Hello, my name is Viv and I am a fellow ostomate. My story is not the easiest to write about, events that don’t turn out exactly as you hoped or wanted don’t always make for cosy reading. I was diagnosed with Ulcerative Colitis (UC) more than twenty years ago. I managed my condition reasonably well; flare ups were at times challenging to say the least. Being health conscious I was open to the UC dietary guidelines my Gastro dietician suggested; and I had a “show bag “of vitamins to support my immune system and general health.
Routine colonoscopies happened at least once a year and I was always a bit apprehensive waiting on my biopsy results. As the years went by and my gastroenterologist specialist of fifteen years eventually retired I was quite proud I had avoided his serious predication “All my UC patients eventually finish up with an ostomy!”. I quizzed my new Gastroenterologist specialist about his attitude to his UC patients and the prospect of removing their large bowel as a preventative measure against future bowel cancer. “It’s all changed now “ he said “ We really don’t do much of that anymore, even if there are low level pre cancerous cells” I breathed a sigh of relief.
In October 2019, I sat in the hospital recovery area waiting for my surgeon to bring me the results of my colonoscopy, I had no reason to think this report would be any different from results in the past. As he dropped into the chair beside me, he placed his report into my hands and said “You have an area of grave concern”. I asked him to tell me exactly what he meant, he said he “couldn’t because he didn’t actually know and we must wait for the biopsy results”.
Understandably I was very anxious and counted down the days for the final verdict. I was called into my specialist’s room and told “my time was up and I had to face the very real prospect my large bowel would be removed and an ileostomy would be the result“. I was in no way prepared for this outcome and with great reluctance agreed to see his preferred colorectal surgeon.
Like most people I have had to deal with serious and difficult events in my life, facing the surgeon and listening to his description of an ileostomy outcome was by far the most terrifying. I asked him how long I could postpone the operation for he said “If you have not booked by next month I am coming after you “. I am fortunate to have friends who work in the medical profession; one close friend insisted I get a second opinion; he was more than pleased to assist with the recommendation. Because I had three specialists involved already and they all agreed my area of grave concern needed to be acted upon I declined his offer. In the pre – op consultation with the Stomal Therapy Nurse I repeated the same words I had stated to my Gastroenterologist specialists and surgeon “I don’t want to have this operation, it is my worst fear realised”. Unfortunately no one offered any alternative options. How I managed to drag myself into the hospital on the day of the operation is still a mystery to me. Two days after my operation, still feeling drowsy after the anaesthetic, I became aware of my surgeon standing by the window looking down at the street below. Without turning his head he said “The biopsies have come back from your procedure and they are all normal”. I remember thinking “I must be having a nightmare. I will deal with this another time when I can think clearly”. But I wasn’t imagining or dreaming what happened, it was all true. When I read my pathology report it stated “The patient can be assured there is no cancer what so ever”. When is great news not so great?
The answer is when you have a stoma you may never have needed.
The surgeon apologised. My specialist said it was possible one day in the future I would have needed a stoma; at least I would never have to fear bowel cancer…
Over the past two years I have searched for a positive reason that justifies my having an ileostomy and all the associated challenges. One night in October last year I decided to write about all the important things I have learned about having a stoma. I called my story Starting over… life with an Ostomy. Omnigon generously accepted my e book and you will be able to find it here on the Omnigon Connect resource site quite soon. I have also written open letters to Stomal Therapy Nurses and Colorectal surgeons sharing my lived experience and hopes for better ostomy outcomes, especially when it comes to listening to their patients very real concerns and providing trained emotional support for those who are struggling with this life changing procedure.
Thank you for reading my story I trust it has empowered you to speak up and ask your medical team the important questions you need the answers for to help you become the best possible version of your new self. I want you to know I have moved on with my life and appreciate each and every day.
I still have my ostomy challenges but realise this is only one part of who I am.