"The Disease that Almost Ruined My Marriage and My Life"
I saw this article and I was very touched.
I was 25 when I first noticed something strange was going on with my body. My now-husband Tony (at the time, my boyfriend of four years) and I had just moved in together, and after we were all settled I took a trip to visit my mom, who lived near our new place in California. Soon after I showed up, I went to the bathroom and saw that there was blood in my stool. And it wasn’t one of the things like you notice a bit of blood on the toilet paper. It was a lot, like a teaspoon’s worth or more. I was kind of freaked out, but I didn’t tell anybody. I guess I thought it would go away after a day or two. Plus I didn’t have any cramps or other symptoms so I just tried to push it out of my mind, even though my instincts were that something was very off.
But it didn’t stop and in fact, it started happening more and more frequently over the course of the weekend. I told my mom then made an appointment with my primary care doctor. He examined me, decided it was probably hemorrhoids, and gave me medication. A week or so later, I was still noticing blood in the toilet every time I went to the bathroom, and I went back to my doctor. At that point, he said he was going to have to do a barium enema, meaning he would stick a tube in my rectum and up into my colon, then fill my system with liquid and take an X-ray. The procedure allows the doctor to see in the X-ray if something is amiss, like a blockage or a growth. It was horrible and just so invasive. And worst of all, I knew the reason the doctor had ordered the procedure: to rule out colon cancer.
At this point, I finally told Tony what was going on. I think I had been keeping it from him because it was embarrassing-who wants to talk about their poop with a boyfriend-and because I didn’t want to worry him. But I couldn’t exactly keep the fact that I might have cancer from him, so I opened up. I could tell he was worried, but he was trying to hide it. Meanwhile, I was doing the same thing-masking my anxiety and putting on a brave face. But on the inside, I was terrified. That fear lasted two weeks, at which point the doctor’s office called to tell me they had ruled out colon cancer. I called my mom and she was so relieved that she cried. I was surprised that I wasn’t having the same reaction. Shouldn’t I also feel relieved that I didn’t have cancer?, I asked myself. But I knew I wouldn’t be until I had a diagnosis.
That diagnosis came a few weeks later after a visit to a gastroenterologist. As soon as I met with her and explained my symptoms, she wanted to do a colonoscopy. Two days later I had the procedure. I didn’t have to wait long for the results: it was ulcerative colitis, an auto-immune disease, meaning that your body is essentially attacking itself. Everything I put into my stomach, even medicine, my body would treat like an invader and try to fight off. And any sort of bacteria or viral infection could bring on the symptoms too. Doctors don’t really know what causes ulcerative colitis and it’s incurable. I was told it could lead to serious complications, such as extreme weight loss and even infertility brought on by the meds I would need to take or potential surgeries.But I was also told that I was lucky because I had a very mild case. The way my doctor described the disease made it seem like it would be a hassle more than anything else.
On the car ride home from the doctor’s office, I vented to my boyfriend about the medication and having to watch my diet more carefully.
Over the next few months, the meds began to erase all of my symptoms and my doctor declared me “in remission”. Then my boyfriend proposed and I started to think that maybe I could put this whole scare behind me. Sure, I would always have ulcerative colitis, but I was moving on with my life and seemed to be doing just fine managing the disease. We got married in in 2008 when I was 26 and I just felt so happy and lucky.
Six months after my diagnosis, though, I started to lose weight. A lot of weight. I went from 108 pounds to right around 80 pounds. Every time I ate, I had horrible pain. (I learned later from the doctors that the pain is actually caused from the food moving through your intestines and irritating your colon.) I was going to the bathroom 20 times a day and there were points when I could barely move. Looking back, I know that I was depressed. I had to quit my job and for the first time since I’d been diagnosed, I started to seriously worry that Tony might leave me. He never showed any signs of wanting to get out, but I was paranoid and convinced that no man would want to be around me. I wondered how he could find me attractive, especially considering I was constantly in the bathroom and it seemed our entire lives now revolved around me and my bowel movements. I knew it wasn’t sexy and I felt awful that I was burdening him with it. I started keeping certain details from him and downplaying how much I was suffering. I would go to the bathroom and sit on the toilet in horrible pain, wanting to moan and cry. But instead I tried not to make a sound.
After several trips to my doctor and after trying pretty much every medication there was, my doctor admitted me to the hospital right away. That was the first time the word surgery became a reality. More specifically, there was a possibility that I’d have to have parts of my gastrointestinal tract removed. Even though I had been in remission and doing so well, my situation had deteriorated so quickly and so extremely, that surgery was a necessity. I was terrified at the idea, but at that point I knew it had to happen. And Tony and my family knew too. So a few weeks later I was transferred to UC-Irvine Medical Center, which specializes in these kinds of surgeries. I was told that it would be a three-surgery process: They would remove my colon, which is essentially the only cure for ulcerative colitis since it physically removes the organ that’s prone to the ulcers. It meant wearing a bag outside my body for three months. ) After that, during the second surgery, the doctors would create a pouch that acts as a faux colon and attaches the small intestine to the rectum. I would still have the bag for another three months. And the last surgery was to remove the bag and attach the small intestine to the rectum. I would live the rest of my life without a colon.
The first surgery went well, but a few days later I started feeling really nauseated. It turns out that part of my system had unexpectedly closed off and the only way I could get nutrients was through a tube down my nose that fed into my intestine. I was all skin and bones, I could barely move, I couldn’t enjoy food, and I was attached to a poop bag. Plus, the doctors told me that after the surgeries, it could be hard for me to get pregnant. I was very self-conscious and I continued to think that Tony would want to leave me-we were supposed to be in our honeymoon phase and instead, we were going through this hell., But luckily he was nothing but supportive-he would sleep overnight in the hospital and rarely left my side.
The second surgery, three months later, wasn’t without complications either. A few days after they released me, I couldn’t keep anything down. That was the lowest I’ve ever felt. I remember thinking that maybe it would be better if I were dead. But I didn’t tell anyone what I was thinking because I was still concerned with worrying and burdening them. Things got worse and worse-not just psychologically, but physically too. I lost even more weight and ended up back in the hospital. The doctors found a blockage in my tract, which had been making it impossible for me to create “output”. My surgeon wanted to open me up to see if the blockage was being caused by scar tissue so he moved up the third surgery, and four weeks sooner than we had originally planned, I was back in the hospital. He did, in fact, find scar tissue, which he removed. It’s not uncommon for this too happen to people who undergo this sort of surgery, but a lot of scar tissue can mean that it will be harder for a woman to get pregnant later since it can get in the way of the reproductive system.
When I woke up from the last surgery and wasn’t attached to the bag, it was the best feeling. Everyone around me was elated that I would soon be done with the whole ordeal. But despite how great I felt waking up that day and how happy my husband and family were, for some reason I didn’t want to get my hopes up. I had felt depressed for so long that it was hard for me to think positively.
Well, turns out I was right not to. Last September, I started noticing that I was really bloated. I wasn’t going to the bathroom and I immediately knew something was off. When I saw my doctor about it, he reassured me that it could be a temporary blockage-a common occurrence-and told me it would probably pass on its own. He was right; it did, but a few weeks later it happened again. I was admitted to the hospital-for what seemed like the umpteenth time-and there they did a procedure called a sigmoidoscopy (to see what was going on) and saw that the pouch attaching my small intestine to my rectum had twisted. They were able to untwist it without surgery, but it happened again a few weeks later. My surgeon didn’t want to risk this being an ongoing problem so he scheduled another surgery, my fourth. He attached mesh to the pouch and sewed that mesh to my backbone. This would keep it from getting twisted again.
In a few weeks, it will have been a year since my last surgery, my last complication, and the last time that ulcerative colitis took over my life. I’m 29 now and for the first time since I was 25, I’m feeling healthy. Knowing that I’ve gone almost a full 12 months since I’ve had any complications or issues is slowly allowing me to be happy and optimistic. And the depression that was so oppressive during the surgeries is finally dissipating.
Things with Tony are really good and we’re finally getting our lives back to normal. We’re trying to enjoy the honeymoon period that we never had. And we’re going to try to get pregnant soon. I know there’s a chance I won’t be able to, but I also know I want to try.
I’m back to work as a therapist and I’ve decided to focus my counseling on others with inflammatory bowel diseases. I know now that people who suffer from this can experience severe depression and anxiety. I want to provide help to those patients who felt like I did-like dying would be easier than continuing on. No one talks about ulcerative colitis. After all, it’s not exactly dinner table conversation. But I hope that by being open about my story, others will know they’re not alone and that it’s possible to get through it and live a normal, happy life.
I was 25 when I first noticed something strange was going on with my body. My now-husband Tony (at the time, my boyfriend of four years) and I had just moved in together, and after we were all settled I took a trip to visit my mom, who lived near our new place in California. Soon after I showed up, I went to the bathroom and saw that there was blood in my stool. And it wasn’t one of the things like you notice a bit of blood on the toilet paper. It was a lot, like a teaspoon’s worth or more. I was kind of freaked out, but I didn’t tell anybody. I guess I thought it would go away after a day or two. Plus I didn’t have any cramps or other symptoms so I just tried to push it out of my mind, even though my instincts were that something was very off.
But it didn’t stop and in fact, it started happening more and more frequently over the course of the weekend. I told my mom then made an appointment with my primary care doctor. He examined me, decided it was probably hemorrhoids, and gave me medication. A week or so later, I was still noticing blood in the toilet every time I went to the bathroom, and I went back to my doctor. At that point, he said he was going to have to do a barium enema, meaning he would stick a tube in my rectum and up into my colon, then fill my system with liquid and take an X-ray. The procedure allows the doctor to see in the X-ray if something is amiss, like a blockage or a growth. It was horrible and just so invasive. And worst of all, I knew the reason the doctor had ordered the procedure: to rule out colon cancer.
At this point, I finally told Tony what was going on. I think I had been keeping it from him because it was embarrassing-who wants to talk about their poop with a boyfriend-and because I didn’t want to worry him. But I couldn’t exactly keep the fact that I might have cancer from him, so I opened up. I could tell he was worried, but he was trying to hide it. Meanwhile, I was doing the same thing-masking my anxiety and putting on a brave face. But on the inside, I was terrified. That fear lasted two weeks, at which point the doctor’s office called to tell me they had ruled out colon cancer. I called my mom and she was so relieved that she cried. I was surprised that I wasn’t having the same reaction. Shouldn’t I also feel relieved that I didn’t have cancer?, I asked myself. But I knew I wouldn’t be until I had a diagnosis.
That diagnosis came a few weeks later after a visit to a gastroenterologist. As soon as I met with her and explained my symptoms, she wanted to do a colonoscopy. Two days later I had the procedure. I didn’t have to wait long for the results: it was ulcerative colitis, an auto-immune disease, meaning that your body is essentially attacking itself. Everything I put into my stomach, even medicine, my body would treat like an invader and try to fight off. And any sort of bacteria or viral infection could bring on the symptoms too. Doctors don’t really know what causes ulcerative colitis and it’s incurable. I was told it could lead to serious complications, such as extreme weight loss and even infertility brought on by the meds I would need to take or potential surgeries.But I was also told that I was lucky because I had a very mild case. The way my doctor described the disease made it seem like it would be a hassle more than anything else.
On the car ride home from the doctor’s office, I vented to my boyfriend about the medication and having to watch my diet more carefully.
Over the next few months, the meds began to erase all of my symptoms and my doctor declared me “in remission”. Then my boyfriend proposed and I started to think that maybe I could put this whole scare behind me. Sure, I would always have ulcerative colitis, but I was moving on with my life and seemed to be doing just fine managing the disease. We got married in in 2008 when I was 26 and I just felt so happy and lucky.
Six months after my diagnosis, though, I started to lose weight. A lot of weight. I went from 108 pounds to right around 80 pounds. Every time I ate, I had horrible pain. (I learned later from the doctors that the pain is actually caused from the food moving through your intestines and irritating your colon.) I was going to the bathroom 20 times a day and there were points when I could barely move. Looking back, I know that I was depressed. I had to quit my job and for the first time since I’d been diagnosed, I started to seriously worry that Tony might leave me. He never showed any signs of wanting to get out, but I was paranoid and convinced that no man would want to be around me. I wondered how he could find me attractive, especially considering I was constantly in the bathroom and it seemed our entire lives now revolved around me and my bowel movements. I knew it wasn’t sexy and I felt awful that I was burdening him with it. I started keeping certain details from him and downplaying how much I was suffering. I would go to the bathroom and sit on the toilet in horrible pain, wanting to moan and cry. But instead I tried not to make a sound.
After several trips to my doctor and after trying pretty much every medication there was, my doctor admitted me to the hospital right away. That was the first time the word surgery became a reality. More specifically, there was a possibility that I’d have to have parts of my gastrointestinal tract removed. Even though I had been in remission and doing so well, my situation had deteriorated so quickly and so extremely, that surgery was a necessity. I was terrified at the idea, but at that point I knew it had to happen. And Tony and my family knew too. So a few weeks later I was transferred to UC-Irvine Medical Center, which specializes in these kinds of surgeries. I was told that it would be a three-surgery process: They would remove my colon, which is essentially the only cure for ulcerative colitis since it physically removes the organ that’s prone to the ulcers. It meant wearing a bag outside my body for three months. ) After that, during the second surgery, the doctors would create a pouch that acts as a faux colon and attaches the small intestine to the rectum. I would still have the bag for another three months. And the last surgery was to remove the bag and attach the small intestine to the rectum. I would live the rest of my life without a colon.
The first surgery went well, but a few days later I started feeling really nauseated. It turns out that part of my system had unexpectedly closed off and the only way I could get nutrients was through a tube down my nose that fed into my intestine. I was all skin and bones, I could barely move, I couldn’t enjoy food, and I was attached to a poop bag. Plus, the doctors told me that after the surgeries, it could be hard for me to get pregnant. I was very self-conscious and I continued to think that Tony would want to leave me-we were supposed to be in our honeymoon phase and instead, we were going through this hell., But luckily he was nothing but supportive-he would sleep overnight in the hospital and rarely left my side.
The second surgery, three months later, wasn’t without complications either. A few days after they released me, I couldn’t keep anything down. That was the lowest I’ve ever felt. I remember thinking that maybe it would be better if I were dead. But I didn’t tell anyone what I was thinking because I was still concerned with worrying and burdening them. Things got worse and worse-not just psychologically, but physically too. I lost even more weight and ended up back in the hospital. The doctors found a blockage in my tract, which had been making it impossible for me to create “output”. My surgeon wanted to open me up to see if the blockage was being caused by scar tissue so he moved up the third surgery, and four weeks sooner than we had originally planned, I was back in the hospital. He did, in fact, find scar tissue, which he removed. It’s not uncommon for this too happen to people who undergo this sort of surgery, but a lot of scar tissue can mean that it will be harder for a woman to get pregnant later since it can get in the way of the reproductive system.
When I woke up from the last surgery and wasn’t attached to the bag, it was the best feeling. Everyone around me was elated that I would soon be done with the whole ordeal. But despite how great I felt waking up that day and how happy my husband and family were, for some reason I didn’t want to get my hopes up. I had felt depressed for so long that it was hard for me to think positively.
Well, turns out I was right not to. Last September, I started noticing that I was really bloated. I wasn’t going to the bathroom and I immediately knew something was off. When I saw my doctor about it, he reassured me that it could be a temporary blockage-a common occurrence-and told me it would probably pass on its own. He was right; it did, but a few weeks later it happened again. I was admitted to the hospital-for what seemed like the umpteenth time-and there they did a procedure called a sigmoidoscopy (to see what was going on) and saw that the pouch attaching my small intestine to my rectum had twisted. They were able to untwist it without surgery, but it happened again a few weeks later. My surgeon didn’t want to risk this being an ongoing problem so he scheduled another surgery, my fourth. He attached mesh to the pouch and sewed that mesh to my backbone. This would keep it from getting twisted again.
In a few weeks, it will have been a year since my last surgery, my last complication, and the last time that ulcerative colitis took over my life. I’m 29 now and for the first time since I was 25, I’m feeling healthy. Knowing that I’ve gone almost a full 12 months since I’ve had any complications or issues is slowly allowing me to be happy and optimistic. And the depression that was so oppressive during the surgeries is finally dissipating.
Things with Tony are really good and we’re finally getting our lives back to normal. We’re trying to enjoy the honeymoon period that we never had. And we’re going to try to get pregnant soon. I know there’s a chance I won’t be able to, but I also know I want to try.
I’m back to work as a therapist and I’ve decided to focus my counseling on others with inflammatory bowel diseases. I know now that people who suffer from this can experience severe depression and anxiety. I want to provide help to those patients who felt like I did-like dying would be easier than continuing on. No one talks about ulcerative colitis. After all, it’s not exactly dinner table conversation. But I hope that by being open about my story, others will know they’re not alone and that it’s possible to get through it and live a normal, happy life.