Caitlin: Most days I think of the positives but can have bad days too

Caitlin M<sup>c</sup>Ginnis

Caitlin McGinnis

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).

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.

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3 Responses

  1. Constantly think of all those things…I got an osteomyelitis bag…stoma . It is permanent..cancer…always worried about having enough supplies..wat pepole think… wat is a normal life now…could not imagine how it would be for a pregnant woman our heavy set person…but it did save my life apparently..
    Very difficult times

  2. I had an emergency operation 2year & 3 month ago at the age 78 leaving me with an irreversible ileostomy so I have great sympathy with those young people. It’s difficult to come to terms with it and there are some embarrassing times, like when some friends took us to a nice place for lunch and my pouch leaked substantially. Since then I have always carried an emergency kit in my coat pocket also a full set of stuff in the car. Also it being a major operation which has left me with a raised sensitive scar so I can’t tighten my trousers so I have to wear loose clothes over my trousers even when I go dancing. You have to face the problems and get on with life whatever problems you have.

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