I just found out about this forum and I was extremely surprised to see that people with IBC/UC/IBD actually do talk about their experience! Apologies in advance for the long text, but I hope that at least some of you would relate. Here it goes:
I was diagnosed with ulcerative colitis three years ago. It happened after excessive pains in the abdominal area, 10 visits to the toilet a day, diarrhea mixed with blood. I was then admitted to hospital for 2 weeks before they could figure out what's going on. The colonoscopy showed UC - most of the colon was affected. I was given Salofalk, Corticosteroids, Probiotics, Antibiotics, and the list goes on.
Since then I was admitted to hospital a couple of more times due to inflammations and complications and was given Corticosteroids once a year.
I've been in remission for the past year and a half! I'm just still taking my preventative medicine (Salofalk - 3 grams a day). The problem, however, is the following: apart from this disease I also happen to have anxiety and panic attacks from before that. The thing is that, the anxiety triggers a response in the colon, causing it damage. Unfortunately, this is my weak spot. I see it as something like double trouble. My anxiety triggers my colon to worsen, which on the other hand increases my anxiety even further. Thus it's more of a going round a hell circle.
I've had periods when I was feeling really well, anxiety-free, and my colon was doing great due to that, as well. So, it's apparent, at least for me, that mental health has a direct! link to colon health. I've been going round and round this circle for some time now and I'm currently a bit stuck, not knowing what to do about it. It's truly horrifying, as you may relate, seeing blood in your stool. All past images of hospitals come instantly to mind.
How have you managed to live with this chronic disease? I don't think that it affects me as much as it did in the beginning, mental-wise. However, it still does affect huge part of my life in a way that I'm constantly becoming sad and angry, when there's a problem with the colon, namely blood coming out.
I would be extremely grateful if you could share your own stories and experiences, and possibly give an advise for a possible coping mechanism 😀