When I first got sick with what they eventually diagnosed as ulcerative colitis, they didn’t abbreviate all illnesses as they do now (e.g. UC) and there were no medications for treatment. It was 1963, I was in college, and began suffering all the classic symptoms that we now recognize as indicative of this disease. The doctors that I visited, however, didn’t seem to know what to make of it. A couple times I was told that it was all in my head. “It’s psychosomatic,” they said. “But my belly really hurts,” I would protest. “This is just stress related,” they replied. As far as I could tell, the only stress I was experiencing was a result of my pain, not a cause. It was not only painful, it was frustrating under the circumstances. My reality was pain, yet a doctor, a person in authority, was feeding me fantasy. That illusion DID cause me stress. Unsurprisingly, failure to rely upon and live one’s life according to FACTS led to profound misinterpretation, a continuation of my pain, and a worsening of my condition. Ultimately, because the disease progressed beyond any prospect of curing it, it had to be excised. So I said goodbye to my colon, my rectum, and that little opening at the very end of my gastrointestinal system that has since become a favorite name for people who are jerks on steroids.
[ENDNOTE: Even today, the Mayo Clinic website states: “The exact cause of ulcerative colitis remains unknown.” They mention two possibilities: 1) immune system malfunction, or 2) heredity. “However,” they say, “most people with ulcerative colitis don’t have this family history.” Golly, I wonder if it was psychosomatic…]
My journey began in 1996 with a diagnosis of 'why did you change your diet'? I'd been a slender, healthy eating, active gal and experienced so much pain in my gut. Prior to that, I only had one kidney. They then said it was cervical cancer and removed all of those organs as well. The pain progressed along with continued low sodium and potassium. The runs never stopped, so they took my gall bladder. I swear they must have been selling these organs. Months later the runs suddenly stopped but a rash over my body formed overnight, followed by thick skin that shed off and the worst pain possible. Bedridden for 2+ years trying to endure. I had been diagnosed then with a rare form of chronic pityriasis rubra pilaris. I looked like a raw snake bleeding from everywhere. Do snakes bleed? Rounds of chemo, years of methotrexate in high doses, steroids, and Entocort, nothing helped. When the hospital staff knows your name, it's pathetic. My husband didn't even recognize me, as I screamed in pain. Slowly it went into remission and the gut pain returned. Oh crap! That's all it was. Over the years I moved, thinking it was the air, grasping at reasons. I was a good girl. I was sent to way too many hospitals all over the country like a guinea pig, poking and testing. I was finally diagnosed with a rare form of microscopic collagenous colitis. No meds or treatments worked on me over a 19-year period. No diets, nothing. I ate in my bathroom as nothing would stay in me long enough anyway. I continued to enjoy myself, just don't eat too much and traveled as often as I could, as long as I could get to the bathroom, I'd be okay. I finished my bucket list in fear I wouldn't survive. I'd travel and always land in a faraway hospital for more sodium, antibiotics for my 6 cases of C. diff, etc. My favorite saying began to be 'Suck it up... at least it's not cancer.'
By the time 2019 rolled around, the infection in my intestines totally engulfed it and began spreading into the small. After realizing that I was admitted weekly for IV crap, I went to a surgeon. The next day it was all removed. I had no idea what I was doing. My doctor said, 'I took it all and sewn up your empty cavities so the rest of what's left doesn't drop.' I said, 'OMG, I have no vagina either?' He laughed and said, 'God no, and it will still work just fine!!!' A month in the hospital with infection in my blood, I went home with a daily visiting nurse, IV meds every 3 hrs for 3 months. But I'm alive. OMG, I'm not an asshole anymore, I'm a bag lady! Yippie. I shocked the world having survived... and myself. Upon me graduating from no more nurse, my husband of 30 years was told he had cancer, nothing to be done and he was gone several months later.
My life continues and my journey thus far has made me thankful to be alive. No matter what your woes are, it could be worse. Suck it up and be thankful.
None of mine was due to genes of ancestry, just bad luck. I've moved on and started a new bucket list.
Hope to read your stories, a good way to spill your guts instead of in a bathroom! Geez, that venting felt good! Thanks for reading.
Stay safe and happy, it's the only way to survive. Ritz
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Geez, Ritz, what a history. One of my adult daughters, who has her own health issues, has a sign on her wall: EMBRACE THE SUCK. It's made her strong. Stay well, dear.
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