Long overdue update
To shorten my story, I have UC. I have not updated in 7 months. Last July of 2019 I had a hiatal hernia repair with gb removal. I had been getting blood transfusions a lot because of the hernia. Thinking afterward how grateful to finally get that operation and my UC had been mild or in remission. But in February 2020, I fell Valentine's weekend. Breaking four right metatarsals and left lower fibula. My blood hgb was 7.6 and fell even further to 6.7. I got three units of prbcs. Went to rehab, got on my feet, then in May around the 20th, I woke up screaming in pain.
One thing after another
My fiance' called the ambulance. In the ER I was sedated and on a ventilator. I had blood clots in my lower left leg and my abdomen. When I was brought out of my coma, they started a lot of MRI's and x-rays. I took the prep for a colposcopy and upper EGD. My GI doctor found a partially blocked large ascending colon with a huge infection from my colitis. He diagnosed Ischemic Colitis.
So, apparently this kicked off a lot of things including a kidney infection. I had sepsis and after colonoscopy, massive diarrhea. They poured in iv potassium and magnesium with a heparin drip going through my central line. Then they switched to my port for it was rimed to change the iv in my jugular or as it was my central line.
Long ago my veins were all used up due to UC and it had caused colon cancer in Nov. of 2000. Now I go back for a colonoscopy in a month to see if I am clear and how bad the partial obstruction is in my large ascending colon and the hernia.
I was diagnosed in my mid thirties
I am now 64 and I fight this disease hard. Unfortunately my family have refused to accept it or educate themselves. Blaming my pain management doctor, blaming me and tried sending me to assisted/nursing home after my two weeks in rehab. My fiance/ my everything, stepped in and said "no, she comes back home now".
Continuing to fight
See, I fought this disease, I got Swine H1Ni ten years ago, I got Colon cancer twenty years ago and have fought UC all along the way. Doing the physical therapy when necessary. Then this recent DVT in my leg and belly, my UC infection. Do not let yourself be disposed of by relatives: sons, daughter, whoever refuses to hear about this disease that puck one thing out and say ok you don't need this or that. Because you don't look sick enough or your pain is hard to control for the hospitals etc. Keep going, hang in and hang on. Plus these updated guidelines were so needed as the article says there were no updates for the GI physicians or patients since 2010. The doctor in the article that Dr. Nandi wrote made it easy to understand these guidelines and updated treatment and the tests that was excellent for all of us with UC. Thank you- Patricia W.
What is your comfort level disclosing your IBD to your employer?