About a week ago, a "new estimate" picture and story was published by a gentleman - I cannot remember his name. He was very unhappy and upset about the cancellation of his ileostomy reversal surgery. In fact, I think the doctor told him he could no longer have a reversal. His post made me feel so bad for him, and I wanted to reach out. The new pic post said he was last on the site one month ago, so I thought reaching out might get him back on the site for support. I started to write (offline) a note to him to cut and paste later. The note turned into a novel, and with daily interruptions, it took me a day or so to go back to the site and forward it to him. The problem was, when I looked at recent profiles, he was nowhere to be found. I am posting this novel in hopes he will see it. This is what I wrote.
I totally understand your feelings. I too had the hopes of a reversal in short order but then had a heart attack. This led to a longer wait. I could not comprehend waiting; I wanted that stoma back in its proper place post haste! After 6 months of waiting, I was told I could have it reversed. Wait, what?!
Well, it's been a year and 7 months now, and I still have "Seymour" (stoma pet name) on my belly. Reason you might ask? Indeed, there are several.
Number one: I feel good and now worry a reversal may change that.
Number two: Distrust of doctors
Number three: My age (78). Do I really want to risk the time it takes to feel well again, and will I truly feel well again? Will I spend the remainder of my years in pain, discomfort, leakage, bathroom runs, and worried about doing things for fear of all these possible results?
Number four: My heart issues - although I take no medication and feel good, I sometimes wonder if my heart issues were related to the shock I suffered when they removed a foot of my colon, my appendix, and my right ovary due to an orange-sized infected diverticula? Prior to that, I was extremely healthy and active. Will my heart withstand this invasion?
These are just a few of my concerns about reversal. Living with Seymour has its issues as well, and I try to balance my GRIPES and GRIPS with having a stoma.
Seymour has now become my lesser of two evils - reversal or just accept him and move on. I am still open to reversal should my circumstances change. I do have a peristomal hernia now, which they say is not uncommon; however, if it becomes larger and must be repaired or other issues appear, I will need to reconsider my path.
These are just a few of my thoughts. Again, I do understand how you are feeling though and wanted you to know I felt EXACTLY as you do at the beginning of my journey. Time does heal - or at least softens the initial blow! When the doc came in to tell me I needed surgery immediately and that I was going to have an ostomy, I just wanted to die. However, that was not an option or choice! My mind was spinning. My only knowledge of the word ostomy was a recollection back in the 80s when a co-worker told me about her father-in-law having one. Remembering things she told me at that time was beyond my comprehension, and now it was happening to me, and I knew it was not good news. I have no memory after that until some time later, looking down at the thing sticking out of my belly that actually made me nauseated. Fortunately, I have a loving and wonderful husband of 57 years who was strong for both of us. He watched and learned how to dress the wound while I turned completely white and thought I would either throw up or pass out! The stoma nurse actually said to him, "Look how white she is getting!" I have survived and live peacefully with "Seymour" (which is named after the movie "Little Shop of Horrors") not because I liked that movie but the name just popped into my head ("feed me Seymour") when I looked down at my stoma for the first time.
This site says your last visit was 1 month ago. I hope you will continue to come back as these folks are a wealth of information, support, and some humor thrown in as well. Some of these Ostomates have many years of on-the-job training and experiences which they freely share to help one another. This is not the case with many surgeons (in my experience), gastroenterologists, and general practitioners - probably because they are not Ostomates. The next best source is a good stoma nurse (also referred to as WCON/WOCN) and, of course, the internet! Each individual has more and/or worse problems than the last, and so many are very young - I remember this when I get down and I try not to feel sorry for my old self.
I hope I haven't bored you with my history, but I felt compelled to write to you because I do know and understand what you are going through, and hopefully, this too shall pass or at least subside as it did for me. Wishing the very best for you. Justbreathe
