Long term follow-up care

Hi!

I am 11 years post surgery. My GI schedules me to see him once a year. He does a flexible sig every two years. I hate the appointments! I love the dr, I just hate going. He said that it is important because UC causes you to be high risk for colon cancer so the cuff needs looked at regularly. I am 53 now and have had no problems with my pouch over the years. I struggle these days with joint pain, which my GI said is the UC attacking  the soft tissue. 

You probably should find a GI, even just to form a relationship with in case you would need care in the future.

Best,

Dona

Ive got a new Jpouch, so cant really comment on long term care, but I will say my GI isn't too bothered about scoping me (when I had UC I was scoped every 12 months even though I had no symptoms).  I had figured they would be keen to see inside and how it was all healing, but apparently not.   When I asked when id get scoped he said 'next 5 years or so'.  He went on to say that risk of cancer has been removed so I basically now join the standard demographic for risk I guess.

Of course everyone is different, I had dysplasia in colon but fortunately nothing else, people who had more or if there was more widespread concern might get scoped more I guess.  im a thin guy though, so have very minimal cuff

My GI said he wants to let my j pouch heal before he does a scope. It is only three months old. I do have to get an EGD done every six months because I have at least hundreds of polyps on my stomach. My surgeon has been very supportive and helpful too. I can pretty much go to her or my GI if I have any problems.

I have had a pouch for almost  years.I average 23-31 b/m's daily,going to a gastroenterologist is a non starter,no one has an answer to my problem,i had to recently cancel a surgery for severe aortic stenosis,reason the Cardiac Surgeon advised this was gold standard,hmm good bye doctor,he predicted i would be dead in 2 years,at least the b/m's willstop.

thats 4 and 1/ years

21 year old pouch (!), and I don't see anyone unless I have a problem. When I do have a problem I see my surgeon and she does the scope. It's been at least 3 or 4 years since I've had a scope. Maybe more, I can't even remember. 

C-jay

For years I to would only see my surgeon and he would scope me. However years later when  I started having issues with pouchitis I went to a gastroenterologist for ongoing care. Nothing wrong with seeing the two. I do.

I have a new pouch also.  My first scope will be a year from takedown.  If things look good, I believe my surgeon said I should be scoped every two years.  If signs of dysplasia, it will be more often.  

I had dysplasia in my large intestine and UC which is why it was removed. I thought I read here that dysplasia of the pouch is very very rare? I had a mucousectomy with my second pouch so I don't have a cuff.  Dr Shen still wants me to get a pouchoscopy every year.

I have had my pouch over 30 years and have only recently seen the GI Doc due to a bout with pouchitis. He has said since I am now over 50 that he would like to see me every two years so he can scope me and take a look at the pouch in detail to make sure all is going well.

I am also over 60 and had dysplasia as well, so this may be why my surgeon indicated frequent scopes.  I'll see what he says in July.

ctb23 how long you had you pouch I'm just wondering if you are having lots of bowel movements and how long do you think it will take to slow mine down

If you had dysplasia in the Colon and/or chronic inflammation of the Pouch you should be scoped annually as you would be at risk for rectal cuff cancer. If neither and there are no discernible issues with the Pouch, long term care may not be needed.