First Time Post
There is no ‘known’ history in my family of Crohn's/Colitis (my doctor is leaning towards Colitis for myself as it is not definitively clear)
All started for me back in 2012, when I was burning the candle at both ends doing 15 hour days on hardly any sleep, eating junk food daily and drinking energy drinks. (If I had known back then that this would have been the catalyst, I would have not done this!). I went to the hospital when I was experiencing a flare up, no solid stool and was struggling to hold my bowels at any given time of the day. Doctor did all the usual tests, diagnosed as Crohn's, prescribed me with high dose prednisone, tapering down. All was fine, no requirement for any maintenance medication.
All was fine for 5 years. Fast forward to 2017 and I experienced a flare up out of the blue which really took the wind out of my sails. I went to the hospital and explained my previous diagnosis and symptoms. The usual battery of tests and samples were given. My levels of fecal calprotectin were 6000+. I started on steroids straight away, after tapering down the steroids, I was given mesalazine (orally) and pentasa (suppository). Which I have been taking daily since.
From that time till now I have experienced flare ups, good days, bad days, and really bad days with some periods of remission. I have ended up finding out the food which can trigger it off for me and also what helps.
I always feel that for me stress is the worst factor for bringing up a flare or a random bowel movement which causes me discomfort.
Turn of the new year my doctor decided that the medication was not as effective as it had been, so the decision was made to start me on Adalimumab (humira). It has been around 2 months since I have been on it, but I have flared up over the past two weeks and also caught COVID this week so dose for this week.
Everything now is just a blur in terms of where I am with progress. The one thing which has worried me since January, my bowels appear to store everything and then randomly at anytime of the week on a random day, they will just open and within the space of an hour, I will go to the bathroom 4-5 times and feels as though my colon just empties itself and ‘resets’ until the next time (no diarrhea). Not sure if someone has experienced this before or not? If they have can they shed any light on it?
It has been a long hard journey and the above is really affecting my day to day as it is so hard to plan what to do and when. My journeys to and from work have that additional pressure and also when I am out of the office for a few hours away from the bathroom!
Looking forward to learning other people's experiences and getting through this tough journey with the community.
Phew, think that’s everything.
Do you have a diagnosis story to share?