The first week of December marks Crohn’s and Colitis Awareness Week and we are highlighting those who are living with these diseases and talking about the symptoms of Crohn’s and Ulcerative Colitis.
Mark Gilbert, 54 from Lancing, West Sussex was first diagnosed with proctitis back in March 2015 after seeing small amounts of blood in his stool. After years of escalating bowel issues, Mark was eventually diagnosed with Crohn’s Disease in October 2022 but the effects of a late diagnosis have had a serious impact on Mark’s life.
My story starts back in March 2015 when after a couple of months of seeing small amounts of blood in my stools I had a colonoscopy, which found I had proctitis. This rapidly developed into ulcerative colitis by June that year, after I lost 4 stone in 7 days and endured a 6 week stay at Southmead Hospital in Bristol.
The decision was made to remove a large part of my bowel
I was about to be discharged when a consultant said he wasn’t happy and wanted me to have another colonoscopy. This found severe ulceration in the large bowel and the decision was made to remove a large part of my bowel leaving me with a colostomy bag.
I descended into a downward spiral
I responded well to this and I was able to have a successful reversal in April 2016. During my days with the colostomy bag my wife at the time decided to seek a divorce on the grounds that ‘he’s not the man I married’ and this brought on depression and very vivid suicidal thoughts. Over the next 3 years I descended into a downward spiral of drugs and gambling culminating in me spending 13 months in prison.
Back home to a wonderful life
Upon release I moved back home to my place of birth to live a wonderful life with my current partner. I was still getting stomach troubles though that led to several stays in hospital. On the second visit in October 2022 it was decided I had Crohn’s Disease – and that it was probably Crohn’s from the very first diagnosis.
I was seriously ill
In December 2022, I was rushed to hospital with a perforated bowel (a hole in my pouch that was formed when I had the reversal back in 2016). I was seriously ill and caught the flu whilst in hospital, this caused my new stoma to prolapse so badly that I had more bowel removed leaving me with small bowel syndrome and intestinal failure.
My life has changed beyond recognition
I now live with a very large ileostomy (stoma formed from the small bowel) that prolapses daily and I have to connect myself up to a drip every night where I infuse 2 litres of parental nutrition and glucose and magnesium supplements.
My life has changed beyond recognition due to Crohn’s, however I remain positive and upbeat and my focus now is on helping others with this awful illness.
What keeps me going is my partner
What keeps me going is the unwavering support of my partner and the thought that there is always someone worse off. I hope my story inspires others to not let Crohn’s or ulcerative colitis beat them. Crohn’s Disease hasn’t beaten me and I won’t let it.
You can find out more about Crohn’s Disease, Ulcerative Colitis and read other inspiring stories of people living with the disease on the Bladder and Bowel website.