So buckle up my devoted blog readers, this post is going to be a long ride.
The story begins last night when my drs nurse called with a "question" at 5:30 p.m. I didn't get the message until 6, so I called and left her a message back. She finally called the house around 7 and talked to the hubby. Her question was, "Well I'm preparing for the appt in the morning and I don't have the results of the wireless capsule study. Did she ever have it done and if so did she have it at Cedars? And if we don't have the results do you want to postpone the appt?"
Thankfully the hubby took this call, otherwise I may have melted down immediately, and in his calm, firm tone, he explained that I HAD completed the wireless test more than a month ago and it WAS done at Cedars and that we WOULD be keeping today's appt. The nurse was very apologetic and said she would take care of it all, not to worry and that she'd see us in the morning. (Good news is that they were at least proactive about this and actually preparing for my appt before I got there, who knew drs actually did that. Novel concept.)
Anyway, as you can imagine that just added a bit more anxiety to our plates but up we got and off we went early this morning to brave the LA traffic and make it to our appt on time. The hubby and I didn't talk too much on the drive, nerves a brewing, but he did say that we weren't leaving there without a clear answer as to what the plan was and that he was going to say "Everyone back in the room," if they tried to leave before we got that. Isn't he the best!!!!
We got in right away, I didn't have to sit in the waiting room, did the normal routine of vitals, weight, meds. And everyone is SO nice there. It's refreshing. We waited for a few minutes in the room until the drs fellow came in to talk to us. This part was a little hairy, because she started by saying well the dr that reads the wireless test was reading it right then but that we might NOT get the results during the appt and they would have to call us. Then she proceeded to say that they still weren't sure and that they weren't leaning towards Crohn's but maybe just pouchitis since my earlier scope had shown moderate inflammation but that the upper EGD and pouchoscopy hadn't really shown anything else. She said they would likely put me on some antibiotics to see if that would help. She also seemed to think that most of the problem was with my lazy sphincter and that the Motility guy would really have to be the one to deal with that.
At this point I started to well up with tears and the hubby jumped in and in a nice but very firm tone stated that this was not what we understood from last time and that we are extremely frustrated and that we NEED a plan of action that's more concrete. She was very understanding and said they were doing their best but without the wireless results they couldn't say much more than they had back in December. GRRRR. So I got up on the table and started to really cry. The fellow was so great, she rubbed my leg and told me it would be ok and that they were not going to abandon me and that they were going to figure out what was wrong with me. (Seriously this is the best drs office EVER!) She then examined me and was alarmed at how "tender" my whole abdomen is. She did a quick look at the sore tush and like everyone else, reacted with a little alarm at how ripped up it is. She said she would go and talk to the Dr and that they would come back in to go over everything as a team.
So the hubby and I sat in pretty much pure frustrated and nervous silence -- we both got a few good jokes in because really it wouldn't be our style not to -- for about 15-20 minutes. Then the door finally opened and my dr, the fellow and their nurse all came in.
And low and behold they had just gotten the feedback from the wireless capsule study. Hallelujah! I think the Hubby's firm and really insistent tone, coupled with my early tears made this happen. And so of course I just about started crying from relief right then. They proceeded to tell us that I have slow motility so the capsule didn't actually make it all the way to the end of my pouch before the study ended that day, but that in the part of the small intestine that wasn't able to be seen during my upper EGD and pouchoscopy, there was definite inflammation and small ulcerations towards the top and that the very last picture the capsule recored was of a very long ulceration that appeared very indicative of Crohn's disease. They don't know what part of the small intestine it's in because it was the last picture so another test, a double balloon enteroscopy, is now being ordered to figure out exactly where it is. They also said there was some old blood in my stomach that had probably been kicked back up from the inflammation in my small intestine.
So, what does this mean, it means that we knew it, it is Crohn's and not that it's something to jump for joy over but it's finally a diagnoses, something we can move forward with. We also discussed, as the hubby and I have been saying for months, that I really have two separate issues that need to be dealt with differently -- the sphincter issues causing the fecal incontinence and now the Crohn's.
Hang in there readers, we are almost done for this post. Here's the plan of action for now:
1. The IBD Center's Med Assistant Nidia is working with my GI's Med Assistant (remember her from way back when, the one I buttered up with a gift?) to get quick approvals on the following: a double balloon enteroscopy to be done at Cedars; an X-ray to see if the wireless capsule actually is stuck inside since I never saw it come out (hoping to do this today or tomorrow at my regular drs office); full blood work-up with some special test called the Quantiferon TB Gold, which we'll need so after the results of the balloon test we can decide which Crohn's med to start me on -- it will probably be in the biologic agent family (sounds so Bondish doesn't it); and a follow up appt with the IBD team. We are keeping fingers crossed that the insurance can approve these things fast so we can schedule the test and move on.
2. Today I will start two new antibiotics that are used to treat inflammation in IBD patients. This is in an attempt to calm the inflammation in my j-pouch. The drugs are Tinidazole and Aztreonam. The latter is almost always used as an IV injection drug, so they sent me to a special compound pharmacy for them to make me the pill form -- totally crazy and expensive -- we had to pay out of pocket and now fill out a form to have the insurance reimburse us. But we were laughing that I have to now go to a special pharmacy for a special pill to be made for me, talk about high maintenance;)
3. Need to stay on top of the Med Assistant at Sphincter Man's office (he left me a message yesterday saying that he had finally called to check in with my insurance and they claimed they never received his original fax. So he had to re-fax all the authorization requests, see this post for what that entails, and that it would be at least 5 business days before they respond.) At the fellow's suggestion, I asked Nidia to check in with the spaz (of course I used his real name) and see if he understood the process for getting these things approved, since she does things differently. She said she would, so I'll give it a few days and follow up again. URGH on this because I just had a feeling that getting those referrals was going to be a process, but all I can do is keep plugging along and hoping it gets done soon.
So that's the story. I have a lot of stuff going on in my head and remember these are my feelings and I will process them all in due time and when I say I'm angry or sad or frustrated that doesn't mean I'm not also thankful, happy and relieved.
Happy to finally have confirmation of what I've suspected for so long and glad that we are finally trying some things to get me out of pain in terms of the IBD symptoms. Relieved to know that I'm not crazy, that I haven't been making any of this up or making it worse than it really is. Feeling mad again at my original surgeon for not listening or taking me seriously, which has resulted in me suffering for months longer than I probably needed to and also resulted in a lot of mental strain. Anxious to get the sphincter tests approved and on the road so I can feel like we are getting somewhere on that front too.
Feeling blah because of all the physical and emotional drainage that really came to a head this morning. All the uncertainty and frustration and pain of the last months. The thought that even though we were prepared for this, I now have to come to real terms that this diagnoses is forever and the fact that I was getting rid of a chronic illness when I had my surgeries is now gone. The excitement of really for the first time in a long time believing that there is a light at the end of the tunnel and that the hubby and I may really be moving forward.
I know that this roller coaster of emotion will continue for a long time, but at least it's something. I'm so thankful for my hubby and my mom, who have been unwavering in their support and comfort and understanding of me even when I don't say anything. Without them, I would have been committed a LONG time ago. And thank you to the rest of my family and my friends who have just loved me and hung with me, trying to understand to the best they could how this all was affecting me. And just being there for me no matter what. I've said it before, but I'll say it again, I'm one blessed girl to have so many wonderful people in my life.
I think that's enough of my hot air for now. I'll of course update as things progress. For now I really need a big time nap.
Chronicles of Crap, Out!!!