Finally I've been diagnosed

[cthomas]

Hi All
After 13 years of gp appointments and casualty visits I have finally been diagnosed with Crohns. I am finding this hard to understand as my symptoms have been slighty different....When I get bad episodes I have such bad stomach pains that I faint and have to be held on the toilet frequently ambulances have been called my blood sugar levels have been to 2.1 etc. I have been given Asacol 400mg 6 x per day. These seem to be making me very sleepy almost crashed my car the other day and I have still have bad stomach pains not as frequent but still there. Can anyone advise of there experience on this medication. I have had blood test done just incase I need a diff mediaction soon and have a follow appointment with my specilist on 1st July. Any advice welcome as i'm new to this. Also any advise on the disability side of thing as I have had to stop my car before today as pains so bad I may pass out so cant drive need the toilet straight away etc I have heard that I maybe entitled to some stuff in regards to work etc like parking spaces closer to the office for times such as described. Work have not been supportive of this and anre trying to get rid of me due to time off. Please help me

 

[My Butt Hurts]

Wow. That must have been a looooong 13 years with no diagnosis. Hopefully you can get to properly treating it now.
Asacol never made me sleepy. Maybe you can do a search on here for Asacol and see if anyone else mentioned sleepiness. Also search for the other name (colazal I think?)

 

[skymgirl]

13 years is a long time to suffer - I'm glad that you have a diagnosis now so you and your doctor can work towards getting you feeling better.

I was just diagnosed in March, and my doctor started me on Asacol. I'm on a low dose (I take 2 400mg tablets 2x a day) but that might be increasing once my doctor gets into my terminal ileum and sees what's going on in there. (My colonoscopy is at the end of May.) I'm not sure if it's because my dosage is on the low side, but I can't really say I've noticed the Asacol doing anything for me. I still have pain, lots of C, occasional D, and fatigue. Since those were my symptoms before I haven't noticed any real change.

I would call your doctor and talk about the increased fatigue you're having, as well as the pain. From what my doctor has told me it can be a trial-and-error routine to find which meds will work for you, so your dosage might have to be played with, or maybe another drug will work better for you. But don't be going through pain and fatigue without talking to the doctor about it.

Hope you're feeling better soon!

 

[cthomas]

13 years is a long time to suffer - I'm glad that you have a diagnosis now so you and your doctor can work towards getting you feeling better.

I was just diagnosed in March, and my doctor started me on Asacol. I'm on a low dose (I take 2 400mg tablets 2x a day) but that might be increasing once my doctor gets into my terminal ileum and sees what's going on in there. (My colonoscopy is at the end of May.) I'm not sure if it's because my dosage is on the low side, but I can't really say I've noticed the Asacol doing anything for me. I still have pain, lots of C, occasional D, and fatigue. Since those were my symptoms before I haven't noticed any real change.

I would call your doctor and talk about the increased fatigue you're having, as well as the pain. From what my doctor has told me it can be a trial-and-error routine to find which meds will work for you, so your dosage might have to be played with, or maybe another drug will work better for you. But don't be going through pain and fatigue without talking to the doctor about it.

Hope you're feeling better soon!

Hi

As im new to this not sure about what is what I have had my diagnosis letter from gp and say inflammation of terminal ileum is this bad??

 

[cthomas]

i havent been informed of the extent of it really. Just know that the pain is unbearable when get bad days have to be held on toilet as it causes me to faint is this normal?

 

[Kittee]

I'm not sure fainting is normal per say but I can tell you that when I'm in full flare...it can feel like child birth. To sum it up, I feel like I've swallowed glass shards and they are slicing their way through my intestines. The pain is so acute and intense I feel like I "could" pass out, but I never have.

I hope that comforts you.

 

[Kittee]

Oh I should add that... its a good idea to visit yee ol' ER when you have pain like that. It could be a blockage. Last time I had pain like that I went to ER. Its a pain but as long as you have insurance, just bite the bullet and do it.

 

[kello82]

in reference to MBH's suggestion of colazol...im fairly sure (but dont take my word for it) that asacol and colazol are the same drug, but are designed to release at different points in the digestive tract. ive been on colazol b/c my crohns is severe in my colon.
not sure where asocol is designed to reach, but i have been on that before too.

so depending on where your inflammation is, thats how they choose which version of the drug to prescribe.

 

[cthomas]

The pain

The pain I have is alway more so in the diaprame area and yes feels like something is blocked although I do get bad diareora and temperature then faint. Then the pain will go is this symptoms of a blockage? If so I have had this since the age of 11 now 24 and been to hospital about twice a year with these bad spells since then. I have a stomach ache everyday not to this extent. But as I dont know really what I am dealing with any advice it much appreiciated. Thanks guys x

 

[cthomas]

Can anyone help

Hi I posted the stuff below a while ago loking for advice I am getting the pains just below my ribs more recently very painful as I am sire some of you are aware! I dont have another appointment to see my specialist till next month Is it possiable to have a blockage which clears without treatment??

PREVIOUS POST....The pain I have is alway more so in the diaprame area and yes feels like something is blocked although I do get bad diareora and temperature then faint. Then the pain will go is this symptoms of a blockage? If so I have had this since the age of 11 now 24 and been to hospital about twice a year with these bad spells since then. I have a stomach ache everyday not to this extent. But as I dont know really what I am dealing with any advice it much appreiciated. Thanks guys x