Inflammatory bowel disease is not something most people want to talk about. It’s embarrassing. Who really wants to talk about poop anyway? It’s not exactly something you want to bring up during a girls night out, or while watching a football game with your buddies. Personally, I believe inflammatory bowel disease needs to be talked about more. People need to be aware of what it is and individuals who have it need not be embarrassed. After all, it’s not something that can’t be helped and it’s not something that is going to go away. That is why I decided to focus my counseling career on helping others who suffer from these horrible diseases. I want to get the word out. Here is my story:
I was diagnosed with ulcerative colitis four years ago when I was 25 years old. Before I was diagnosed, I had never even heard of ulcerative colitis or inflammatory bowel disease. For two years I did very well. I only had a few flares, which were able to be controlled with medication and diet. But then in February 2009, my whole world began to change. I started getting another flare but didn’t really think much of it. I went to my gastroenterologist who upped my meds and I thought I was going to be fine. But the flare got worse and worse.
I tried virtually every kind of medication available and nothing worked. I was losing an enormous amount of weight incredibly fast, was in severe, debilitating pain, running to the bathroom up to 20 times per day and I was miserable. Finally in April I was admitted to the hospital. After two weeks, two blood clots, 30 pounds lost, and my doctor telling my family that my case of ulcerative colitis was the worse she had ever seen, I was transferred to UC Irvine Medical Center to undergo my first of what ended up being four surgeries.
On May 5, 2009, I had my entire colon removed. I was to have a temporary illeostomy for five months. As soon as I woke up from the anesthesia I felt immediate relief, despite the pain from surgery. That relief was short lived however. The day before I was to leave the hospital, a fat pad which allows food to pass into your stomach, closed due to the amount of weight I had lost. I had to have a feeding tube placed through my nose into my small intestine. Several days later, after almost six weeks in the hospital I was allowed to go home. I lived with the tube for three weeks and I recovered slowly but steadily.
My second surgery was on Aug. 13, 2009. During this surgery, my doctor from Okeechobee created what’s called a “j-pouch” out of my small intestine. The “j-pouch” essentially acts as a new colon, holding waste instead of having to keep the illeostomy permanently. From the beginning my body didn’t react well to this surgery. Two weeks later I started feeling ill, couldn’t eat and was losing weight once again. I had to go to the ER twice because things just weren’t right. During the second ER visit, my surgeon decided to perform my third, and what was supposed to be my last surgery early. He found scar tissue that had built up which was the cause of all of my problems.
The third surgery, or “takedown,” was performed on Oct. 8, 2009. The purpose of this surgery was to remove the illeostomy and attach the intestine to my “j-pouch.” I finally did great with this surgery! Four days later I was home and recovering quickly!
For the next 10 months, I did amazingly well, except for the short stint in the hospital because of anemia which required a blood transfusion. But then in August 2010, things changed once again. I started having some odd symptoms and knew something was wrong so back to the doctor I went. I was admitted to the hospital and sure enough, my “j-pouch” had twisted! So, on Sept. 21, 2010 I had surgery number four to attach my “j-pouch” to my tailbone to keep it from twisting again. Since this surgery, life has been great. Things have gotten back to normal and routine, which will never again be boring!
The last few years have definitely been a rollercoaster with a lot of ups and a lot of downs. I have learned a lot from my experiences. I don’t take anything for granted anymore, even the smallest things like eating a meal, walking my dog, or spending a day outside, because these were all things I couldn’t do when I was sick. I have learned that I am a strong person and can deal with anything life puts in front of me. And I have learned that having a support system of close family and friends is incredibly important.
My life after ulcerative colitis and the “j-pouch” surgeries will always be different. But different isn’t always a bad thing. I will always be reminded of what I went through by my unusual digestive system and by the scars on my abdomen. I will always have the fear that I will get sick again or need to have more surgeries. There will always be “what if’s.” My thought though, is that by counseling others in similar situations and by getting the word out about inflammatory bowel disease, it will all be worth it.