Today I had my colonoscopy. It was all sorts of blissful, except for the anesthesiologist who quite possibly wanted to give me a bit too much of the meds after he was done with me (Me: "So I'm going to be asleep right?" Him: "Well, it's variable - it depends on how much you can take. We monitor you throughout the procedure." Me: "Oh, well, I'm really big, you can give me tons!" Him (starting to get annoyed): "It really doesn't go by size, it's more age and health." Me: "Oh, well, I'm young and strong! (flexing my arms) So - I won't feel anything, right?" Him (now visibly annoyed): "We'll see about that." Me: "What do you mean?" Him (having the gall to roll his eyes in front of me!): "I told you, it's variable - I will make it as comfortable as possible for you. And you know, people in SOME countries get no anesthetic for colonoscopies!" Me: ..... Silence.) This is when my GI walked in and I promptly told her the anesthesiologist hated me and she replied he was like that with everyone and I signed some waiver, laid on my side for ample butt access, and then I woke up with Matt snickering beside me. Then we went for delicious gyros at our favorite diner. Like I said, the whole thing was pretty blissful.
The upshot:
I do not have colonic Crohn's! Meaning, the disease has not spread, and is still isolated in my small intestine. Yay! This was excellent news. She couldn't peak into my small intestine because it was, of course, way inflamed / full of scar tissue. But bonus!: I also got some really nice photos of my rectum and colon that I can shove in Matt's face when he annoys me.
The double upshot:
We still do not know next steps. I am very weary of another CT Scan. This will be my sixth or seventh CT Scan (see, I lost count!) since November. Under some sort of sonic ultra-violet light, I'm sure my abdomen is glowing from all this radiation. But, I suppose I have no choice. We have to see about that dang abscess. If the abscess is still there, I am most definitely a surgical case. If not, well, then it gets tricky.
Before I went under, I told my GI that I was starting to really lean toward surgery (of course, this was after the sweet, sweet nothings the laproscopic surgeon told me, and another GI backed up). I said I read that only 30% of Crohn's patients who have surgery have to have another surgery. "Look at those odds!" I said, very proud of all the research I have been doing. She tilted her head and looked down at me (I was laying on the stretcher at this point, and the evil anesthesiologist on my other side): "I don't know if I agree with that," she said. "Maybe I'm more biased. Maybe it's because those who do well don't come back to me. But my patients - and my friends who have Crohn's - they've had many surgeries." This shut me up.
When I woke up I took a different route: I told her I'm now leaning toward a biologic med in lieu of surgery. (Being so easily persuaded doesn't work well when making a major health decision.) "The other GI told me that Cimzia 'theoretically' doesn't cross the placenta and is 'theoretically' safe for pregnancy; I think that is the route to go!" Again she did the tilted head thing, breathed out, and said, "I don't know if I agree with that." (Here we go...) "There is just not enough information on these drugs; I don't feel they're safe for pregnancy."
So here's the count:
--I have exhausted the "safer" meds - they just aren't cutting it anymore (although I am feeling a bit better.....hmmm.....)
--Surgery may be a slippery slope and result in a lifetime of surgeries (or awe-inducing relief! who wants to roll the die?)
--Biologics will make any baby I have, have four heads! (sorry for being so glib)
So, until they develop some faux-uterus/female reproductive system so guys can have babies, I'm stuck. (Please don't email me and say I have no respect or reverence for the beauty of the female miracle of birth. "Blech!" I say to that. And to further my argument: "Baby smaby, birth smirth!")
There is one bit of information that really excites me: there are a few different FDA-approved biologics. If I start taking one, but then stop upon conceiving and hence develop antibodies to it, there are a couple of other drugs I could try post-baby. Just because you throw one drug out, doesn't mean the others are no longer options. Or, to continue the baby theme: don't throw the baby out with the bath water! (Did I use that saying correctly? Who knows.)
And no, I am not baby-obsessed. If you spoke to me six months ago, I would of said (and I quote): "Baby smaby! We'll get around to that in our thirties!" Back then, it was all about going back to school to get my MBA (remember how getting a B in statistics was the biggest challenge in my life?), getting ahead at work, and taking silly photos of my dog. Now only one of those things remain (ask Penny). An illness makes everything more urgent; I don't know what the future holds, so I figure the best I can do is get healthy, and take full advantage of my time in remission. It's funny what circumstances can do.
P.S: Don't you just love that above illustration?!
Hey Kathryn
ReplyDeleteGreat blog! And I love the illustration. I write a blog for everyday health called 'a personal take on Crohn's' and really can relate to your blog. I have had Crohn's for 16 years and have been through hell and back with it. I got diagnosed in college so already had it when I got married. It is really hard for me to get my husband to understand - it has been a long process. Sounds like you are more open with yours. I am learning to be more open with mine. Here is the link to my blog in case you want to check it out - there are a lot of people who provide comments and there may be information that will be useful to you. I will definitely be back to read your posts!
Kelly R
http://www.everydayhealth.com/blog/kelly-building-a-crohns-disease-community/
Great news about the inflammation being contained. Also interesting about multiple drug possibilities. Not to mention your devil's advocate physician, and your devil anesthesiologist.
ReplyDeleteNancy
Kathryn, your blog made me laugh because up until the time Kyle was diagnosed with uc, I was obsessed everytime he caught a cold! Funny how life changes the way you worry about things. For my two cents, I would try and have baby before biologic meds. Hope you continue to feel a little better. I do enjoy your blog and have looked at the others too.
ReplyDeleteHi Kelly,
ReplyDeleteThank you for checking-out my little ditty of a blog! I've included a link to your blog on here, along with Karen's colitis blog on Everyday Health. Both I find so informative. I will definitely be adding comments - I've been slowly finding a community of Crohnies online and all this talking / blogging is theraputic, I think. Thanks again for visiting, and I will stay in touch!!!
All my best,
Kathryn
PS: Yes, I'm very open about my Crohn's ... maybe even TOO open, some would say!! Haha. ;-)
Hi Nancy A! (I have two Nancy readers, yay!),
ReplyDeleteI think I agree - if something ever happened to my child, we would of course always wonder about the drugs, and I don't know if I could forgive myself. I waiver everyday.
I'm just learning to take one day at a time. For the past week it's been getting better (fingers crossed), so maybe there is light at the end of the tunnel for this flare-up!