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This flare up has destroyed me. Starting Humira tomorrow.

CKR86

CKR86

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.
 
ronroush7

ronroush7

I have been on Cimzia, Remicade and Stelara. I don't know anything about Humira even though I would like for my doctor to switch me. I wish you much success.
 
CKR86

CKR86

Thank you very much. I've been down the Remicade route which isn't for me. Fingers crossed for tomorrow.
 
A

ande8150

If it helps you at all, I reacted to Remicade as well but have been fine on Humira for a couple months now. Hopefully it is the same for you.

Good luck.
 
DanaBanana

DanaBanana

Glad it went well. Fingers crossed it continues. I feel you...this path is so hard. I was only diagnosed with crohns in September and first treatment failed, I'm 9 weeks into methotrexate and no positive change, just sick. Can't eat and still underweight. predinsone finished for the second time and now I'm having further joint issues in addition to the RA, and still a relentless daily fever. Hip xray last week to check for osteonecrosis, Tb skin test and chest xray today. Gi dr on the 19Th. I've been off work since July. Life is very different, to put it mildly.
Big hugs!!!!
 
CKR86

CKR86

So had the call from the hospital as I've been in and out a lot since October, the Humira worked in getting the inflammation down to discover what was underneath. My stricture is scaring and I will be heading into surgery. Most likely down the ileostomy route.
 
Roxymusic

Roxymusic

Remicade brought me back from severe Crohn's inflammation. Humira worked to stabilize after 3 years of remicade for a year. (Fatigue issues though). On Cimzia loading dose right now. Humira did work for me, don't be afraid of it.
 
Miss Underestimated

Miss Underestimated

Humira has worked for me. Going on 4 years now, I did have to take 6MP in addition to Humira for a year, but that put me in complete remission ever since, with just the Humira. I eat anything I want, it's wonderful. Hang in there.
 
CKR86

CKR86

The Humira combined with the 6 MP and courses of steroids have worked in getting the inflammation down. What is left of the structure has been confirmed on my last MRI scan. We have been talking about the different types of surgery. Got my colonoscopy on the 17th. At least that way we can see the state of my colon as the last one I had done was 2010. Was suppose to have one done back in October when I have my fistula operated on but was in so my pain down there I refused the enema. From talking to my specialist they are hoping for a resection again and save me from the ileostomy due to my age etc...

I'll keep you all posted. The only thing I can say if anyone is wondering how I coped with the Humira, all I can say is that it did work to a point and my body copes with it pretty well. On injections with the pen every two weeks. Can up it to two injections if I start to feel a bit rough.
 
CKR86

CKR86

Scan was successful. Large bowel was clear/normal with patches of scared healed crohns. So at least the 6MP and Humira combo are doing their job. Appointment with the surgeon on Thursday 31st to discuss when my resection will take place.
 
Miss Underestimated

Miss Underestimated

That combo worked for me. After 1 year, the 6MP was stopped, but I continued the Humira; two years so far for me. Keep a positive attitude! There's a light at the end of this tunnel.
 
CKR86

CKR86

Thank you all for your kind words and support. Meeting the surgeon next week. At least it will be keyhole this time round.
 
Miss Underestimated

Miss Underestimated

Ouch! Can you possibly have the surgery moved up? I had an obstruction, then perforation. It can be serious.

I used to stop eating solid food when it got painful like that. Drank gatorade, clear fluids.
 
Eridon2002

Eridon2002

I had a partial obstruction while awaiting my surgery date(was scheduled for March 4th). The pain was so bad I was able to get the surgery moved to Feb 16th. I couldn't eat, had to go on liquid diet and was losing weight rapidly. Not a good condition to be in for too long prior to surgery. Drink lots of fluids, hope it clears up soon for you
 
CKR86

CKR86

Had my pre-op today. Got given some preload carbohydrate drinks to take before surgery. Bet they taste delightful... Not!!!
 
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