- Location
- New Zealand
:sign0085: I have had Crohns many years but was diagnosed 4 years ago to my relief. For the first 3 years all my symptoms were just like everyone else's with diarrhea being the most obvious indicator that something wasn't right, the Aza kept flares down and I was coping. My last colonoscopy shows 1/3 ulcers reverted to scars 1/3 healing well and 1/3 showing signs of healing.
Now - THIS year things changed, firstly I started finding it harder to find foods my tum would not turn into a flare. Secondly, I got less and less diarrhea and more and more horrible times of the worst general guts ache and that dreadful spasm pain for intervals of 36 hours to a week at a time. Then I started vomiting as well. I have never vomited in a spasm before. Sure I get water poo every 15 mins but its mid to end of a flare and rarely every day like before altho I get it occasionally for no reason at all. I treat flares by not eating and slowly add foods in when it begins to settle.
I have also developed painful spondyloarthropathy affecting my ability to walk distance, do fine hand work etc etc. Two drugs for that have had bad reactions and I had to come off them, treatment is currently on hold until after Xmas. Also I get boils on my body often and ulcers/swelling in my mouth, have lost several teeth due to infection under them - crohns related.
Now - the first thing my specialist asks me every visit is how often I'm experiencing diarrhea. I feel like a second class crohns citizen to have to admit it is not longer the worst problem, the PAIN is (and I'm losing my bravery these days.) And I know you must all be able to relate that its the worst worst pain which takes on a life of its own.
IS ANYONE OUT THERE LIKE ME? How should I approach the specialist? What should I be asking for now?
HUGS to fellow Crohnies Jen :hug:
Now - THIS year things changed, firstly I started finding it harder to find foods my tum would not turn into a flare. Secondly, I got less and less diarrhea and more and more horrible times of the worst general guts ache and that dreadful spasm pain for intervals of 36 hours to a week at a time. Then I started vomiting as well. I have never vomited in a spasm before. Sure I get water poo every 15 mins but its mid to end of a flare and rarely every day like before altho I get it occasionally for no reason at all. I treat flares by not eating and slowly add foods in when it begins to settle.
I have also developed painful spondyloarthropathy affecting my ability to walk distance, do fine hand work etc etc. Two drugs for that have had bad reactions and I had to come off them, treatment is currently on hold until after Xmas. Also I get boils on my body often and ulcers/swelling in my mouth, have lost several teeth due to infection under them - crohns related.
Now - the first thing my specialist asks me every visit is how often I'm experiencing diarrhea. I feel like a second class crohns citizen to have to admit it is not longer the worst problem, the PAIN is (and I'm losing my bravery these days.) And I know you must all be able to relate that its the worst worst pain which takes on a life of its own.
IS ANYONE OUT THERE LIKE ME? How should I approach the specialist? What should I be asking for now?
HUGS to fellow Crohnies Jen :hug: