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Hi Everyone,

I used to post every now and again going back a few years using the name ARNCAP.  I have just created a new account with the name CAPPER.  I am hoping some of you will remember me!  Yes, I'm still alive and kicking...  Now in the backwoods of northern Alberta!

I had a total colectomy (1-step operation) in July of 2000.  I learned to accept the lifestyle, mega-bowel movements everyday, some days better than others. Within a few months after my surgery, I started taking codeine in order to slow down my digestive tract, otherwise my bowel movements were non-stop around the clock.  In other words, I have been taking 120mg of codeine 3 times per day for the past 15+ years (that's 360mg total per day).  Never had any major complications other than some bad stretches when things become pretty miserable.

Recently, my GI diagnosed me with Crohn's disease as well.  In other words, he explained that my small intestine is also inflamed and causing me a lot of difficulties (mainly more and more bowel movement per day).  A lot of days it feels like I am not taking codeine or enough of it because my symptoms seem even worse than they have been.  

After consultation, he highly recommends I go on Humira, and do so aggressively.  I was planning to do so but right now I am in the preparation stages (getting TB test, immunizations up-to-date, and finding out about insurance coverage etc.).  

I am concerned about the many side effects with this drug - especially some of the very serious ones including greater risks for cancers.  I am also not confident it will help me as nothing else really has.  I am hoping I could get some feedback and advice from any of you kind people out there reading this that might have an opinion for me.  Some of you obviously have some experience with this drug.  

Any help is appreciated.  Hoping to re-connect with many of you!

THANKS,

CAPPER (ARNCAP)

 

 

 

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I was on Humira from June 2013 to September 2016. After the frequent initial doses, I self injected one dose every two weeks. I felt great for the first 8-9 months. Then it started to loose its efectiveness. My GI scoped me and found ulcers in my pouch ( pouchitis) he He put me on Salofalk enema (mesalamine) one night abd entocort enema the following night. Since using enemas has always a problem for me, I couldn't stick with the treatment. I was put on antibiotics (cipro + flagyle). I did well for a while. Then my complaints got worse. I was scoped...... very bad pouchitis and ileitis with a stricture. This time my GI wanted me to take Humira once a week. I did, but I still had to take antibiotics with it. This went on until last Septemper. Finally, I saw another GI. He scoped me and said my pouch looked great. He didn't even need to take a biopsy, but he detected inflammation in the upper ilium. That explained the pain I had in my left upper quadrant. This new GI now believe I have Chron's but not UC. He put me on Remicade and I had my first dose a week ago. 

While I was on Humira, I had no extra intestinal problems. Like Jane, I got tested every 3 months. The only thing I hated most with Humira was the pain at the injection side. You never get used to it. 

I hope this helps,

Good luck with Humira

 

Linguist

I have now taken 5 Humira injections since late November.  I have not noticed any change in my health condition for better or for worse.  I know that it is important to give it more time.  My doctor said that I should notice a difference by the 3-month mark if the drug is going to work.  Does anyone have experience with Humira working well but being very slow to seeing positive effects?  I'm starting to lose confidence that it will help.  My doctor stated that when I get a scope done next, he'll be able to determine if it is working based on whether inflammation is still present or not.

C

Thanks for the responses Jan, Linguist, Canlafre, and Bluebirds.  Much appreciated.  I have not yet tried weekly injections; obviously this is something my GI might look at.  

I am due for another 'maintenance' Humira injection today.  3 nights ago I came down with a bad cold with headache, night sweats, the chills, etc.  Not sure about a fever.  Just tried calling my GI's office to speak with someone but was unable to get a hold of anyone there.  I assume I should take my dosage as usual but just wanted to check as I still feel lousy today.  

Still no improvement from my Humira injections I started back in November.  I continue to have the same symptoms prior to starting them.

Thanks again for your responses.

C

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