- Joined
- Nov 9, 2013
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French vs. US treatment story!
(This is edited/ reposted from The Miserable Prednisonites thread, because I thought that the overall treatment was interesting. Kind of makes you think about how peptic ulcers were treated all those years, before they figured out about h. pylori and antibiotics. Lucky me, in my case, Prednisone is my friend!)
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. In my case, the original attack came after a random mystery bug I caught in India, and my immune system goes into overdrive when I catch something it doesn't like. 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.
So... 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. :emot-waycool:
Regular food. A low-salt, low-residue diet, but croissants, omelettes, baguettes, and coffee, meat and rice and mashed potatoes and creme brûlée. And liters and liters of Evian.
To be fair, I did ask. I said, "do I have to go on a yucky liquid diet, or can I eat?", but that was mainly because he'd been talking for 2 minutes and hadn't yet mentioned TPN or clear liquids. I don't think it was just because I asked!
The gastroenterologist said that if I stopped having gas or diarrhea, or my stomach swelled much more (it was seriously swollen, not just a little) 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's happened before, too. Either it was just time, or the prep did something. I know, "theories are like assholes (everyone's got one)", but I think that maybe the prep clears out some of what my immune system is going whacko over. Anyway, thinking that makes doing the prep less miserable, so I'll stick with it.
I ate dinner after the colonoscopy prep. Roast chicken with mashed potatoes, bouillon, baguettes, cheese, and sorbet. 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.
The initial attack was in 2010.
After that I had 3 flares, pretty much one every 6 months. Then nearly 2 years fine, on no medication for the past 1-1/2.
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, gak.
Here in France, on the other hand, it was, boom, 150 mg of Prednisone for 2 days, Plus IV fluids, painkillers as needed, mesalamine. Solu-Medrol, although I don't know how much. Then down to 80 mg.and down to 40 by the time I left the hospital, and I'm staying on 40mg Prednisone, 4 g mesalamine ("Pentasa") for 2 weeks, at which point I see the gastroenterologist again and we talk about treatment options.
I've been home and on the prednisone 40 mg, plus mesalamine, for a week and a half now.
And I'm on a kind-of-low-salt, kind-of-low-residue diet. The 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 herbal tea. 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.
The treatment, and actually eating, meant that I came out of the hospital feeling better, instead of weak as a kitten and anemic.
Should I tell the hospital to set aside some rooms?
(This is edited/ reposted from The Miserable Prednisonites thread, because I thought that the overall treatment was interesting. Kind of makes you think about how peptic ulcers were treated all those years, before they figured out about h. pylori and antibiotics. Lucky me, in my case, Prednisone is my friend!)
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. In my case, the original attack came after a random mystery bug I caught in India, and my immune system goes into overdrive when I catch something it doesn't like. 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.
So... 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. :emot-waycool:
Regular food. A low-salt, low-residue diet, but croissants, omelettes, baguettes, and coffee, meat and rice and mashed potatoes and creme brûlée. And liters and liters of Evian.
To be fair, I did ask. I said, "do I have to go on a yucky liquid diet, or can I eat?", but that was mainly because he'd been talking for 2 minutes and hadn't yet mentioned TPN or clear liquids. I don't think it was just because I asked!
The gastroenterologist said that if I stopped having gas or diarrhea, or my stomach swelled much more (it was seriously swollen, not just a little) 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's happened before, too. Either it was just time, or the prep did something. I know, "theories are like assholes (everyone's got one)", but I think that maybe the prep clears out some of what my immune system is going whacko over. Anyway, thinking that makes doing the prep less miserable, so I'll stick with it.
I ate dinner after the colonoscopy prep. Roast chicken with mashed potatoes, bouillon, baguettes, cheese, and sorbet. 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.
The initial attack was in 2010.
After that I had 3 flares, pretty much one every 6 months. Then nearly 2 years fine, on no medication for the past 1-1/2.
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, gak.
Here in France, on the other hand, it was, boom, 150 mg of Prednisone for 2 days, Plus IV fluids, painkillers as needed, mesalamine. Solu-Medrol, although I don't know how much. Then down to 80 mg.and down to 40 by the time I left the hospital, and I'm staying on 40mg Prednisone, 4 g mesalamine ("Pentasa") for 2 weeks, at which point I see the gastroenterologist again and we talk about treatment options.
I've been home and on the prednisone 40 mg, plus mesalamine, for a week and a half now.
And I'm on a kind-of-low-salt, kind-of-low-residue diet. The 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 herbal tea. 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.
The treatment, and actually eating, meant that I came out of the hospital feeling better, instead of weak as a kitten and anemic.
Should I tell the hospital to set aside some rooms?
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While liquid diets are anything but fun the success rates are very similar to treating with steroids. I'm sorry you didn't feel as well when you got out of the hospital in the US. Not all hospitals are great ones unfortunately. 
