Post-pouch GI care?

My experience. 

This all started 3 years ago. 

My GI dr retired while I was in the hospital halving my colon removed but I knew he was retiring.  He was good too.  No BS Dr.  Upfront and honest.  I miss him. 

But anyways.  I thought when I was all done with this I would go to the same office as several GI Dr's work there and they would hook me up and my records would go to the new gi.  Thinking I would have to start over with a new gi Dr.  

But my surgeon told me I didn't have to go back to the gi. 

I asked her first if I should and she say no.  That I could just keep seeing her from this point on.  And that's OK with me.  She knows more of what is going on with me than any gi would.  She did all the work and saw all the plumbing.  So like I said ok by me. 

I have been seeing her since.  She removed my pouch.  She installed the stoma.  She knows me and what's been done to me because she did it so I would rather see her from here on out.  I am not having any problems.  Well one.  Incision will not heal in one tiny spot.  Even after eight months.  But it's a common thing.  But I see her once a month to check in.  I don't get charged for it as it is continuing care.  

Besides.  I like her.  

So.  No.  I will not start all over with a new gi.  

I'm happy in the situation I have. 

Richard 

I actually really like my surgeon, and he's always helpful, but it's just impossible to get in and see him when my problems are actually happening. The last couple times, my appointment ended up being way after things have resolved.

I have been seeing a GI since about a year post op (1996). My surgeon was super busy and has since left that department and is the head of the bariatric surgery department. I am on my third GI since then. First one retired. Second one left the practice, and I am quite happy with the third. He is willing to try new things and adapt to changing knowledge. His specialty is liver disease, but he is very well rounded in the GI field. Actually, my husband and son also see him for their UC!

Jan

I see my GI (of many years) at least annually just to check in and discuss potential remedies to problems, diet, etc.  My surgeon now  wants me to get a flexible sigmoidoscopy every 1 - 2 years.   I'm glad she suggested it and last week's found some mild pouchitis which she didn't find manually with whatever she looks through.  So I'm on 2 antiobiotics and one of them will make me sick if I drink alcohol.  Damn, I miss my 2 evening martinis but I can resume them on Sunday.   The main reason for the flex-sigs is to check for cancer even though I have been declared cancer-free  since my July 08 total colectomy.   I really appreciate her conservative approach.  I mention this here because the GI could do this just as easily.   It's good to have an ongoing relationship with both the surgeon and GI because when you are in trouble, the odds are double that you will get in to see one of them or one of their colleagues if they are both away.    

I've had my pouch for 37 yrs and rarely had a G.I follow me. (not always a good thing)

My Surgeon did a great job on surgery and post-op follow up for the first 3 yrs (a one step ended up being a 3 step so we had plenty of time to see each other).

Since then I moved to Europe and was hung out on a limb for years...no one knew what a k pouch was and even j pouches were not done where I lived so my only resource was a surgeon and a wonderful GP who was a naturopath too and did wonders with my digestive system.  She was the first to talk to me about the benefit of pharmaceutical grade probiotics back in the 80's. 

We worked together at the beginning of every season to regulate my body and my digestive system by using Oligo-elements (base mineral support), natural supplements and fasting. ( I fasted for 24hrs at the beginning of each season to reset my system)

She kept my body and pouch alive for years. 

If it was not for 'functional' surgical problems with my pouch I would have remained very healthy.

I have/had a great radiologist who I could call for pouchoscopies, ultrasounds and scans as I felt I needed them. That for me was the greatest plus  I had. 

I would then take the results to my surgeon if needed or send them home to my pouch surgeon. 

My recent generalist allowed me to lead the dance, asking for specific blood work if I felt 'pouchy' or iron if I felt weak.

I am my own best advocate for my health (unfortunately) in a world where the only advice that the biggest French colo-rectal surgeon could give me whenever I had pouch problems was ' to have it removed and slap on a bag'! 

This country is not pouch friendly.

Unless you feel that there is a real underlying problem then you may not need one.

Sharon

Thanks, everyone, for your replies. I know there's always a real range of experiences with this particular health reality! 

Of course, since my recent crisis cleared up (with the help of a visit to Emerg for a fluid top-up), I haven't been thinking about it as much. But, I know I should try and put a long-term solution into place.

To that end, I think I'll talk to my surgeon at our regular follow-up appointment this winter, and see what he thinks about the possibility of bringing a GI on board to be part of my health team. If he agrees that this is prudent, I'll contact my GI from before my surgery, and see if he's willing or able to participate in my care. If not, maybe another doc from his practice (I met several of them over the course of my pre-surgery treatment, and they all seem pretty good).

If memory serves, my surgeon told me at our last visit that he may want to scope me this year, as it will be 3 years post-pouch (wow, where does the time go?), and I haven't been scoped since before my last surgery. So, I have that to look forward to.

I think overall I've been doing pretty well with my pouch. Things do go haywire from time to time, but always seem to self-correct, with extra TLC from me (knock on wood!) As you said, Sharon, I have to be my own advocate for my health care. As common as this disease is, there seem to be few doctors out there who truly understand it.

Thanks to you all, for reading and responding!

KS

Sharon, it's surprising to me that Paris isn't pouch-friendly. When I was researching the possibility of a J-pouch for indeterminate colitis the two centers that had studied it were Mayo and a group in Paris. Mayo concluded that the pouch was a bad idea in that situation, and the Paris group came to the opposite conclusion. I thought the Paris group had done a better job analyzing their data, and on that basis went ahead with J-pouch surgery.