Ulcerative Colitis Triggered by Anxiety
Hi!
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 😀
Stay Safe,
Viktor
Hi Viktor, thank you so much for reaching out! I'm so glad that you found us. I relate to a lot of what you said, especially the piece about being sad and angry.
It took me a long time to come to acceptance--and I don't believe acceptance means being happy with the situation all the time. However, I started to understand that I have become the person I am thanks to my illness. I am now someone who is strong, thoughtful and more patient than I was. I also am better at being clear at what I need and only keeping people in my life who treasure me and love me despite my sickness. How did I get there? Time. Therapy. Writing my feelings out in a journal. Self-esteem exercises, like listing what I love about myself, what I'm proud of, and what I can do even when I'm sick. I also found that being around others who have colon issues helped - because I was no longer alone. Others understood me and normalized my experiences.
You mentioned that you feel you have a lot of anxiety. Sometimes it helps me to name what my fears are. That way I can combat them through logical thinking. But all in all, I do believe the feelings you are experiencing are so normal for someone who has been diagnosed with chronic illness! We truly do go through the stages of grief as we come to understand our new life. I say this because I want you to know that you are not alone. So many of us have been through this and we are now alongside you in this process. Please always feel free to share with us. <3 -Eshani (Team Member)
Nice to meet you, Eshani! 😊
Thank you for your response and the feedback! I've felt a little bit better recently, knowing that there are forums such as this one for people with chronic illnesses to share their experiences and thoughts on how to cope more easily. I also do believe that the illness has helped me become the person that I am today, and I'm extremely grateful for that! My therapist told me once that such difficulties in the form of chronic diseases come in our lives in order to change us for the better, if we only allow them to! And I keep reminding myself that this "disease" is nothing more than a Diagnose - it's not who I am! This has helped me immensely in not identifying with it and not living my life being enslaved to it.
How do you cope with exacerbations? It's been tough on me when there's a relatively good and healthy period in my live, and then suddenly the illness exacerbates. In such moments I find it difficult to stay positive. What's your formula in dealing with such situations?
😊
Kind Regards,
ViktorHi Viktor, I really feel like you've hit on one of the hardest parts of the disease. I get a big feeling of dread when I start getting sicker because I know that I'll have to limit my activities and foods more. It means that I will have to live life in a modified way and a lot of the time I don't want that!
But it doesn't exactly matter what I want, does it? Unfortunately, it just is what it is. So I try to focus on what I can do. I am a writer, actually, so I put a lot of time towards reading and writing because I think of the time at home as an opportunity to dedicate myself to that. I also try to challenge myself to cook good meals that I can eat, since I enjoy being in the kitchen. I am not sure if there are projects at home you like to work on, but maybe that could be a way of thinking positively? I also try not to worry too much about positivity in some ways. I just let myself feel what I'm feeling.
Curious if you or your therapist have come up with any techniques for you? I would love to hear them! -Eshani (Team Member)
there is 100% a connection between the brain and the gut. They don't call the gut the gut the second brain for nothing! Even in healthy people, periods of stress can cause upset in the bowels! The only thing I have ever been able to identify as a trigger for my own IBD is stressful periods of my life! It's worth noting that I said stressful periods, so it wasn't just one day of stress or anxiety. Whilst that might have triggered some symptoms, they were more general and not actually a flare.
If there is blood in your stool then it is something I would advise talking to your IBD team about. It seems that the only way to stop the cycle is to stop the flare. When you stop the flare, there will be no blood, and then there will be no stress about it. Have you talked to your IBD team and let them know that you are still experiencing blood loss?
At this point, I TRY to avoid stress whenever possible. It took a long time though, and I am generally a stressy, anxious person. For me, it was a long road of smaller changes with the goal of making bigger ones. Over the years I have moved jobs and now freelance from home so plan my own time. I have cut out people that bought drama and negativity into life; even family. I just don't have the time and energy to deal with it. No hostility - just not interested! I have improved my diet and exercise. I do yoga in the mornings which is the closest I can get to meditation with my always switched on mind! Holding the posture AND focusing on my breath is often a calming period for me. I make sure I take time every single day to do something I enjoy/want to do. Whether that's sitting with the dogs watching Netflix, reading, crafting, whatever! I need that me-time every day to just sit with myself.
~ Sahara (team member)
