6 years in the making

[Ches7er]

so i typed out this long story then decided to give the short version

6 years in pain with no answers
finally a true crohns diagnosis in july 2012
hospitalized 3 days july 2012
hospitalized 5 days september 2012 with abscess
hospitalized 13 days november 2012 resection 12 inches ileum 4 inches small bowel, removal of fistula to a musle, and abscess
hospitalized january 2013 6 days with abscess

been on and off humira a few times, going to redo a load dose and try one more time before remi,

currently on
canasa but switching to asacol
prednazone (since july but hoping to come off)
b12 oral
calcium
vitiman D
probiotics
flaygl
agmenten
load dose of humira after im done with the antibiotics


i look forward to getting to know you all, its been a very hard year for me hoping to find support and comfort

 

[JennaRae]

Welcome!!! I know you'll find the support your looking for here.
I'm so sorry to hear about your troubles with the disease. I've been there myself.
How many times have you been on and off the Humira? I'm surprised they haven't taken you off it completely and tried something else after several tries on it. Has the surgery helped you?

I certainly hope you start feeling better! Let us know how things go and we're always here to help and give our support.

 

[afidz]

Hello and welcome!
You are more than welcome to type out the full story of your journey with Crohn's. I think reading stories is therapeutic and really helps people cope with their disease. It helps to know that we will always have the forum for support.
How are you feeling after your resection?
' I hope the Humira works for you, I went into remission after starting it in 2009.

 

[David]

Hi there and welcome! I'm so sorry to hear you had a tough year

Like Jenna, I'm curious how many times you've been on and off Humira and wondering why you were taken off then put back on it?

All my best to you.

 

[Ches7er]

Well first time 6 weeks. Off for two or three then on for 4 weeks then off for 4 on for 4 I've been for 4 and will have two more weeks off my Dr wants to try a reload and see how that does. I don't know what to think

 

[JennaRae]

That's very strange. I would assume at this point that even with a reload dose it's not going to work the way it's suppose to. Typically these types of meds only work when your originally put on them and take them continuously. They don't work as well a second time let alone a third or fourth.
You should ask your doctor about trying something new.

 

[David]

I think your doctor has no idea how to properly utilize Humira in the treatment of Crohn's disease. Unless there is some strange new study I'm unaware of, that's actually a TERRIBLE way to utilize a biologic as, among other issues, it can lead to you developing antibodies to it which is bad news. Unless he is trying some new protocol (ask) I would strongly suggest you get a second opinion from another GI, one who is well versed in Crohn's disease and its treatment.

 

[Ches7er]

well each time i was off was because i was in the hospital its not his treatment plan, also since there is no blood test to see if there is the development of antibodies there is no way to know if this process happens at all. he said that the drug just stops working but there is no test to know for sure. it presents quite the questions really if there is no way of testing the development of antibodies how do we know this happens other then its what happens with remicade. its just scary knowing that remicade is the only drug left for me and it just dosent work for some people. the idea is i have never been on humaira long enough for it to work i was always taken off because of an abscess. so we are going to give it one more shot then make the switch i hope it works because remicade is expensive and i dont know if i can afford it even with remi start

 

[superzeeman]

Yea, welcome to the forum. There are a ton of good, educated, smart and I am sure beautiful people on here. I have found a ton of information and support from these same folks and I am sure that you will too. It does suck to be sick though and I send warm thoughts for you getting better.
SuperZeeMan

 

[David]

There IS a test for Humira antibodies so they know it happens which is why the on again, off again is a bad idea. Development of antibodies is correlated with lower serum concentrations of the medication and lower remission rates. The test for Humira antibodies is just not commercially available yet whereas there is one for Remicade.

 

[Ches7er]

i dont know what to do i wish i could have given it enough time to work the first time but infections kept getting in the way... guess i should email this to my GI.

 

[David]

If there were complications that led to you HAVING to come off the Humira, then that is a totally different story What specifically happened that caused you to have to come off of it though?

 

[Ches7er]

The first time I was hospitalized for a week with an abscess in a back /hip muscle. The second time the abscess came back and I had a bowel recession and removed a fistula that was connected to said muscle. Third time another abscess in same muscle in the hospital again this time the bacteria was different. They think i was not on antibiotics long enough and that there was a pocket in the muscle. So each time I have stoped I have been in the hospital but still it's scary. Never been on for more than 6 weeks