Not everyone knows the whole story, and it seems like people might like to. So I'll start from the beginning.
In the Fall last year (2010) we decided (after praying about it) that it was time to start our family. After 5.5 years of marriage, it's about time, right? So I talked to my doctors, since I was on various medications at the time (Prozac for anxiety, and Retin-A for acne). They wanted me to ween of the Prozac, and stop using the Retin-A, then wait 3 months. (Retin-A causes really bad birth defects, so that was why they advised 3 months).
So I used my three months wisely. Exercised, read a lot about pregnancy, birthing, cloth diapers, etc. I even got some stuff to put away (some cute clothes, cloth diapers, etc). In February of this year, I went to see my ObGyn to ask her some questions, and make sure I was good to go. She gave me the thumbs up, and said most women get pregnant within 6 months of trying. After that appointment, I tossed the BC pills.
We did our thing. And I burned through several home pregnancy tests, because I was impatient. And because going off the BC made my periods wonky. I tested often, because I was timing my cycle, and because I start to feel tired a lot, and have nausea and other stomach issues. I think in late April, or early May, I was sick continuously for 1-2 weeks. Every time I ate I got horrible stomach cramps, to the point where I'd be curled up on the floor, moaning. So I didn't eat much, and switched to crackers, plain rice, noodles, and Boost. I went to the doctor after the 1-2 week period. They thought it was maybe gastroenteritis (aka stomach bug). I thought it might be my gallbladder.
You see, back in 2003 something similar happened. I couldn't eat anything with fat in it. I'd get the pain, be running off to the bathroom, blah blah blah. At that time I had an ultrasound done (they were looking for gall stones), and they found nothing. My doctor at that time said "well, just avoid the food that set it off". (Side note, my dad saw the same doctor back then, and was diagnosed with Crohns in 2005. That doctor missed all of his symptoms too. Needless to say, neither of us use her anymore). Anyway, so I took the doctor's advice, and I lost 20 lbs that summer. (Which was good, because I went from overweight to a healthy weight, and kept if off since then). Eventually I started feeling better. And would just have sporadic incidences.
Back to the current year...
So the doctor ran some tests. Everything came back normal, except my Sed Rate. The normal is about 10, mine was 92. The problem with this test is it's extremely non-specific. It basically means there is inflammation somewhere in the body. After that the doctor referred me to a Gastrointestinal (GI) specialist. The GI's office called to set up a sigmoidoscopy (basically a lesser colonoscopy, where they don't give you knock-out meds). The prep for the sigmoid is identical to a colonoscopy, in that you stop eating the day before, and they give you laxatives to take. Not knowing any better, I took what they gave me, which was basically a gallon of salt water solution. With this solution, you drink 8 ounces every 15 minutes for 4 hours. I did my best, but I couldn't do it. It kept making me throw up (not the desired effect), and after a while, when I could keep it down, I was so full of laxative drink, and regular water that I felt miserable. (Aside from the misery that is laxative drink). In the end, I only ended up drinking about half. But it was (ridiculously) moot, since I had a panic attack, and they couldn't do the procedure. (And the kicker) I would have to come back for a colonoscopy in a couple weeks.
That was just a really difficult and aggravating day. I think I sobbed the whole way home. Anyway, for the colonoscopy I requested the laxative pills. The nurse said the pills weren't covered by my insurance (as I hadn't met the $250 drug deductible, since I always get generic). I told her I didn't care, I would pay what I had to, to not have to drink that crap again. So I had to go to the pharmacy to pick them up before I left, and I was still crying, which was embarrassing. But the pharmacist was so nice, he asked if I was doing ok. I told him I'd been better. When he handed me my pills, he paused on my hand for a moment and said I hope things get better. I could not have appreciated that more. By the way, the pills cost $200.
I was nervous for the colonoscopy. I'd never been under any sort of sedation before. In fact the most anesthesia I'd ever had was Novocaine. There was that, and I wasn't thrilled to have to fast, and use laxatives again. But the pills were much more pleasant, like 100% more. But toward the end of that (like the last 4 pills), I was once again full of water, and my stomach was hurting a lot.
Everyone said the prep would be worse than the procedure. They were right. The staff took me right back, I changed, and they hooked me up to a saline IV. That was actually my first IV too. Then they wheeled me into the room, the GI talked to me a bit, then came the drug. I don't know what it was, but the room started to spin, and the next thing I knew Aaron was there, and they were telling me to wake up. The doctor came over and said I had Crohns, which is what he suspected. I guess I asked some questions, which I don't really remember. Except, I do remember asking the doctor about getting pregnant. He told me it would have to wait til I was healthy.
Aaron drove me home, which I don't remember. I guess I asked the same questions a lot. He set me up on the couch, and went to get me some pho. I slept more.
When I came to, Aaron reviewed my meds with me. Prednisone (to control the inflammation), Asacol (my main Crohns drug), and birth control again. I'd lost about 13lbs from when I got sick. That wasn't bad, I would have looked good, if I didn't look so sick.
Prednisone became my new problem. I basically had all the side effects: insomnia, acne, hair growth, weight gain (along with feeling hungry all the time) and mood disturbances (being either angry or depressed). Originally the plan was to leave me on prednisone for an extended period, six months I think. But I told him I needed to get off it sooner. (During this time I also started using Ambien and Prozac again). So I started weening down, but then the Crohns symptoms started returning.
Enter the new drug: Imuran. An immuno-suppressant also used for kidney transplant patients. In my case it was so my gut would stop attacking itself. But the Imuran came with its own side-effects: I was tired all the time, my stomach got very acidy, and my hair started falling out. Not to where it was noticeable, yet. The GI said if I continued to take it, it would actually get worse. So, after using the Imruan for 3 months, now I'm on a new drug, Entocort.
At my one month follow-up, I asked again about getting pregnant. The GI said I should be in remission for 6-12 months, and have no flare-ups in that time. I then asked what the likelihood of that would be. He said about a third of the patients are cronic, a third will have occasional flare-ups, and a third will be fine after starting initial medication.
So I may never be able to get pregnant. I've been trying to be ok with that. But it's hard. I don't mind the idea of not having a kid with our genes, I don't care about that. But we can't afford to start the adoption process yet(due to the expense of law school, and me being the only worker), and even once we start it, it can take a long time to get a kid.
That's been my year. It's been crappy. But I'm wading through.
Rachel, thanks for sharing your story. I am sorry you have had to go through all of this. You are an amazingly strong woman.
ReplyDeleteI will pray for you, I know just how awful health problems are.
Thinking of you xoxo
I have been horrible about keeping up with blogs. But what happened with the Behcet's diagnosis? Was that wrong? Do you have that and Chrons?
ReplyDeleteI can only imagine how hard this year has been for you and Aaron. Hopefully you can have relief from your symptoms and answers to your prayers this next year. I hope this doesn't sound bad or insensitive to your situation, but at least you know what's wrong with you. I've had an issue for almost 2 years now and despite several doctors, trying several different meds and biopsies, they still don't know what I have and I still haven't found relief.
Rachel, I think you're great. You are strong, determined, and sensible. I've always admired how you have taken your health and the need for exercise seriously and worked hard for it. Whenever or however you become a mother, you will be a fantastic one.