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Crohn's Disease Forum » General IBD Discussion » A bit of a French flare!


11-11-2013, 04:10 AM   #1
Goddess
 
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A bit of a French flare!

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.

Regular food. A low-salt, low-residue diet, but croissants, omelettes, baguettes, and coffee, meat and rice and mashed potatoes and creme brle. 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?

Last edited by Goddess; 11-11-2013 at 10:22 AM.
11-14-2013, 07:14 AM   #2
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Update: 2-week follow-up appointment today. The doctor said I'm doing great, eat what I want, step the Prednisone down to 30 mg for 10 days, then 20, then 10, and come back and see him in a month.

When I went into the hospital, my CRP level was 250. Now it's 7. Normal is 5.

So...not only was the treatment markedly different from what I had in the US, it was, for me, very effective.
11-14-2013, 11:40 PM   #3
Jennifer
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Sorry for the late reply Goddess. I'm glad you had a good experience in the hospital. 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. The one I go to is awesome though and I've never left feeling terrible and generally feel 100% better.

Did your GI say anything about the Pentasa, stay on it or stop it? When you see them in a month will you then talk about maintenance meds?

Thank you for keeping us updated. I hope you continue to get better.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
11-15-2013, 12:06 AM   #4
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Yes, staying on the Pentasa.

Do you mean that the liquid diet alone is as effective as steroid treatment? I've only ever been given a combination of the 2.

If it's an alternative to steroids, then that'd be great for people who don't tolerate steroids well.

I certainly understand the liquid diet if there's a stricture or obstruction...but it stands to reason that if I go into the hospital after a day or 2 of vomiting and diarrhea, then eat nothing, then liquids only, I'm not going to be in tip-top shape. I don't know how true it is, but when I said that TPN must be good stuff if they rely on it so heavily, a nurse (this is in the US) said, " it's basically just sugar water with about as much nutrition as a PowerBar".. Great.

On top of that would be the danger of infection for the PIC line IV.

I hated getting out of the hospital feeling weaker than when I went in. I think they sent me home as soon as possible, though. I've been in 3 hospitals in the US, and I had good care, although I thought the rooms weren't all that clean...in the American Hospital in Paris they changed even the curtains between patients, and the cleaning staff cleaned thoroughly every day instead of the "Swiffer-and-swipe" I saw in the U.S.

My goal is not to have to be in any hospital in future!
11-15-2013, 03:33 AM   #5
Jennifer
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Not as effective but are comparable. Enteral nutrition (EN) for example has fewer side effects and the bowel rest alone helps to promote healing by not having foods pass by an already irritated bowel.

"Studies have shown that Enteral Nutrition is less effective than Prednisone at inducing remission in patients with Crohn's Disease, [1] but Enteral Nutrition has far less side effects than Steroid-based treatments (i.e. Prednisone)." http://www.crohnsforum.com/wiki/Enteral-nutrition

Its definitely worth trying if you can't tolerate steroids or need the extra help.

Staying out of the hospital is definitely a good goal to have.
11-15-2013, 08:29 PM   #6
kiny
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I don't know how true it is, but when I said that TPN must be good stuff if they rely on it so heavily, a nurse (this is in the US) said, " it's basically just sugar water with about as much nutrition as a PowerBar".. Great.
Don't know what they call it in the US, I guess "TPN", but an IV line through your neck is not just "sugar water", it has amino-acids, glucose, fats and vitamins / minerals. I have it for about 3 weeks when I first got crohn's disease, I didn't eat or drink anything.

The "sugar water" she is talking about is a glucose IV, it's a transparent bag with just water and glucose, it's not given through your neck or chest, but through your arm.

There's quite a difference. You can live on one for weeks, the other just offers you some calories and energy.

It's easy to see if it's a nutrition bag or glucose one, the glucose one is fully transparent, the nutrition ones will be milky white from the fats in the bag which aren't present in glucose IV.

The reason why "TPN" isn't used that often is like you already said, chance for infection.
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