French vs. US treatment story!
I am diagnosed with Crohn's. After much testing ("trianglation plus") because my (US) gastroenterologist said, "Crohn's is not a diagnosisis to give someone unless you're really sure".
It had been nearly 2 years off all medication with no flares. Darn it. My personal theory is that this one was triggered by a horrible flu that made me feel like I'd been hit by a truck.
OK, 9 days back from a week in the hospital (I'm in France, went to the American Hospital in Paris). The treatment was VERY interesting: more than twice the Prednisone I was ever on in the US, AND THEY LET ME EAT. Regular food. A low-salt, low-residue diet, but croissants, baguettes, and coffee, meat and rice and mashed potatoes and creme brûlée. And liters and liters of Evian.
The doctor said that if I stopped having gas or diarrhea, or my stomach swelled much more, he'd talk to me again, but the food basically just went right through me. After the colonoscopy prep (it was like GoLitely), stools gradually got better. Oddly, that happened before, too. Either it was just time, or the prep did something.
I ate dinner after the colonoscopy prep. At 6 pm before a 9 am procedure. And they said fine to eat up 'til midnight, but I wasn't very hungry.
Sure beat all hell out of grudgingly-rationed ice chips for 4 days, and TPN, followed by the ever-popular clear liquids, which is what I always got in the US.
History:
The initial attack, in 2010, was ("more likely than not"-doctors) triggered by a mystery bug I caught in India. By the time I ended up in the hospital, I'd been on Ciprofloxicin (antibiotic) for 10 days, home, throwing up from the Cipro, and horrible diarrhea, nearly constant. The doctor had called in a prescription for an anti-nausea drug that worked, but knocked me out. He said just had to "tough it out" until the Cipro had time to work. So I had several days essentially sleeping next to, or in, the bathroom, could eat, but was too sleepy, and was one sick sick little bunny before I concluded that I was going to die and called my stepmom across the state, who called an ambulance.
After a day or so, a smart doctor looked at the scans, decided maybe it was time to quit trying to ID the mystery bug and start treating the symptoms, and called a gastroenterologist. They put me on 85 mg. of Prednisone. I felt like someone had turned on the :sun:.
My ankles swelled to twice their size, and I wore those sheepskin bedroom slippers for a month, but that was the only side effect I ever had. Unbelievably, the latest fad at the local high school was grey sheepskin bedroom slippers, so I was stylin'. What are the chances?
After that I had 3 flares, pretty much one every 6 months. Then nearly 2 years fine, on no medication.
When I flared the other times, in the US, they put me on Prednisone, 60 mg, for a few days, and tapered down to 20 mg as fast as they thought was safe, and then gradually down to nothing. And the aforementioned ice-chip diet, with TPN, and finally clear liquids, gag.
Here in France, on the other hand, it was, boom, 150 mg of Prednisone for 2 days, then down to 80, and down to 40 by the time I left the hospital, and I'm staying on 40mg for the next 2 weeks, at which point I see the gastroenterologist again and we talk about treatment options.
I've been home and on the 40 mg for a week and a half now, and no ankle swelling, yay! The new side effect is insomnia (but I'm an extreme night person anyway), but I have no trouble napping during the day. Oh, and last night I had a red rash on my leg. Not raised or itchy, just red like a design. But I'd had a glass of wine. It was gone by the time I woke up (the rash, not the glass of wine. Well, both, actually).
I should add that I take a mood stabilizer and an antidepressant, so maybe that shields me from the mood-related side effects to some extent.
And I'm on a kind-of-low-salt, kind-of-low-residue diet. They doctor said " don't add salt, and check labels when you buy processed food, but you don't have to ask the waiter in restaurants or anything". And avoid lemon juice or vinegar, or anything too acidic. For the semi-low-residue part, I eat white rice, regular pasta, and white-flour bread instead of whole grain, and I only eat cooked vegetables, and only the ones without a lot of fiber. No fruit but bananas so far. Lean meat, chicken, fish, anything dairy is fair game...except the doctor said to avoid soft French cheeses because they have too much salt, but hard cheeses are fine, just check the label. Oh, and he said that if I drink sparkling mineral water, I should drink Perrier, because of the salt...which seems weird, because Perrier always tastes salty to me. We drink mainly sinkwater that's been through a Brita filter, and lots of it. I love water. And cold tea, mainly green tea or peppermint herbal. I have been adding things like honey, cinnamon, tumeric, garlic, coconut milk, dark chocolate to my diet, just in case they work.
As for exercise, I have to walk the dog anyway.
So, that's ma story. So far, Prednisone is my friend, and the treatment of big doses of it and actually eating meant that I came out of the hospital feeling better, instead of weak as a kitten and anemic.
I thought it was interesting (and, let's face it, just pure lucky), because it's so different than what I'd heard from others. But I do really have Crohn's, and I've taken Prednisone 5 times now, and I really haven't had more side effects. Either I should really go to Monte Carlo with my luck, or I really shouldn't, because I've used it all up.
so confusing!!!
