This is the story of my battle with ulcerative colitis.
Journal entry from early 2011:
“It is your first year of marriage. You imagine how happy you are going to be starting your life together. It sounds silly but I was looking forward to learning how to cook him dinner, dressing prettily and flirting with him, arranging fresh flowers on the dining table, entertaining, laughing, going out together… In general, I was imagining us as a young, happy, and healthy young couple.
I did not picture grabbing my stomach and bending over in an attempt to dull the stabbing pain as I ran/shuffled to the bathroom. I did not picture cancelling plans because of intense pain and because my bathroom trips are so frequent it would make the night awkward. Or worse, because the need to go to the loo comes so suddenly and with such urgency that I don’t think I’ll make it to the bathroom.
I find that I am disgusted with myself sometimes. This is gross. It’s like I have some preoccupation with the bathroom (I know I don’t, it’s just the sickness that makes that room so prevalent in my mind). I never even let John see me spit after I brush my teeth, and now he knows about my bathroom habits and problems. How mortifying. I feel like half a person. I consist of one part Kelsey, and one part ulcerative colitis. That is the recipe for making a broken me. I keep trying to rationalize and figure out why this happened: what I did, what I ate, what I didn’t eat, what meds I’ve taken… but there is no answer. The doctors don’t know what causes it and they don’t know what makes it go away. Getting my colon removed seems a bit drastic though, so I don’t want to do that.
I was diagnosed a few months after our wedding, but I started having “stomach issues” several months prior. I didn’t know anything was really wrong with me, I assumed I was just stressed out and it was making my body misbehave. I remember that on the day of our wedding I made sure I didn’t eat close to the ceremony time. I was concerned that I’d be standing at the altar and all of a sudden my stomach would tighten and I would have no choice but to run for the bathroom. The wedding went off without a hitch however. It was a great night and my stomach problems did not show up. I thought I was cured. It must have been stress!
Can you imagine? Pardon the cliché, but I had put all my eggs in one basket. I bargained on the whole ordeal being stress induced, so I hid my pain from everyone and didn’t see a doctor. What an idiot. It turned out that my reprieve was brief because less than 24 hours after the wedding the pain returned. In hindsight that pain was very mild considering the searing spasms of pain to come.
When we got home from the honeymoon I had to come clean. I told John, in as little detail as possible, that something was wrong and got an appointment with a general practitioner.”
A few months before my wedding in April of 2010 my ‘stomach problems’ began. A little pain, and some blood when I went to the bathroom. I chalked it up to stress and figured that it would go away after the wedding. A month after the wedding my symptoms had gotten worse. I was going to the bathroom more and more and the pain was increasing. I even lost control during that period of time. It embarrasses me even to write it, probably more than the fact it actually happened. But I want to be honest so that if other people have had the same things happen to them, they will know that they are not alone.
I didn’t tell anyone about my problems for several months, but finally in May 2010 I made an appointment with a general practitioner. I am going to call him Dr. Dud. I told him that there was blood and yellow mucus when I went to the bathroom, and a lot of pain and cramping. He asked me three times “what do you think is wrong?” All I could think was isn’t that what I’m here to find out? He said he had a test that would help figure out what was wrong. The test cost $350 because I only had major medical, and a couple days later the results came back “blood in stool, possibly anemic, referring to specialist”. This infuriated me because I had told the doctor that there was blood and that I am genetically anemic. Lesson to all: always ask your doctor what a test is for and what it will show. I didn’t learn that lesson then, it cost me a couple thousand dollars more to learn. After the results of the unnecessary test came in, Dr. Dud referred me to a specialist, Dr. Jones.
In the meantime my husband, John, and I were making sure that I was eating well. We had the healthy meals full of fruits and vegetables, lots of vitamins etc. We spent a lot of time and money devising meal plans and buying the freshest produce thinking it would help. It didn’t help at all but I appreciate how dedicated John was and is to curing me.
Journal entry from early2011 reflecting back on this period of time
“I had told my father that something was wrong but I still hadn’t told my mother. I hadn’t told her because it was embarrassing and she has a lot of friends and is very chatty. I figured the whole city would know if I told her, and since I was probably fine anyway there was no need to tell her. My Yiayia (grandmother) figured out that there was something wrong all by herself. I was at her house one day and she just looked up and said “is there something wrong with your intestines?” I told her I didn’t know what was wrong. Turns out she came closer to a diagnosis that the general practitioner did!
My mother eventually figured out there was a secret she wasn’t being told and began to be very irritable with me. Who could really blame her? However, she and Yiayia left for a two month stay in London in June before I saw the specialist. So when I told her that I had nothing to tell her, I wasn’t lying.
Our first month of marriage was off to a rocky start as far as I was concerned. But I was hopeful that Dr. Jones would cure me. Dr. Jones was a nice man. He wore a bow tie and seemed very clever.”
Dr. Jones , the specialist, listened closely to my list of symptoms and said that I probably had ulcerative colitis. He scheduled a flexible sigmoidoscopy (“Flex Sig”) for a few weeks later.
“When I left Dr. Jones’ office I felt a little disappointed because I didn’t have an answer, but I was happy that the procedure would tell me what was wrong. A week or two later on a Friday morning I was in the bathtub preparing for the procedure. The preparation consisted of no food that morning and a warm water enema (which was why I was in the tub). I’m not going to go into detail, but having never done an enema before I’ll admit that it wasn’t that bad. Don’t get me wrong, it wasn’t fun or anything, it is awkward, you feel silly, and if anyone walked in on you… well anyway. Then we went to the hospital where I did a second tap water enema. The nurse then came to my cot to administer sedatives, which I refused. I had read that it wasn’t necessary for a flex sig and since I was trying to save money and hated needles, I chose no sedation. They wheeled me into the exam room and up periscope!! It didn’t hurt at all. The movie sure was boring though (ha ha).”
The Flex Sig wasn’t a big ordeal. Although the hospital recommended anesthesia I opted not to have it. It didn’t hurt at all. Since I was awake I watched the monitor which played a real time video of the scope’s trip through my colon. The doctor performing the Flex Sig showed me the ulcers and a few polyps (which he removed). The ulcers were located in a very small area of my colon. The doctor said that I had one of the mildest cases of ulcerative colitis he’d seen. He said that he would have to look at the biopsies under the microscope to confirm that it was ulcerative colitis and not crohns.
“After the flex sig I was wheeled back out to my room where my worried John was waiting. ‘How did it go?’ John asked. I told him it went fine and that the doctor said it was probably a mild case of ulcerative colitis and I could start meds once they verify it on Monday. We didn’t have a clue what ulcerative colitis was. As we were leaving John pointed to the socks they’d given me and said ‘keep those! Now let’s get you something to eat and celebrate!’ We left feeling happy that the doctors knew what was wrong with me and I’d be given a prescription that would make it all go away. We naively believed my ordeal was almost over. “
That was the first of dozens of pairs of hospital socks we would take home over the next year and a half.