First few months of jpouch and some issues

I haven't seen a colo-rectal surgeon for 11 years or so. My GI is (I think) better equipped to deal with any issues that arise (unless I need surgery).

Thanks Scott here they seem to deal with surgeons but was thinking of asking my gp to send me to see my gastro again. It's good to see someone else still sees their gastro don't understand why I don't see mine anymore considering it still effects my intestines etc

Some GIs (gastros) ae afraid of J-pouches, but the better ones either already know about them or are eager to learn about them.

In my mind, it is sort of a waste of resources to see a colorectal surgeon for GI maintenance issues, unless your problem is not addressed by medical management. In that case, a surgical aspect is a good idea. Grace, in your case it did make sense to see a surgeon because now you know you have a structural problem, but your GI may have come to the same conclusion. But, it still may not be a surgical issue (at least not yet). I am not sure how the GI's are supposed to become skilled and experienced with j-pouches, if they do not see us.

There is much overlap of course, and some surgeons are just more vested in their patients. But, I like the team approach best, keeping the guy with the knife in the background until needed.

Jan

Jan thanks for reply my new surgeon was in on my op and after reading my notes remembered me because of the complications. Apparently I'm lucky to have the pouch as if it went on any longer i wouldn't of had it. I'm finding it hard to feel that patient surgeon connection maybe he is just different from my old surgeon but lets say I miss my surgeon. This is why I want to see my gastro as I feel I need some normalcy as since my old surgeon retired I've seen lots of junior surgeons who consult with my new surgeon. Not saying anything about the care they've all been great but just it's like a lucky dip you don't know who you'll see the next time. I'm greatful for the time and effort both surgeons put in to creating my pouch I was longer than the 4-6 hour time frame they normally give and by all accounts as I said I was nearly wakening up with permanent stoma (wouldn't have bothered me) so I appreciate the dedication I'm just a tad frustrated.

As for my pouch I'm struggling to see any improvement VSL#3 is helping and the bleeding has almost gone but I constantly feel tired struggle to eat (I mostly just take fluids) and still on antisickness. Sorry I'm not in the best place and usually can cope but it's been a long summer especially saying I waited all summer to hear the results of my barium scan. I presume you have j pouch and wondered if when you output is explosive do you bleed. I bleed no matter what but more when it's explosive. It's not like UC bleeding but seeing the blood brings back the good old anxiety. I figure maybe for me things will take longer to settle but it's just hard to see the progress. I remind myself every day of what I was like in 2012 but to be honest I feel no different from when I had my diseased rectum. I love my pouch in as much as I have control that's brilliant sometimes I get that twinging feeling like spasms but I can hold if I'm not near a bathroom. I love the fact that I know I'm not going to have a leak and don't have to carry extra bags and clothing so these are all positives if I could get everything else to be on power with the control I'd be doing great.

Grace

Have you tried diet change? I had similar symptoms of feeling ill and miserable but went on a low-fiber, low-sugar version of the low FODMAP diet and got tremendous relief. I still have issues (including taking a turn for the worst last week, maybe related to something I ate off the diet?), but generally speaking its helped hugely.

Haven't heard of that diet I don't tend to take a lot of fibre but need some or things slow down way too much on me. It's like catch 22 too much fibre I'm me we out of the bathroom to little and I nearly need the hospital as things stop and I vomit. Will look diet up and give it a try nothing ventured nothing gained.its just frustrating and maybe I was so used to eating everything with my end stoma that I'm finding this part hard. Do you still be lots of mouth ulcers?