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.
Generally, a sensitive digestive system as it still can not cope with stress and illness without turning to water.
Needing to empty a stoma bag anything from 6-15+ times a day, every day and throughout the night.
Managing stoma pouch seal leakages, inflated pouch explosions and relentless unpredictability.
Itchy, raw, sore and sensitive skin where the stoma pouch adheres to the skin around the stoma.
Noisy, embarrassing, unpredictable gas from the stoma that comes without warning and can be very loud.
Granulomas / ulcers on the stoma.
Tissue overgrowth on the stoma and sadly much more…
I know this all sounds a little scary and very daunting, especially if you are reading this whilst facing surgery, however, it beats active disease in the colon, rectum and anus hands down!
To me all this is just now part of my life, I am forever grateful for my surgery, having the Stoma and the opportunity it affords me to live my life to the full!
I can now kayak, swim, cycle, hike and live a fun loving and exciting life with my wonderful family! I work full time and spend much of my spare time at the gym, swimming and having wonderful holidays in my caravan on staycations.
Life is great but the point of this post is to highlight the battle suffered by Indeterminate Colitis patients as well as Crohn’s and Colitis warriors.
We need specialists to wake up and treat the whole disease not just the visible bit! To not sign of patients straight after surgery but to help them navigate the new norm and manage the symptoms so they can achieve a fulfilling and comfortable life!
I hope by reading this you understand a little more about what battle we face. If you are fighting alongside me, that you can take comfort that you are not alone.
Please share any issues you face that you feel others need to be aware of, its not moaning or being negative but educating and helps raise awareness for the constant fight for recognition of a hidden disease.
Take care thank you for reading.