I’ve decided to take some time to share a story about my health that many of you haven’t heard. It's about my battle with ulcerative colitis, a diagnosis I've had since the age of 22. The reason I haven’t shared this in the past is because I was afraid it would look like I was complaining or asking for sympathy, which I’m not. Over the years, my battles with my health have actually taught me a lot of lessons, and THAT is the reason I want to share my story. My goal in sharing this is to get people to change the way they approach negative events in their lives, even if those negative things are beyond their control. This is going to be a long one, but I put in some photos to keep you amused.
In January 2010, I started PA school. When I walked into grad school I was a healthy, active 22 year old. This is one of the only photos I have of myself from PA school. I am smiling in this picture, but don’t let that fool you. PA school was probably one of the most stressful times in my life. In just 1 year, I had to learn everything about medicine: how to diagnose diseases, treat these problems, do procedures, examine a patient, etc.
One thing that many PA students had in common was that we were hypochondriacs. When we learned that headaches were a symptom of brain cancer, we all suddenly thought we had brain cancer any time we had a headache. In July 2010, we were learning about the gastrointestinal system. Sure enough, I started to develop abdominal cramping and frequent bowel movements, which soon turned to bloody diarrhea with about 15-20 bowel movements a day. Naturally, I ignored this and waited for it to get better on its own. However, it just got worse as the weeks passed by, so I went to the books to try and figure out what was going on. The top on my list was Giardia or some sort of bacterial/parasitic disease. I spend a lot of time outdoors, so that would make perfect sense. I didn’t understand why my body wasn’t fighting it off though. I then became a hypochondriac and diagnosed myself with ulcerative colitis, which is a condition similar to Crohns disease. I blew that off after a few days because there was no way I could have a chronic disease like that. I was just too young and too healthy. Young and healthy people don’t get sick, right? Right. That’s why I gave myself a final diagnosis of being a hypochondriac.
After waiting this out a few MONTHS, I decided I really needed to see a doctor. The cramping was so bad, and I had to run to the bathroom all the time during the day and at night. It was so embarrassing that I would only use the one bathroom in the building that was just in its own room as opposed to multiple stalls. I needed my privacy, and I needed it bad. I would literally just sit in there cringing in pain until it went away after a few minutes (minutes go by REALLY slow when you’re in pain).
I finally went to an urgent care in the area since I didn’t have a primary care physician in New Hampshire. I told them my story, and they did many tests, including a digital rectal exam which showed that I did have blood in my stool. Well, I could have told you that. They weren’t sure what to do with me, so they put me on ciprofloxacin (an antibiotic) for a possible gastrointestinal infection. I got to experience the joy of collecting my own stool sample, which came back negative for Giardia, Cryptosporidium, and bacteria like E. coli. Okay, so I didn’t have an infection, and that would explain why the Cipro didn’t work.
The next thing they set me up for was a colonoscopy. A colonoscopy is a procedure where they use a small camera and insert it in your rectum to look at your large intestine (colon) for any disease. Most people get a colonoscopy every 10 years starting at age 50 to screen for colon cancer.
I was not excited for a colonoscopy. Sure, I didn’t want anybody sticking a tube up my butt, but even worse than that was the prep. In order for them to see anything in your colon, you have to clean out your entire system. You start by eating a clear liquid diet, and then you proceed to drink about a half gallon of laxatives. They are nice and let you choose what flavor you want. I remember oh so distinctly that I picked the orange flavor, and I gagged any time I ate anything orange flavored for a month after. After chugging the laxatives, I vomited about half of it up. Then the seal broke on the other end. I will spare you the details, but let’s just say I stayed very close to the bathroom that night, and I was DEFINITELY cleaned out by the morning.
The next day was fine. I went in to the hospital, and the only thing that really bothered me was that I wasn’t allowed to drink any water before going under anesthesia. They brought me into the freezing cold endoscopy suite, put me under, and I woke up in the recovery room with some water and crackers waiting for me. My doctor did biopsies (tissue samples) of my colon, and it turns out I had a severe case of ulcerative colitis. He immediately put me on two medications, prednisone and Lialda, and I started to get better.
So what IS ulcerative colitis?
Well, let’s break it down. An ulcer is a wound, like a canker sore. “Col-” refers to the colon, or large intestine, and “-itis” means inflammation. So ulcerative colitis is an inflammation of the lining of your large intestine that is accompanied by bleeding ulcers. It is a disease that usually presents itself for the first time when a patient is in their twenties, and it has periods of flares and remissions. Flares usually consist of abdominal cramping which is usually relieved by having a bowel movement. Ulcerative colitis is different from Crohns in that ulcerative colitis affects just the colon, while Crohns affects the entire GI tract.
This is a typical flare for me: I will get abdominal cramping which prompts me to go to the bathroom. I have a bowel movement, and barely anything comes out, just some blood and mucus. But I continue to sit on the toilet for a few minutes until the pain goes away. Most of my symptoms happen at night which is nice in a way because it means I can function at school and work during the day. Unfortunately, it also means I am completely exhausted at work because I get out of bed 10 to 15 times a night. That’s multiple times an hour, and I sometimes do that for over a month straight. Combine that with fatigue from the anemia from all the blood loss, and you have one tired person. I remember the days where I would work, go home and immediately fall asleep, wake up all night, get up for work, and repeat. I was barely functioning and it was miserable.
ANYTHING could set off cramping. Food was the biggest culprit. Anytime food touched my mouth, I would cramp up. So I would just stop eating because it wasn’t worth the pain. Unfortunately other things set it off too. Drinking water aggravated it, but you can only go thirsty for so long. My strategy was to have a water bottle in the bathroom so I could just chug water while I was sitting on the toilet in pain anyway. Another thing that set off cramping was THINKING about or smelling food. I’m not even kidding. It was awful. Sometimes when I’m in the car during a flare when someone is eating, I will get awful cramps, and I will just sit there tensed up until it goes away. Another major thing that aggravates cramping is turning over in bed. That’s really irritating. I could have just come back from the bathroom, lie down, and then change sides I was sleeping on, and I’d have to run to the bathroom again.
Nobody is really sure what sets off flares. Some say stress can play a part, and I have definitely noticed that stress plays a role in mine. Since it affects the gut, you would think that food plays a part as well. However, research studies show that food has no part in causing flares, although it can affect your symptoms when you are having a flare. I am still skeptical about this and am trying to figure out the role of food in this disease.
Ulcerative colitis is classified as an autoimmune disease, meaning my body sees my colon as a foreign invader and attacks itself. In other words, I have an overactive immune system. Therefore, there may be a component to this disease that I can’t control.
Colitis can be graded based on its severity in how badly it affects the tissue (mild, moderate, severe). It is also classified based on how much of the colon it affects. Some people only get UC (ulcerative colitis) flares in one part of their intestine. I have severe pancolitis, which means it affects every part of my intestine. Awesome.
How do you treat ulcerative colitis?
There are two ways to treat ulcerative colitis. First and foremost, you need to stop the flare. This is usually done with a medication called prednisone. Prednisone is the worst drug ever (in my opinion) and has awful side effects, but sometimes it is the only thing that will get you out of a flare. Prednisone is a potent anti inflammatory that also helps calm down your immune system from attacking itself. Prednisone has short-term side effects and long-term side effects. The side effects that I get immediately from prednisone are insomnia and irritability. When I say insomnia, I mean INSOMNIA. I could be so tired from anemia and not sleeping, but I will still spend all night looking at the ceiling trying to fall asleep. So now I’m not waking up from the flare anymore, but I still can’t sleep. It is pretty awful. Usually I get annoyed with the insomnia around two or three o’clock so I’ll get up and either sit in a warm bath to relax or get some work done on my computer.
Prednisone also makes me very irritable. I am usually pretty laid back, but it is so easy to snap at people when they barely annoy me. I can also be very emotional and cry just from looking at a puppy or something.
When you are on prednisone for over a month, you start to get other side effects. It can weaken your immune system and make you more prone to infections. It also causes weight gain, particularly in the face, creating the classic “moon face.” In addition to that, it stimulates fat storage, muscle loss, and weakens tendons. This becomes very frustrating for me when I’m trying to stay in shape. I also get awful heartburn on prednisone. It can also cause osteoporosis, raise your blood sugars, and cause diabetes. I could go on forever about side effects of prednisone.
One stinky thing about prednisone is that once you get out of your flare, you can’t just stop the prednisone cold turkey. It’s something that has to be tapered down gradually to avoid going into adrenal crisis. I hate prednisone.
Okay, enough about prednisone. What other drugs are there?
Ideally, you want to prevent flares from happening in the first place. There are medications out there that can help prevent flares. Instead of listing them all right now, I’m going to start telling you my journey and bring them up along the way.
So after my first flare, I went on a six week taper of prednisone. The prednisone kicked in within a few days which was great. I was also put on another medication called Lialda which coats the lining of your intestine and helps prevent flares. I had to take four giant horse pills a day, which really annoyed me, especially once I got back to normal again. I also didn’t like having to pay $15 a month for it because I was too cheap for that. In hindsight, that is not much money at all. While on prednisone, I went on a three week road trip out to the Canadian Rockies, as you can see from this photo.
I had a great time on this trip, but I was still recovering from my flare. Imagine wiping your butt with toilet paper 10-15 times a day for two months, having unbelievable soreness, and then going on 10 mile hikes every day. It’s not comfortable, and every step was misery for me on this trip. BUT, my flare was gone! Unfortunately, I ran into some issues with tendonitis in my knee which also made the hiking difficult. I blamed that on the prednisone since it can weaken your tendons.
After four months of being on Lialda, I didn’t get any more flares and was feeling great. I was hiking, staying active, and living my life.
Since I was feeling so great, I decided to stop taking my medication. Just a few months later, I got my second flare. I had to go back on prednisone, and I started taking Lialda again. BUT, instead of taking 4 tabs, I only took 2 a day because I was cheap and also didn’t want to be putting drugs in my system. This was in March.
A month later, something awesome happened. I just found out that I won a contest to do a dream climb up the Grand Teton in Wyoming. I had sent in a video, and they chose mine as the one that deserved the climb the most. Not only did I win a trip out to Wyoming, but I also got an entire wardrobe of gear from Marmot and had a training program designed for me from Mountain Athlete.
The training program included rigorous workouts to help get me in better shape. In addition, I had to follow a special diet. I could not eat any carbs, but I could eat all the fruits, veggies, nuts, and meat that I wanted. I was excited to do this so that I could see if this diet prevented any flares.
Unfortunately, I got another flare just weeks before our scheduled climb. I was back on 4 tabs of Lialda a day and 60mg of prednisone. That’s a lot of prednisone, and my body was starting to get resistant to it. I continued to do my vigorous training, only to get tendonitis in my knee again. Grrrrrr!
I was not feeling good at all when we left for the Tetons. The night before our flight, I came down with a fever and chills. I still had cramping and was still bleeding. This made me nervous because it was making me weaker. And since I’d be hiking at almost 14,000 feet of elevation, I needed all the blood, oxygen, and energy I could get. We were supposed to go out to dinner with our guide the night our flight came in. The flight got delayed. I was happy about this because I wasn’t eating anything, and I knew I’d have to force something down if we went out to eat with company. I still remember sleeping in the airport in Dallas curled up in a ball in pain across from the bathroom. And I remember using the bathroom in our hotel very frequently.
We did our climb up the Grand Teton and made it! I was exhausted from the anemia, the lack of oxygen in the air, the physical demands, the lack of sleep, and my deteriorating muscle mass from the prednisone. However, that wasn’t the worst part of the climb. When camping above treeline, we cannot just go to the bathroom anywhere, or else the mountain would look and smell like a sewage plant. We each had our own “poop bag” that we had to poop in and carry back down the mountain. Awesome. I think I got screwed on that one. After our successful climb, we headed back down. The tendonitis in my knee was acting up again, but I was able to limp my way back. Here I am on the summit of the Grand Teton in July 2011:
A few months passed by, and I was doing okay. Then, in September, I had a “mini-flare” which got set off when I took ibuprofen for back pain. This went away after 3-4 days when I stopped the ibuprofen. It was scary to me though seeing how easy it was to set off a flare.
That winter, I was doing well. I visited my friend out in Phoenix and had a great adventure. Life is good!
After I got back from that, I started my first job as a PA. This was a stressful time for me, so of course I got another flare. This was a pretty bad one, and it lasted about 3 months. It took 5 weeks just for the mega dose of prednisone to kick in. I experimented with my diet again. I was barely eating anything anyway, but when I did eat, all I ate were rice products (rice, Rice Krispies, rice cakes), peanut butter, Lactaid, chicken, and chicken broth. This brought my cramping down from a 9/10 to a 6/10. I had my second colonoscopy at this time which showed chronic active colitis, which I kind of already knew. My doctor tried convincing me to go on harsher medications, but I refused.
I went about 5 months without another flare, and then I got my worst flare yet. My body was not responding to prednisone anymore. I had to give in and start the new medication called 6MP. I was terrified to start taking this. 6MP is an immunosuppressant, which prevents my immune system from attacking itself. However, that also means my immune system will be weaker, and I will be more susceptible to infections. I had to get a pneumonia vaccine, and I can no longer get live vaccines because the vaccine could actually give me that illness that it’s intended to prevent.
The first thing my GI doc asked me before putting me on this medication was, “Do you plan on having kids any time soon?” I said no. If I had said yes, I could not take it because it is a category D medication, meaning it can cause birth defects. 6MP is also used to treat leukemia. This terrified me because I now felt like a cancer patient. To make matters worse, there is a black box warning that says there is a rare chance that people taking this medication could develop a rare form of lymphoma that is almost always fatal. It can also lower your white blood cell count, harm your liver, and cause pancreatitis. Who would want to put this drug in their body!? Only desperate people.
I started 6MP three weeks into my flare after I realized prednisone wasn’t doing anything for me. Unfortunately, it takes 4-6 weeks to get the full benefit from 6MP, so I had to wait it out. I did not eat at all. In 1 month, I lost 15 pounds. In a 12 day stretch, I had a total of 139 bowel movements. Now imagine that going on for 3 months. Once I started eating again, I was eating ravenously. That is another side effect of prednisone – increased hunger. I ended up gaining 30 pounds.
This is a photo of me in Lake Placid while I was having a flare. Notice how loose my jeans are. We hiked Mount Marcy, the highest point in New York, and I was SLOW because my body was so exhausted and I had tendonitis in my foot (here we go with the tendonitis again). I still wasn’t eating much at this point. I remember going out to one of the local bars and just sitting there drinking water because my body would not tolerate alcohol. I asked the bartender if the kitchen could make me a baked potato, and they did! That was the best dinner I had for a while. I also remember going to a work conference at this time and being upset that I couldn’t eat any of the free food.
Now look at the change in my face from the prednisone. This is the classic “moon face.”
I eventually got over this bad flare. However, a few months later, I was waking up sick every morning and dry heaving. My doctor did labs and found out that my white blood cell count was critically low, I was anemic, and my liver function tests were abnormal. These were all a result from the 6MP, so I had to stop it for a week. After just 2 days of being off it, I got another flare. I went back on the 6MP at half the dose, and was better after 2 weeks of prednisone. Phew.
Over the next few months, my fatigue kept getting worse and worse. I had labs done which showed I was very iron deficient. I had a hemoglobin of 8 (normal is 12-16), a transferrin saturation of 5% (normal is 15-45%), and a ferritin of 8 (normal is 20-150). I was so exhausted, I could not function. Since my gut doesn’t absorb oral iron very well, I had to get an iron infusion in the hospital at the highest dose. This kicked in in a few weeks, and I started to feel much better. After my first iron infusion, I had plans to go canoeing with some friends. I was almost late because the infusion took so long (about two and a half hours). I remember my hand being sore from the IV while I was paddling, but I needed to stay active so I didn’t fall apart.
That summer, we had an awesome veggie garden. I ate veggies all the time, and they were delicious. Unfortunately, I learned that my gut can’t handle that much fiber, and I got another flare. I dealt with this flare for a month and a half before increasing my 6MP again.
The flare ended, and life was good again. This is me on Mount Katahdin, flare free.
Then fall came around. I got another flare and was on prednisone for 2.5 months. And this is what happened:
Eventually I got better. I had my third colonoscopy in November 2013, and it showed improving colits, which made me super happy.
Unfortunately, January 2014 came around and my liver function was deteriorating again. I had to stop the 6MP which set off another flare. I was leaving for Africa in 2 weeks to climb Mount Kilimanjaro (19,341 feet), and it killed me to have to deal with this again. I was now on 80mg of prednisone (not recommended by my doctor because it’s so high, but I had to do something), and that BARELY did anything. BUT, it worked, and I was able to taper off of it by the first few days of our trip.
Despite being extremely cautious, I developed traveler’s diarrhea in Africa. No surprise there. Unfortunately, this infection set off a flare again. My first day of traveler’s diarrhea was the first day of our Kilimanjaro climb, and I felt AWFUL. I was so afraid I wouldn’t make it to the summit because I was going to be so weak and dehydrated. Luckily, Immodium kept the water loss to a minimum. I had to start on prednisone again, but there is a good twist to this.
- In addition to my flare, I was also having issues with my asthma because of the elevation and lack of oxygen in the air. My inhaler didn’t help much, and it actually made me feel worse because it made my heart race even more than it already was. Prednisone can be used for asthma exacerbations, so I was able to kill two birds with one stone by taking it.
- We were at risk for altitude sickness on our climb. The treatment for altitude sickness is steroids (which is what prednisone is). So by taking prednisone for my asthma and colitis, I was also preventing myself from getting altitude sickness. While I was laying awake from the insomnia from the prednisone, I listened to two people in our party vomiting from the altitude. Because of the prednisone I was able to see these views that others with altitude sickness couldn’t make it to:
And of course I made it to the summit of Mount Kilimanjaro, the highest mountain in Africa. Yet another summit checked off while having a flare.
After returning from Africa, I developed a horrible fever. It was 103 degrees for two days, and I could not get out of bed. This made me very nervous since I had a weakened immune system. The hypochondriac in me diagnosed me with malaria, African Sleeping Sickness, and various other diseases. Most likely I got a viral illness from somebody on the plane, but man did I think I had malaria. I have had flu-like illnesses before, and that one was the worst one I ever had.
After returning from Africa, I decided the 6MP wasn’t working. If I was on a high dose, I didn’t get flares, but my labs would get out of whack. If I was on a low dose, my labs would be fine, but I’d get a flare. I now had to move onto the next step: Humira. Humira is another immunosuppressant. It is an injection that I give myself in my stomach once every other week. The first month, I had to do a loading dose of 4 injections followed by 2 injections two weeks later. This first month of Humira cost my insurance $10,000! And I thought the $15 copay from the Lialda was bad!
I tried the Humira without the 6MP, but I still had flare symptoms. So now I’m taking Humira and a low dose of 6MP. This still did not have my flares under control, but the flares were milder than what they used to be. I decided to deal with this since I only have two more treatment options:
- An IV treatment called Remicade
- Surgery to remove my colon. By removing my colon, I will cure my ulcerative colitis. However, with the surgery, I have to have an external “poop bag” for 3 month while my intestines heal. Once that gets reversed, I will be “normal” again, but I will likely have diarrhea for the rest of my life. The colon’s job is to absorb water, so if it’s not there to absorb anything, that water will be going right through me. I am trying to avoid surgery at all costs.
At this point in time, I am trying to find a natural way to treat my ulcerative colitis. I am trying to explore the role of food in inflammation and flares. I started by getting food sensitivity testing, which came back completely negative except for coffee which I don’t drink.
Even though I wasn’t sensitive to lactose, I did switch from cow’s milk to almond milk. I didn’t notice a difference until I started drinking milk and eating ice cream again and noticing a worsening in my symptoms. From there I decided to cut out white flour and white sugar, which may be feeding the bad bacteria in my gut. I also started juicing, which allowed me to get the antioxidants and nutrients from fruits/veggies without getting all the fiber that aggravates my system. I am also experimenting with intermittent fasting to give my gut a break, but I have trouble with self control on that one.
Over the past few months, I have had a steady decline in my energy levels. By the end of August I hit a wall, and I could fall asleep at any time if I put my head down. I slept for 18 hours one weekend day, and I was still exhausted all day. This prompted me to get iron testing again, which came back low. It was low enough to need the maximum infusion dose again. At this point, I was less than two weeks away from my trip to climb Mount Elbrus, the highest mountain in Europe. I needed to get my iron levels up before this trip. Iron is an important component of hemoglobin, which is responsible for carrying oxygen around your body. Despite working out, I was now at the point where I was getting out of breath just walking up the stairs. Not good. How am I going to climb this 18,000 foot mountain if I can’t even walk up a flight of stairs at sea level!?
Just one week before my climb, I finally got my iron infusion. It can take 1-2 months to fully kick in, but at least I wouldn’t get worse.
This iron infusion actually kicked in pretty quickly, and I successfully summitted Mount Elbrus (18,510 feet). This is a photo of me turning into an icicle:
And of course a summit photo (18,510 feet):
So what life lessons have you learned, Sarah?
Just because I’m smiling in my photos and doing awesome things doesn’t mean I’m not struggling inside. I am very against taking medication, and I sometimes feel like a failure for having to depend on them. I don’t even take pain medication. If you look in my hiking first aid kit, I have ibuprofen, which I don’t even carry for myself (it causes flares). I carry it for if other people need it. If I’m in pain, I treat it by taking a hot bath. Sometimes during flares I will take a hot bath every single day for a few weeks. It is so therapeutic for me. But I will never take pain meds.
So here I am, feeling like a failure. I take care of myself as best as I can. I work out. I do my best to eat healthy. So why am I the one getting sick while other people my age are out drinking every weekend, watching TV, and eating junk food?
- Lesson #1: Life isn’t fair.
- Some people have good genes and can get away with doing a lot to their body. But remember, it will catch up to them eventually.
- Lesson #2: Never judge a book by its cover.
- I never post negative things on Facebook or the internet, but I still have my struggles. You might look at all my positive posts and photos and say, “Wow, she’s got it good!” And yes, I do have it good, but not as good as you may think.
- Lesson #3: Everybody has their struggles.
- This one really helps me get through when I’m feeling down, and being a healthcare provider really helps me see this.
- While I am struggling through a flare, somebody else is struggling with the loss of a loved one, somebody else just had a tragic car accident, and another one is living with an abusive spouse. We all suffer one way or another.
- Lesson #4: Somebody always has it worse than you.
- Look at the person with Crohns disease who has been through seven surgeries and has pain every single day of his life. Crohns is not curable like ulcerative colitis, so that patient is going to be dealing with this for the rest of his life.
- Or the person who passed out while getting blood drawn, fell the wrong way, and is now paralyzed from the neck down.
- And how about the woman whose husband got killed by a drunk driver? I guess I really don’t have it that bad.
- Lesson #5: When you’re feeling down, focus on the positives, not the negatives.
- I have a good job, a comfortable house, and hot water for my baths every day.
- I have a family that will be there for me any time I call.
- I have amazing friends who care about me. I have one in particular, Dale, who has worked with me on my diet and has changed my life. He cooks with me and teaches me how to eat better. Not only that, but he does it WITH me so I don’t have to go through it on my own. He has even taken the time to ask many of his friends for their advice on my case, anyone from the local Penobscot Indians to people across the country that he knew in the UFC. I have not had a flare since starting my new diet, and I will soon be posting some of my favorite recipes. Thank you Dale.
- Lesson #6: Live your life to the fullest, even when you can’t get yourself out of bed.
- Lesson #7: Don’t ever put yourself down or call yourself a failure. Just keep swimming and try something different next time. You will get through it!
My battle with ulcerative colitis has been a blessing in disguise for me. It has forced me to live a healthier lifestyle, and I feel GREAT! It has taught me who my true friends are. The people who had faith in me and supported me through my worst times will always have a special place in my heart. Lastly, this disease has taught me to life my life to the fullest and enjoy every minute I can because life is too short to dwell on the negatives.
I hope everybody who reads this learns something from my story. Don’t dwell on the negatives. Be appreciative of what you have. And please, take care of your body and mind. You won’t regret it :).