Living with Ulcerative Colitis, an auto immune disorder

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We live our life not Knowing how much disabled and ill people suffer! read this story off T***.

Ulcerative Colitis, an autoimmune disorder, I was diagnosed 15 years ago and symptoms managed through diet/lifestyle and denial until 2010 when I had a dreadful flare following a colonoscopy. (I still wonder if they had scratched the gut).
Steroids never worked for me, none of the treatment offered did. Had subtotal colectomy. During the operation the surgeon unknowingly scratched the upper intestine and closed me up. This he admitted to and apologised for telling me he would not have carried out the procedure as laparoscopy had he realised how much fat there was inside – obstructing his view. Apparently, I am fatter on the inside!
It took me four days to persuade them to even consider that I had an infection (I have naturally low blood pressure and temperature tends not to rise when I\’m ill). Further, emergency surgery was needed to literally scoop infected matter from my pelvic basin.

Since then I\’ve had the colon removed and internal IA pouch formation, all more or less ok for the last three years.

Hospital last week for pouchitis and/or ileitis (same as UC but in a different place as far as I can make out) and they\’ve already started to miscommunicate with me, the nurses and each other.
I would be tempted to think it was me except that my nurse couldn\’t quite believe how they screwed up.

Back on steroids and antibiotics, with little confidence in either. Eating a Paleo, nightshade- and dairy-free diet with added turmeric, coconut oil and raw manuka honey in an effort to retain a semblance of control. Except I am barely eating now for fear of pain and other symptoms.

Now, I have extreme discomfort in right abdomen on eating or drinking the slightest thing and am thinking I\’ll just stay here in bed rather than let those exhausted doctors anywhere near me!

I am scared now, welling up at the slightest trigger. Not sick enough to let go and sleep. Too sick to leave my bed. I tell myself there are living beings all over the planet experiencing much much worse and that I must be grateful. But I can\’t find the gratitude. I m frightened and angry and sinking.

People tell me this disease can kill. That\’s fine.

But suffering? That isn\’t.


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