Thursday, April 9, 2009

Operation Constipation

Today capped off the week of tests and appointments. I had a Hydrogen Breath Test and a follow up appointment with Sphincter Man. Thankfully the hubby was able to join me for the long day, I'm very thankful for that. We had to be at Cedars at 10 for the Breath Test which was going to take about 2 hours, and then my appt with Sphincter Man was at 1. 

The Breath Test was to measure the amount of Hydrogen in my GI Tract. Apparently everyone needs a certain amount of Hydrogen to keep the system working properly -- too much or too little can be cause for problems. It's a little scientific so that's the most layman way to describe it, it hurts my brain to try and understand it myself let alone explain it to others. Anyway, for the test I had to stop eating last night at 7 and couldn't have anything to drink after midnight. Now as we know from other tests, me with no food, no drink and none of my regular meds leads to a very cranky girl with a fountain of liquid pouring out of my butt. So you can imagine what a fun time it was. When we arrived today, I had to drink a small shot of lactulose (a sugary type substance) and then breath into this little bag every 15 minutes. I couldn't carry on excessive conversation, boo for me but probably good for the hubby;) We were done about 12:15, the technician gave me the results to take to Sphincter Man and we were on our way. 

We had a great adventure getting over to the Cedars Sinai Cafeteria, hitting up about 4 bathrooms along the way. We ate a lovely cafeteria lunch pretty quickly and then on our way out I hit the bathroom again -- fountain I tell you. Well wouldn't you know it, while waiting for me outside the potty, the hubby over heard the security guy say that one of the Kardashian sisters had just walked by (for those of you that don't follow trash TV, they are a train wreck family with a reality show on E! TV) I mean honestly the whole world passes me by while I'm in the bathroom. One of the benefits of going to Cedars is to spy celebs, right? *sigh* I guess I'll just have to watch the gossip shows tonight instead. 

After lunch and our celebrity sighting miss, we made our way back over to Sphincter Man's office. I was thoroughly worn out by this time and again hit the bathroom another time or 2. The front desk lady kindly welcomed me by name and got me all registered and we were taken back to a room pretty quick. Sphincter Man came in -- we love him -- and we started down what ended up being about a 45 minute conversation. The gist of it is this, after reviewing my test results from earlier this week and talking to me about what the drs had said, it appears that somehow my sphincter was damaged muscularly (so not severed nicely but the whole muscle is damaged.) In a nice and not at all leading way, Sphincter Man asked if the surgeons I've seen in the last week had mentioned if they speculated on how that might have happened. I said no but that it was one of my big questions. He said that it might be information I may need or want for future decisions. And he said as a person not just as a physician, he would be extremely frustrated by this outcome. So bottom line, what we took away from this part of the discussion was that if we want to pursue legal or even just insurance action, we might want that info. I really appreciated him being a real human with us not just a dr. From there we discussed how awesome the British Dr from Tuesday is and that his report's final line was that my sphincter is gaping open. Sphincter Man said that I would need to talk more to the surgeons about next steps to rectify this, but that I might need to start coming to terms that having a permanent ostomy might be the best option. We assured him we have already started thinking about this. He apologized that this has happened especially since I'm so young. He told us that I've been the talk of a lot of conversations around there and that my red bum was always at the top of the list of things to discuss. My butt is famous!!!!! 

Anyway, in the meantime he said he wanted to try and get me some temporary relief. This is when he took out the Breath Test Results. Now when the hubs and I looked at the results over lunch, we assumed that because the graph didn't show big lines and that my line was below the baseline, that must mean it was all good...NOT SO. I guess what my test showed is that I have NO Hydrogen and that's probably because another bacteria is in there eating it up. This could be contributing to my other issues -- abdominal pain, bloating, etc. So I will be taking two antibiotics over the next 10 days -- Xifaxan and Neomycin. These are also apparently usually used for pouchitis as well. (Oh yes and he finally clearly explained the results of the capsule study to us -- basically they will need to watch me closely because it couldn't clearly rule out Crohn's and that knowing that will probably affect some of our upcoming decisions. Lovely, and still so vague.) So we'll see about these antibiotics, I'm to go to the dr for stool samples if my diarrhea or the blood gets worse. Hopefully it will help eliminate some of these other pain issues I'm having, not related to the sphincter. 

We are also now on Operation Constipation. The theory is that if I can be constipated for a little while, I can get some temp relief from the constant flow of crap and the butt burn that accompanies this. So for the next few weeks I will be doubling/tripling up on my stool bulking measures. Obviously I can't do this forever because as you know and as one dear friend REALLY knows, being constipated is it's own brand of hell. But I'll try it to see if it helps in the short run, at least to get us through our cruise. 

So here's the plan:
* Take the new antibiotics for the next 10 days
* Embark on Operation Constipation
* Call Dr. F, the surgeon from last week to discuss all that this week unveiled (did this on the way home and while typing this post he called back with my "options." I'll do another post following this one with the results of that convo -- FUN times, can't wait, love this!)
* Call my Primary Care Dr to have some lab work done to check my liver and gall bladder to ensure the pain I'm having under my rib cage is not related to either of the above organs. (I did this on the way home as well and have the appt next Thursday.)
*We already knew I was full of crap, but now hopefully it will just be stuck in me!*

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