Hi Janelle! Thanks for your comment, and always Great to meet a fellow ostomate...I have mine through cancer, but my brother has Crohns so I know a lot about it and how disabling it can be...Hope you are well at the moment :) x
I have been out of remission since 2013, so I am doing as well as possible at this moment. Severe fistulating Crohn's with CPS and other co-morbities. On Entyvio and low dose chemo shots to reduce symptoms but the regiment is not remission producing. Waiting for new biologics to be approved for by FDA. Hugs to your brother. My brother and I are both Crohnies. His is much milder than mine. Thank God!
Janelle, that is FANTASTIC about the cancer remission since 2013, so glad :) And yes, it's something that people don't really know an awful lot about, IBD, and unless you're on a severe flare-up you look healthy and like nothing is going on. At the moment my brother has a very low blood count, so transfusion pretty soon I think, his under-eye area turns grey/brown and he looks really gaunt...horrible to see :( I wished years ago I could have it instead of him...My brother has been on most approved Crohn's medication, but like so many other medicines, they stop working after a while...Hope you start feeling better very soon...I'm always here to chat to...you can message me on my Got Stoma? Vlogostomy Facebook page too if you like :) xx
I said cancer remission, don't think that's what you meant Janelle, it's a bit of a habit now to go straight to cancer as it's what a lot of people message me about...Did you have cancer? Sorry :/ xx
Got Stoma? Vlogostomy No to the cancer but it is easy for people to think that. My Crohn's fell out of remission or flared permanently despite treatment since 2013. So I have been flaring for over 4 years now, Crohn's since childhood in the severe range can have awful effects on the body. I lost most of my hair (including areas of legs and arms) in 2014 due to severe reactions caused by my immune system attacking me. I get infusions every 8 weeks at the cancer center but still do not have the big C word. I have been through numerous cancer scares since 2010 though, but so far no cancer. I am being checked for tumors and such at least once a year. I take low dose chemo for the Crohn's and Arthritis. I grew a giant benign abdominal tumor (no cancer) while on Humira (TNF-inhibitor) shots in 2010. So my doctors watch me closely. Since starting Entyvio (the newest biologic) for Crohn's last year my hair grew back and nutritionally I am stable. So my nutritional deficiencies are reversed but my inflammatory markers are still high. Also having abnormal liver enzymes at times so I do not know how long I will remain on Entyvio. So kind of like being stuck between a rock and a hard place. No more surgeries or I could develop short bowel syndrome.
