First Post- Background

Hey everyone,

My name is Leanne, if you don't know me, and I've been diagnosed with Crohn's in the last year. I figured I'd start up a blog, since my doctors have said keeping a journal is a good plan, plus people always want to know what's going on with my treatment and progress, so I thought this might be a good way to fill people in. (Plus Facebook notes aren't as fun!) I promise I'll try to keep the gross details to a minimum. :)

Here's my story thus far:

For the past few years, I've had various issues with digestion, and we just chalked it up to some kind of dietary sensitivity and didn't really do much about it. However, in December '06, I woke up to find my ankle severely swollen and barely able to move it without a lot of pain. I went to a walk-in clinic and had x-rays done, which showed no broken bones, so the doctor just assumed it was inflammation of some kind, and gave me naproxen to take. The naproxen didn't really do anything except give me stomachaches, and the swelling spread to most of my other major joints. Around this time my digestive issues went full-strength, and I was having to use the washroom up to 12 times a day on the worst days.

I went to visit my family doctor, Dr. Foss, and she ordered lab tests for all sorts of things- lupus, gout, celiac disease, etc, and everything came back fairly normal except for the amount of acid in my urine, which led her to believe it may have been gout causing the joint pain (which was so bad that I couldn't have my bedsheets resting on the inflamed joints). I continued naproxen and was told to hydrate myself and take iron, as I was also pretty anemic. I guess we still hadn't realised all of my issues were likely connected.

Suffice it to say this didn't help- eventually the swelling just went away mostly, and instead I started getting these large lumps under my skin on my shins and forearms, and sometimes on my wrists, that are called erythema nodosa. I'd had them before back in '04, and the dermatologist had assumed it was an allergic reaction to a Twinrix vaccination. (In retrospect, this was likely the Crohn's in a mild flareup even then.) I had started to lose a lot of weight as well- in Septemberish '06 I was around 170-180 lbs, and by May I had dropped down to 140.

I went researching online (yeah yeah I know, doctors hate people who self-diagnose), and found that my symptoms really seemed to resemble Crohn's Disease, something we hadn't discussed yet. Mom and I were convinced this was the right path to look down for diagnosis, so in May I began to keep a journal of all my symptoms and what I was eating, to see if there were any patterns established. I went back to Dr. Foss and she agreed that Crohns was something to look into, and referred me to Dr. Price, a gastroenterologist.

So finally the ball was rolling! She also ordered an ultrasound for me, which didn't show anything abnormal except a small spot on my liver that they said was common and not to worry about. In June I saw Dr. Price, who, after interviewing me, looking at my journal, and giving me a physical exam, and told me he thought it was very likely I did have Crohn's. At this point my weight was hovering around 115-120 lbs, and my friends and family were starting to get really worried.

So it was good to have a potential diagnosis! I was told by the secretary that I was on a waitlist for a CT scan and a colonoscopy, as well as all sorts of super-fun lab tests (not) and was told to eat very little fibre, and to eat a soft diet.

Meanwhile, my weight continued to fluctuate around 115, and I was losing hair and starting to have sharp abdominal pains quite frequently, so I was pretty anxious to get some treatment started. I went for my CT scan in October, which went very smoothly. Dr. Price phoned me back to tell me about the results, saying I had some narrowing of my colon so I couldn't eat things like corn or seeds that could cause blockage. He asked if I'd had my colonoscopy yet, and was absolutely shocked to find out that I hadn't. Turns out the secretary messed up bad- I was supposed to leave that first appointment in July with an appointment for the colonoscopy- there is no wait list. So I'd been waiting around for nothing. Dr. Price put me on a short round of Prednisone- starting with 50 mg a day and tapering for 7 weeks to 0- and a maintenance dosage of Pentasa (working my way up to 3000 mg a day), and told me to call his secretary's line to book that colonoscopy ASAP. I got it booked for February, and was extraordinarily pissed off that I'd had to wait so long when it should have been done in July or August.

The prednisone was... well... interesting. My Crohns symptoms almost totally went away- I was feeling great- except for some really bizarre side effects! At one point, I had such bad water retention that I looked incredibly pregnant even when standing, and had to start wearing my size 14 clothes again because my belly was so swollen (I had dropped down to a size 4 before this)! I also had very, very vivid and weird waking dreams at night- I'd wake several times and night and think weird stuff like that there were bugs all over my ceiling, and turn on the lights to find nothing was going on. It was bizarre. But I had a ton of energy, and ate so much that at times I felt like a garbage disposal. My hair starting growing back, which was great, and I began to fill out a bit, going back up to 140 lbs then evening out around 130. I finished the pred about halfway through December.

Unfortunately, once I was off the pred, all my symptoms came rushing back, and (bad me, I know) I stopped taking the pentasa a month later because I felt it wasn't working. I tried to call Dr. Price to see if I should try the pred again, but the secretary told me that I couldn't make an appointment or talk to him without a referral (wha???). I tried explaining that I was a current patient seeing him in Feb. for a colonoscopy and just coming off prednisone that he put me on, but to no avail- she just took my number and probably threw it away, as I never heard from Dr. Price. Not a fan of that secretary to say the least.

So I basically just sucked up my symptoms for the time being, knowing that I'd be seeing him in a few weeks for my colonoscopy. And BOY that was that fun- the day before Valentine's Day, too. The prep was terrible- I had to drink 4 litres of this salty stuff called Golytely that tasted like old sweat to flush out my colon. A tip for anyone else reading this who's going in for a colonoscopy- add some crystal light powder to the Golytley, then it just tastes like juice that someone's put salt in- and drink it as cold as possible. Anyway, it was a rough evening, and I had pretty bad nausea for part of it. The next morning I was all cleaned out, and went for my appointment at the hospital- piece of cake, I was conked out for the whole thing. Turns out Dr. Price was so worried about me based just on my appearance and an abdominal palpatation (I think it's called that- he just feels your abdomen), that he said I might be admitted to the hospital to recieve TPN via IV (essentially feeding me intravenously to get my weight back up and give me all my missing nutrients). Luckily that didn't happen, but he did say I had "a lot of Crohns" in my colon, and that things were pretty bad at this point. He put me back on the prednisone- starting again at 50 mg/day, tapering down to 5 mg/day for several months, and no Pentasa this time- and referred me to a Dr. Kaplan on Tuesday to see about getting Remicade infusions (oooh, here come the hardcore drugs now!). He also asked if anyone had told me that they saw what may be a dermoid ovarian cyst on my CT scan back in October- and of course, no, nobody told me that. Thanks. So I was given a really yummy scone and sent on my way home and told to really pay attention to taking meds and stuff.

I phoned Dr. Foss to book an appointment to get an ultrasound booked for that cyst, and it turned out she hadn't been informed about ANYTHING that had happened since she referred me to him! She wasn't even aware of my diagnosis of Crohn's! Yikes... I really need to figure out who's dropping the ball here, cuz I don't think I'm supposed to be filling out my own records with her. So they ordered my CT results for her, and she said she was concerned it may be a pelvic abcess, so I'm going in for an urgent pelvic ultrasound on Wednesday, and meeting with her when she comes back from vacation in early March to fill her in on all this stuff about my Crohn's.

So... I think that's it! Sorry for the novel, it's been a VERY long year and a bit here. And Dr. Price's secretary needs to be fired.

Anyhoo, further updates will come as things happen, and I promise they won't be this long. :)

Thanks for reading!
-Leanne