Hello fellow forum members. This is my first post, sorry if it's a long one.
Got diagnosed in July 2000 with Crohns Disease.
Crohns since 2000.
Ileocecal resection 2002.
2x Infliximab infusions 2008.
Started Methotrexate 2008.
Right Hemicolectomy 2009.
Stopped Methotrexate January 2015.
Infliximab infusions started November 2015.
3x Infliximab infusions before allergic reaction.
Started NG feeding December 2015.
Started Humira 8th January 2016.
This recently flare up has destroyed me. I have been in a real dark place with this illness. I don't really know how I keep going on. Basically what happened this time round was I had a lot of bleeding and went to see my gastro doctor. Wasn't fully fully sure what it was as I wasn't in crippling pain. Cut a long story short I went down hill quickly in the next following months while I awaited my MRI scan. The scan revealed that I have a narrowing of the ileum and that I have a fistula right by my back passage. I was later admitted to hospital with c.diff while awaited surgery on the fistula. C.diff cleared up and had successful surgery on my fistula. Surgeon found I had a very large crohns ulcer in my back passage as well and recommended I start biological medication.
Had my first infliximab treatment which I seem to of responded to unless it was the steroids they give you before had. A week later it all went to rat s**t. Was admitted back into hospital to stabilise me and we then started 6-MP. Went back for my second dose on infliximab and had a reaction to it. Eventually got the rest of the treatment in me but still was going down hill. Got admitted back to hospital. They decided to fit an NG tube for feeding, first for me and takes some getting use to. Started on 10 day course of IV steroids and then stay switched me to 40mg of prednisone to send me home for Christmas. Things were improving while I was in there but shortly after being at home went down hill. Not sure if that was the switch from all the IV medication to oral. They were basically buying me time to get my 3rd infliximab treatment in me which was Christmas Eve. They were all saying that the 3rd one was the one to sent me on the right path. Yep you guessed it I had a reaction again this time it happened sooner about half way through the treatment. They stopped it and gave me meds to counter act the affects and started to feel ok again. Was back at hospital again on the 29th to discuss Humira. I am stating this tomorrow and am scared and a little excited. I've heard very positive things about it and hoping it works for me with little side affects. How long does it roughly take to start noticing anything. I know everyone is different but was wondering from the experience of others.
Steroids are driving me mad. I can't sleep at all and have been given sleeping tablets and recently started mirtazapine anti depressant which I'm hoping will start to help me soon with the anxiety and feeling down.
Sorry for the long rant.
Got diagnosed in July 2000 with Crohns Disease.
Crohns since 2000.
Ileocecal resection 2002.
2x Infliximab infusions 2008.
Started Methotrexate 2008.
Right Hemicolectomy 2009.
Stopped Methotrexate January 2015.
Infliximab infusions started November 2015.
3x Infliximab infusions before allergic reaction.
Started NG feeding December 2015.
Started Humira 8th January 2016.
This recently flare up has destroyed me. I have been in a real dark place with this illness. I don't really know how I keep going on. Basically what happened this time round was I had a lot of bleeding and went to see my gastro doctor. Wasn't fully fully sure what it was as I wasn't in crippling pain. Cut a long story short I went down hill quickly in the next following months while I awaited my MRI scan. The scan revealed that I have a narrowing of the ileum and that I have a fistula right by my back passage. I was later admitted to hospital with c.diff while awaited surgery on the fistula. C.diff cleared up and had successful surgery on my fistula. Surgeon found I had a very large crohns ulcer in my back passage as well and recommended I start biological medication.
Had my first infliximab treatment which I seem to of responded to unless it was the steroids they give you before had. A week later it all went to rat s**t. Was admitted back into hospital to stabilise me and we then started 6-MP. Went back for my second dose on infliximab and had a reaction to it. Eventually got the rest of the treatment in me but still was going down hill. Got admitted back to hospital. They decided to fit an NG tube for feeding, first for me and takes some getting use to. Started on 10 day course of IV steroids and then stay switched me to 40mg of prednisone to send me home for Christmas. Things were improving while I was in there but shortly after being at home went down hill. Not sure if that was the switch from all the IV medication to oral. They were basically buying me time to get my 3rd infliximab treatment in me which was Christmas Eve. They were all saying that the 3rd one was the one to sent me on the right path. Yep you guessed it I had a reaction again this time it happened sooner about half way through the treatment. They stopped it and gave me meds to counter act the affects and started to feel ok again. Was back at hospital again on the 29th to discuss Humira. I am stating this tomorrow and am scared and a little excited. I've heard very positive things about it and hoping it works for me with little side affects. How long does it roughly take to start noticing anything. I know everyone is different but was wondering from the experience of others.
Steroids are driving me mad. I can't sleep at all and have been given sleeping tablets and recently started mirtazapine anti depressant which I'm hoping will start to help me soon with the anxiety and feeling down.
Sorry for the long rant.