> Crohn's disease > Stories

My Continuing Journey

Hi, Alison here. Just Alison that me! I have CD. Pretty nasty mean aggressive CD, but that is not who I am. Who I am is a lover of people and stimulating conversation. I embrace diversity and love to hear others stories. We all have one! I love art and I love nature. 

I was diagnosed 13 yrs ago. I have been on Remicade, Humira and Cimzia. All of which I now have resistant antibodies to. I have had bridge therapy with them all starting with azathioprine then 6 mp, then more 6 mp and ultimately methotrexate both oral and then an increased dose administered weekly sub q. I have had 3 bowel resections, dealt with 2 not so lovely perianal abscesses, had my gallbladder removed, had 4 years repaired in my abdomen via open surgery and endured a total hysterectomy all complements of Crohns. I don't tend to get fistula , but I do scar like nobody's business which causes stricturing- this the numerous resections and hysterectomy (bad adhesions) I went through one very scary high risk pregnancy since diagnosis but happily report she is a beautiful, healthy, well adjusted 10 yr old! 

I am unique in my CD as I tend to present with a multitude of what the Dr.'s refer to as extra intestinal manifestations. I have experienced everything from EN, those painful red/bruise like knots, purpura, bolous skin conditions to Uveitis. I don't really get tons of mouth ulcers but man o man they do love my nostrils. I have also had the "pleasure" (sarcasm) of enduring reactivated Epstien Barr and TB, yes, TB. It's a real risk when you are having to keep upping the immune suppressing drugs because the biologics aren't quite doing their thing. I have had to rely on FMLA more than once and can assist with questions related to that also. 

I am currently in a flare, it's the longest and most difficult to date. Documented via colonoscopy April 2015, severe worsening by September 2015, via MR Enterography . This prompted the medication change I am currently on. 

300 mg Entyvio going in next week for the final loading dose and weekly injection of 25mg of Methotrexate. 

 

World map of Crohn's disease


Find people with Crohn's disease through the map. Connect with them and share experiences. Join the Crohn's disease community.

Related books