My LONG journey with UC and Crohn's
Last updated: December 2022
My story started 10 days after returning from Singapore to visit my THEN husband, who was stationed there with the military. I came home and had the worst stomach pain I have ever experienced along with bloody diarrhea. I knew something was seriously wrong. Went in for a colonoscopy and even though my gastro put me completely out, she said I screamed so loud during it that it scared the patients in the waiting room. I didn't remember. They determined I have ulcerative colitis. This was in 1991, and I was 25 years at the time.
Ulcerative colitis came out of nowhere
Before this I never had any health issues other than maybe a cold or flu once in awhile. After trying different medications that would work and then stop working, my gastro said I don't know what to do with you anymore. Understand in 1991, nobody knew what UC was, and certainly didn't talk about it. So, she referred me to the best doctor in the world at Cedars Sinai in Los Angeles. I ended up in the hospital for 6 weeks... twice. My parents would drive me the hour and a half drive before the hospitalization almost every day for weeks. At that time, they had to stop at least every 15-20 minutes because I had to go NOW! I must have gone to the toilet at least 20 times a day.
The second time I ended up in the hospital I was pregnant with my first and only child. I was NPO, and couldn't even have ice chips. I was given prednisone through an IV for 10 months. It ruined my hips and I had to end up having a total hip replacement at 26. I had every side effect that steroids can give you. I went from a cute, little 125 lb girl and gained 50 lbs in a week. I had the moon face, was angry and I have bad veins. They would take blood every day and eventually had to put a hickman catheter in my chest. I had tubes down my nose to drain the bile.. It was awful.
Surgery saved my life
I had only been married for 3 years and my now ex couldn't handle it. Eventually he divorced me because he said he didn't want a sick wife.. I was a high risk pregnancy due to the fact that they were giving me Demerol and Dilauded and all kinds of meds. I was scared my child would come out all screwed up. Going back though, I ended up having surgery to remove most of my colon. Apparently it was gangrene. I was too sick to have it done right away, so they had to do it in 3 different surgeries. It literally saved my life. I felt so much better but now I had a colostomy bag for at least a year while it healed. That was horrible. My skin is so sensitive I would get the most painful rashes and then the adhesive would start to come off.
I think I have had at least 20 colonoscopies in my life and the worst one was when I was pregnant. I was inflamed so bad, that even water would irritate my colon. They did a colonoscopy without knocking me out. It was the worst pain I ever felt. It was even more painful than childbirth.. No lie. My son was born and was perfect, thank God. I had many trips to the ER before the surgery. At one point I was out and I heard the doctor ask my husband if he wanted to save me or the baby. He said me, I woke up and said the baby. So, I almost lost my life and my son's.. In fact this happened several times. I had to drink Ensure every day for months and had a catheter in my chest for medication. It was literally the worst time in my life. I couldn't work, but fat\st forward, after 5 years of dealing with this before I had surgeries, I was now divorced with a 2 year old and still working full time, when I could.
My ulcerative colitis diagnosis changed
Thankfully my UC went into remission until 2013. I guess God made me healthy so I could raise my son alone. In 2013 I had severe stomach pain and ended up in the hospital for 2 weeks. This gastro now told me I have Crohn's. I said how could I have UC and then now Crohn's. He said maybe I was misdiagnosed before. I don't have the bleeding now and the urgency, but I am always fatigued, and no amount of sleep helps. I leak, so I have to wear pads. I have nausea all the time, and there have been days lately that I am completely sidelined in bed, eating nothing but saltine crackers, sprite and maybe a banana. This will last for 2-3 days, and I feel so sick I want to vomit.
My many symptoms and side effects of Crohn's
I have been hospitalized many times usually due to dehydration, Crohn's flares or blockages. I barely eat any more because every time I do, I get nauseous. I have had many scopes, tests, meds, etc.. and now my current gastro has also said, I don't know what to do with you.. I miss so much work and I was told by my boss I am unreliable. I end up using all my leave, and the I don't get paid. So, then I have to worry and stress about how to pay my rent, my bills, etc. It's almost a struggle with Crohn's. It has affected many other parts of my body, like my teeth. I had actually had teeth rotted so bad, the doctor just took them out with his fingers. All in all, I am now missing about 10 teeth and have to wear partials. I have had more root canals than I can count, and more money spent. So much money for doctors appointments, hospitalizations, meds, etc. The fire department knows me by heart now. I have problems with MRSA, eye problems, joint problems, arthritis, sleep apnea and diabetes. So, I have several autoimmune issues going on. I have medication for depression and anxiety and I often feel so alone and wonder why I have to go through this again after being in remission. That's the way Crohn's is though. It's a horrible, debilitating disease that affects every aspect of my life. I'm sorry this is so long, I got carried away.
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