Recently Diagnosed Support Group

[Julia S]

As someone recently diagnosed, I think it would be useful to have a place to discuss first treatment options (eg: step up vs step down), anxieties, tips and recommendations as to how to live with IBD and to receive some positive encouragement from those who have been struggling with this disease for longer.

 

[ronroush7]

Support here

 

[Julia S]

Hi Ron! Hope you are doing well!

 

[ronroush7]

Thanks. I have been having a lot of leg pain recently. Urgent Care wasn't much help. Going to gi. May or may not be reaction to Humira. Hope you are well.

 

[Julia S]

Have they ruled out a blood clot? How long have you been on Humira? And how long with Crohns, if I may ask? As a newly diagnosed person, I wonder what the prognosis is like for most people. Did your disease start off as mild and then progress? Have you tried other anti-TNFs and immunosupressants? What was your best experience so far?

 

[ronroush7]

I was diagnosed in 1990 with Crohns. I have wondered a few times recently if I had a mild form of it before then. I had surgeries in 1989 for both a fistula and hemorrhoids. The surgeries weren't healing properly. A surgeon determined it was because I have Crohns Disease. I have a history of fistulas. The first biologic I was on was Cimzia and that was the best one I was on. I have also been on Remicade, Stelara and right now Humira. I have wondered about a blood clot

 

[Julia S]

What was your longest period in remission? Were you in remission before the biologics?

 

[ronroush7]

Eight years. I was in a clinical trial. I was given a placebo but for some reason I still went into remission.

 

[Julia S]

I'd love to know that from people in here in general... what was your longest time in remission and what drugs were you on then? Just to give us newly diagnosed a little bit of hope that a long remission period is possible...

 

[ronroush7]

What was your longest period in remission? Were you in remission before the biologics?

I think it was before biologics that I went into remission. Everyone is different.

 

[weetpeabexx]

new here and recently diagnosed. the aniexty the fear and upset is very real and is heartbreaking

 

[ronroush7]

new here and recently diagnosed. the aniexty the fear and upset is very real and is heartbreaking

I am sorry . Have you spoken to a doctor about this?

 

[weetpeabexx]

no i actually haven't seen him since being diagnosed

 

[ronroush7]

no i actually haven't seen him since being diagnosed

How are you doing now?

 

[weetpeabexx]

last night after dinner i got sick in the parking lot..... but today been a good day overall although i did sleep half my day away. :/ don't really have the energy to do anything but I'm forcing myself to.

 

[MizzSarah]

I was diagnosed in 2014. My doctor was hopeful that being on budesonide(entocort) would be enough but in the year I was on it did nothing. I believe I started on Humira at the start of the new year. In a years time on Humira I was in remission. I however make sure to point out though that medically I’m in remission but I’m still symptomatic. It took me awhile to understand how I could be medically in remission but still having issues.

I have been on Humira since.

I'd love to know that from people in here in general... what was your longest time in remission and what drugs were you on then? Just to give us newly diagnosed a little bit of hope that a long remission period is possible...

 

[Anna's Bandit]

Another thread......dead.

Hi.

 

[Gravitypilot]

Howdy howdy howdy. Newly diagnosed. Kind of scary also liberating. I have had gastric problems since I can remember. Even as a child my Dad would have to stop the car on the side of the road so I could use the bushes. I’ve tried so many things to stop the flow to no avail. Now I know why and it’s good to know. It’s also good to find other warriors battling this monster!