25 years ago I had a stoma after a subtotal colectomy. I had a stoma 18 months or so before insisting on an ileo rectal anastomosis because pooing into a bag age 12/13 whilst at boarding school with bitchy girls was horrendous.
My journey to my first big op was interesting. Symptoms of diarrhea and weight loss started age 7. I distinctly remember going for a colonoscopy and the nurse telling me “you’re very young to be here”.
And so began 5/6 years of medication, hospital appointments with a Gastroenterologist, phone calls with the gastro nurse and several blood transfusions to replace the blood I lost through diarrhea.
None of it worked and in the summer of 2000 the consultant recommended that the best next step was a colectomy which after years of feeling like crap I was vaguely all for but adamant the stoma would be temporary.
I was sent for a second opinion at GOSH and I have to say my experience and memories are not great.
They placed a nasal gastric tube for several days and no one believed when I said I felt sick. I wretched and the tube that started down my nose looped out of my mouth before continuing down my gullet. They just fed it back down and didn’t even give me anti nausea meds.
They did a colonoscopy and took biopsies which then made me bleed non stop and didn’t heal.
I was too tall for the bed they gave me.
I was desperate to be out of there so lied to them that I was fine so I could go home (that was not a fun journey).
A short while later I was admitted to Oxford John Radcliffe hospital and had an emergency collectomy.
Due to being so ill when I was admitted it took 3 weeks to be well enough for discharge with my new stoma bag and head home.
18 months later I headed back to hospital for an ileorectal anastomosis. Due to being well when I went in for surgery I was sitting up in a chair 24 hours after surgery.
A subtotal colectomy is surgery to remove most of the large bowel (colon) while leaving the rectum intact, typically for inflammatory bowel diseases (Crohn’s, ulcerative colitis).
Ileorectal anastomosis (IRA) is a major surgery where surgeons remove the colon (colectomy) and then connect the end of the small intestine (ileum) directly to the rectum,
How Rare? 