Hi there.
Saw the new GI guy, along with my surgeon. They reviewed everything, and drew a slew of labs. 12 tubes, ordered anything and everything.
Interestingly, the new GI said that he felt I need B12 shots, and he ordered them for me. My last B12 level was a time ago, but it was high, at 969. He said that in the J pouch population, a high B12 actually means I have a **low** B12, because pouch bacterial overgrowth causes a false high positives in patients like me with an ileoanal reservoir. He said many of his pouch patients present with the fatigue I say I have, and it's due to a truly low serum B12, because the ileum isn't doing the best job, and the B12 shot really improves that for them. So maybe that will help, we will see.
He said that 3 scenarios are possible for the perianal fistula I have. One is that yes, I've developed Crohn's disease. Two, that pouchitis caused inflammation, and the straining and inflammation caused the gland to get infected and abscess, hence, a fistula formed. And three, that they are seeing in pouch patients a likely "new" autoimmune issue... that the body doesn't get ulcerative colitis again, but the same autoimmune trigger is affecting patient's pouches 20-30 years down the road, causing similar type UC symptoms. He said that when they send biopsies to pathologists on old pouches, they can't tell it's small bowel anymore, sometimes. That it makes a sort of "colonic" conversion. That's why he said they think there's this new autoimmune issue likely affecting some folks. It's not Crohn's, it's whatever genetic trigger we may have affecting our "new colon." A permanent ileostomy patient would not have this issue.
So scenario 2, likely no medical treatment for, just keep the seton and observe. Scenarios 1 & 3, autoimmune meds, possibly even Humira and Imuran, to try to close the fistula tract, but possibly lower end meds if deemed something autoimmune but not Crohn's. Or if mild enough, no meds for now, and use a wait and see approach.
They told me to stay on Pepcid for my bloating and heartburn for now. Prevacid works better for me, but it thickens my output too much.
My bloating issues may be SIBO related, too, so we might go THAT route as well.
The low-grade fevers I've been running off and on may be related to pouch issues, he's not 100% sure.
I will have a pouchoscopy on June 11, where they will view the pouch and go as far up the small bowel above it as they can. If I have issues in the pouch only, then consider only pouch things; ulcers above it, they get suspicious for Crohn's.
My CRS did the rectal and said I wasn't strictured at the moment, that all felt good. Actually what he said is that "it's a very smooth and pliable anus and she will have no problem with a scope." He's German, and a hoot.
So that's my GI news. All in all, he seemed pretty up to date and spot on. He and my daughter's GI have a once a week meeting between the Children's Hospital team and the adult team, so that's interesting and helpful for them in keeping up on the latest data and transitioning patients smoothly around age 18.
Saw the new GI guy, along with my surgeon. They reviewed everything, and drew a slew of labs. 12 tubes, ordered anything and everything.
Interestingly, the new GI said that he felt I need B12 shots, and he ordered them for me. My last B12 level was a time ago, but it was high, at 969. He said that in the J pouch population, a high B12 actually means I have a **low** B12, because pouch bacterial overgrowth causes a false high positives in patients like me with an ileoanal reservoir. He said many of his pouch patients present with the fatigue I say I have, and it's due to a truly low serum B12, because the ileum isn't doing the best job, and the B12 shot really improves that for them. So maybe that will help, we will see.
He said that 3 scenarios are possible for the perianal fistula I have. One is that yes, I've developed Crohn's disease. Two, that pouchitis caused inflammation, and the straining and inflammation caused the gland to get infected and abscess, hence, a fistula formed. And three, that they are seeing in pouch patients a likely "new" autoimmune issue... that the body doesn't get ulcerative colitis again, but the same autoimmune trigger is affecting patient's pouches 20-30 years down the road, causing similar type UC symptoms. He said that when they send biopsies to pathologists on old pouches, they can't tell it's small bowel anymore, sometimes. That it makes a sort of "colonic" conversion. That's why he said they think there's this new autoimmune issue likely affecting some folks. It's not Crohn's, it's whatever genetic trigger we may have affecting our "new colon." A permanent ileostomy patient would not have this issue.
So scenario 2, likely no medical treatment for, just keep the seton and observe. Scenarios 1 & 3, autoimmune meds, possibly even Humira and Imuran, to try to close the fistula tract, but possibly lower end meds if deemed something autoimmune but not Crohn's. Or if mild enough, no meds for now, and use a wait and see approach.
They told me to stay on Pepcid for my bloating and heartburn for now. Prevacid works better for me, but it thickens my output too much.
My bloating issues may be SIBO related, too, so we might go THAT route as well.
The low-grade fevers I've been running off and on may be related to pouch issues, he's not 100% sure.
I will have a pouchoscopy on June 11, where they will view the pouch and go as far up the small bowel above it as they can. If I have issues in the pouch only, then consider only pouch things; ulcers above it, they get suspicious for Crohn's.
My CRS did the rectal and said I wasn't strictured at the moment, that all felt good. Actually what he said is that "it's a very smooth and pliable anus and she will have no problem with a scope." He's German, and a hoot.
So that's my GI news. All in all, he seemed pretty up to date and spot on. He and my daughter's GI have a once a week meeting between the Children's Hospital team and the adult team, so that's interesting and helpful for them in keeping up on the latest data and transitioning patients smoothly around age 18.
