I have been struggling with the fact that I will have an ostomy for the rest of my life. When I initially had surgery in 2011, the plan was always to use my j-pouch. Not once did anyone ever mention that I may have an ostomy forever. When these finicky fistulas got in the way, it became clear that I may never be able to use my j-pouch.
Here I am, 7 years later with my ostomy. Most days, I deal with it fine but others are a lot harder. I now think about my future in different ways. I am 30 years old and would like a family someday. I think about the possibility of infertility or being pregnant with an ostomy and how that will be. I think about when my kids will ask me what that bag is. I think about being old with my ostomy and the idea of not being able to care for it independently. I get angry and sad to think that I’m going to have to deal with this forever. I get frustrated that I will always have medical co-pays (I should be thankful I have health insurance!). I get frustrated that I will always have to bring back-up supplies with me everywhere I go.
As I was having these thoughts last night, I immediately tried to think of the positives. I am very blessed and I know that. I am blessed to be alive and “cured” from Ulcerative Colitis. On the other hand, I also think it is okay to have self-pity (at times). It keeps me grounded and reminds me of all I went through. I can’t walk around and pretend that everything is okay. I no longer deal with UC but now I have chronic back pain from my multiple abdominal surgeries. I still have joint pain and my muscles are tight and constricted. I am now dehydrated majority of the time and drink at least one Pedialyte powder packet per day just to feel “normal”. I can no longer drink alcohol because it makes me feel very sick. Yes, I no longer have UC but my ostomy has brought on a new variety of chronic issues.