At 37 years old, and an otherwise healthy wife and mom of 4, I was officially diagnosed with Crohn’s Disease.
Over all, it was simple to diagnose, it was just a matter of my not having insurance and suffering for several months before my body finally said, “Listen, you must do something and do it now!”.
In hindsight, I see a few small things that were the beginning of my battles with Crohn’s Disease… First, I was getting nauseated from eating certain foods (onions, garlic, etc). I took a while for me to link which foods were making me feel so sick (not to mention I went through a few pregnancy tests – not that I thought I was pregnant, but to prove I wasn’t). Then this rash started… it was bizarre.. my shoes or socks rubbing a funny way would almost instantly produce this crazy itchy rash, and within a day (if I could stand to no scratch it), it would be gone… or, maybe not.. sometimes it was the size of a dime, other times the size of a dinner plate. I thought it was a spider bite, heat rash, yeast (chest area).
Then in January 2007, out of the blue, one day, I had the worst cramping and it felt as if my uterus were 10x too big.. swollen.. it hurt to sit, hurt to walk.. My regular family doctor had the day off, so I saw an associate. She thought I had Pelvic Inflammatory Disease – which, btw, is said to be caused by sexually transmitted disease.. I’m married.. so the implication was either my husband or myself had been cheating. Luckily, I had done a little research on PID and knew that there actually are about 20% of cases that are unexplained, or caused by other internal issues.. I didn’t stress on her opinion of the matter.
She shot me up with an antibiotic, gave me a round of strong antibiotics to take over the next week and wished me luck.
Within the week, I was dehydrated, sore, was in major pain and having huge issues with diarrhea and knew that PID was not my issue… I was uninsured and worried about getting our family into a financial problem.. I was hesitant to do too much. Regardless, I ended up at the hospital where they ran a few tests and determined that I had some lower intestinal issues going on and needed to follow up with that.. but otherwise, thought things were ok. Gave me fluids, pain medicine, antibiotics and told good luck.
A follow up with my family doctor… he didn’t feel that PID was my issue, but suspected I had either Crohn’s Disease or Colitis.. to treat either, I would need to see a Gastrointestinal Specialist.
We’re in to March at this point, and off to the GI Specialist.. who informed me the tests I would need… particularly a colonoscopy (and just how costly a colonoscopy is).
Symptoms I was having now were mainly severe pain and vomiting (with no rhyme or reason in regards to food)… and quickly, weight loss was becoming a major concern.
By early May of 2007, I had lost about 20 pounds – for most this might seem nice, but I was starting out at about 132 on a small-boned 5’7″ frame and getting down to 113 is downright sickly. My mood was horrid, I wanted to sleep, I was in pain, I never knew if I was going to throw up my food or not… it was bad, worse than bad.
My mom came through for me and paid for the colonoscopy… as soon as it was done he let us know how bad things were and immediately started me on antibiotics (metronidazole (Flagyl) and ciproflaxicin) as well as prednisone. Later, asacol and azathioprine (Imuran) was added to my daily medicine intake, a good multi-vitamin and because I had relux so bad (apparently part of why I was throwing up so much) aciphex. For pain management, I’ve been given vicodin, then norco and percocet.
Am I all better? No way.. I’ve been battling to get things under control ever since and just recently ended up back in the hospital. Crohn’s Disease is for life… Now I have to figure out how to cope with it and make my body work with it.
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I know how you feel my daughter has had crohns for years since she was 16 she is now 40 and it is a struggle to get thru the day. Thanks to a wonderful husband she does make it. She has 3 beautiful girls which they have adopted and we pray for her every day. She does have insurance but her doctor here in town has opted out of medicare and so her blue cross is no good. Now she has to find another doctor or pay cash sooooo what good is insurance when your doctor does this. Her other doctor wants her to find a gastro closer to home good luck .She drives 4 hours to the second doctor and now they want her to find one in town .She was sent up to a bigger city because nothing could be done for her here. She has had many operations since she was 16. Now the shots she gets seem to help but sometimes the pain is unbearable . I just wish doctors would listen and realize nobody wants to be on pain med but if it helps you get thru the day go for it.
Yes.. this is one of my biggest complaints about crohn’s disease (and Ulcerative Colitis), the lack of pain medications doctors make available. I am not a “text book” case when it comes to my crohn’s disease – a huge part of my disease is pain, plain and simple. If I didn’t have a doctor willing to give me pain medication (at his suggestion even, not mine), I’d likely find a way to get from some place else. I cannot live life in that sort of pain. I truly feel for your daughter. No one should have to live in pain. It isn’t living if you are in pain all the time, or even half the time… You can’t do normal things with your family, etc. And to have people seemingly judge on top of it.. it’s just worse.
I hope your daughter finds a good doctor – that’s hard to do too. I went through my own issues with poor quality doctors (at least in regards to my situation) and then listened to my sister this past winter as she did the same.. it’s so frustrating. With this disease (or UC, as my sister has), you don’t feel like doing any more than you absolutely have to in order to get through the day.. to do anything more just seems like a mountain you don’t have the energy to climb. My sister would say “yes, maybe I’ll do that” or “maybe I’ll call them” or “yes, I should”, whatever situation was being discussed at the time… but I knew she was just going to lay down, because she didn’t have the energy to cope with any more than she already was…. and she’d laugh, because she knew I knew exactly what it was like.
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