September 3, 2012
I am days away from my 26th birthday and I can’t help but take a step back, and really think about what has transpired over my years of being on this planet. I have a lot of good memories to look back on, and unfortunately too many bad ones. I want to talk about some of the bad memories I have for two reasons. The first being that I need to get it out and let the world know what I have been dealing with since I was 13 years old, and the second and the reason I am posting this publically instead of writing it in my journal, is to hopefully let someone know that they are not alone. I want to start off by saying that my struggle is about something I was diagnosed with back in July of 2000. The disease is ulcerative colitis.
I was a very competitive swimmer when I was younger. I would go to practice from 5-7am before school, then right after school have dry land, followed by another two hours of grueling swim practice. But, however hard it was, I didn’t care because I loved it so much. I loved the feeling you get right after a good workout, the excitement that comes with performing well in a meet after putting so many hours in training, and most importantly, I loved the team comradery. Even though swimming is mostly an individual sport, I loved being on a swim team and being a part of something. When I look back on those days, they were the happiest of my life.
A few weeks before I was supposed to go to a big swim meet in Florida with my team, I started having stomach issues- diarrhea, blood in my stool, urgency, loss of appetite, and unusual exhaustion. I had no idea what was going on but it was enough to warrant my mom to make a call to the closest gastroenterologist and schedule me for an appointment. The purpose was to get checked out, get on some antibiotics and then be on my way to Florida to join my team. The day I found out that my stomach issues weren’t the symptom of a minor stomach bug that just needed 10 days of antibiotics to heal, but in fact, was something far more devastating- ulcerative colitis. Ulcerative colitis is a chronic illness that I usually describe to people as an auto-immune disease where your body attacks your colon, also known as your large intestine, and causes it to be inflamed and have ulcers all over it. I vividly remember that July day, July 6th to be exact… where I woke up from having a colonoscopy and saw my parents white as a sheet staring blankly, and my doctor rambling off the many, many things I could no longer do because of this newly found diagnosis. After the beginning of her lecture to me, I think I blocked the rest out and focused solely on my parents. Their faces were so white, they looked so lost, and it seemed like everything was going to be different. I had no idea what this diagnosis meant and had never even heard of the disease prior to that day, but a part of me knew that my life has been changed forever.
Since my doctor (I’ll call her Dr. K), said my case was so severe, she immediately started me on 40mg of prednisone, put me on a bland diet and told me I could no longer swim. The summer was my favorite time of the year for swimming. Not because I could swim outside, but because I loved my summer swim team so much. I had real friends on that team, and I felt so much love when I was there. It was the time of the year I looked forward to always. My winter team was much more training oriented so the whole team dynamic was different. However, since I was so sick and had no idea what to do with myself, and Dr. K was just someone my mom found because she thought I would see this woman one time and then be done with her, my parents decided that I needed to see a doctor who was the best in New York, since it became clear to us that I would need to have a relationship with this new doctor.
I remember driving in the car on the way to Mt. Sinai hospital in New York City, and my dad said to me “I don’t want you to think that this new doctor is going to tell you that you can start swimming again, eat whatever you want, and do whatever you want. I don’t want you to get your hopes up baby.” To my surprise, that is basically exactly what this new doctor did (I’ll call her Dr. P). She was one of the best pediatric gastroenterologists around and she immediately told me that my disease was not caused by food, that I could and should eat whatever I wanted, and also honed in on the fact that I did not get ulcerative colitis because I am a person who cannot handle stress, and that IBS is in no way the same thing as IBD (ulcerative colitis and crohns disease). At that time, I just listened, having no real understanding of what she was saying. I had never heard of IBS, IBD, and stress causing illness. I was 13 years old and had never been exposed to these things before. I just listened intently, and nodding when the timing seemed right. I left Dr. P’s office that day with a prescription for prednisone and asocol, and with her blessing, I attempted to swim again.
Even though what Dr. P told me was very encouraging, swimming at that time, as I quickly saw was very different now that I was on prednisone, losing blood, and just felt like my body was attacking itself. I did the best I could that summer season. I was competitive but not even close to the level that I used to be at. One memory in particular screams out in my head and that is Westchester County Championships that took place at Rye Playland in August of 2000. I was a finalist in the 100 backstroke since that stroke, to me, required the least amount of energy and endurance. During the finals of the event, I missed the flags (which lets you know how close you are from the wall), and bashed my head against the wall. I was so disoriented, so out of it, but still managed not to disqualify myself by touching the ground of the pool. I had my coach starring at me mouthing something, officials, lifeguards, and my parents all looking to see what if I was okay and what I would do next. In a sport where every tenth of a second counts, I lost about 5 seconds trying to reorient myself. I swam as fast as I possibly could for the last 50meters of that event and ended up placing in the same spot as where I was seeded. That really opened up my eyes and made me realize that I was not okay. No matter how much I wanted to pretend that my world wasn’t falling apart with each new day, I could no longer deny that I was, in fact, very sick.
About a week later, I needed to be hospitalized because I was going to the bathroom at least 40 times a day (no exaggeration) and sometimes I would just look at the toilet and it would be all red. My mom and dad were always nervous whenever I had to go to the bathroom and there were times when my parents were outside of the bathroom door as I was doubled over in pain, saying “I hope that you are peeing.” But I wasn’t. There was blood coming out of me constantly. The pain came on intensely and very quickly. I had no idea what was going on with my body. In the hospital, they gave me two blood transfusions at that time, and increased my prednisone dose to 80mg. Prednisone, for those who are unfamiliar with the medication, is an anti-inflammatory steroid that causes many unpleasant side effects including but not but limited to, disproportionate weight gain (moon face), acne all over your body, hair loss on your head but growth in places you would never want, mood swings, insomnia..the list is endless. But, that drug was the only thing that seemed to help me with my bathroom issues.
After my second hospitalization in a month, and four blood transfusions later, I was able to start 9th grade in the middle of October. Since it was the beginning of the year, the vice principal, who happened to be a parent of one of the girls on my swim team, said I would have time to catch up. I was planning on going to a different school before this all happened but since I looked like a freak of nature (trust me, I did), and gained 40lbs in a month when I was barely eating, my parents and I decided it was not the best time to start a new school. I was so nervous starting school after being so sick, and with all of the painfully obvious prednisone side effects but my friends at school were so supportive. They made things so much easier. I tried to hide, but they always included me, I was never met with rude remarks and since this all happened over my birthday, they all pitched in to get me this huge stuffed dog from FAO Schwartz that I had wanted for as long as I could remember, and also, the smaller one for my birthday. That stuffed animal, 12 years later, is still the one I always had with me in the hospital, and the one that I sleep with now because it gives me the most comfort. I will never be able to express my gratitude towards my friends who helped me get through one of the most difficult things in my life.
As I started to become more stable, Dr. P started weening me off of the prednisone while this new medicine, 6mp, kicked in. It takes about 4 months to really get in your system, and since I needed to be weened off the prednisone very slowly, the timing worked out. I ended up getting off of the prednisone but my health was still deteriorating. The dose of 6mp that my body required to help my colon, was at the detriment of my liver so there was a lot of trial and error with dosing. Well into my 14th year of life, it became evident that my disease was so severe I would most likely not be able to get away with postponing surgery. However, since my diagnosis at that point was indeterminate colitis, which means that it is too difficult to tell if I had ulcerative colitis or crohns disease, I was able to try remicade which is a medicine that you get intravenously every eight weeks or so. In 2001, remicade had not been fda approved for use in ulcerative colitis patients, only for those suffering with crohns disease. This medication costs thousands of dollars but luckily, indeterminate colitis meant crohns disease to the insurance company, so I was able to try it. It was my last attempt to avoid surgery. That first dose of remicade was like a miracle. Dr. P told me prior to me receiving the infusion that many people call it “the miracle drug.” It really was. I felt like a rock star and couldn’t believe I hadn’t been on this medicine all along. However, over the course of the year, remicade slowly stopped working. I started out needing the infusion every eight weeks, then it went to every six weeks, four weeks, till eventually it had no affect on my extremely diseased colon. The next drug that was on tap for me was called cyclosplorine which from what I understood at that time, can have a very awful affect on most other organs. That was where my parents drew the line and said “enough.” They weren’t going to allow me to start with a medicine that was going to hurt my healthy organs in a last attempt to save something that was probably already gone in the first place.
At 15 years old, my parents and I decided that I needed to have my colon removed so I could regain the life that I had seemingly lost. Dr. P recommended the head of pediatric surgery at Mt. Sinai hospital, and since we trusted her judgment, I had a consultation with this surgeon and his nurse practitioner. For privacy purposes, I will call him Dr. D. He was very warm and thorough when my parents and I met with him. He did his best to explain exactly what was going to happen during the surgery, and what he thought I would be like post operatively, and then we discussed how it was the way to cure my ulcerative colitis. I was ready! I was so pumped, I was actually laughing with my parents and the nurses in the waiting room before they took me into the OR. I was ready to get this diseased colon out of me, have a Jpouch made out of my small intestine that would take over the place of my colon, and go about my life. The surgery to have a Jpouch was usually done in 2 or 3 steps, the first usually being the removal of the large intestine where the patient is given an ileostomy bag while the body heals from the loss of a major organ. The second, is to create a pouch in the shape of a “J” out of your small intestine for the purpose of holding stool. The third surgery is to get rid of the ileostomy bag, and connect everything to the Jpouch. Since I was not aware of the need for everything to heal and my body to deal with the loss of my large intestine, and the creation of a brand new pouch out of my small intestine, Dr. D performed the surgery in one step. I had no idea of the disadvantages at that time, and since my parents did not either, they also wanted me to have the surgery done all at once so I wouldn’t have to live with an ileostomy bag for a little while, and go through more operations than I needed to.
I woke up in the recovery room having no idea what I had done to myself. I had never experienced pain like that in my life. I felt like I had been butchered, I was barely able to speak, I could not believe how naïve I had been. In my head the situation sounded perfect. I go into the hospital, get rid of the organ that is causing me all of these problems, something new is made in its place, and that was it. I had no idea what to expect. That first moment when I woke up from the anesthesia, I think my eyes went back into my head. As with any type of surgery, people recover with time so as the pain subsided and I was a little more coherent, I started to get back my optimistic feeling. I actually brought a check list of things I needed to get through and posted it right by my hospital bed and had my dad check off things as they happened.
However, things did not go as anyone planned. I was spiking very high fevers and it became apparent to the doctors that I had a very severe wound infection from the surgery and they could not wait another minute before opening up my wound and letting out all of the infection that was there. Dr. D’s resident, who was very kind and who I could tell was a genuine human being, re- opened my incision at my bedside with no anesthesia, or any pain medicine. I held my mom’s hand so tightly as I screamed and cried. After ten days, I was sent home with a huge hole in my stomach from where they re-opened my incision which was also packed with a large quantity of gauze and some other things I honestly blocked out of my memory. I had a visiting nurse come to show me how to change the dressing and she helped to show my mom how to do it too. After a number of months, the hole started to decrease in depth and I saw signs that I was on my way to recovery. It was a little bump in the road, but now that it seemed to be on the mend, I was ready to focus on the next steps in my life which was starting my new school on time so I could meet everyone on the first day when everyone has a new schedule, teachers, and routine. I wanted desperately to be a part of that from the beginning since I was entering a new school in 10th grade, where most of the students had been in that school system since kindergarten, or shortly after. I did start school on time, but I never seemed to be improving. My incision didn’t hurt as much, that was for sure, but my whole body didn’t feel right. I had no appetite, was losing a lot of weight, and it was all just being attributed to the stress of the wound infection. As the days that turned into weeks that later turned into months went by, I started becoming full from eating one skittle, which then prompted Dr. P to tell my parents that it is not uncommon for someone who had the type of surgery I did to become afraid to eat, and many, she said, develop an eating disorder. So, for a few months I was dealing with enormous pain, fevers, and no appetite. I always used to joke that my dogs would gain so much weight whenever I was very sick because my mom would bring me things to eat that I had no interest in because of how I was feeling, and my two Labrador retrievers s at that time were all too happy to enjoy English muffins with peanut butter. It became a running joke in my family that you could always tell how I was doing by my dogs’ weight.
In November of 2002, I had a cat scan done that showed I had many fistulas in my Jpouch that were causing my pelvic area to become filled with abscesses and infection. Thus, the reason I was always so full after barely eating anything. It was right before thanksgiving so the normal hospital staff wasn’t really there. Since Dr. D told my parents it was imperative that I get a drain in my pelvic area to drain out all of the abscesses and get rid of the infection, I was admitted over the holidays. As I was being wheeled down to the radiologists’ area where they would insert the drain in through the small of my back into my pelvis, I was being promised that I would be seeing “flying elephants.” Since the doctor, lets call him Stuart, was not an actual anesthesiologist, he was not licensed to give me any medication other than something that would cause conscious sedation (how it was described to me). Right before the procedure, I asked Stuart again if I would be out of it and he said I would be seeing butterflies and donkeys, and have no idea what was happening. Well, that was hardly the case. The conscious sedation was like getting saline, I saw no flying animals but was unfortunately wide awake screaming and crying and begging the radiologist to stop what he was doing until someone could be brought in that would put me to sleep, or at least dull the pain. The nurse, who was trying to distract me by showing me pictures of her dogs, burst out crying after a while telling the doctor she thought it would be best to wait. “We can’t wait” I remember him saying “this needs to be put in now. It should have been in long ago.” As the nightmare continued, even Stuart stated his very strong feelings about doing the procedure another time because, as he stated “no one does this without medication and she is having no affect on anything I am giving her.” The radiologist yelled something at him and then as I kept begging and screaming, he told me that I was not even of legal age to make such a decision. My parents were right outside the clearly very sound proof door, and it would have taken a total of 30seconds for the nurse, or someone to go outside and update my parents, who would have immediately told them to stop. But, to my dismay, the radiologist continued and after far too long, the drain was finally in. As I was rolled out of that room and my parents found out what happened, they couldn’t believe it. That was mine and my parents first experience where we really recognized the need for all of us to stand up for my rights and what is humane. We were going through this entire hell blind, for the most part. We had no idea what the ulcerative colitis diagnosis would mean, what the medications would do to me, how within two years of the diagnosis I would need major surgery…we had no idea about anything. That was the moment, as I look back, where I started fighting, and fighting hard. I asked every single person who I came across what they were doing, the reason why they were doing it, and made them all explain in large amounts of detail what I would be going through. This situation kind of paved the way for me to seriously consider a career in patient advocacy when the time came. But, more on that later.
So, at the end of November 2002, the drain was in and all of the infection seemed to be coming out of there just like I thought. I went to school with the drain in, doing the best I could to hide it. I also had a pic line in that they did not want to take out because my veins were so tiny and this would allow them access to it if they needed to check my blood or give me any medications. I was all for that. I had small veins to begin with but the prednisone made them even smaller and they jumped around. I was never scared of needles, but when it took people more than five times to get an IV in that would last an hour, or take blood with, it became something I would dread.
Despite the drain working properly, I was still always exhausted, not very hungry, extremely pale, and still incredibly sick. I was a junior in high school at this point, and had made it through a little less than half of the school year with a drain and a pic line in, with the help of my brother who would carry my books for me, and ride the elevator with me since the stairs were too much for me to handle. There was one moment that I remember vividly and what seemingly changed the course of action during that time in the very end of 2002. That moment was when I was almost finished with my class with one of my favorite teachers, and I looked out the door into the hallway and saw Jeremy, my brother, waiting for me to help take my bags. I just stared at him, until I caught his eye and he starred back. I felt like I was telepathically trying to communicate with him that I needed help even getting up and walking. I pushed myself to get up off of the chair and finally made my way to the doorway where Jeremy was standing. He took my bags, and grabbed my hand and said “Maris, let’s call mom, you need to go home.” By the time my mom came and Jeremy helped me up to the entrance of the school, I just got in the car and was half crying and half trying to sleep, even though that seems like a pretty odd combination. It was about a week later that my parents and I discussed that I should take a medical leave from high school. I was always a very good student, always loved school, loved learning, and loved socializing. But at that time, I was down to only taking two afternoon classes where my mom would most often wait in the car for me in case I needed her, or do errands right around the school so she would be available to help me. I could not do school the way I always did…I wanted to do school “right” and there was no chance of that happening the way I was feeling. My mom called the school and asked what needed to happen procedurally for me to end the school year in December. The principal told her that the slate would be wiped clean, and all of the work I had put into going to school for those three months would not mean anything. I was furious, but too weak to care at that point.
After that decision was made, the fevers I had been experiencing came back, and January of 2003, I had my second surgery which gave me an ileostomy. The hope was that with the ileostomy, it would divert any stool away from the Jpouch so it could allow the fistulas to heal. A few months after that surgery, the fevers returned with a vengeance. It was just as I was sort of settling into myself again, and readjusting to life with an ileostomy that this happened. I was experiencing 105-106 fevers, was shaking all of the time, losing more weight and after going through months of that hell, I begged and pleaded with my parents to allow them to remove the Jpouch, and have a permanent ileostomy. The few months of “freedom” I had when I had the bag was what I was longing for. Health, the thing I always took for granted, was all that I cared about. I wanted to be healthy, to be done with doctors and hospitals and surgeries and procedures and tests and everything else that came alongside of being so ill. Since I was only 16 years old at the time, my parents really tried to hone in on the fact that if I had the surgery to remove the Jpouch that I would have to live with the bag forever. They kept repeating the word “permanent” to me, and I understood it at that time, but all I was focused on at such a young age was getting healthy. I didn’t care what it took; I just wanted to stop feeling so awful. In May of 2003, Dr. D and a colo rectal surgeon, who later became my primary surgeon and doctor, Dr. G, removed my Jpouch, rectum and anus. That surgery was one of the worst because the Jpouch had then become another organ in my body that was being removed, the removal of my rectum and anus, with the combination of having to sew up my butthole so it was like I had a Barbie butt (as many people IBD people call it), was extremely painful. The recovery was long and beyond difficult but in my 16 year old mind, that would be the end of surgeries, the end of ulcerative colitis, the end of fevers, of doctors, of hospitalizations, just… the end of this seemingly never ending nightmare. So, despite all of the horrible things that this surgery brought to the table, I was very much looking forward to recovering and getting on with my life as a healthy 16 year old girl.
Unfortunately, I was met with more challenges to overcome. I was continuously spiking fevers and very shortly after my third major surgery, I was back in the hospital with a new drain and pic line in. I remember being in the hospital during that time because it was the last time I ever saw Dr. P. She came into my hospital room and was talking to my dad and I and once she heard that fistulas and infection were causing my issues, her response was “huh” and she walked out the door never to be heard from again. I later learned that fistulas were indicative of crohns disease and maybe she thought she should get out of there before it came to my attention that there was a possibility of a misdiagnosis. Of course, when I was 16, that thought never came into my head. I had no idea why Dr. P just left, but I was too consumed with what was going on with me physically, and too scared to even really care at that point. My case was turned over to Dr. G, the colorectal surgeon, since it was very clear I had a very complicated case that required the best of the best in that field of surgery. Dr. G’s partner came in to see me one early morning in May of 2003, just after having one of the worst surgeries of my life, and told me I needed to be seen by an infectious disease specialist, who I met shortly after he told my parents and I his opinion. I met with this doctor…I always called him Gumpers because I never liked saying his actual name, and I really disliked him as a person. I spent over six months on heavy duty antibiotics and a bunch of other medications I gave myself at home through the pic line. I had an IV-type machine at home, had a visiting nurse come once a week to change and clean the pic line dressing and my parents helped hook me up to the machine twice a day. Remember the blackout in August of 2003? Well, that was a particularly awful day for me because my mom and I were forced to try to figure it out in the pitch black while Jeremy held candles and flashlights, since my dad was stuck in the city.
As with everything else I have talked about, I got through it all. I got through the many, many months of IV medication at home under the direction of a doctor who treated me like a specimen and not a human being, but I made it through like the champion I know I am. Things seemed to be improving over the next year or so. I was no longer spiking any fevers, my appetite had come back, my cheeks had color back in them, and things seemed to be on the right track. That was, until the idea of living with the ileostomy for the rest of my life, really got into my head. I was happy and fine to live with it initially because after the six months of IV antibiotics, I was starting to feel OK again, more like myself, and less like someone who could barely move and who needed her parents to carry her to the bathroom.
Then, at the age of 17, when the idea of a “permanent” ileostomy really hit me, I became determined to get rid of it. I focused all of my energy on what I could do to get rid of this awful bag on my stomach. There was no way, I thought, that I could ever live with this bag for the rest of my life. So, I did research and found the kock pouch, which is a continent ileostomy. Basically, the surgeon makes an internal pouch out of your small intestine, with a valve that keeps all of the stool/waste inside the pouch until the patient sticks a catheter in the stoma that is made, which lets the contents out of the pouch. There was no appliance involved, I could still wear bikinis, wouldn’t have the stress of worrying about it when I was with a guy, and it only needed a small bandage to cover it. I then invested two years into trying to get my parents to allow me to have this surgery. I even had a stoma revision to see if maybe that would make living with the bag easier. It did not. The surgery is known for its complications that can only be dealt with surgically. Problems with the actual pouch are unlikely, but since you are asking the body to do what it is not designed to do, there are many problems that come with the valve, which is what holds all of the waste in the pouch. And these complications and issues come unannounced, with no warning, and for no reason. But, I did not care. I was willing to do everything and anything to get rid of this ileostomy bag. Against the advice of many doctors, my parents both agreed that if I had any chance of accepting this bag, I needed to see that I did whatever I could to avoid it.
I started my first semester at Manhattanville College where my ileostomy bag fell off on my very first day in the middle of class. We were all in a circle so we could do introductions and I had to pretend my Snapple spilled all over me. I was in shock, and as you can imagine, it really made me feel like going for this kock pouch surgery was the right thing to do. I took the spring semester off to have what would be my first kock pouch surgery. I was so looking forward to this new chapter of my life since having the ileostomy from 16-19 truly destroyed me mentally. I had such low self esteem; I started binging and gained a lot of weight from truly eating my feelings. I would stay up late and eat a lot, and hide the wrappers from my parents because I did not want to have to deal with it. That was how I knew I could not handle this bag. There was a vicious cycle that I was battling inside me about my fluctuating weight. At my lowest, I was 82lbs at 5’3 and when I was on prednisone, I got up to 140lbs. I had so many clothes, all different sizes, because I looked differently all of the time. It was another major thing I was going through psychologically during this period in my life, and something I still struggle with to this day. I had no idea who I was anymore, or what I was even supposed to look like. I didn’t like when people said I gained weight and looked healthy because I felt it was minimizing all of the horrible things I had to experience and go through. And in my mind, it wasn’t over. Even with the ileostomy, it was a constant struggle to accept it and deal with it. I lost my battle of acceptance and January of 2006, I started my kock pouch fight.
The kock pouch fight was a tough one, to put it mildly. I loved not having to have an appliance, to be able to take a shower or go in water and not have to be bothered by anything external. I loved knowing that no one would ever know I had this unusual way of going to the bathroom unless I chose to tell them. I just clung to that, and kept reminding myself how miserable I was when I had an ileostomy. Then in March of that same year, I had an issue with the valve and needed to undergo another surgery to fix it. This surgery has a long recovery time and requires a tube to be in the stoma for about six weeks in order to stabilize the valve. It was not an easy thing to go through, especially after having just gone through it two months before. But, like a naïve little soldier, I kept my eye on the prize. No bag. No bag. No bag. That is all I cared about. I had months of peace after that second surgery in March of 2006, and started my second semester of college at the end of August. I was taking some very difficult classes, where I worked very hard because I knew it would all be worth it at the end. To my dismay, I needed to have another kock pouch surgery in the middle of October, thus needing to withdraw from all of my classes as if I was never there, and as if I never worked hard during the time I was there. My mom was actually in Europe on business at the time, and since my Dad and I didn’t want to ruin her trip, we did not tell my mom what was going on. My dad stayed in the hospital with me 24/7 during that week. Usually, my parents tag teamed it…my mom would be with me all day, while my dad went to work, and then my dad would come to the hospital after work and stay with me overnight. This time, however, my dad had done it all with me alone. The interesting part of this is that at the very moment I was having surgery, my mom felt like she was about to pass out. She told me she was with her friend and colleague at a museum at the exact time I was being taken in for surgery, and she felt like something was wrong. My mom and I were like kindred spirits. I know there is an amazing bond between a mother and her child, but this was different. It was as if we were truly connected. My dad eventually told my mom what happened and although she was extremely shocked, to say the least, she said she knew something was wrong when she was there, even before my dad told her I had another surgery.
I recovered from that surgery and was pretty much OK until the end of 2008. I was still enrolled at Manhattanville College at that time, even though I wasn’t there for many semesters. I had one professor who actually had crohns disease that made my life at school so much easier. I spent so much time hiding and being fake, and always pushed myself way too hard because I didn’t want to tell my professors that I was sick because that , to me, seemed like I have a cold and can’t muster up the energy to come in. But, not this professor. I don’t even remember exactly how it came up but once he knew what I was actually dealing with, it made it a lot easier to be open. I had at least one professor out of a five that semester, who I could be completely honest with. A professor who was so kind and understanding, who trusted me and knew that if I was unable to make it into class, that it was because it was genuinely impossible for me to do. And being a crohns sufferer himself, he had a sense of compassion and a way about him that didn’t resonate with me as “I am your professor. You are my student. I don’t care about your personal problems.” That was sort of the impression I got from most of my other professors. Not that they weren’t sympathetic, but I still had to dance around things with them and it made my life even harder. At first, I was majoring in psychology with a minor in sociology and anthropology. Ironically though, the psychology department at Manhattanville was not at all sympathetic to what I was going through. I bonded with one professor in the psychology department who allowed me to take a test at a different time than the rest of the class because I was too sick to be present on that day. I went to his classroom on the day that I was supposed to take the test, and he suggested I take it in his office. We then proceeded to walk up the stairs, him walking behind me, and I was so weak I fell into his arms on the stairwell. He was extremely understanding, even though I was very embarrassed, and told me I could take the test another time if I felt I needed to go home. I took the test that day because I did not want to be treated differently. I just wanted to get it done. I pushed through it, feeling like I was going to pass out, but I did it.
Sorry about that tangent. So, at the end of 2008, stool was leaking from my kock pouch which meant that there was something wrong with the valve…again. I did whatever I could to not lose another semester and actually made it through, as hard and awful as it was, until winter break. I had my 4th kock pouch surgery in December of 2008, went through the long and difficult recovery process with a tube in my stomach for six weeks, and then two days after the tube was removed, I was back in school. I couldn’t really share the experience I had over winter break because I was always afraid people would think I was a downer. So, when people asked how my break was I told them I had surgery but made it sound completely irrelevant and then quickly turned the conversation back to them. People love to talk about themselves, I’ve learned, so I have made it a habit to try and focus on other people instead of myself. It was easier for me than being fake so people would still think of me as a positive, upbeat person. I didn’t want to share my horror stories for fear that no one would understand and it would be minimized. I would also get comments such as “oh, I had my wisdom teeth removed so I know exactly how you feel going through surgery.” Ummm, I’m sure you can figure out which finger I always wanted to give to those people who said that, or told me they had a cold so they know what it is like to be sick. Rather than going off on those people, I learned quickly to avoid talking to them about my serious issues. I couldn’t bare to hear their moronic comments, so for years it was just easier to pretend like what I was going through didn’t matter too much, or put a huge positive spin on it.
Between 2009 and the middle of 2010, I had two hernia surgeries and was clearly having issues with the kock pouch again but tried everything I could to avoid surgery. I even tried to convince myself that I had some control over it. I tried to control it by not eating that much, and by sticking to the blandest foods ever. I literally did everything I could to avoid the fact that there was something wrong, yet again. At the end of 2010, I went to see Dr. G to see if maybe it was something I was doing that was causing stool to leak out of the pouch. When he examined me and looked in through a scope, he saw that the valve had completely unraveled. In February of 2011, I had my fifth attempt at having a kock pouch and avoiding the ileostomy. But there was something different in me after that surgery. I felt paralyzed to move forward. I was so afraid that I was going to get adjusted and get back into my life, and something would go wrong again. I have had so many disappointments at that time, with surgery complications, and so many random blockages (which I didn’t even tell you about), that caused me to need to go to the ER immediately. There was something inside me keeping me from starting anything, or committing to getting back out there. In June of 2011, just as I was starting to think of myself as OK and tried to really think that maybe the 5th time was the time it will work. I ended up back in the ER later that month. I needed a specialist to re insert the tube because he had a way of navigating through my system which I could not see from the outside, and he placed the tube back in. He told me to keep the tube in for about six weeks and then he would take a look and see how the valve was doing. The time period between that night/early morning and the end of July, I was seriously thinking about giving up my kock pouch fight. I had reconnected with an old friend who had ulcerative colitis and an ileostomy, and told her what was going on and asked her how she was doing with the bag. She was someone who never wanted to have another surgery again and even though she despised the bag herself, she came to more of an acceptance of it than I ever could. Maybe it was the three year age difference, who knows? After speaking with her, and having many conversations with my parents about what to do, I decided to end the fight.
On July 27, 2011, I went in for my 14th surgery to have my kock pouch removed and closed up, and a permanent ileostomy was created. Although I never came to a full acceptance of the bag, I knew it was the right thing to do for me then. I had to meet with an ostomy nurse before I could be discharge who I barely listened to cause I already knew about the appliance, and how to change it, and manage it. I just wanted to get out of the hospital and start my new life as an ostomate…not loving the bag, but knowing I did everything I could to avoid it, and also knowing that this was my only way out of the surgical rollercoaster I was in. I needed to be able to live. I was 24 at that point and desperately needed to be able to have my own life. I never went away to school because I couldn’t be away from home, I was never able to travel because I always needed to have my doctors around me, and since I was diagnosed with ulcerative colitis at the age of 13, I was never able to develop like a normal teenager. I was never able to start the process towards independence, because I needed my parents to take care of me. As one psychiatrist that I saw put it, “this illness has become like a permanent umbilical cord.” That was exactly it. The UC kept me close by my parents, the Jpouch and all of its problems made it so I was too sick to take care of myself, the ileostomy was so unpredictable and more importantly, something I kept a secret so I needed to be around my parents because they were one of very few who knew I had a bag. And the kock pouch fight made me afraid to be out in the world because at any moment, during any time, something could go wrong that would land me in the hospital and on the operating table again.
I was doing pretty well after that surgery at the end of July. I was adjusting to the bag, I was more accepting of it because I knew I had done everything I could do prevent it, and I just wanted the next chapter of my life to start. I knew I would never forget what has happened to me and all that I have been through, but things were really looking up. I was ready to embark on my next journey as a healthy ostomate who wanted more than anything to turn my negative experiences into helping people. I have developed a unique understanding of psychology and found myself being helpful to many people around me when they were struggling with difficult times.
“The most beautiful people we have known are those who have known defeat,
known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ~ Elisabeth Kübler-Ross
That quote, I believe, represents me and my story.
Which, unfortunately, is not over. So as I was saying, I was doing well up until November 2011 when I learned I had periastomal pyoderma gangrenosum, which is another chronic auto-immune disease that causes ulcers right by the stoma. It is accompanied with an enormous amount of pain, and frustration since it is right under where I need to put my appliance. I had never heard of this before, but quickly learned that there was no right way to go in terms of treatment, and that the options were basically the same as if I was right back at the beginning with my ulcerative colitis diagnosis. When Dr. G first mentioned it, he said a week in the hospital on cyclosplorine (the medicine my parents would not allow me to go on about ten years ago), should help. I am pretty sure I laughed. My mom always says “laughing and crying are the same release,” and I just looked at him and laughed. It was all I could do to keep myself from screaming at the top of my lungs “WHY ME??? HAVEN’T I BEEN THROUGH ENOUGH???”
I then proceeded to see a dermatologist who treated me for months with steroid injections at the stoma site. I was very lucky in that I didn’t require medicines like the one Dr. G mentioned , or remicade (again), humira, enbrel, or my favorite, prednisone. The pyoderma gangrenosum eventually did go away, although I cannot get it out of my head that it is chronic. It was another curve ball thrown my way. Something I never expected, and never in my life had even heard of. This completely derailed me emotionally. I started isolating myself, had enormous anxiety, suffered from major insomnia, and would cry almost every day for hours on end. Everything I knew and clung to when I made the decision to give in and have an ileostomy, was gone. I thought that, “yeah the bag would suck, but it was allowing me to live so who cares.” That was my mentality prior to this new diagnosis and prior to months of treatment.
While this was going on, I started realizing how I needed to have people in my life who understood. I would not tell anyone about the bag unless they had IBD, or were close family members and made sure m y parents did not let on that I had a bag to any of their friends…so the whole hiding phase was extremely exhausting. I found a fb page called “The Great Bowel Movement” – pretty clever I think, and started talking to one of the founders of the page. We bonded over the loss of our sports (which was our identity in many ways) and all that it meant. I had come back in the pool only to get knocked down more times than I could count, and fought so hard that it is too painful to go into any more detail about it now only to be shot down over and over again, and this girl was someone who could relate to that feeling because she was a big runner when she was in high school. We talked about how hard it was so see everyone else who was on our respective teams continue throughout college, and how even the smells of the pool/track were a painful reminder of what we lost. It was through this amazing girl, that I started talking to other people who had gone through similar experiences. No one has the same experience with IBD, but I have learned that the emotions are very much the same. The loss of normalcy, the constant anxiety and fear of the unknown, the difficulty with committing to a job or school or even plans, the fear of embarrassment and going through many years all alone since ulcerative colitis and crohns disease are illnesses that deal with bowel movements, something that doesn’t exactly roll off the tongue.
I felt so much better after talking with this girl, I will call M. I felt like my feelings were validated and that I wasn’t alone. She introduced me via facebook and email to other people who she knew and who were also involved in a IBD and ostomy fundraiser called Get Your Guts in Gear, which is a two day bike ride to raise money for education, research, and awareness for IBD sufferers. The rides took place in NY in June, and in WI in September…actually this coming weekend. When I registered to crew in the GYGIG this past June, I was very nervous. I had never been to an IBD event before, and away from home for 3 days, long hours, it seemed so overwhelming. My dad had done a Boston to NY ride to raise money for aids/hiv and told me how it would be one giant love fest. Prior to the weekend in June, I started watching some videos of other fellow IBDers, and came across one girl in particular, who I will call S, whose videos I could really relate to. I have since become very good friends with her, and both she and M have helped me see that I am not alone, and that hiding is no way to live, and all of these things brought me to a better place in terms of acceptance and my outlook.
Get Your Guts in Gear was the best thing I could have ever done for myself. The days were long and exhausting but I met some amazing, inspiring people who have either struggled or are currently struggling with the same issues as me. The whole weekend was amazing…it was like a breath of fresh air since I could just be me. No excuses about why I am not eating certain things or at certain times, nothing like that…just support and understanding. It is because of that weekend and the wonderful friends I have made there and then were later introduced to, that I now feel ready to share my story. It is obviously very difficult to put 12 years of hell into words and I have tried not to drag on about things…even though I left out a lot. I am ready to share my story with the world and come out of hiding. This is me, this is who I am and although it is not how I ever imagined my life would turn out, or where I would be a few days before my 26th birthday, I am one strong girl. It took my amazingly supportive family, and wonderful friends to make me see that I am not alone, and that I am OK just the way I am. I have lost many friends along the way, and have since cut many out, because in this day and age I find it very unacceptable to not be there for someone. Even a simple, “how are you feeling?” text does not require that much effort. My life is now filled with people who I love, and who love me for me…not for the me I show to the world, but for who I actually am.
What you just read is a synopsis of much of what I have gone through over the last 12 years. I plan to blog about this experience and expand on the emotional and psychological impact of living with not only a chronic illness (which is hard enough) but one incredibly difficult to share. I hope that you will follow my blog, and to those people who are going through their own trauma, I will be sharing more of my experiences in detail. While I am using this as a catharsis for myself, to be able to tell my story and let it all out, I also hope that I can help others along the way.