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 a partner in our marriage. My caregiving 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 one's physical abilities, which do change, but it should not define you as a man, a husband, a partner, a woman, 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.
Your posting really disturbed me...especially the part where you say your husband blames you for his ileostomy. I think he may feel that he has to blame someone or something, and you're the closest one.
It's totally unfair of him to do that. I'm assuming that you had no choice in your decision and that the doctors told you it was the right, if not the only choice to make. As someone with an ostomy, I think your husband is very lucky to have someone like you. Not all of us do. And unless, I'm missing something, I see no reason why he can't take care of his ileostomy himself. Is there some reason he can't? Are you the only one who can keep track of his output? Most people on here deal with it themselves. Why can't he? Why do you have to wake up every two hours to deal with that? This might sound cold to you, and maybe it is, but I think your husband needs to "man up" a little bit and start taking care of himself. That would certainly alleviate the supposed guilt he feels by making you do it. I may be missing something crucial here, maybe he can't take care of things himself, but as I see it, your husband needs to get on with his life and be happy he still has a life to get on with. He should NOT be blaming you!
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If I was a relative newbie with an ostomy, I have no doubt that this site would be very helpful to me. The members are quick to respond to questions and issues and they are filled with experience. When I joined, I already had a lifetime with an ostomy, so I just regard it as a place to meet and communicate with other folks similarly situated. Either way, it is a good site.
Kersensa, my thoughts were exactly the same as Weird New Life as I read your post! None of us would have chosen to have an ostomy if it had not been a life-saving decision, as I am sure yours was as well! There is no guilt to be served on either plate! It seems there is possibly some responsibility distribution that needs attention! I could not imagine my husband managing my output or changing my pouch! That is a heavy burden to lay on anyone, and unless there is more that is not said or implied here, such as his physical inability to care for himself, you may want to address his care with him and his physicians! If it is a health issue prohibiting him from taking care of himself, I am sorry, and certainly commend your love and caring for your man! Your 8-year sentence is well served! We are your friends here and only mean to help, but if he is able to help himself, maybe there will be less guilt on both sides! I, as well as most others on this site, lead full, active lives. It only takes a little planning. Would not have it any other way!
Puppyluv
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I agree with prior notes. Your husband needs to take ownership and responsibility. I am thinking his attitude predates his surgery. Please know that we're all thinking of you and sending good thoughts. I am thinking you should give some thought to seeing/talking with a therapist.
With best thoughts and wishes,
Mike Q
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
