New to all things Crohn's!

[AmyD]

Hi All

I am new to hear and new to Crohn's!

Diagnosed in November, so far I have had two lots of steroids (Pred) took the first course for 10 weeks alonside mezavant then when I stopped them the syptoms came back so they put me back on them. Just finished (on Tuesday last week) another 10 week course this time with mezavant and azathioprine this time. However my symptoms seem to have come back again already. Is this normal? What will the next step be? I REALLY don't want to go back on the prednisilone as I seem to have suffered every possible side effect with them!

Thanks

 

[kromom1]

Amy - You will find that there is no "normal" with Crohn's. Everyone's symptoms are different and everyone reacts to the various medications differently. Pentasa, which I believe is the same thing as mezavant, didn't work for me either, and I am the same way, when I go off of prednisone I flare back up. The side effects can really be bad on pred, but when I'm on it, my symptoms are usually in check. It's probably just going to be a trial and error kind of thing until you find the right medication or combination of medications. Hang in there!

Lisa

 

[Yanick]

Hi Amy, welcome to the forum.

I would definitely second the comment from Pen about Entocort. I recently attended an IBD educational summit in Minneapolis, MN, and distinctly remember Entocort discussed as one of the safest, least side-effects steroid out there. Personally, I was on it and it definitely seemed to help. Apart from a few mood swings (which may have been contributed by my frustration with being diagnosed with Crohn's in the first place), and some minor head aches, I don't remember suffering on it. Definitely discuss this with your GI doc.

Best of luck to you! Don't get too down because of this, I am confident you will find a way of getting this under control.

-- Yanick

 

[LeafyOYT]

IBD sucks...... its a chronic illness which people dont understand how bad it is.......

many therapies out there, and they all have side effects.... main side effects from the 'legal' meds range from sterility to morbid obesisty.

there are alternatives, but I wont mention what.

 

[AmyD]

Hi all

Thanks for your replies! I am from the UK and I am 26 years old.

I am currently on 4800mg of mezavant and 250mg of azathioprine. Was on 70mg of pred each time to start with.

At my worse I was going to the loo 20+ times a day, heavey bleeding, lots of pain etc my symptoms are a lot better since using the pred but as soon as I come off it I go from 4-5 times a day back to 10+ a day. I am so reluctant to go back on the pred as I seem to have had EVERY possible side effect and they have in fact made me feel worse because of the side effects than before I was on them!

Got a colonoscopy booked for 2 weeks, already had 2 sigmoid's so kind of know what to expect! Certainly not looking forward to it though!!

Oooh another thing, has anyone else experienced itchy skin? I seem to have had it since starting the aza, also lots of head aches and I keep getting little blood blisters in my mouth, anyone had this?

 

[AmyD]

Having another really bad day, really scared to ring my nurse as I just know she will want me to go back on Pred and I really don't want to!

 

[AmyD]

I feel they don't listen to me, I suppose I need to be a bit more forceful. I have done pred for 5 months in total with the highest dose being 70mg. I just seem to have ALL the side effects and I was more miserable on it than at my worst with the Crohn's symptoms

 

[AmyD]

How do you all find work?

I have been put on a stage 1 sickness warning (2 episodes, 1 9 wks certified plus 1 day uncertified but both Crohn's related) plus 2 days when I had a sigmoidoscopy (had sedation so could not drive the next day) they have threatened me with a stage 2 if my sicknes 'carries on'!!!! I was only diagnosed in November for goodness sake!!!

Anyone else have such uncaring/unsympathetic bosses?!

 

[Stleger88]

Um actually every job I've had has been really understanding ( I work in the medical field) I've even taken "sick" days when its been amazing outside and no one seems to care, they know it's something I can't control really even though I do use it for self gain sometimes lol