Hi, I am new to this forum and just wanted to share my story, which from what I've read so far is similar to others.
Diagnosed when I was approx 18 (1988)
First surgery in 2005 - 30cm of small intestine and appendix removed. Relief for about 9 months until it returned at joins. Relief during my 2 pregnancies. Other than that a daily struggle with the disease,with good and bad and then very bad days.
Tried a variety of drugs, prednisolone, cortisone steroids- mainly for flare ups. Immuno suppressant drugs - cant remember all the names. Hate pred drug and refuse to ever have it again. Got lump on back,cushiins syndrome and face swelled up. Had humira fortnightly for 2 years, now swapped to infliximab infusions every 8 weeks, and methotrexate everyfriday. Use Imodium just about every day. Methotrexate has now affected my liver and losing hair rapidly. Reducing dose of this now. Awaiting stelara trial ethics approval, in approx 6 weeks. Vit b injections 3 monthly. Iron infusions, next one on tuesday so should feel good after that. So here's looking at yet another guinea pig experiment,and hoping this is the one.
Petina
Diagnosed when I was approx 18 (1988)
First surgery in 2005 - 30cm of small intestine and appendix removed. Relief for about 9 months until it returned at joins. Relief during my 2 pregnancies. Other than that a daily struggle with the disease,with good and bad and then very bad days.
Tried a variety of drugs, prednisolone, cortisone steroids- mainly for flare ups. Immuno suppressant drugs - cant remember all the names. Hate pred drug and refuse to ever have it again. Got lump on back,cushiins syndrome and face swelled up. Had humira fortnightly for 2 years, now swapped to infliximab infusions every 8 weeks, and methotrexate everyfriday. Use Imodium just about every day. Methotrexate has now affected my liver and losing hair rapidly. Reducing dose of this now. Awaiting stelara trial ethics approval, in approx 6 weeks. Vit b injections 3 monthly. Iron infusions, next one on tuesday so should feel good after that. So here's looking at yet another guinea pig experiment,and hoping this is the one.
Petina