Posted 8/19/2015 2:52 PM (GMT 0)
Thanks folks.

I think I feel most like Larasmom about it. I do have a really good GI, but it is difficult to see him. After a decade of crap GIs and even crappier IBD nurses, I don't want to let him go. Maybe in a few years' time I will be relaxed enough to dispense with yearly appointments, but right now I can't see it. I know of a few people on this site who had 10 or 20 year remissions, but the Crohn's did eventually return.

Think I'm gonna ask my surgeon if she knows of anyone who had surgery for Crohn's and it literally never returned. That's what I'm hoping for. **** dealing with this disease again when I'm 60 - ain't nobody got time for that.
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