3 Options

[mlockhurst]

Hi everyone!

Ive been suffering/living with Crohns disease for the last 10 years and have done alright with it. For the most part I stayed away from medication, kept my head buried in the sand and seemed to get on great. I had the lovely crohns pains, but they would come and go and it was just a normal every day thing really.

Now I would love to blame my friends and family for pushing me to see more and more drs. Really I just went because this disease seemed to freak my loved ones out more then it did me. I ended up going to the top Crohns hospital in the world, or so they tell me in London England. My scans showed that I had severe inflammation in my colon. They put me on Humira and within a month I was rushed into hospital with a perforated colon.

Now 3 weeks later I am slowly getting use to having an iliostomy and doing alright. I saw the Dr again yesterday and he has now given me three options. Just curious to what you all would do as I have a few months before they can reverse the iliostomy to consider my choice of action.

1 - A week before the reversal start the humira again, stopping just before the operation. Once recovered continuing with this medication to stop any future signs of inflammation. Starting the humira first will take away any inflammation left in the bowel however the surgeon took all the infected parts away so I currently do not have crohns symptoms present at the moment.

2 - Let everything settle down, have the operation and after a years review re start the humira to once again control the disease. The only issue here is the crohns can come back anywhere from the time you get the reversal to 10 years later if it even comes back! If it does come back though and the inflammation comes back while I am not on medication Humira will not work.

3 - Start Azathiroprine. Been on it before when I tried Inflixamab, stopped it when I had a bad allergic reaction and luckily went into remission anyway. The dr has said that azathiroprine can stop inflammation as well.

Now I HATE medication! My body doesn't cope well with it but after a perforated colon I do NOT want a repeat. So what would you do?

 

[David]

When you took the Infliximab, did it work for awhile and then stop? Did you develop antibodies to it? Or did it never do anything for you?

Was the allergic reaction to the azathioprine or infliximab?

If you answer those, I'll give my opinion on what I'd do

 

[mlockhurst]

Heya, Well I had a bad reaction after the fifth infusion. The azathiroprine had given me some side affects but nothing to serious. I tend to be one of these people who are extremely sensitive to different medications! After the reaction I was so fed up of all the tests and needles that I decided to stop all medications. After that I was in remission for over 5 years until now!

ps the inflixamab amazing beside the massive reaction! It took away all my fissures and worked a treat while I had it. I started humira a few months back though I am currently off it due to having an iliostomy, but thats where I can decide the next step from here!

 

[David]

If it was me and those were my three options, I'd probably go with the azathioprine and not wait since it takes a few months to get into the system. My concern with the Humira would be the possible development of antibodies since you started and stopped it which can increase the chance of immunogenicity with biologics. That would be something to discuss with your doctor if you're leaning towards Humira.

If various tests are showing you still have active disease then I might go with both azathioprine and Humira at the same time. And if you're a young male, get off the azathioprine after 6 months to a year. And incorporate other complimentary treatments ranging from dietary to lifestyle changes.

 

[mlockhurst]

Strictly a female but appreciate what your saying! Currently theres no inflammation because they chopped it out of me. I wouldnt be able to start the azathiroprine while having the bag as I wouldnt absorbe the benefits or so they say. How are you doing with your disease? What are you currently taking? Im living in the UK but am Canadian and I have noticed the medicines are very different where you live! I was thinking the Humira would be the better option. I will have a word with them about it, and think of the pro's and cons of the two! I hate needles so neither option is great, though you'd think id be use to needles by now! lol got the bruises to prove it!

 

[David]

I don't have Crohn's disease, I have Lymphocytic Colitis which is a different form of inflammatory bowel disease. While some with LC take stronger drugs like azathioprine, most of us do not. I have my symptoms mostly under control with diet and lifestyle changes.

Hmmm, I wasn't aware that an ileostomy would affect azathioprine absorption that much. I'll have to research that.

 

[mlockhurst]

yea its the same with vits and stuff, the pills will mostly go straight through the stoma so theres no huge benefit. Oh wow, how old were you when you were diagnosed! Its really great that this site is here, I always find I have really good love and support around me, but it does help knowing theres other people in my situation. Both my sister and aunt have Crohns! but in different areas and very different symptoms.

 

[David]

I'm glad you're benefiting from the community

*hugs*

I was diagnosed in 2010. I was extremely healthy prior to that. It has been a long couple of years but the trend seems to be up now

 

[Mummyg]

Hi, I currently have a temporary illiostomy, due to be reversed in November.

My surgeon has said he will put me on maintenance medication after the operation, I am not sure what it will be.

I have reservations about taking any meds as I feel so well and I have lost a lot of weight (my previous meds blew me up like a balloon). I don't want to take meds unecesarrily.

What is the best meds for keeping crohns in remission?