Baby Steps

Today was our follow up appointment with Sphincter Man. Although we didn't come out of the appointment with a whole lot more info than what we went in with, both the hubby and I feel like it was a productive experience. We were able to go over everything that has happened thus far, as well as express some of our frustration on how things have been handled. 

First off Sphincter Man is just so personable, he actually sat and talked with us in a casual manner as if the conversation were actually a two-way street, imagine that. He explained to us that, as we had already heard, my case had been presented two weeks ago at the meeting of the IBD minds they have every week. Even though my name wasn't mentioned, Sphincter Man knew they were talking about me. I'm so famous, I mean everybody knows me from some really flattering descriptions -- young woman, UC to j-pouch, major diarreha, diaper rash, pain and poop problems and oh yeah fecally incontinent -- oh they must be talking about that famous Al!

Anyhow, apparently my IBD guy was furious over the BIG mix-up with the reading of my capsule results and it was acknowledged that it was a HUGE mess up on their part. Why am I telling you all of this, well because at least I know they are all talking about my case and trying to put all the pieces together. It means, that as we expected, my case is complicated and not easily figured out, but they aren't giving up. I'm just glad that I'm still top of mind.

As for the sphincter issues, what I already overheard from my test on Monday was confirmed. I miserably failed my test. Boo I hate not being good at things (TYPE A) Anyway, the normal resting sphincter pressure for a female is 40-58mmHg, mine is 22.6. And the maximum sphincter squeeze pressure for a female is 105-165mmHg, mine is 78. Basically my sphincter has no tone or pressure, duh!!!!

So here's where the baby steps come in. Knowing all of this, I still have to do the fecal defecography (March 24) and Hydrogen Breath Test (April 9, have to be off antibiotics for two weeks before I do this and since I'm on the Flagyl now for my supposed pouchitis, that kind of messed the other test up) mentioned in this post. After I do these two things I will have my next appt with Sphincter Man on April 9. 

In the meantime, Sphincter Man is going to talk to my IBD guy and together they will talk with the surgeon and next steps. Hopefully by the time I have my appt on April 9, I will also have an approval to see the surgeon in the week or so after. On my end I'm going to be upping the things I do to "bulk" my stool and the hope is that may at least help relieve some of the leakage.  I will also keep taking the Flagyl and report back to the IBD team in a few weeks. 

I also met in person, Sphincter Man's spazzy med assistant and he was just as I had imagined, very scattered. But hopefully now that we've met in person, he will do what he needs to do to get my follow up appointments approved. When I expressed that I knew my insurance added another bump in my road to getting better and I knew it made more work for the med assistant, Sphincter Man did say to us that's what they get paid to do. Did I mention I LOVE this guy?!

Although we aren't moving along as fast as I had hoped, we are at least moving slowly forward and there is a plan. I just want to get this all scheduled and done. But I'll have to wait some more. Oh well, at least we have a few new pieces of the puzzle and that's all we can ask for.