My Crohn's Story
Updated: Mar 14
I have been living with Crohn’s disease for years, with many significant ups and downs, but this is the first time I have sat down and pieced together my journey. I warn you that I have a very severe and aggressive disease and some readers may find my story disturbing. But I hope that, rather than frightening anyone, my story can be one of HOPE. I am doing very well and have a full and wonderful life. I have been symptom and medication free for nearly two decades. My goal is to tell my story honestly and to demonstrate why we so desperately need research towards a CURE and why there is HOPE. Here is my story: My symptoms began suddenly in college. I was a sophomore studying microbiology and had joined a fraternity. One of the freshman pledges had laced brownies with huge doses of a laxative in what he thought was a funny prank. Everyone in the fraternity got sick, but I never got better. In the first two weeks after the incident I lost a tremendous amount of weight and tried desperately to regain it, without success. My initial symptoms included profuse diarrhea and severe abdominal pain which continued for about eight months and my doctor kept prescribing anti-diarrheal medications, but nothing worked. My primary care doctor was perplexed, but with my hemoglobin at six, he ultimately admitted me to the hospital for testing. He initially thought I had aplastic anemia (bone marrow failure) and was prepping me for a bone marrow biopsy but gave me an upper and lower GI (Gastroenterology) scope first. The results were enough to diagnose me with what was then called Regional Enteritis (now known as Crohn’s disease). Having discovered that I did not have the life-threatening aplastic anemia he had suspected, my doctor seemed relieved and told me, "Don't worry. You only have IBD". “Only IBD”. I will never forget those words that affected my life so drastically for the following 15 years. Immediately after my diagnosis, I was put on prednisone and Azulfidine and given several blood transfusions, all of which helped me feel better. In fact, I felt so good for the next few months, that I thought I had “beaten Crohn’s”. I guess I was young and naïve. But the diarrhea eventually returned with a vengeance accompanied by episodes of excruciating pain. This is when I was finally referred to the first of many GIs (Gastroenterologists). I was admitted to the hospital again with low hemoglobin and a mass (abscess) in my abdomen the size of a football. I also had a fistula (an abnormal connection or tunnel between two parts inside of the body) and a partial intestinal blockage. They immediately cut and drained the abscess and put me on no food or water by mouth for one month while in the hospital in the hopes of having the fistula close. By the end of the month it had closed, but only for a couple of days. Once I started eating and drinking it opened back up. This was my first of many experiences with fistulae, a particularly challenging complication for some patients with Crohn’s Disease. Surgery was discussed but ruled out as it was not curative for Crohn’s. A new GI I had been referred to started me on 6-MP (an immunosuppressive chemotherapy drug), which was still experimental at that time. I remained on 6-MP for two to three years and had a temporary closure of my fistula (for about one month). During this two to three-year period, I had fecal material draining from my abdomen through what the doctors termed an enterocutaneous fistula. This was particularly challenging for a young man in college trying to date, have fun with friends, work, go to school, and be as normal as possible. I tried to adapt and cope, but I was frankly a mess and, looking back, I do not know how I endured it other than just taking it one day at a time. My GI clearly did not understand the physical, emotional and social impact of this disease on me and had few treatments to offer, so I found another one willing to take some action. I was about 22 at the time and realized I could not continue as I was. I went into his office with a pile of published research articles related to potential causes of Crohn’s disease. He patiently listened to me, but there was not much he could do other than offer surgery to try to get rid of the fistula and the damaged part of my intestines. So, I had my first surgery in June 1982, and they removed my terminal ileum, cecum and a part of my ascending colon - in total about two feet of intestines. I was whole again and back on prednisone, Azulfidine and 6-MP. I stayed well for about 1 to 1.5 years. By this time, I had graduated from college, got married for the first time, moved away from home and started my first real job as a molecular biologist at the University of Florida. About a year after the move, the symptoms slowly started to re-appear and my current GI increased my medications once again. One day I started having excruciating abdominal pain (rhythmic pain like before but more intense and frequent) and was managing myself with extra strength Tylenol for a few days before going to the hospital and learning that my intestines had perforated, and based on what the surgeon estimated, it had happened about three to four days earlier. He said he had never seen such a mess in his life and there was no explanation for how I was still alive. They had to remove all my abdominal organs and rinse out my abdominal cavity and organs with sterile saline numerous times in the hope of reducing the bacterial load in my abdomen. They told my wife at that point that the next 12 hours would determine whether I would live or die. Amazingly, I never went septic or spiked a fever. Again, there was no rational explanation for how I survived. Unfortunately, due to the massive infection, they could not suture my abdomen closed (like they typically would for any surgery). They wanted me to heal from the inside out to prevent another abscess or worse, so my abdomen was loosely held together with what was essentially two large rubber bands. I was on massive amounts of antibiotics in the hospital and then as an outpatient. I eventually left the hospital with a temporary ileostomy (a surgically created opening in the abdomen in which a piece of the ileum (lowest part of the small intestine) is brought outside the abdominal wall through which digested food passes into an external pouch) and lost a lot of intestines (several feet). I was devastated with the ileostomy, but I took it a day at a time. About one year later without symptoms, I had surgery to reverse the ileostomy. I was whole again - at least I thought so. I felt well for a while but about 1.5 years or so later the symptoms started back up. As usual in my case, the first hint of my relapse was punctuated by a symptom called erythema nodosum. This is a particularly painful complication for some Crohn’s patients in which large red nodules would form on my lower legs. So, I knew a relapse was on its way. At first, they were mild but got steadily worse over the next two years and again they increased my medications. Shortly thereafter I had to have another surgery removing more of my intestines to get rid of some intestinal fistulas communicating between loops of intestines. Over the next few weeks, I healed - no ileostomy this time, which was a huge relief. However, I was now on high doses of prednisone again and this time, for too long. But I was happy and was able to get back to my regular routine (work and school). During this time when I felt relatively well, I had started playing softball in an adult league. Back to normal I hoped, but unfortunately, during a softball game, I slid into 2nd base and noticed my hip was hurting. After a couple weeks of the chronic pain in my hip, I went to an orthopedic specialist and he diagnosed me with aseptic necrosis of the femur. He said the likely cause was too much prednisone for too long. I hopped around on crutches for a little over a year in an unsuccessful attempt to allow it to heal. Unfortunately, at that time, many of the buildings at the University of Florida were not accessible (no ramps or elevators), so I had to go up and down the stairs on crutches. At that point, the doctor said I was too young to get a hip replacement unless the hip totally collapsed which it did not. Therefore, I had to continue to deal with the pain and eventually over the years my hip joint froze due to the damage and became severely arthritic and essentially immobile. This situation progressed and continued for about 20 years. It was additional collateral damage from CD (Crohn’s Disease). Although my hip continued to bother me, I was generally symptom free for a couple of years from CD. During this time, where my disease had quieted down and when I was on crutches, I met my future wife (been married over 20 years now). To date, this meeting was a bright point in my life. But reliably, CD gradually crept back into my life. My GI increased my medications again (this time no more steroids due to aseptic necrosis). My only options were 6-MP, Azulfidine and 5-ASA. It was now the holiday season and I was trying to maintain somewhat of a normal life and have some family over for Christmas Eve, making homemade meatballs, sauce and gnocchi for dinner. When dinner was over and everyone left, once again the episodes of excruciating pain began. Although by this time I was good at dismissing the agony, when I vomited fecal material, I knew it was a medical emergency. This time though, I had a total obstruction of my intestines. I had always been plagued with stricturing disease from the beginning of my journey with CD. Firstly, they had to stabilize me and relieve the enormous amount of back pressure, so they inserted a nasogastric tube (NG tube). It took about five days to stabilize me and let the dilated portion of my intestines settle down. I had surgery and again was left with an ileostomy and about 2 feet of intestines removed. I was devastated at the thought of this – a temporary ileostomy was one thing, but the idea it may have to be permanent seemed psychologically and physically unbearable. Again, I learned over the years with CD to take things one day at a time. I healed over a couple of weeks and was relatively healthy for about a year and gained a lot of my weight back and now weighed about 170 lbs. Over the next few months my first marriage ended, and I had started dating my current wife who I had met awhile before as a friend. She did not care about my physical challenges including my dead femur head (which resulted not only in pain but also a very severe limp) and my now permanent ileostomy. She was an angel and I was amazed by how she handled the situation. A few months passed and she and I moved to Texas for a year and then to Connecticut for another year or so. During this time in Texas and Connecticut, my health continued to be okay and we got married. It was also during this time that I also started working in the pharmaceutical industry, developing treatments for degenerative neuromuscular diseases. I worked there for about a year and then decided to go back to graduate school to get my PhD, as my wife had also started graduate school in New York City. Due to the long commute to school for my wife, we decided to move with our dog, Snowey, to NYC into resident housing. Once we moved to NYC, I also started graduate school at the same school and continued to work at the pharmaceutical company. I had long busy days in school and work and stretched myself too thin for about eight months at which time my symptoms came back with the appearance of an enterocutaneous fistula. Shortly after that I resigned from my pharmaceutical job and decided to focus primarily on graduate school and getting my PhD. I found a new GI at Mount Sinai and started, once again, on increased meds (6-MP and Asacol). They did absolutely nothing to reduce my CD symptoms or to close the nasty fistula. My GI then decided to ask me if I would be willing to enter a clinical trial for a new drug that showed some promise in helping with closing fistulas in CD. I jumped on the chance as nothing was working. He put me on Remicade, but it did not work for me. No medical treatment seemed to work for me. My disease was getting worse with increased symptoms and by this time I lost about 40 lbs. and weighed about 130 lbs. I was desperate and began doing more intensive research into the possible connection between Mycobacterium avium paratuberculosis (MAP) and CD, which I had followed and collected since the mid-1980s. At my next appointment, I brought this information to my GI, which he dismissed as unproven, but agreed to let me try an antibiotic regimen since it could do no harm. I started on my antibiotic regimen in the mid-1990s. The regimen consisted of three antibiotics: rifampin, clarithromycin and ciprofloxacin. Based on the existing research at that time, I realized it would be a long course of therapy measured in years. I took rifampin and clarithromycin for six months and then switched out clarithromycin for ciprofloxacin for another six months and then back and forth between the two but always steady with the rifampin. I hoped this would prevent resistance. This did not really improve my symptoms immediately, but I continued to stick with it and research. I connected with two other interested patients online, Allan from Ireland and Ruth from Philadelphia. It only took two to help me move mountains. With Allan’s IT experience and my science background we digested articles about MAP and its possible link with Crohn’s and putting the information online. Eventually, these two people led me to a group called PARA (Paratuberculosis Awareness and Research Association) and my testimony about my experience with Crohn’s in front of the House Appropriations Committee in Washington DC. I was at the end of my second year in the doctorate program. Also, during this time, my wife and I had our first child (a son) and my wife finished her PhD and started her postdoctoral fellowship. I continued my PhD research and finished my PhD in a little over a year later (my three years to complete my PhD was a new record at my graduate school). I continued with my antibiotic regimen and, once I graduated, we were off to postdoctoral fellowship positions in Baltimore, where I also continued my therapy with a new GI. I continued the line of research that I started when I worked in the pharmaceutical industry and studied degenerative neuromuscular diseases. I was able to get grant funding from both the NIH and the Myasthenia Gravis Foundation to do my research. Note that, during the entire time on the antibiotic regimen, from finishing graduate school to my postdoctoral fellow transition, my CD never went into remission; I continued with the fistula, my ostomy, my CD symptoms, my bad hip from the prednisone and a lot of chronic pain. If that was not enough, over this time the one fistula gradually became two, and then three, and four and so on. Three or four of them were enterocutaneous fistulas draining out of my abdomen. In order to deal with these new surprises, I had to use adhesive to attach four small ostomy-type bags to my abdomen to collect the drainage – of course this was in addition to my ileostomy bag. I also had one fistula going from my intestines to my urinary bladder, and one or two from my intestines draining out near my rectum. I was a total and utter mess - I literally would rock myself to sleep each and every night with the help of pain meds. Eventually, my GI told me that I could not continue with all these fistulas forever especially since at least one was communicating with my bladder and potentially other internal organs. He said I was at high risk of getting a life-threatening infection, but my wife was now pregnant with our daughter. He was concerned about all the stress I was under before our daughter’s birth and he worried I would not do well in surgery. He said I needed to wait until our daughter was born and was at least six months old. So, I continued to do my Postdoctoral research and work in the lab fulltime. Our daughter was born in Oct of 2000 - and the countdown to my surgery began. With my new surgeon at Johns Hopkins Medical Center, my surgery was scheduled for June 1, 2001 and I arrived at 6am to get prepped for an estimated daylong surgery (ended up being 11 hours). Prior to my surgery, my surgeon met with my wife, my Dad and me before I went into the operating room. He wanted to set our expectations and they were quite low from his perspective. He said that likely this surgery would not go well. Firstly, he said I was very weak, weighed about 110lbs (I saved my picture from then as a reminder) and was malnourished due to the stricturing and fistulas everywhere. He also said I could die on the table and even if I survived surgery that it was more than likely that my fistulas and disease would come back soon (since that was the general pattern of my disease course over the years) - but he understood well that I had few options and that he had to proceed. About 11 hours later, I woke up from surgery and the surgeon told my wife and I what he did and what he saw. He said I was missing a lot more intestines than what was described in the previous surgical records. I was on the edge of what he called “short bowel syndrome”. He said there was a two-inch piece of my intestines that was causing all the issues and where all the fistulas were coming from. He said it was so strictured and narrowed due to previous surgeries and damage that he could not even fit a neonatal IV catheter through it. He was astonished at how I was able to get any nutrition at all prior to surgery. All the rest of my intestines were clean - he said he checked every inch inside and outside. He measured the length of my remaining small intestines on the surgical table and estimated that I had ten feet of small intestines left - which was just enough (as long as I did not have another relapse that required additional surgery). Now I understood why it took 11 hours - he was meticulous. I went home five days later. It took me about two to three weeks to recover at home and get back to work. I healed in record time from this major surgery. I then decided it made sense to continue my antibiotics for another three months until Sept 2001 (three months post-surgery). It was at that time that I stopped all medications for Crohn's disease. I am now symptom and medicine-free for 19 years this coming June 1, 2020 and weigh about 195 lbs. I am an N of one. I have a very severe case of Crohn’s with many complications. I was the subject of many Grand Rounds at Mount Sinai hospital due to my extensive disease. But here I am healthy and living a wonderful life with my family, my work and my interests. My recovery has caused me to want to give back and work harder to find a cure for this disease. No one should have to go through even a fraction of what I went through.