What’s left to manage after the main organ associated with my bowel disease has been cut away… The unexpected that’s left behind!
I am diagnosed with Indeterminate Colitis which basically means my removed Colon was tested extensively and proven to have the genetics of Crohn’s and Colitis, my disease behaved predominately as Colitis and Proctitis for the last 10 years.
I pray it stays that way now my large bowel, rectum and anus have been totally removed and I have been given a permanent Ileostomy Stoma, I pray it doesn't emerge as Crohns in my small bowel but there is no way to know if it will or not... Its the luck of the draw!
I often hear people say that now they have no large bowel, the disease has gone surely, and they are no longer IBD sufferers, so how does this work for people in the subgroup classed as ‘indeterminate’, are we free of symptoms and disease or does it just change?
Sadly, I am one of thousands living with proof that we are not free of disease symptoms, I may have no known active bowel symptoms such a inflammation and ulcers etc, but I have many associated unseen effects. I want to raise awareness of this as it seems many of us are signed off by the bowel teams and again passed from pillar to post to help manage random ailments.
Yes we may not poop ourselves involuntarily, we may not be doubled up in pain with inflammation of the bowel, passing blood and spend our time attached to the loo through fear of exploding…
But what is left behind?
Joint pain / Inflamed joints and often fibromyalgia symptoms.
Neurological issues / Brain Fog from many years of biological drug treatments.
Low bone density from years of steroid medications
Fragile / Brittle teeth resulting from steroid use and malabsorption of nutrients past and currently with a Stoma.
Bile Salt Malabsorption.
Eyesight issues from treatments received over the years.
Hearing damage again from years of obnoxious drugs.
Depression that comes from living with a debilitating disease and the impact it has on relationships, confidence and careers.
Irritable bowel as it can not always cope with foods a ‘normal healthy’ system can.
Bleeding stoma due to rubbing/cutting on the stoma pouch opening as the stoma moves constantly in and out a little, often swelling and hurting where it is attached to the surrounding skin that is extremely sensitive.
Adhesions internally from surgical scars.