Saturday, November 3, 2012
#NHBPM Day 3 of 30 - A conversation with your doctor
If I were a betting person, I would bet most people go back to the "diagnosis" conversation. Or maybe pre-diagnosis when they felt like they were teetering on the edge of life and death, I had one of those conversations. Well, not so much a conversation as a statement I guess.
I remember being diagnosed, I mean it had to have happened at some point or I would THINK I'd still have my colon - right? I don't specifically remember WHO shared my diagnosis with me. Was it the reservist in Pensacola? Or did he just say IBD? Was it the GI doc at Keesler? I know I have gone back and forth from Crohn's and Ulcerative Colitis - I ultimately think it ended up as Crohn's Colitis. Maybe we are back to just Crohn's. Hell I dunno.
When I had the diagnosis conversation, it didn't really affect me. I don't know if I just blew it off and thought if I was on medication I was good to go. I don't know if I was in denial and just refused to accept what Crohn's disease could potentially have in store for me? I honestly have no idea. I don't remember consciously having any thoughts like that, but maybe subconsciously? Mabye no one ever took me through a progression of the disease and all the possible end results?
I was in remission at one time for a good stretch, that must have given me a false sense of hope. I do recall researching surgery options once. I was offered a "newer" medication that had just been approved to treat Crohn's disease and I wasn't sure if I wanted to take it and risk the side effects. I thought then that it might be time for surgery but I was encouraged to try this new medication and eventually agreed to do so. Turns out it worked - for awhile. As with the majority of biologic immuno-suppressants, I developed antibodies to the medication and it stopped working; or as the docs like to say I "failed it".
Things were good again for awhile, no major flares. Isn't it sad that I have categories for how bad I feel. You'd think a flare would just be a flare - but no, they have their own levels. Ridiculous.
Through all of that I still never really grasped the severity of my disease - what it's progression and evolution meant for me and my family. Again, denial? Maybe? I think it was a lot of things all mixed together really. I wasn't doing much on my end to research anything on my own and I don't think the docs were preparing me for any "what ifs".
Finally enough was enough - I had the worst flare I have ever had in my entire life. Twice in my life I have really felt like I might die from what Crohn's disease was doing to my body. The first time was the 6 or so weeks before I recevied my diagnosis. The second was the 6 or so weeks before I had surgery to have my colon and rectum removed.
Since surgery I obviously have accepted what this monster is capable of doing to me - my whole self - not just my guts. It functions on so many levels. Surgery opened the door for me to look further into my disease and really try to find out what life may have in store for me living with Crohn's disease.
All of that was to get to why I chose this specific discussion with my doctor. I never really had the kind of conversation that burns into your mind and stays with you forever...until a couple weeks ago. The last conversation I had with a doctor was my new GI (gastroenterologist). It wasn't a rainbows and unicorns conversation. In fact, it kind of scared me.
It didn't kind of scared me - it DID scare me. I am currently scared.
I'm running out of treatment options locally (seems to be a theme for me, after diagnosis I had to leave my hospital and go to another state for treatment because of lack of resources), the hospital I go to doesn't go beyond my current drug of choice. IF it turns out I have disease in my small intestine I am cut off here. I'm done. Nothing else can help me in my immediate area.
Decisions. Decisions. Decisions. I have it set in my mind that the test is going to come back all clear. I know my body - in spite of all the things that have been going wrong, this thing isn't. There is no sickness in there (small intestine). I can't even take myself to the place where the decisions are on the table - when I try to I just end up in tears on the edge of a panic attack.
I do what I usually do. Talk to my husband who always knows how to talk me down. Then I start asking questions. Ask questions of people in the IBD community about their experiences in similar situations. What were the outcomes of testing? What options were they given? What meds had they already taken? What was their decision? Is it working out? Are there any side effects?
I do want to point out that I have mad respect for my GI doc for knowing that my disease seems to be out of his league ( I wish it wasn't! ). I've heard horror stories from other people living with Crohn's disease that make it seem like their doctor's ego got in the way of providing appropriate care. That makes me sad. It takes a much bigger person to say "I don't know" instead of fumbling through a myriad of 1/2 ass "treatments" because they don't want to be beat. We need more healthcare providers who can humble themselves to that level.
Tomorrow - I'm writing about what's in my purse/bag/backpack everyday. That could get interesting. I assume the prompt means what I carry around because of my health issues so I'll go with that. I also have quite the "mom purse" thing going on so I may add that in there just for shits and giggles. As long as you all promise not to get the giggles and shits reading it *wink*.