Needing to vent...

Hi everyone,

Sorry to vent on here but need to get it out I spose lol.

My story so far is that I was diagnosed with Crohn's in November. Not too sure what it all means anything but have damage in my duodenum, terminal ileum end ileo caecal valve.

I was put on Prednisone which I am still on though currently trying to taper off for the second time (the first time I ended up getting worse again a week before I was due to stop). I tried Imuran but only managed 4 days before I had an allergic reaction. I'm currently on 6mp 50 mg, hoping to get to 75mg soon. (Have been on 6mp for 5 weeks now).

I'm justt frustrated I guess. I have pain everyday and though I'm not always in agony, the pain always goes with that feeling that I'm going to need to 'go'. ANd therefore is very disconcerting. I can barely eat anything without pain and running to the loo and yet when I was first diagnosed I still seemed to be able to eat most things other than onions and tomatoes. SO why within a matter of a few months and on treatment can I not eat much at all. I thought it would get better.

I feel guilty as my daughter who is nearly two can't go out as much as other children. If I"m having a bad day it's hard enough as it is without trying to go out walking with the pram and a toddler. IT's just awful.

I guess what I'm looking for is an answer as to when I'll feel better or if I'll feel better. I understand that no one can really tell me this but I spose it's what we're all looking for.

Anyway, sorry to go on, I know I certainly don't have the worst case of Crohn's but it still gets me down...

Just wanted to let you know that you are NOT ALONE...as a mom, too, I have been in your shoes:( My daughter is 15 now but clearly remembers the days when mommy couldn't get off the couch or out of the bathroom:(

I hope the 6mp will give you some relief!

Hey Wren I don't have much more to offer, but just did want say that I agree with Navy here. Our meds, especially the 6mp can take 3-4 mos to fully kick in. With the Pred, just remember to keep your wean slow and within time things should get better. Sending healing hugs and prayers your way.

Hi there,

Thanks for all your replies. Lovely to feel part of a caring community.

I"m pretty lucky with my daughter as she really is such a happy little thing. SHe seems to sense when I'm not well and will go and play on her own as long as I'm in the room with her. I just feel upset for her that I'm not able to go out all the time and I guess selfishly feel sad for me that I can't be the mum I wanted to be.

I know I should have more patience with these new meds but I guess like everyone, just want to feel better. I seem to be having another flare at the moment and can't get it under control. I guess it doesn't help that I'm on this slow taper of pred but GI is concerened that I've been on it for too long now. I've only got another week and a half before I'm off it and just hoping this flare doesn't get worse in the mean time.

It seems to be ok if I don't eat or drink lol

Celey that was awesome advice. I am so glad you are back with us, I think you might really be able to help some of the newly diagnosed to understand what they are going thru, since you recently were in their shoes too Hugs to you both!!

I'm so sorry.  I can sympathize with you.  I hope you get this flare cleared up quickly.