Going to be starting Remicade/Imuran combo treatment

[Mik-Dog]

Hey all,

New to the forum, and looks to be of great help. Just today, i got told by my doctor that she'd really like to get me started on Remicade. I've already been started on Imuran. I'm a bit scared, but leaving things as they are would be terrible. Just got results back from a CT scan showing multiple strictures, and they say I'm down to about 80-90 cm of healthy small bowel left. I've already had one surgery - but there wasn't that much removed.

I got kinda scared at the "only 80-90cm" of healthy bowel left. I was told that once I'm down to less than 60cm nutritional absorption is pretty much not effective - and then I'm into nutritional replacement therapies - which I very much want to avoid if I can.

Never thought to ask my doctor at the time, (I was trying to digest everything she was going through) and this may sound sort like sort of a dumb question, but are the strictured areas essentially done for (ie will never get healthy again or go back to normal)? Or is there some hope they will recover if treatment proves to help me? Essentially, can my amount of healthy bowel increase?

Any other experiences you had on this combo treatment would also be appreciated...I'm definitely a little frightened about some of the risks of infection in taking two immuno-suppressant drugs. What kind of risk am i at during cold/flu season?

Thanks folks!

 

[tishbite]

I took Remicade for 2 or more years and it seemed to alleviate some of my symptoms. They upped my dose 3 times from 200 mg to 600mg to 800mg before they had to take me off it because my body was just not responding to the treatment anymore.
I had the WORST experience with Imuran. It made me have this awful pain in my knees that made it so I couldn't walk without my knees buckling. Also, very high fever and vomiting etc. It was a mess.
The one infections I would get tested for somewhat often is C-diff. Especially if you are spending a lot of time in hospitals. I have had it 3 times and it is the worst pain.
Good luck!!

 

[Crohn's 35]

HI Mikdog :bigwave: I have had Remicade, but wasnt my drug, neither was imuran, but your doctor knows you best and it is a good thing you are already on one drug prior to the other. This way if you have a reaction you will know which one is causing it. Alot of people have great success with Remicade, and I am sure you will be happier once it kicks in and out of pain. In the meantime with strictures I would avoid chewy foods and meat... could cause an obstruction. I see you are a Canadian amongst us, glad you found us, let us know how you make out with the infusion! Best advice, stay away from sick people and wash your hands often!

 

[Grumbletum]

Hi MikDog
I'm in the same position as you, without the strictures. About those, I haven't got any as yet, but from what I've researched, strictures are caused by a build up of scar tissue from healed inflammation and won't heal with meds :-(
I sure hope the Imuran/Remi combo helps protect that healthy bit of bowel. I've been on Pred for 5 months and Imuran for 3, but still have severe inflammation so had my first Infliximab infusion yesterday.
Keep in touch and let us know how you get on.

 

[vickyhunter]

Hello Mik-Dog, I recently got told I have a stricture too. Doesn't sound as bad as yours though, my doctor said mine was an 11cm stricture in my transverse colon and he said I'll eventually need some kind of surgery on it (I didn't ask at the time because like you said you're trying to digest everything they're saying and you forget!) but I think because it is scar tissue it doesn't go back to how it originally was, but as long as you watch what you eat and don't eat too many heavy, fibrous things you should be okay. The only think that's annoying me with mine at the moment is I get a lot of pressure building up in my abdomen when stuff is moving through and it's not a nice feeling and then get very painful cramps after.
I'm trying to stick to a low residue diet at the moment, but I'm slowly introducing more stuff as it's very boring haha. I had a veggie stir fry the other day but just made sure I chewed it thoroughly so it didn't have as much of an effect on the stricture.

Sorry if I've not been able to give you much info, just going on what I know
xxxxx

 

[Mik-Dog]

Thanks all, appreciate your responses! And @Pen, cool, I'm from Thunder Bay originally!