What are we aiming for?

[Bld]

I started in my worst flare yet last September and it has been ongoing since then. Between September and January I had terrible diarrhoea 20+ times a day, erythema nodosum, joint pain etc. Since then I have had a colonoscopy which showed two skip lesions, the last one of which was big enough to prevent the scope going any further. I am currently on 4g Pentasa and 50mg of 6MP per day. I was supposed to increase the 6MP but it made me so tired I couldn't work.

I have made an appointment to see my GI on Tuesday and I am wondering what I should be asking. Is the aim of treatment to restore normal bowel function with no pain (I am currently going about twice a day but always diarrhoea and have some pain but it is very bearable) or is it to get bloods normal and symptoms to a level that they can be lived with?

My reason for asking is that my GI said the next step would be a biological treatment such as Remicade and I feel that at the moment I feel ok enough that I can cope and Remicade seems like a huge step at this point.

Obviously if it is necessary to prevent the disease progressing then I wouldn't refuse it but if I can tick along as I am and maintain my current state of health without the disease progressing further then I'd prefer that. Increasing 6MP again isn't an option as I have to work and I also had a very bad reaction to Aza.

Just a little confused at the moment and could do with some help!

 

[Rebecca85]

The overall aim is to not have any active inflammation. As active inflammation, even if you can live with the symptoms it causes, can cause scarring and adhesions which will give you problems further down the line.

Usually no active inflammation means blood work normal and symptoms minimal- even if you still have to avoid certain foods. However, everyone is different, some people might still have diarrhoea in remission for example, if they have scarring or had surgery. And some people's bloods don't reflect when they are flaring, so relying on bloods to tell them when they're not would be useless.

 

[chrisnsteph1022]

I'm kinda in the same spot. I'm already on Remicade, Imuran and Lialda (and vsl3 and immodium). I'm still going 3-5 times a day, never solid. Minor pain. My doc said if this next infusion doesn't help, I need to see a Crohn's specialist to look into methotrexate, Tysabri or clinical trials. I just don't know that I'm willing to do that. I can function with these symptoms. I work full-time and have two young kids. I don't do much in the evenings/weekends, but I don't know that I would anyway. I'm pretty much a homebody. So I'm looking forward to some responses to your question, as I have the same one.