Newcomer

[liphil]

Hi all,came across this site by accident,glad I did.I have had Fistulising Crohn's Disease for 15 years now.My large bowel was removed 10 years ago,I was lucky,didn't need to get stoma.I have 4 kids,youngest is 7 months.After having her I got a very bad bout and was put on deltacortril and started on remicade.I was also on imuran and Pentasa but had to stop Pentasa as it was starting to effect kidney function and stopped imuran.Had 5 infusions,but it seemed to make it worse,MRI and barium meal showed it was very active in small bowel.Started Humira 5 nearly 4 weeks ago and on deltacortril and I'm no better.Pain is still excrutiating.I know it can take a while for it to work,but after 1st 4 injections it seemed to get better for 10 days then regress.Has anyone else found that?Same time every day,I take painkillers but they don't kick in for about 2 hours and last an hour.I get so dizzy and tired from them I can't function.I'm praying its just getting worse before it gets better.Doctor said if this doesn't work I will probably have to go under knife again and more than likely end up with colostomy bag.Don't know if I could cope with that.
Anyway,sorry for rambling,would appreciate any feedback.Thanks.

 

[GoJohnnyGo]

Hi, I really can't offer you any answers to your questions, as I'm neither on Humira or painkillers.

Just a belated welcome to the forum and hope you feel better soon.

 

[MINI Cooper]

Welcome to the forum!
I understand all too well the 'worse before better' bit.
I'm trying everything to avoid surgery myself, but sometimes it is the
only answer for some relief. Hope you get your relief soon, surgery or otherwise.

 

[Guest]

hi Liphil and welcome

sorry i can't help on the Humira issue, as i've never had that treatment. i hope you don't end up having to have surgery, and will keep my fingers crossed that the symptoms abate soon.

have you asked for different pain meds - ones that are possibly more effective but don't knock you out, and maybe save the other ones for bedtime..? also, have you seen a dietician for advice on how to eat while the symptoms are kicking off? and.. do you get B12 injections? i ask, because you've had some bowel removed and mention feeling tired.. i just wondered if it may be a B12 deficiency.

 

[Kaitlynnesmommy]

I am a newcomer too. I was on Humira for over four or five months. I had to stop taking it for it wasn't working, had side effects, and the injection site was bothersome. Not long after i stopped taking it i ended up in the hospital for a flare up. They then started me back up on Remicade. I was ok for a month and had me flare ups. The doctor wanted me to take the Remicade again. So i went to get it and had a reaction to it. I ended up in the er. Thank God i got it done in the hospital. So now i have to go see an allgergist to find out if i can take this one last med. If not then i go under the knife. I am so scared and nervous. I don't know if that is something i want to do.

 

[liphil]

Hi,thanks for the welcome.
Yeah,I've been on loads of different painkillers,seems to be only the really strong ones that work so I deal with the pain til I know DH is on his way home from work before taking them.Been to dietician loads of times,not allowed to eat fibre foods,thinking of going on a liquid diet for a week to give bowel a rest.I used to be on B12 injections every 3 months but haven't had one in over a year as bloods show I'm not deficient in it,mind you,haven't had them checked in a while.Off to GP tomorrow so will get them done.Hopefully it will settle down soon.