My story

[Sylvie]

Ok...hello All...I'm Sylvie 47 yr old female from Toronto, ONtario...I was diagnosed with Crohns at 19 when I had an appendix attack..that was the start of the surgeries. At 21 I was put in hospital for a month and given TPN, no food for a month was fed intravenously...anyway after all that, first surgery..I also remember back then having a colonoscopy with NO SEDATION..brutal...I have had 2 other surgeries since. I have a great gastro Dr. but he always wants to put me on Imuran...I have avoided Imuran all these years and just had a colonoscopy that showed ulcers. I tried taking the Imuran for a month and one night woke up with burning in my heart and the feeling that someone was squeezing it so tight...it was terrible...called 911 and away I was whisked to Emerg...they did all these tests thinking it was my heart...on Sept. 2 I see the cardiologist and if it was not my heart I am 100% sure it was the imuran. Most of my life with Crohns I have refused taking meds and have been pretty much ok. I dont really suffer from alot of pain but yes frequent trips to the washroom at times. It has slown down with age I have found. I have a 16 yr old daughter who lucky for me doesn't show any signs..yet...I am hoping she never will. Its funny no one in my family has crohns..Just me. When I was first diagnosed they really didn't know alot about it...how time has flown. Has anyone had the bad experiences I have with Imuran? not to mention prednisone..which i will never take again..I blew up, ate everything in sight, couldn't sleep and my hair fell out...it was horrible. I also find the Imuran causes hair loss as well. Its nice to find a place where I can read other stories and share what we all have in common...So this is some of my story!! Sylvie

 

[Crohn's 35]

:welcome: Sylvie, you found us!! Wow I have to say our stories are very much alike! I reacted to Imuran and 6mp , and Prednisone whilst it works it does have side effects, most people are only on it for a short time til something else kicks in. I agree that with age (I am in your age bracket) it is supposed to slow down. So far mine has a mind of it's own. I was dx with no sedation either but it was the dx I needed as the doctors were fighting to say "their opinion only counts" and it was scary but made it through.

I am in the midst of finding another doc my current Gi is retiring and I have seen a Gi in Mount Sinai but that was for a confirmation of my active disease. The are trying to get me to see a teaching Gi in Toronto or Hamilton...not holding my breath, the Canadian system is very slow.

As long as you can keep your flares down it is good to stay away from the big guns.

There are many people here in the same situation. :hang:.

 

[Sylvie]

thank you

thank you again for the welcome...yes its a funny disease thats for sure...a mind of its own...i just have to try now to lose some weight, have quit smoking on day #10 so far...after the episode that landed me in ER I thought it was smoking...I am pretty sure it was Imuran, but yes it was a good time to quit anyways..It seems everyone's illness is not like anyone else's. Some are very sick with it..I have a gf who had a gf who had it..She just passed away poor thing..She was 44 but very sick for a long time...I guess I should count myself lucky...Really I think, its all in what you eat...I need to work on that as well, sometimes I just eat all the wrong things so I do it to myself..I am lactose intollerant and the only issue really is that I have to learn to eat in small portions more frequently...see at this point i eat too much of everything...bad bad

 

[Sylvie]

by the way also, best Dr's are usually at Toronto General or Mt. Sinai...only 2 hospitals I will go to

 

[Dexky]

Hi Sylvie, welcome!! EJ had the usual pred effects but his was a fairly quick course only 6-7 weeks. I don't know anything about the Imuran but others will share their experiences with it. Have a look through the treatment section, you'll find a lot of info on the various treatments in there. Good luck!! Hope you stick around!!

 

[Crohn's 35]

by the way also, best Dr's are usually at Toronto General or Mt. Sinai...only 2 hospitals I will go to

I agree that the best docs are there. Problem is I am in Thunder bay with an amazing hospital but alot of Gi's are retiring, over loaded. Dr Greenberg in Mount Sinai I have seen but getting in on a 6months basis is very difficult. Dont mind flying just need a caring Gi.

I used to live in the GTA but cost of living there is so high.

BTW I have a daughter too and I used to worry about her getting IBS but the incidence is 5% if only on one side of the family. Even tho all my sibs (5) of us have a from of UC DC or IBS.. so far she ok. IF your husband's side has it then the percentage goes up to 50%. Not nice odds but watching her diet and staying away from junk food and sugar should help.

 

[DustyKat]

Hi Sylvie and :welcome:

I'm glad you found your way here. You have found a kindred spirit in Jett and there are others on here with similar experiences so at least you won't feel alone! My daughter is on a maintenance dose of Imuran but has had no side effects, mind you it's a small dose. I hope you stick around 'cause this is a great place for info and support and you will be a very welcome addition.

Welcome aboard!

Take care,
Dusty

 

[Sylvie]

wonderful

what a wonderful place i've found...thank you for your replys...it so helps..I remember Dr. Greenberg at Mt. Sinai, I too had him once...I have an awesome Dr. that i've had since i was diagnosed Dr. Stephen Wolman, he's pretty amazing...I guess if you dont live in the city its very difficult especially in small towns...I am scared to move away for that reason...only real issue I am having now is my weight...I have ballooned from 130-155lbs...I am only 5'4" biggest I've ever been...I am just always hungry and love food...does anyone else have this issue? I feel terrible being this heavy...I just want to be back to normal..I felt great at 125-130...

 

[Crohn's 35]

Wow we have a lot in common! I gained tons too but mostly from prednisone. I think since our metabolism and nutrition loss is up and down, we seem to only keep the calories lol. I lost 26 bls and slowly put on a few and got to get it off and more!

I have to get the weight off, I also ha

 

[Crohn's 35]

Wow we have a lot in common! I gained tons too but mostly from prednisone. I think since our metabolism and nutrition loss is up and down, we seem to only keep the calories lol. I lost 26 bls and slowly put on a few and got to get it off and more!

I have to get the weight off, I also have moderate arthritis in my knee, avoiding a knee replacement.

 

[Sylvie]

well

yes seems we have alot in common...I work in an elementary school and have been off most of the summer...I go back on the 30th so I'm hoping that I can go back to not eating all the time..plus quitting smoking doesn't help but best thing i could have done..I haven't been on prednisone in ages and I will never go on it again...I am now thinking maybe I will give Remicade a try...I have been reading many good things about it..I dont want to take the Imuran..I'm just wondering if they are both the same...I cant afford to lose my hair...its really fine to begin with...god its always something lol...:lol:

 

[hunniebunn88]

only real issue I am having now is my weight...I have ballooned from 130-155lbs...I am only 5'4" biggest I've ever been...I am just always hungry and love food...does anyone else have this issue? I feel terrible being this heavy...I just want to be back to normal..I felt great at 125-130...

I have been on Prednisone for about 2 months now, and I have also been having trouble with my weight. I gained 20 pounds in less than a month (5`10, from 170-190). I love food as well, and just crave the weirdest things imaginable. Gaining weight sucks, but you just gotta keep thinking that it is just temporary, and your health is wayy more important.

 

[Sylvie]

weight

Hey hello...yes weight...big issue...but I am not even on prednisone..I just love food and cant seem to lose the weight now...I would say i first started gaining last winter...really gotta put a lock on the fridge and yes my health is good so far except that i have ulcers in my bowels and i need to take meds..dr wants me to go on imuran but had a bad experience with it..thought i was having a heart attack...I am hearing good things about Remicade and notice your taking it...are there side effects with it? On the imuran my hair falls out as well..its just a horrible drug..to me

 

[Sylvie]

I have been on Prednisone for about 2 months now, and I have also been having trouble with my weight. I gained 20 pounds in less than a month (5`10, from 170-190). I love food as well, and just crave the weirdest things imaginable. Gaining weight sucks, but you just gotta keep thinking that it is just temporary, and your health is wayy more important.

I constantly ate on Prednisone...anything and everything...it really was horrible plus i ballooned out...everywhere...couldn't sleep..felt terrible..didn't do anything good for me...at all...

 

[hunniebunn88]

Yeah, I'm not liking Prednisone too much either, and I am slowly weening off of it, so I am hoping by Christmas I will be back to my normal weight *crosses fingers*
Remicade is love/hate for me right now. I went for my second infusion last Wednesday and I am still having side effects from it. I am not having as bad of stomach pains, and not as many BM a day, but I am having itchy blotches everywhere, loss of sleep, back spasms. But other than that it's not that bad of a drug, you learn to tolerate.

 

[Sylvie]

it has alot of side effects? did you try Imuran? is it better than that or same?

 

[Crohn's 35]

Ha, eating with Prednisone is the reason doc's put us on that,alot of people experience severe weight loss and it is a good way to get the weight back on and get the pain and disease under control. Long term is not recommended or long taper. Causes alot of damage to alot of things. Remicade is a great choice, hope it works for you. Humira was cheaper , more convenient and human Protein. What ever your Gi recommends is a good idea. But like any drug there are sides. We need a life and being a teacher is not easy with some of today kids. I salute you for even being in that career!

 

[Sylvie]

Ha, eating with Prednisone is the reason doc's put us on that,alot of people experience severe weight loss and it is a good way to get the weight back on and get the pain and disease under control. Long term is not recommended or long taper. Causes alot of damage to alot of things. Remicade is a great choice, hope it works for you. Humira was cheaper , more convenient and human Protein. What ever your Gi recommends is a good idea. But like any drug there are sides. We need a life and being a teacher is not easy with some of today kids. I salute you for even being in that career!

Thank you..how nice...you see I am not in the process of losing weight anymore...i think that is when your younger, who knows...dr suggested Humira but i was reading up on it and it sounded scary as well..I have a drug plan that covers Remicade and what i want is something with as little side effects as possible...if thats even a factor..lol..

 

[hunniebunn88]

I tried Imuran, but my GI took me off of it when I was admitted to the hospital. I was admitted with EN, infection in my eyes, pain in my knees and back to the point where I was not able to get up and down my staris. So my GI thought that I might have had an allergic reaction to it, but who knows?!
I did a lot of research on Remicade before I went on it (I'm paranoid like that ), and it just looked like the best option for me. I can deal with the side effects since they only last for a week or two.

 

[Sylvie]

I tried Imuran, but my GI took me off of it when I was admitted to the hospital. I was admitted with EN, infection in my eyes, pain in my knees and back to the point where I was not able to get up and down my staris. So my GI thought that I might have had an allergic reaction to it, but who knows?!
I did a lot of research on Remicade before I went on it (I'm paranoid like that ), and it just looked like the best option for me. I can deal with the side effects since they only last for a week or two.

I'm paranoid like you as well...these drugs are almost lethal..I read that Imuran is like chemo...just that scares me...I was taken to ER having chest pains and burning in my heart...I swear I thought i was having a heart attack..not sure it it was anxiety but will find out on the 2nd when i go back to the cardiologist...was very scary .. have been off imuran since then...although my doc gets mad and thinks its all in my head..which really pisses me off sometimes..

 

[Crohn's 35]

I wished I had a buck for every doc that tells us it is all in our heads... I am always so close to saying "anytime you wanna switch bodies..go for it"!

 

[hunniebunn88]

We are very alike!
I was rushed to the hospital 2 weeks ago with chest pain, but mine was with fear of a pulmonary embolism. I was dx with blood clots in my leg when I was in the hospital (the doctors were saying its a miracle that I was in the hospital when I got the leg pain, or it could have killed me)
I also think my doctor thinks I'm crazy, but I really don't care. I know my body, and if something seems off to me, I'm not gonna let it go!

 

[gypsigirl28]

welcome to the forum Sylvie, I am glad you found it and are getting lots of advice and support

 

[Sylvie]

I wished I had a buck for every doc that tells us it is all in our heads... I am always so close to saying "anytime you wanna switch bodies..go for it"!

yes your so right...no 2 people are alike...ever

 

[Sylvie]

We are very alike!
I was rushed to the hospital 2 weeks ago with chest pain, but mine was with fear of a pulmonary embolism. I was dx with blood clots in my leg when I was in the hospital (the doctors were saying its a miracle that I was in the hospital when I got the leg pain, or it could have killed me)
I also think my doctor thinks I'm crazy, but I really don't care. I know my body, and if something seems off to me, I'm not gonna let it go!

wow..ok so i'm not the only one...scary when this stuff happens..and lucky for you that your were in the hospital already...these medications can really be so dangerous - thats why most of my life I haven't really been on any...

 

[Sylvie]

welcome to the forum Sylvie, I am glad you found it and are getting lots of advice and support

thank you...yes its pretty awesome...

 

[Astra]

Hi Sylvie
and welcome

I read your post with some laughter, we're soooooo alike too!
and the same age, and the weight thingy, and the Imuran was toxic to me, I was allergic to it, came out in hives! Been on Pred, was called mental for years, so on and so on! ha ha
glad you found us, lots of like minded friendly people here for you!
lotsa luv
Joan xxx

 

[Sylvie]

Hi Sylvie
and welcome

I read your post with some laughter, we're soooooo alike too!
and the same age, and the weight thingy, and the Imuran was toxic to me, I was allergic to it, came out in hives! Been on Pred, was called mental for years, so on and so on! ha ha
glad you found us, lots of like minded friendly people here for you!
lotsa luv
Joan xxx

yes seems alot of us crohnies are alike...our symptons especially...I hate Imuran and wont go back on it...I am holding off on calling my drs office to tell them..this is a really great site...so are you not on any meds??:rosette1:

 

[Astra]

Hiya Sylvie

I've just come off Pred in April, and Entocort in July.
I'm just on Pentasa now, cos I'm in remission and feeling really well! Thank God!
had a helluva time the last 8 months, so fingers crossed!
stay well hun
xxxx

 

[Sylvie]

thats great

Hiya Sylvie

I've just come off Pred in April, and Entocort in July.
I'm just on Pentasa now, cos I'm in remission and feeling really well! Thank God!
had a helluva time the last 8 months, so fingers crossed!
stay well hun
xxxx

good for you...I remember being on a study when they made Entocort..I remember going in the washroom and mixing the orange juice with the liquid from the inhalers they use for asthma..(yes thats what it was)...that was how I took Entocort (also named Budesonide)...my how time has flown..will keep my fingers crossed for you as well..I'm not taking anything except for my B12 injections, Iron injections and vitamins...thats it...

 

[lseibert]

:ybiggrin: Welcome, I new here also and my reaction to Imuran was pancreatitis, which put me in the hospital. Good luck with everything.

 

[Sylvie]

hello

:ybiggrin: Welcome, I new here also and my reaction to Imuran was pancreatitis, which put me in the hospital. Good luck with everything.

I am actually new as well...and welcome to you -- I did not like prednisone and will never use it again, and I have not had good results with Imuran..as soon as my hair starts falling out..forget it...not only that...I ended up in Emerg...I think I wrote in my post...these drugs, again, can be lethal...doesn't always work for everyone...unfortunately...I was told to go on Humira and Remicade as well..however I'm scared to do that as well...so its very frustrating..

 

[lseibert]

I agree, it's very scary to have to decide which side effects you'd rather have, lol. I'm seeing the Dr. in a week, because Pentasa isn't working for me anymore. I have been in a flare for 3 months and the prednisone is making me a little crazy, Dr. says we are going to try Remicade .....:rosette2:

 

[Sylvie]

I agree, it's very scary to have to decide which side effects you'd rather have, lol. I'm seeing the Dr. in a week, because Pentasa isn't working for me anymore. I have been in a flare for 3 months and the prednisone is making me a little crazy, Dr. says we are going to try Remicade .....:rosette2:

Oh Linda, yes prednisone is a crazy drug...remicade? well let me know how that works for you..I've read some pretty good things about it on here...many are using it and apparently its some miracle drug...but i dont like the fact about reading about cancer with these drugs...scares me..

 

[Sylvie]

Hello All, I'm back...Totally forgot I was even here until i got a reminder email...just reading up on posts to see whats new and whats still old...I am pushing 50 in January and just had a colonoscopy last week, nothing in large bowel, some inflammation in small bowel, I am one of those patients who refuses meds....I'm really scared of all the side effects. Yes I have had 3 surgeries in my life, but swore my last would be MY LAST...I dont stress the small stuff anymore and try to watch what I eat (not enough unfortunately) - but keeping fingers crossed that it stays this way!! I know many are not as fortunate...well, hello ALL!!!:dance:

 

[KWalker]

I thought your name looked familiar! Welcome back!

 

[Sylvie]

Thank you!!!