French frog with 25 years Crohn's experience

Hi, my name is Pierre from Montreal, Canada. Yep, some frogs can write in English too... It all started in a restaurant 25 years ago. It was your usual dinner except that it occurred that it was actually quite unusual... All of a sudden, I looked at my wife, in a freezing pain coming from my ileum, bent over in agony, looking at the fork I just drop on the floor. I mean, did someone stabbed me, honey? We had to leave...

That was the beginning to a LONG road of frustration, despair, pain, incompetent doctors, shame, insomnia, diarrhea, hospital visits, incomprehension, family turmoil, missed opportunities, etc.

It took one and a half year of pure torture and 3 incompetent doctors before they finally diagnosed me in the hospital after I had been sent to the emergency room, half dead... I had eaten peanuts all the evening still not knowing I had Crohn's! I still remember when he came beside my bed 3 days after my admission: "You have Crohn's disease, sir...". I have a vivid memory of that moment. I reply "Is it deadly?". He said "no". OK.

I was put on prednisone and diet for 5 years. I still can't believe they put me on this for 5 years! And then, one day, I go to pee. Ooops...nothing comes out. I feel like I have to let go like 5 gallons but can't squeeze a single drop! It was very PAINFUL and was rush to the hospital. My Crohn's had infected my bladder and the later was half full of fecal liquid!

2 days after, they had cut out half my colon and 3 feet of my intestines.

Since that day, I felt well for almost 25 years. I was SURE I was done with that beast until 2 weeks ago...

Welcome back to hospital! Morphine, nose tube, liquid diet... Back to home and ...prednisone, welcome back to you too.

SHIT!

Pierre Racine.

Hi Pierre and welcome! I am so sorry your 25 years of remission has seem to come to an end. How are you feeling since getting back home? Have you and your doctor discussed a new treatment plan; as you know, pred is not the answer for long term treatment!

I hope you can get your current flare under control and start feeling well again. Good luck!

Welcome Pierre! I'm Canadian as well! But from NB. Parlez vous la francais? Moi aussi! D'un facon...

5 years of prednisone?! STRAIGHT?! That sounds dangerous, and unpleasant. I congratulate you for being able to live with it.

It sounds like you had a fistula form into your bladder. (you can check the wiki, if your doc was too stupid to explain it to you). No fun.

Either way, it's nice to have someone on here close to home. Oh yeah, Welcome! Hope your prednisone does the trick this time.

Wow! What a friendly community!

While at it, I have a BIG PROBLEM with the prednisone! Since I dropped from 40 mg to 30 mg I fell VERY wrong. It's as if I am gone to faint all day long... Extreme weakness, dizziness,... Could it it be the drop is too big? It started the exact day I went from 40 to 30. What is this?

Yes, it is possible you either reduced the mg too soon or stepped down too much at once. I would certainly phone your GI.

Prednisone works quick. That's why people like it. Most Crohn's drugs take weeks to take effect. Prednisone literally works the next day. The same is true for when you wean yourself off. It could have been a big jump, I'm not sure of the dosage of prednisone. If you're supposed to take off more/reduce your dosage, I'd suggest going to see your local pharmacist, and asking if it is ok to take off smaller amounts. Also, your body will get used to it. It just takes time. Getting off prednisone will present difficulties, but they'll go away. However, if it persists, or it's extreme, definitely call your gastro (or whatever doctor you can reach).
Good luck!

xJillx said:

Hi Pierre and welcome! I am so sorry your 25 years of remission has seem to come to an end. How are you feeling since getting back home? Have you and your doctor discussed a new treatment plan; as you know, pred is not the answer for long term treatment!

I hope you can get your current flare under control and start feeling well again. Good luck!

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I will see my gastroenterologist on may 16th. Right now I am SCARE...I went from 40 mg. to 30 mg. last Sunday (prescribed from the hospital doc) and I fell like I am gone to almost faint all day... Weakness and dizziness, lost of balance. I saw a doctor this morning and he told me to raise back my dose to 35 mg. prednisone until I see my regular gastroenterologist... ant to not taper off until then...

Hi Pierre! Welcome! Sorry to hear of the bad times you have had - and yes, I think dropping to 30mg of pred from 40 was too much too soon - I've only ever tapered by 5mg a week, and even then, when I get to 15mg I go by 2.5mg/week.

Have you tried any other treatments, such as Imuran, 6-MP, or methotrexate? Those might help you wean off of the prednisone for good. Other options are Remicade and Humira, but those are generally for those who have failed the immunosuppresants mentioned earlier, at least in Canada.

I love Montreal! My favorite city. I am actually preparing to move there this summer! Do you like your GI? I am asking my GI here in Winnipeg for a referral next week. Welcome to the forum, and hope you feel better!

ChefShazzy said:

Hi Pierre! Welcome! Sorry to hear of the bad times you have had - and yes, I think dropping to 30mg of pred from 40 was too much too soon - I've only ever tapered by 5mg a week, and even then, when I get to 15mg I go by 2.5mg/week.

Have you tried any other treatments, such as Imuran, 6-MP, or methotrexate? Those might help you wean off of the prednisone for good. Other options are Remicade and Humira, but those are generally for those who have failed the immunosuppresants mentioned earlier, at least in Canada.

I love Montreal! My favorite city. I am actually preparing to move there this summer! Do you like your GI? I am asking my GI here in Winnipeg for a referral next week. Welcome to the forum, and hope you feel better!

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No I didn't try anything else yet. I didn't even know about Imuran or the others... I'm of the old prednisone school because last time I was sick - more then 20 years ago - that was about the only med on the Crohn's market. So there are meds that can help you wean you off pred? I'll talk about those to my doc on may 16th. thanks!

Concerning my GI, he IS considered the BEST in the province of Quebec and THE Crohn's specialist in here. He is the president of the Quebec GI association, has published numerous papers in medical papers, everyone in here wants to see HIM and I was very lucky to have him as my personal GI. By the way, out of 4 docs, he is the one who SAVED my life because is the first doc who diagnosed me right when I was sick. He is truly considered the best by his peers also: many GI I met told me so. He is VERY direct, but also funny. He sometimes talks like a lumberjack also... When I took my nasal tube off at the hospital, he rushed to me and said "Do you want to fuckin' die!?". If so I may stab you, it'll have the same effect... So he grabs a kitchen knife and a nasal tube and, looking at me, said: your choice!

His name is Pierre Meunier. His office is in Laval and he is staff at the Cité de la Santé, the Laval hospital. Laval is just north of Montreal ...

Pierre:

Imuran is one to try, another is Salofalk (5-ASA).

Mark

Allo Pierre, ChefShazzy has te right recipe (la bonne recepte) for the predesone, I am so glad you wrote the name of you GI as I am looking for a new one and I will request him tomorrow with my GP. I think you are very lucky that you had 25 yrs of peace from this Devil (diable) I am glad for you that you are in a large city and have access to someone like Pierre Meunier. so sorry for all the pain you have gone through (bon courage) fellow Québécois de l'Abitibi (la Bibitte)

Oh my gosh! Your story is so dramatic you poor thing! I assure you, not every Crohns episode has to end up so horribly. Sometimes it is just slightly awful, sometimes a mild annoyance, and yes, sometimes horrible, but not always! I'm sorry your experience so far has been so traumatic. I hope that this time you get things under control and don't have to go back to the hospital for a good long time!

Hi Pierre,

Sorry to hear that you're not feeling good!! Make sure they check your bones for osteoporosis through bone density scans. I was on pred for 7 years and ended up getting it. My bones are slowly getting better but I still have the effects 10 years later from being off the pred. Because of this, they won't put me on pred again. Not that I'd take it again anyway unless I was REALLY ill.

Hopefully they'll get you off it soon

Hi Pierre and welcome, so sorry to hear yr Crohns has come back and I hope you get it under control soon x

Hi Pierre! I won't even try any French since it took me 2 years to pass 1 year of h.s French! Welcome to the forum! Your story is so sad!!! (hey, hope you got a doggie bag from the restaurant that night...j/k) Prednisone happens to be an enemy of mine for many reasons, too many to list. However, it has worked wonders on others so listen to your doc (he sounds amazing!) and I'm sure he'll find the best meds for you. There are so many options now. I was diagnosed in 1999 and was loaded w/prednisone... then, couldn't walk, move my arms, etc...Glad you have faith in your doc. That's very important.
Good luck, feel better and let's see the return of at least 25 years in remission!
Jan

Hi Pierre and welcome!

25 years of remission is glorious! That is wonderful! I like the sounds of your GI doc - frank and to the point!

Going from 40 to 30 mg of pred is too big of a step down! Most tapers go by 5 mg every week or every other week.

There are so many meds out there now for Crohn's,like you said, that were not around 25 years ago. Hopefully you can find one that works for you with less side effects and danger than the pred.

Good luck!- Amy

ameslouise said:

Hi Pierre and welcome!

25 years of remission is glorious! That is wonderful! I like the sounds of your GI doc - frank and to the point!

Going from 40 to 30 mg of pred is too big of a step down! Most tapers go by 5 mg every week or every other week.

There are so many meds out there now for Crohn's,like you said, that were not around 25 years ago. Hopefully you can find one that works for you with less side effects and danger than the pred.

Good luck!- Amy

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Thanks! Hey, you look beautiful on that photo. Oops... Wrong forum I gess