Sick Like a Fox

[DuncanX]

Hi there. My name is Duncan Cross. I'm sorry it took me so long to find this group. After a break, I'm getting back into IBD social media and online support. I'm eager to learn from other folks, and help where I can.

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[Layla]

Welcome!

 

[24601]

Hi! Welcome to the forum!

Just out of curiosity which clinical trials did you take part in? What was your first surgery? Was your disease always only in your colon? Have you taken any maintenance meds since your last surgery? What sort of monitoring do you now have for Crohn's?

Glad to hear you've had nearly 10 years of remission! Look forward to hearing more from you!

 

[DuncanX]

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[24601]

Sorry to hear that you didn't get to continue on the med that worked for you but thanks for taking part in the trials! I tend not to meet the criteria for trials but it's a great thing to be a part of if you can, just a shame that you don't get access to continued meds when they work for you.

Perhaps, if you needed a med at any point, ustekinumab would work for you?

I don't think I've heard much about photopheresis but I've always been kind of interested in leukocytapheresis for Crohn's and UC so I may have to look up more about that one too.

When they did the ileal resection did they remove all the active disease in that area? And did you have disease in the colon at that point too? Feel free not to answer my nosey questions

Also, only if you want to answer, I just wondered since you are not on Crohn's meds, how low is your CRP? I'm just curious about the different standards we and our doctors set for 'remission'.

 

[DuncanX]

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[24601]

Glad because the process was so time consuming? When I had my stem cells harvested recently there were several patients coming in for their routine treatments (for non-IBD diseases) and it did seem like a huge time commitment - they were in twice a week, every fortnight. But then, in their cases, it was life-saving treatment and their only option so they certainly weren't complaining! I can't imagine wanting to do apheresis regularly if there was a choice of treatments but the studies I've seen for UC in particular do sound like it can be very beneficial for inducing remission rather than continuing longterm, plus the low side effects make it appealing.

Just so I don't seem like I'm asking questions for no reason, I'm always curious about people's experiences with the disease changing locations, hence that question, and also how some doctors will be happy with a CRP of <5 whereas others will nto consider it true deep remission unless your CRP <1. I'm currently apparently in remission with an undetectable CRP and I have to be honest it doesn't feel that great.

 

[DuncanX]

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