Hi, 20 years ago I was diagnosed with mega colon and had
most of my colon removed. The op went great with no complications. Then about 2
years ago I started suffering severe cramping and again no peristalsis to move
the food through. Tests revealed my small intestine was now like a mega colon. Consequently
I have had 4 surgeries this year to have my large bowel, most of rectum and
part of small intestine removed. I ended up with septicaemia which was only
found at the last minute and the surgeon had to re-operate to scrape the
infection from my abdomen. At that time he said an MRI showed my gall bladder
also needed removing but they would do that later. When later came he did not
recall anything wrong with my gall bladder so I have not had this readdressed. I
had a temp ileostomy which was reversed with complications. I must say, my
surgeon was incredibly negligent in my treatment and I ended up with holes in
my bowel which lead to a high output fistula and 3 holes on the outside of my
stomach. 4 months later and I am still healing from the fistulas. I now pass
faeces at least 20-30 times a day and have unbearable burning outside and
inside my anus. I had a bad bacterium which was successfully treated by fagil
but still have intense burning. It feels like being in labour but in my anal
area….every single day! It is worse in the late afternoon to evening for some
reason. I take Loperamide 16mg per day (4x2), 240mg codeine per day(4x60mg) various
zinc/protective creams, lignocaine creams, questran lite, but still suffer. I
use Aloe Vera on my toilet paper which helps very slightly (not sooo scratchy).
The pain is literally unbearable! I have also started suffering with sore
joints, particularly in my hands, wrists, elbows and knees. Doctors don’t know
why and say it’s unrelated. I have been told I only have 2 options left. 1) Be
fed through a tube for the rest of my life to avoid bowel motions or 2) Have a
permanent ileostomy. I nearly died several times through all 4 surgeries this
year and am terrified of more surgery. Also, when I had the temp ileostomy I
have severe burning on my stomach. Can you advise?