I am in the same boat as you at the moment. I am only 23 and after having crohn’s for 4 years, and having it ravage my body while I was being treated with Pentasa (which did nothing), I have finally sought the help of a REAL gastro, who specialises in IBD, and he believes Imuran and Remicade are the best decisions for me. Sometimes you need a medical professional (who you trust, of course) to make these decisions. In my case I have great faith in this acclaimed Dr so I am not as scared as I have been in the past. I have been taking imuran for 3 days and so far I have just been very tired. I am applying for remicade and won’t be able to receive it for another 12 weeks but will be on imuran up until then anyway. For me, the quality of life I could achieve on these meds outweighs the risks. Like others have said, there are risks with any/all medications. But it is worth giving it a big long think. I have gone head-first into this because I am determined, after having a re-occurring abscess/fistula since last November, that I will NOT let things get worse, and that’s what will happen if this disease is left to flourish in my system.
What are the side effects you are most worried about? I am still in the process of doing imuran/remi research, as I didn’t get a chance to do any before I went onto imuran.
Well she’s extremely lucky to have a mother who is so proactive about everything, I can say that for sure! Being young and a girl and having this scary illness can be very alienating, so it’s nice to have someone ‘along for the ride’ as you say.
I know personally I spent a good couple of years in denial about my illness. I would eat things that I knew would make me sick. I didn’t want to believe I actually had this awful disease. And I paid the price.
I’m also scared about the side effects. But with the severity and spread of my crohn’s, I know I will end up in a much worse situation if I don’t take these drugs. So I guess it is a very individual thing. Maybe you can get more of an idea from your gastro about how severe her crohn’s really is, and how likely it is that she will stay in relatively good health as she is now, or if he/she believes it is just a matter of time before the mother of all flares comes back. Do you think he/she would offer that information? How does your daughter feel about it all?
Well I’m glad to hear she doesn’t have any diahorrea or pain. I had extreme fatigue weight loss blood loss diahorrea and pain as soon as my crohn’s appeared when I was 19, but even then, I was in some sort of denial for quite a while – and would also get mad when my parents would talk about what I could/couldn’t eat. I knew I had the disease, but I just didn’t want to accept it. It s a tough thing for anyone to accept, I guess.
I don’t blame your daughter at all for not really wanting to know the ins and outs of the disease. I went online and researched Crohn’s, as did my dad, and the results were pretty terrifying. Sometimes what you read on the net can do much more harm than good.
If she is lucky enough to not have severe symptoms then I can understand your reluctance to jump right into the hard meds. It’s only natural!! I wish I could give some better advice…..
Hi everyone.. I wanted you all to know my dd who is 9 years old has started her remicade treatment. On the 25th of June. We so far have no side effects and she is almost out of her prednislone and prevacid. So we will see how it goes with that runs out. She has had the Constipation part not the other through the whole thing. She has gotten better, but I also added metamucil no taste or grit kind to her diet. It has helped her.. I haven't tried some of the other things for her yet. Have increased her fish intake and taken her off of Milk. Only Lactaid Milk.
Anyways just an update on her.