Wednesday, May 11, 2011

Crohn's

My daughter has Crohn's.  It has messed up her insides and she has been sick from the latest outbreak for over a year now.  She has been patiently healing and putting up with the pain of it for soooo long.  We thought she was going to be able to have the drains removed and the temporary colostomy reversed by summer, but instead she has to undergo another procedure very soon to make the colostomy more permanent "for awhile", until things heal up a bit better.  The big bombshell the surgeon delivered on Monday is that, in this procedure he may find that the tissue is unable to sustain the staples he plans to add.  If that is the case, he will have to close up the existing colostomy and open a new one on the other side of her abdomen.  She called me.  We cried.  A lot. 

Crohn's is a hateful, horrible, incurable disease that just makes life a living hell and turns healthy, vibrant people into semi-invalids (or worse).  I am furious at the disease.  And my heart hurts.  

4 comments:

  1. I love you, Mom. I'm so grateful to have such an incredible and loving mother who will cry with me. You've been instrumental in helping me get through this tough year.

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  2. Hi, I really feel for you. My younger daughter has Crohns too. Except believe it or not she isn't as lucky as your daughter. Lucky you say? Yes I reply. Stacy has her Crohns in her small bowel so she can never have a colostomy bag because only people who have Crohns in the large bowel can have this procedure. I know it's not very nice but trust me it sure beats heavy doses of steroids. My daughter has had so much steroids that she now has the bones of an eighty year old. Both her hips have avascular necrosis and because we live in the U.K. where they have a wonderful National Health Service they say at 37 she is too young for hip replacements. So she's in a wheelchair some of the time as it hurts her so much to walk. My daughter-in-law has Crohns too but not nearly as bad as Stacy. Stacy spends so much time in hospital it just isn't true. It is a horrid disease and my heart is truly with you as a mother who's child has no quality of life whatsoever. IT STINKS!! My heart hurts too.

    Love

    Patti xxx

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  3. Oh, Patty. I'm so sorry for your daughter. Mostly I've been able to be symptom free with the use of an immune suppressant so I don't have to have all the steroids. I have Crohn's in the illeum and have had 2 resections. So, I do have it in my small bowel. It only recently flared up in the colon as a result of an abscess. I really hope that she is able to get different treatments that will help her. I hate this disease but am just doing my best to keep going to love and serve those around me. I'm not always very good or gracious but, well, I try. :) I'll be praying for Stacy.

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  4. Patty I am horrified at what Stacy is forced to endure due to this terrible disease. I am weeping for her and for you as I write this note. I can feel your frustration and anguish through your words and believe me when I say I DO understand. I am watching our US health care system crumble into a nationalized mess and fear the effects it will soon have on the quality of and access to health care, especially for people who suffer from severe chronic illnesses such as Crohns. Patty, my daughter and I will certainly remember you and Stacy and your daughter-in-law EVERY day, in our thoughts and prayers.
    With Love,
    Sheryl

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