I have been hesitant to write this post because of how dividing getting the COVID-19 has become in recent months. The point of this post is not to talk about the pros and cons of getting getting the vaccine. There have been (and will continue to be) far better writers, who can write about the facts more eloquently then I could ever do.
No – the point of this point of this post is to give others with Ulcerative Colitis or another IBD some light on what they might experience and to let them know that they are not alone.
A Bit of Background
As someone living with Ulcerative Colitis, I had been doing relatively well since Jan 2021 when I was officially in remission. That was a far cry from where I was a year and a half prior. During that time I was in a pretty horrible “flare” as we in the IBD community like to call it. Basically the immune system of my intestines was fighting me and it took many months of being on high doses of Prednisone, a failed trial of ENTYVIO before Remicade turned the tide.
Being on Remicade allowed my intestines to heal and induced remission. I finally was able to slowly wean myself off Prednisone. When I was cleared to run in February 2021 I felt that 2021 was going to be great!
The Moderna COVID-19 Vaccine
I am lucky that I do not have many of the negative effects of getting monthly infusions of Remicade. However, because Remicade is a biologic (made from parts of living organisms) I am more susceptible to get infections. Since Remicade is an immunosuppressant I knew that I was more susceptible to get COVID-19, and actually did. Luckily my symptoms were minimal. The only real “problems” were that I lost my sense of taste and smell couple of weeks.
I had done the research, and my own due diligence and knew that I wanted to get the vaccine. I had been hoping to be one of the first to get it, given my immunocompromised status, but that was not the case I ended up choosing a vaccination location that was giving out either Pfizer or Modera. The day I arrived they were “giving out” Moderna – so that is what I got.
The first Covid-19 vaccine shot went smoothly and I was hoping for the same after my second shot, but that was not the case. I did well for the first 24 hours but for the next 16 hours I felt like I had the flu. However, as many others have reported after that I felt fine. Running continued to go well and I felt confident that I had breezed through the vaccine with minimal problems.
The After Effects
Two weeks after I received my second shot my GI tract started gurgling (and not in a good way). It was a gurgling that I knew all too well. I thought I maybe ate a bad burrito. However, after a couple of running “incidents” , eating issues and ultimately blood/mucous – I reached out to my GI doctor.
Tests were run and stool samples (sorry for the TMI) were obtained but everything came back normal. It’s the worst thing when you know what is going on but the test result don’t support it. I (again) had to be more mindful of what I ate but that did not seem to do any good. Ultimately I increased the dosage of my medications, went back on a nightly foam enema (WHICH IS THE WORST), & had to re-start Prednisone. That sucked! The dosage started at 20mg but it was only when I went up to 40mg that I felt some relief. I also continued my Remicade infusions, hoping that the combo would ultimately “right the ship”.
Ultimately I finally was able to have a face to face with my GI doctor in July. By that time my all the medication that I was pumping into my body was having a positive effect. Runs were going somewhat better and I was able to keep food down. At that point I was in a flare for about 2 months, funny enough it was during this same time of year almost 2 years ago when my last flare started.
We discussed how I was feeling (slightly better) and I asked him his thoughts on IBD patients and the vaccines. He said that the vaccine research is still new but there is no correlation (now) between getting the vaccine and triggering a flare. What he said is that my symptoms might have been a temporary side effect rather than a flare. He did say that my symptoms were on the lower end of the spectrum of his patients that received a vaccine. Good to hear but did not make me feel any better at the time.
Even though I am in remission, my Ulcerative Colitis has not “disappeared”. There is always the chance for a flare-up. What I have to determine is whether the flare is a blip or if it keeps getting worse. At that point it might mean that Remicade is no longer effective). That was eye opening for me as I thought remission = forever. Apparently that is not the case.
What Now – A 3rd COVID-19 Vaccine Shot??
As I type out this post I am doing well. My symptoms (knock on wood) have subsided. I am tapering (again) off Prednisone and have stopped the “foam”. Running is going well and if it weren’t for the heat – it would be lovely.
A 3rd Moderna shot has made new recently, and honestly I am not sure if I would get it. I have worked hard to get “back to normal” that I am not sure I want to feel that shitty again. I might get my antibody levels tested since there is evidence that given my immunocompromised system I produced less antibodies.
So we’ll see – just know that if you are experiencing symptoms it’s possible its from the COVID-19 vaccine. OR it’s possible that you might have been under some stress to cause the flare up. Regardless know you are not alone!