Wednesday, December 10, 2008

More Pieces of the Puzzle

The Results Show has come to an end and here is the recap. No clear winners were announced today, but a few more pieces of the puzzle have filled in.

Overview of Diagnostic Tests:
1. Upper EGD/Pouchoscopy -- Upper GI tract shows no significant inflammation. J-pouch shows moderate (they rate things mild, moderate, severe) throughout with more concentrated areas at the cuff (the place where my j-pouch connects to the remaining part of my rectum) and also at the anastomosis site (the place where the j-pouch begins at the terminal ileum (the j-pouch is made out my small intestine and the terminal ileum is above the pouch, higher in the small intestine.)  This test also showed that I have little to no sphincter muscle tone/control.

2. MRI of the Pelvis -- Did not show any significant inflammation or any large fistula tracts or abscesses. Does not mean that little ones don't exist

3. Pouchogram -- showed some small narrowing in the pouch and some inflammation as well.

Holy Crap (pun intended), What in the heck does that all mean?
Well basically it means that because of the inflammation in the pouch and the top of the pouch and cuff and my other symptoms, the dr is leaning even more towards Crohn's disease. He has decided at this time to not start treating with meds so we can try to delve further into the puzzle. They want to make sure that it's not just just have pouchitis rather than Crohn's of the pouch -- these would lead us down different paths depending. He believes we need to do a few more tests to look into where the other areas of inflammation are hiding. (I had an elevated temp and heart rate, two indicators of inflammation in the body.) 

As for the sphincter he doesn't believe that's causing my pain and other issues, but is obviously what's causing my incontinence problems. 

Ok, so now what, you ask?
I get to call my favorite person the med assistant (I'm kind of nervous because I'm sure I'm not high up on her list either.) She will have to process the following referrals for me. Woo Hoo we get to start the whole fun referral process over again, I HATE, I mean LOVE HMOs.

1. Wireless Enteroscopy -- I swallow a camera and it takes pictures of my entire GI tract. They are most wanting to see the portions of the small intestine the other tests couldn't get.
2. Consultation with the GI Motility specialist -- Basically sphincter tester guy. They will do some sort of diagnostic testing on my little lazy muscle and then decide treatment -- anything from biofeedback to surgery...doesn't that sound grand. But at least it will help me stop pooing my pants on a daily basis.
3. Stool Studies -- fun, fun for me. They want to ensure that I don't have any bacteria like C-Difficile (remember I had that way back when) 
4. A follow up visit with the IBD team once all of the above are completed.

How much is the Med Assistant going to love me, I'm going to take her a nice treat to bribe her cooperation out of her:) Think it will work? 

So all in all, what we expected, no definite answers, a few more tests, but the good thing is that a few more of the puzzle pieces have been put into place and we are hopefully getting closer to the real deal. The dr reiterated to us that we are in solution finding mode and he apologized that we didn't have anything concrete today. Again, the experience at Cedars was above and beyond, their compassion combined with their intense knowledge still amazes me after all the crap we've gone through. 

So good things did come out of today, and we are thankful for that more than we can say. So nice to know that people really want to help and that they really believe what I'm saying. But it's still frustrating not for anything in particular but just because I want it to be over. I know, I know, we are moving along, but that's a lot easier to say when you aren't on the never ending road. 

Will let you know as things get approved, probably at least a week or so until the first ones start rolling in.


Aim said...

Hmmmm, darn I was hoping so much that they would say "Ah, here is what is wrong, let's just do this and it will be all over!" I suppose the news (or lack of it) wasn't surprising to you but still a bit disappointing I'm sure. I guess your road to recovery goes further, but at least it didn't dead hope is still on the horizon. Hurray for that! Thanks for the much anticipated update. See you tomorrow!

Mrs.Newton said...

Definitely agree with all of Aim's comments. Totally frustrating, but reassuring that they are in "solution mode" and seem to match your determination. Every day we are closer to some answers....Hopefully that day will come very soon. XOXOXO

Lauren said...

Yay for de-lurking! Now I have a new blog friend!