Posted 12/21/2020 2:58 AM (GMT -7)
Hello team,
I hope you are all well and as healthy as possible! I would like to share my current experience with you and listen to any opinions/advice you might have.
So I am 29 and I've been having Ulcerative Colitis for 15 years now. I am currently having the most severe flare-up of my life, had to be hospitalized for the first time ever and actually I am still in hospital.
So far my maintance therapy had been mesalamine 3g/day, my flare-ups had been mild to moderate and mesalamine/steroid enemas would do the trick for me and induce remission.
However, this time everything is completely different. I had extreme pain, more than 20 bloody bowel movements a day, extreme nausea and I even vomitted a few times. I tried steroids both rectally and orally but they didn't work at all.
I did a colonoscopy and the doctor told me that although the ulcers are limited to the left side of the colon, they are quite deep and therefore my colitis is quite severe. So I was admitted to hospital and he initially put me on IV steroids and on Remicade. Although my symptoms improved significantly from the first days on, the 2nd colonoscopy didn't show much improvement histologically.
Therefore, the doctor told me that I've failed Remicade and decided to switch me to IV Cyclosporine. I've been taking it for 10 days now and now switched to Cyclosporine pills. I am certainly responding to it, as all my symptoms have almost gone away (bowel movements have decreased to 3/day, I have no pain at all, etc), but my only concern is that I am still having some blood from time to time and my stools are not yet consistent enough. The doctor tells me this is normal and he's planning to put me on Stelara too on Thursday, which hopes that will put me in remission in combination with Cyclosporine.
Although I am trying really hard to remain positive and believe this will work, I cannot hide how stressed and nervous I am feeling about all this situation. I am trying not to think of the worst case scenario but I know that this combined medication is my last resort before surgery and this totally freaks me out.
Last but not least, my doctor told me that the trigger of this severe flare was the stress and emotional pain I went through due to the loss of my dad to cancer, a few months ago and therefore it is extremely important to keep myself as calm as possible in order to get out of this flare, which of course causes me more stress.
You know, I am gettting stressed, trying not to get stressed...
I am sorry for the veeery long text. Any opinions or similar experiences would be greatly appreciated! Thanks a lot in advance for your time and help!
P. S. Don't forget to stay strong, we are cursed to live with this awful disease but we should never give up!