Elle – Skiing Again After AMAT Success
This story is one of pain, as all Crohn’s stories must be, but it is also about fear. Fear of the unknown, fear of the known. If you are a patient thinking of trying Anti-MAP Antibiotic Therapy (AMAT) but are afraid, read this. If you are a physician wondering if you should prescribe the AMAT drugs and worried about it, read this. This story has a happy ending. You should hear it.
My adventure with digestive problems began with constant, unremitting diarrhea while I was in college. Mom and Dad sent me for tests. After a barium swallow with follow through (that took forever because I had a spastic duodenal sphincter) and a horribly painful barium enema (think about having lava pumped into you) the gastroenterologist had no diagnosis. He suggested avoiding dairy products because I might be lactose intolerant, but basically the message I heard was, “Go away little girl, there is nothing wrong with you.”
Multiple family members have Irritable Bowel Syndrome (IBS), so before long I just numbered myself among them and went on with my life. I controlled my bowels with Imodium as well as I could and knew pretty much every public restroom in, near, or on the way to the places I frequented. I had 3-4 loose stools on a daily basis, plus flares for days, weeks or months during which I might make 20 trips to the bathroom each day. There were other fun symptoms too. Some I knew were part of my problem, like the intermittent 30-second stabbing pain in my right side that made me vomit at work. But there were other symptoms that I didn’t know were related. Like the time my mouth filled with sores overnight and made it hurt if my tongue or cheeks touched my gums; or the inexplicable, roving aches in my joints that came and went and made me feel old and decrepit. It sounds weird to say this, but I got used to it.
I am happy for those who can get symptom relief by following dietary restrictions like the ones you read about on the internet, but nothing helped me. I tried to eliminate foods that triggered the painful diarrhea, but never found rhyme nor reason to the foods that caused me to run to the bathroom to empty my bowels in excruciating pain (the kind of pain that drains all the blood from your face and makes you sweat, that makes you vomit in the trash can while sitting on the toilet.) Never eat a fast food burger! That’s true for the all the chains you can think of except a small chain in my area (I love you Five Guys!) where I could have a burger without a problem. Never eat nuts or seeds! Except I found that I can eat walnuts, pecans and sunflower seeds among others. Never eat greasy foods! Except I found a place where I can order a Reuben with impunity. Never eat lettuce off a salad bar! Now that did hold true for 30 years. Salad bar lettuce was just plain scary, but regular salad at home or even one in a restaurant that came directly from the kitchen was fine. As I tried to come up with list of do’s and don’ts I realized that my list made me look like a crazy person. When you tell someone, like a doctor, “This bothers me, except when it doesn’t” you do not sound like a rational patient. After 30 years of dealing with this issue, with the exception a tiny number of foods (prior to AMAT), I could not say with confidence whether a particular dish or food would or would not set off an episode of painful and explosive diarrhea that lasted for days.
Eating out, or even at other people’s houses, was a real anxiety booster. Would I find something on the menu I could tolerate? Would I spend half the time in the bathroom? Would I clog up this person’s toilet again?
Traveling was another anxiety booster. Would I have an accident in the car? Was there a clean place to go to the bathroom? Was it better to just sit on this public toilet seat or risk soiling myself while I try to cover the seat with toilet paper? Yuck.
Before AMAT, pain was a big player in my life. Pain in random, non-injured joints made me feel crazy. My bum bled, was sore and itched. I already described the kind of pain associated with my diarrhea. Think about it for a minute. Have you ever had a really bad gas pain, or passed a kidney stone, or had birth pains? This is the level of pain I experienced, typically 3-4 times a day (but up to 20 times a day), 3-4 days in a row each week, for years. I have no idea the number of times I woke in the middle of the night in pain – sometimes once a month, sometimes 2-3 times in the same week then not again for another 3 months. I would wake, evacuate my bowels, vomit, lie on the cool bathroom floor, evacuate my bowels, vomit, lie on the cool bathroom floor and on and on and on for 2-3 hours until the episode subsided, then I’d wash my face, brush my teeth and go back to bed. I’d get up in the morning, take care of my family and go to work. Looking back now I realize that my weird habit of eating only one time a day (in the evening) was likely due to a subconscious understanding that that would limit my problems when I was out in the world and away from the toilet.
Being tired all the time interfered with everything. I woke up as tired as I was when I went to sleep. I fell asleep when I got home from work. I had little energy for the daily chores, let alone energy for the fun stuff that makes life worth living.
I did not seek medical help for this problem between college and my 49th year. I had been summarily dismissed by the gastroenterologist and was never going to submit to another barium enema, no way, no how. But then one day the vomiting started and simply wouldn’t stop. I’d been experiencing a remarkable absence of diarrhea and had no bowel movements for days and days. This should have been a warning to me, but I just thought it was a nice change. It gave my bum a little time to heal and not be raw all the time from the wiping. After the first hour or so of non-stop vomiting, I knew this was different than anything I’d experienced before, and ominously, I didn’t have diarrhea along with the vomiting. There is a long story about this flare that includes driving on the interstate vomiting in a bag, passing out by my front door and more, but I will spare you the details. I ended up in the hospital with a bowel obstruction.
I am one of the lucky ones. My obstruction responded well to IV antibiotic and antimicrobial drugs (Cipro and Flagyl), and after 5 days, NPO then on clear liquids only, I finally, and proudly, produced a tiny piece of poop. Yea! They let me go home. Starting about 3 weeks after my hospitalization, and for about 6 weeks, I was remarkably and joyfully better. My bowels worked properly. I slept well and woke refreshed. I remember thinking, “Oh, this is what I am supposed to feel like.” It was very cool until it went away and my symptoms returned. Those 6 weeks are still my benchmark, my goal for treatment.
There are bunch of tests you undergo if your bowels close up. They include drinking foul stuff so people can watch it pass or drinking foul stuff to make everything pass so someone can see more clearly what is going on inside. It is a perversely interesting experience for a person who is afraid to eat new things for fear of setting off a cascade of pain and diarrhea – you are all but literally swallowing fear for each of these tests.
When my tests confirmed that I had Crohn’s Disease I was aghast and defeated. My mom and dad were horrified. As a child I knew someone with Crohn’s and her life was a disaster because of it. My husband, fortunately, was undaunted. He is a problem solver and, armed with a diagnosis, he set about to find a solution to what I thought of as an unsolvable problem. If you do a little research into the “Standard of Care” (SOC) for Crohn’s you will find that steroids and immunosuppressants are customary. If you look at outcomes for people who undergo the SOC treatments you will see that their outcomes are no better than avoiding medical treatment altogether – either way the patient ends up with her guts removed and an ostomy bag. Why suffer the side effects of all those drugs, why do that to your body if you are going to end up in the same place? It is a depressing reality.
My husband spent hours on the internet and found Dr. Chamberlin. This brave gastroenterologist is an independent thinker who was willing entertain the idea that if the SOC was failing the patient, maybe there was another solution. My husband encouraged me to call Dr. Chamberlin and, eventually (I am not brave), I did. I left a message with his office, expecting a call back from the staff, but remarkably, Dr. Chamberlin called me himself! Wow! And even more remarkably, he gave me his personal cell number and asked me to call later that evening so he could talk with my husband and me together. Wow again! Dr. Chamberlin could not have been kinder or more helpful. He gave up his personal time to explain Anti-MAP Antibiotic Therapy (AMAT) to us and followed up with emailed journal articles. Dr. Chamberlin does not assume that research articles are too hard for his patients to understand. Still, Dr. Chamberlin was 2000 miles away. He suggested I look for a doctor nearby, promising to help that doctor administer AMAT. I could not find any doctor anywhere within driving distance who would help me. No one was willing to risk managing my disease with a treatment outside the conventional SOC.
I liked what I heard about AMAT results and Dr. Chamberlin noted that my positive response to the short course of antibiotic/antimicrobial medication prescribed in the hospital was a good indicator that AMAT would help me, but after looking up the side effects from the specific antibiotics that Dr. Chamberlin uses, I was afraid. Some side effects were really weird. What if my eyeballs turned yellow and never returned to their normal color? To top it off, I had not flown since the disease had taken over my life. Traveling by car from the East coast to Montana was out of the question, I would have to fly. But what if I really needed to go to the bathroom when the pilot turned on the “fasten seatbelt” light? If you don’t suffer from a disease like this, it is probably hard to understand how limiting the disease is for patients and how convoluted your thinking becomes when you are worried about having an accident at any moment.
I was intrigued by the treatment and its potential, but I chose the status quo over the possibility of side effects from the AMAT drugs. The final straw came when, many months after first talking with Dr. Chamberlin, I went on my family’s annual ski week – it is my favorite event of the year, one I look forward to like a child looks forward to Christmas. It was depressing. I had no stamina. I had to stop to go to the bathroom. I even went in an outhouse at the top of the mountain. Yuck. It was time to act. I made the decision, bought the tickets and flew to Montana, where Dr. Chamberlin practiced at the time.
Dr. Chamberlin is an exceptional person. He is a thorough, careful physician and a gracious, kind man. It is against hospital rules for patients to leave the facility unaccompanied following any procedure requiring sedation. After my colonoscopy Dr. Chamberlin himself walked me across the street to where I was staying since he knew I was traveling alone! His tests confirmed the Crohn’s diagnosis and he prescribed a combination of three antibiotics (Clarithromycin, Levofloxacin and Rifampin.) His detailed explanations gave me confidence and I left his office with a cheerful outlook. Finally, I had hope. With my husband watching over me, I began AMAT.
Though I’ve swallowed a lot of allergy pills, NSAIDs and Imodium, I’d never had to stick to a specific medication regimen before. I was just learning to use a smartphone when I started AMAT and used an alarm on the phone to help me keep my meds on schedule. I guess I like technology more than I admit because that alarm kept me on track and made me love my phone!
Dr. Chamberlin warned me that after 3-4 weeks on the antibiotics I would feel like I had the flu for a month or so. That was a sign that the antibiotics were working and killing the Crohn’s-causing MAP infection. He was right about feeling bad, but it lasted closer to 4 months! This was a trying time because I was exhausted, working full time and I still had diarrhea – but the pain was fading. Plus, I’d made a commitment to the treatment when I flew 2000 miles to have a colonoscopy. I was going to stick to it!
Eventually I realized, “Oh, I do feel better, oh, I can do things!” My energy was slowly improving, I wasn’t falling asleep immediately on returning from work and, don’t tell my boss, I hadn’t fallen asleep at my desk for a while.
I am so pleased I didn’t quit. AMAT and Dr. Chamberlin have given me my life back. I am profoundly grateful to Dr. Chamberlin and to my husband who found him. After a year on the antibiotics I am becoming a real person who does things. When I started the treatment I hoped to be off it quickly, but now I don’t care if I have to stay on it forever. I am all but finished with the gut pain. Hear me, I am not in pain! I do have more bowel movements than most people (0-4 per day) and I am not finished with my rejuvenation. My daughter is dragging me to the gym to help me build strength and stamina. I am struggling to learn to eat right and more often. I am eating foods that I have not been able to tolerate for years, including a salad from a salad bar! My husband encourages me daily to do things but is empathetic when I am too tired. I can go where I want to go and do what I want to do with hardly a shadow of worry that I will have an accident. As a matter of fact, it is an improvement to actually want to go places and do things.
Life is sneaking back up on me.
I even went skiing and did not have to stop a single time to go to the bathroom!!!