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Crohnie for 5 years and counting

Hi I'm new to the fourms...

I've had CD since I was 14 and it hasn't been managed well...

I initially was on prednesone for a few months and they tapered me off of that and put me on to imuran (100mgs i think)... after a year of moderately working but not as a stand alone, my ped GI took me off of that and put me on remicade... I was on remicade for 3 years till I had a bad reaction and went another year till I swtched to my dad's GI (he has crohn's too) and i got a blood test saying that after 4 weeks from when I had the infusion, I had nothing left... i was neutralizing the medicine... So it was going to be a big waste of time and money to continue it...

since this past april I have been on biweekly shots of humira, and around the 4th of July I had an abscess that formed on the backside of my abdomen wall and I had to get it drained... and everything was going great, but the hole that they used for the drain wasn't healing and I went thru a MRE to see what was happening... it sounded like it fistulized and connected to my last part of my colon... so i was bumped up to weekly shots and 100mgs of imuran to combat it... it was healing as far as i had known till i felt something opened up last week... all it did it was band-aid it up... I got squeezed in after my dads yearly colonscopy on thurs... I am kinda worried about what is going to happen next... I've never been thru surgery and the last one that my dad went thru was 20 yrs ago and was exploratory...

I had to drop out of college this year and try to work when I am up to it... so far its been a month of working and then another month off...
 
Hello and welcome to the forum!

I am sorry to hear about all the problems you are having despite being on the Humira. Maybe there will be another medicine worth trying before you consider surgery. Take a look around the forum, there is lots of information about fistulas and abscesses...I am sure you can get some help and support from people with very similar symptoms.

Please keep us posted about what your doctors recommend.
-Lisa
 

afidz

Super Moderator
Hello!
Sorry to hear about your troubles with the fistula. What did the doctor say when they saw you last week?
Like LisaL said, take a look around the forum for info on fistulas and abscesses, I will post a link below to bring you directly to the forum (if you haven't already been there)
http://www.crohnsforum.com/forumdisplay.php?f=76
 
yep... daily imuran (100mgs) and weekly shots of humira...

although the med is wonderful when it is working... getting the pens is expensive after my insurance and the humira card, so i applied for some extra help...

I've ran it thru my head with what my GI might do... I've thought about steriods, but he doesn't like doing that... Possibly gluing the hole closed... Or continuing my regiment...

I've also been keeping tabs on crohn's news on FB and going to ask him about this stuff i found the other night...

And being in MN sucks for my crohn's... the severe weather changes make me stiff and sore and in winter I have to wear 4 layers of clothes min to keep warm otherwise i get chilled...
 
So today I saw my doc.. (he was running behind -- had an emergency surgery this morning and a 10am appt turned into 11:30am)

He said fistulae do end up opening and closing till its healed... he isn't quite sure what it is doing but there has only been a minor amount of stool and gas that was coming out... He is going to try to keep me on my regiment right now... he plans on scoping me in april again... And he made it clear to me is that surgery is an option, but he'd rather not have me filleted open and end up off for a few months...

My blood work from this week showed that I was a little anemic so I'll also be getting some iron via IV cause i can't tolerate the pills... I had it done about the same time last year, so I might be one of those people that have to get an infusion every year, no big deal if its going to help me keep my energy up...

So I guess this is better news than I had hoped and thanks for the info on the humira... I have that card and i applied to abbot's assistance too... (4 pens = 360 bucks with everything) and my doc scribed an 84 day supply too so that should help tons :)
 
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