Hi, my name is Maria and I got diagnosed with UC back in 2013. I had a pretty good treatment plan with Lialda (started with 2 a day, now up to 4 a day for the last 2 years) and occasional Prednisone to battle flare-ups. I am now 44 and the flare ups have gotten more severe and longer. I am steroid dependent according to my GI Dr. About to start Humira this Thursday Feb 17th, 2022.
I am an athlete. Runner and cyclist, avid weight lifter since I was a teenager. I like adrenaline. I like to kick ass in anything and everything that i do. Other hobbies are reading, hiking, and spending time with my dog.
I am from Mendoza, Argentina, and I now live in LA. I work in fitness.
When Symptoms are Present:
When I flare up, I have about 10+ BM a day. It really messes up with my lifestyle.
I absolutely cannot stand having this debilitating Autoimmune injury but trying to live with it as easy as I can. It has changed my life because it makes me feel wounded or powerless sometimes, and i do not operate that way. I do not like to rely on drugs but I believe I have no choice at this point. I used to be a long distance runner and triathlete but nowadays I do not feel like I can be out practicing sports for extended periods of time without having some sort of episode where i need a bathroom nearby.
I am very disappointed that GI Drs have no training in functional medicine, alternative medicines or nutrition. When I ask, all I get it, it is not food related, it is your system, you need these drugs.
My family is super supportive. My boyfriend in particular, never makes me feel embarrassed even though I have had times when I haven’t made it running to the toilet. My mom and brother live far away so they do not really know much about how this disease works. I feel like coworkers do not understand it either unless they have a close family member that has it.
I am most concerned about starting a new medicine that is an autoimmune suppressant drug. I do not like to rely on drugs on an every day basis to be ok. I still believe there has to be a different way with alternative therapies, but cannot stop any drug treatment now or will go into a flare up. Even when I tapered to 10mg Prednisone I could tell my system got used to the bigger dose and relied on it, sadly.
Questions from Maria:
- My questions are: can I go to Walt Disney World two weeks after starting Humira?
- What to expect when on Humira?
- How fast does it work, on average?
I have tried:
Lialda (worked for the most part, since 2013)
Prednisone (tapering from 40 mg to 30, 20, 10, 5 over several weeks): works when on a flare-up
Budesonide: didnt work
written by Maria G
submitted in the colitis venting area