Hello, my name is Kerensa. I am the sole 24 hour a day caregiver to an ileostomy survivor. My husband, Henry, has been visiting this site for quite a few years. He is often brought to tears learning of the stories shared here; the most prevalent being divorce and loneliness.
I want everyone on this site to know that you are NOT defined by your ostomy. You are NOT unattractive because of your ostomy. You are NOT redefined by your ostomy!
There is a children’s book titled Everyone Poops. Well, that’s true only when they are alive. The book does not describe when and how people or animals poop, just that they do. Well, I for one am thankful that my husband still poops. I am thankful that he is still with me. I am thankful that he is partner in our marriage. My care giving of Henry does not come without personal cost.
The things that I am not thankful for as a caregiver are just as important for me to share as the things that are because they speak to the whole, which in my case has very little to do with Henry’s ostomy or his inability to care for it.
I am NOT thankful that he still blames me for making the decision to eradicate his intestines when he was in a coma. I HATE the hate in his eyes when it is a difficult change out. I HATE that he feels guilty about my supposed sacrifice to keep him alive on a daily basis, trying to keep him positive, holistic gardening and cooking skills to make sure his PH balance will not become too acidic so as not to breach the seal prematurely. Anyway, whether I am reaching ostomy survivors or caregivers, PH is EVERYTHING.
Waking up every two hours to check his output does not bother me, but most of the time, I cannot get back to sleep. This, ironically, bothers him more than me…again with the guilt misappropriated.
It is important to know, as a caregiver, that it is not necessarily YOUR responsibility to upkeep the patient’s self-esteem. However, I believe that it is VERY important that the “patient” does not ‘feel’ any different. One should always pay attention to ones physical abilities, which do change, but it should not define you as a man, a husband, a partner, a women, a wife. If you need help in this regard, please seek it…whether you are the caregiver OR the patient. I only hope that my words give some comfort to both groups. In NO way does this message intend to hurt any feelings, it is only offered as encouragement to a demographic population that is not understood and may not feel that their voice is being heard.