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Reply to "Having hard time dealing with having an ileostomy"

skn69,

You are an amazing person with an amazing story!  Thank you for sharing it with me.  I seem to turn to this site in during my low times, looking for a glimmer of hope or some information I over looked.  I am somewhat of a control freak and also a problem solver but I am not a medical professional.  Diseases and the destruction that cause are completely out of our control.  I have good days and bad days.  My biggest struggle right now is finding a pouch system that works for me and stays in place with out leaking.  changing a pouch three times in one day is too much.  The location of my stoma was good when I was young but now that I am older I carry extra weight in that area and it is also the same site of my original stoma so there is a lot of scar tissue.  I have a wound very close to the stoma on my skin that is not healing.  Sometimes it hits me and I just don't want to do this anymore but its not like I have a choice.  Its easy for me to become self absorbed and my wife has been very understanding but has grown weary of that and needs me to focus on her.  I hear stories like yours and think to myself that I need to be grateful and remember that my surgery saved my life.  I had a gift of living 28 years without many complications and thinking my UC was cured and then I found out that I didn't have UC but Crohn's disease. Only a few months ago I was living my life and enjoying it, now my bathroom is filled to the brim with medical supplies and medications and I have to get infusions and go to the doctor a lot mote than I want to.  I am holding out hope that my fistula will heal and my j-pouch can be hooked up again but I know I need to mentally prepare myself for what comes next if it doesn't.   Thank you for reaching out to encourage me and for sharing your story.

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