How do I know I'm having a flare up?

[susanq]

hey
I was diagnosed in May with Crohns & colitis since Jan.

I was very ill with extreme BM and vomiting, severe pain, like labour pains and weight loss. It started after having what most people would call a 24 hour bug which lasted 6 weeks. So my consultant did another scope in May and that's when I was advised I had Crohns.

I've been on mezavant since Jan with no side effects and steroids since May with quite alot. Moon face as its affectional know, shaky hands, facial hair, and weigh gain. From reading other forums these seem to the main side effects.

From today I'm down to 1 steroid a day for the next two weeks. But for the last 2 weeks I've been getting cramps and a kind of heavy, dull pain. Hard to explain. My consutlant told me if I feel anything to double up on the mezavant, so now taking 4800mg a day. He also said if I was getting a flare up that he would change my meds and take me off the steroids, which I''ll be happy to be off.

Has anyone tried the other meds, any advice?

Thanks

 

[Astra]

Hiya Susan
and welcome

Mezavant is one of the 5ASAs, an amnio salicylate, acts like an aspirin, and this is for UC. It's sister Pentasa has the same active ingredient and is for the whole system, whereas Mezavant is for the large colon.
So that's why your doc has put you on these, but there are other alternatives.
My friend with UC has had amazing success with the biologic Remicade, we call it Infliximab in the UK.
We have a Remicade Club here on the forum with lots of info.
Other meds are the immuno suppressants such as Azathioprine (Imuran) and 6MP (mercaptupurine)
Then there's the steroids Prednisolone and Budesonide (Entocort) which you've already had a taste of!
Have a good scoot round the forum, the treatment sections and the diet sections and any questions, fire away, there's a lot to take in!
Lotsa luv
Joan xxx

 

[scottmyster]

HI Susan, Welcome to the forum .i have had crohn's for 21 years now and was in remission for good period of time and i have a flare up right now and i am on preds and other meds. hopefully for short period of time. Hopefully it will do the trick. If your still having serious pain i would see my GP again. and see what he can do for you. Hopefully you will recover soon and the pain will go away. but eat meals in small portions though out you day and reduce fibre it will help with the stomach cramps lots of fluid to keep you hydrated gatoraid, stuff like that. best wishes on your recovery.

scott

 

[xJillx]

Welcome Susan! Sometimes when people try to wean off steroids, their symptoms come back. This could be because the steroids were not done getting the inflammation under control. If this is the case, people usually up the steroids and try to wean off more slowly. However, as your doctor suggested, mezavant might not be a strong enough drug for you. It is a very mild treatment typically used for those with mild-moderate conditions. There are many other treatment options as Joan has mentioned. I suggest doing some homework around the Treatment forum; I think you'll find it very helpful.

 

[RFarmer]

Hey Susan,

welcome to the forum

As Astra mentioned, there are a lot of options for medication which you can discuss with your doctor. Generally mezavant/pentasa are the starting drugs, so they'd carry the least side effects. As you go up in the medicine ranks, you get more likely side effects. However, I think steroids kinda take the cake for likelihood of actually GETTING side effects. They're horrible things.

On a side note, I was on the 'roids a while back, and as soon as I started weaning off them, I got horrible cramps too.

Stay strong; the initial year or so before you get a good medical regimen is the hardest. Good luck, and keep us updated

PS: In response to your subject questions : "How do I know I'm having a flare up?" With IBD, you're generally either flaring, or in remission. Remission means almost complete lack of symptoms. You will know when you're in remission. You're in a flare up when you have the IBD symptoms.

 

[susanq]

hey all,

Thank you all for your emails and sharing, Its great to get support and to hear your stories.

I wonder if any of you can tell me did you ever get a break out of what look like boils or acne spots; that are very angry and red on your chin & neck. I get the odd pimple once of twice a year but these aren't like normal.
I seem to blaming the steroids on everything, seriously its a joke between me and my husband now.... oh thats the steroids....

As I'm now down to 1 a day, I wonder is it them or maybe something else. Or could be nothing at all to do with Crohns.