Why share what life is like with a permanent stoma? Who needs to know and who cares?
All questions I think of often and a recent news story highlighted, for me, just how imperative it is to share experiences, knowledge, and both sides of the story.
This recent news story broke my heart! I could not begin to know how or why, the man in his 30’s came to the decision to die rather than live with a permanent stoma. I didn’t know him, I don’t judge him, I just hope he is now at peace.
A judge has ruled a sedated man in his 30s should be allowed to die rather than live the rest of his life with a stoma. Doctors will now stop providing the patient with food and water, and move him onto a palliative care regime.
The seriously ill patient who has suffered long-term bowel problems made clear his wishes before going into intensive care at Barnsley Hospital.
Following major surgery, specialists put his chances of survival between 60 and 70 per cent.But they said he would need a permanent stoma - a surgical opening on the abdomen though which urine or faeces can be diverted out of the body.
The man had lived with a temporary stoma before and 'hated it,' his parents, who respect their son's wishes, told Mr Justice Hayden during Monday's Court of Protection hearing.
Speaking via videolink, his mother described how her son said: 'How can I get a job? How can I get a woman?'
Anybody could need a stoma at any point in their life,
The colon (large intestine) can be damaged or diseased for many reasons leading to surgical removal. These can include inflammatory bowel diseases, such as ulcerative colitis and Crohn’s disease, cancer, FAP (Familial Adenomatous Polyposis), motility issues (bowel lethargy leading to slow transit of food) and trauma to the abdomen.
With a Brooke ileostomy, named after Professor Bryan Brooke, the lower end of the small intestine (ileum) is brought out through the abdominal wall (known as an ileostomy), and bodily waste (poo) is collected in a bag stuck onto the abdomen. When the bowel is brought out through the abdomen, approximately 1-2 inches of bowel remains outside the abdomen – this is known as a stoma.
So this brings me to my post, Freds on Tour!...
Who is Fred?
Fred is my second Ileostomy Stoma and is permanent and just another part of me! The first stoma saved my life, the second one gave me a new journey where anything and everything, is possible! (Well almost, obviously I can’t poop from my rectum now as I don’t have one 😉 but I don’t miss that).
Fred is just over 6 months old and its has been a crazy ride! I was operated on in Feb 2020 and come March 2020, the world joined me at home as Covid 19 pandemic swept the world and changed it forever.
So what can I do with a permanent Stoma?
Ride a bike 12 weeks post op:
Hike and be away from the loo for hours at a time, Climb mountains and explore the wild! (when my joints allow and with rest days)
Swim in the sea and wild rock pools (even freezing cold ones)
Kayak in Rivers, Seas and Circumnavigate Islands!
Dance / Exercise to music!
Wear a Bikini and a Wetsuit
Work as a primary school assistant full time (Almost - returning to full hours in September!)
Drink Alcohol and eat what ever I want (as long as I chew and don’t mind the smelly output somethings give and in moderation of course!)
What can’t I do:
Stop sharing how amazing my life is with a Stoma
Poop From my butt!
Literally the sky is the limit and the world is my oyster! I am engaged to be married and finally can enjoy my 2 children that have seen me soo ill over the years they feared I’d die.
Yes, I have health issues still that I am working to overcome, hernias, lumps and joint issues, but as far as my Stoma goes, my life is back on course! No permanent chronic bowel pain, accidents, horrendous treatments. No more major surgeries and uncertainty.
I hope this helps put at ease minds and helps dispel some of the myths of living with a stoma, it doesn’t smell, you can swim and it certainly doesn’t effect your ability to be loved and live a full, active life/
Please do follow me on social media under Stoma Warrior and #FredsOnTour2020
I’d love to see your pictures and hear what you enjoy doing that you never thought possible with a stoma.