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Coming to terms with your baseline health after surgery

Many of us diagnosed with a chronic illness later in life (not at birth) end up having a new “baseline”.

Coming to terms with your baseline health after surgery

I was diagnosed at age 22. I am now 28 and can’t remember what it feels like to not be sick. Although, I’m essentially “cured” of colitis with my ileostomy, it brings it’s own challenges. I had a baseline with colitis and now I have one with my ileostomy. 

My new baseline is much better than it was with colitis; however, I’m still dealing with “stuff”. I still often have joint pain in my knees and ankles and sometimes in my elbows and wrists. This was a big issue when I had colitis. Dehydration is a huge problem that I still struggle with on a daily basis. Being dehydrated brings it’s own issues as well which contribute to feeling bad. I’m also dealing with my ostomy on a daily basis. Making sure it’s not leaking, checking to see when it’s time to empty, deflating it from gas, changing it, etc. Although I don’t constantly think about it, it’s lingering there in the back of my unconscious.

I have learned to live with my active symptoms, no matter how debilitating they are. I try not to let the symptoms affect my daily life. I work full time in a hospital and have an active social lifestyle. However, at times, my symptoms can prevent me from doing certain things. Since it’s summer, it’s been more challenging to deal with heat and humidity with an ostomy. I’ve changed it much more often than I usually do. I’m definitely paying more attention to it now that I’m sweating more. I don’t swim as often as I used to when I didn’t have an ostomy. I’m constantly worrying about the wear time and it seems to get puffy/inflated whenever I’m in the water.

At times, my back and joint pain prevents me from doing activities. At times, my back hurts so badly when I stand that I need to sit down. It’s difficult to stand or sit for long periods of time. When I stand, my middle to upper back really hurts and when I sit, my upper shoulders have extreme pain. I can’t seem to win either way. The pain in my back and joints can affect my sleeping as well. Because I’ve lived with these symptoms for a few years now, they have become my normal and I try not to let it affect my daily activities and doing the things I enjoy. Overall, life has changed for the better even though there are some setbacks here and there. I’m sure we all have our new “baseline” and we just learn to live a new life without losing the things we enjoy.

Visit Caitlin over at her blog site myjourneywithstan.wordpress.com

If you feel that sharing your story could help others, then we would love to hear from you. Please send your story to mail@eakin.co.uk