• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Howdy

I'm new to this forum...live on the West Coast of Canada and try my best to not be affected by my diseases...to continue to have a life

I was diagnosed a very long time ago and while I didn't have much help from Drs I was able to spend enough time paying attention to my body and reducing stress that I found myself in a remission of sorts...for about 6 years...and I've never had to think of surgery...even when my Crohns was really bad years ago...

anyway

I was doing pretty good till I was diagnosed as a diabetic 2 years ago...have gone from remission to having to be put on pureinthol in Aug of this year...something about the diabetes diet not playing nice with the Crohns diet I guess...now due to the shortage in pureinthol I started azathioprine on Tuesday and can barely move...every single joint in my body and most of the muscles are screaming for personal recognition...I am duly unimpressed.

I'm wondering if anyone else has had this kind of reaction to azathioprine?
 

Crohn's 35

Inactive Account
Hi there :welcome:. Glad you joined us. Many people go for years symptom free, and some suffer more. You could be reacting to the AZA, I cant take them either because it affects my liver. I think we Crohnies have our own special arthritis, and soreness.

Have you had blood work done recently? I am in Canada too straight across the middle. Thunder bay. Hope you get some answers, sorry I am not much help. Many here to help you!
 
wow...small world...I lived in Thunder Bay from the age of 13 to 41 - been on the Island for 15 yrs...went to PACI...worked at Finnegans and the Inntowner for years (which will give you and idea of my age LoL) my dad was an OPP officer.

I get my bloodwork done weekly - have since I started purinethol in Aug...liver's fine, although there's always blood in my urine??

I'm sure that ppl with Crohns have symptoms that Drs can't understand...depression, weight gain (although some lose) fibromyalgia like syptoms...the list goes on...

I guess for all intents and purposes I've been uber lucky...and I know I've got a high pain threshold...I'm just being hit hard with this med change...
 

mikeyarmo

Co-Founder
A big howdy right back at you WyzWmn! Welcome to the forum.

I was on azathioprine without many side effects, but it is not uncommon for people to suffer many different types of symptoms. Sorry to hear it has not been working out perfectly for you.

Be sure to document how long the symptoms last and exactly what you experience so you can share this with your doctor when you see them next. Hopefully the right medication can be found for you!
 

Crohn's 35

Inactive Account
No, the doctors try to empathize but they have a kazillion patients and I guess their "patience" wears thin. Besides we all dont have the same symptoms just mostly the common ones ,comes and goes.

Finnegans lol..yep and older crohnie like meself lol. You are missing the additions to the waterfront community.. I have been here now 6 years, not my first choice but my husband works in the mines up north. This is far NORTH as I am going. I am originally from the GTA of Toronto.
 
me too...I'm a Scarborough Kid...
which mine is he working in? I lived in Pickle Lake when it was running and worked in Hemlo too...

if having Crohns has taught me anything (beside the incessant need to check your dignity at the door of the hospital) it's taught me that you must be an informed consumer...you must advocate for yourself...cos nobody knows your body like you do eh?
 

Spooky1

Well-known member
Location
South Northants
Hi there,

welcome aboard! when i was in hospital on one occasion i was chatting to a lovely elderly man. was a retired admiral. he was in for prostate issues, he asked about me and i said Crohns, and he said, 'oh, yes, i have that'. so i asked how it was for him, and he said, 'well, i've had a couple of bouts of D in my life, but nothing to complain of'.

i'm amazed, can you believe that? seems theres another person out there who isn't too troubled by it. you lucky thing. but two issues? crohns and bones is plenty for me, especially when you're housebound with D and a liquid food pump attached. aza isn't good for me either, bit pukey with it.

hope all goes well and you're sorted soon and with good response.

best wishes
Diane
 
Top