The story below details the process over the last three years of dealing with the ups and downs of dealing with Ulcerative Colitis: meeting with doctors, trying new medications, altering medication dosages, and making life-altering decisions.
Note: The information below is extremely detailed, but it may also prove helpful for those exploring their own digestive diagnoses.
My story starts in July of 2011. I was supposed to be going on our first family vacation in over four years with my parents and two sisters to the Duck, NC in the Outer Banks but instead I was sitting at home for my only week off of work in the summer waiting to have a colonoscopy.
I had been having trouble throughout the month with bloody stool and on bad days was going to the bathroom 15-20 times. I was unable to go to work or leave the house on most days. After a few weeks of this, my dad convinced me to call the doctors and I was referred to Doctor Office #1. I went in and had my initial meeting to discuss the problems I was having.
At this point, I had not spent much time researching what my problems may be caused by or what the big picture diagnosis from the doctor might be. After the initial 30 minute walk-through of everything with the nurse and doctor, they informed me that I needed to schedule a colonoscopy later in the week. They explained that this procedure would allow them to see (internally) what was going on in my digestive track.
I was pretty upset that 1. instead of going to the beach or 2. relaxing for a week at home, I would have to go through the procedure “prep” and colonoscopy as my big summer break. I made it through the simple procedure without any issues and discussed what Doctor #1 found. They diagnosed me with Crohn’s-Colitis, which I did not know anything about. They prescribed me Asacol HD, which I would begin taking 800mg, three times a day with each meal. I was also given Rowesa to use in the event that I was in a flare up and it would be able to bring inflammation down in conjunction with the Asacol.
After the procedure and week vacation, I saw some signs of improvement with the Asacol and Rowesa whenever a flare up would occur. I started to do my own research on the diagnosed disease and started to put together a list of foods that more often than not caused problems (flare ups). It seemed as though coffee, fatty foods, foods with a lot of grease, and red meats triggered the worst symptoms. That’s not to say I didn’t eat these foods from time to time or didn’t have a problem after eating a steak occasionally, but these items seemed to greatly increase the chances of having a bad day or causing a brief flare up.
For the next two year, August 2011 through August 2013, I became accustomed to the daily routine:
- Wake up earlier than I need to
- Have 4+ bad bathroom trips as soon as I get up
- Take my 800mg of Asacol HD
- Hope that I am feeling good enough to make the 20 minute drive to work without any problems
Every couple of months throughout this two year period I would have flare ups that might last a day, a couple of days, or in the worst case scenario, a week. When I was having a bad week, I would call Doctor #1 and see if there was anything else I could change or modify because I was in a bad flareup. The standard process became: “Keep taking Asacol…. Use the Rowesa if possible…. and we would like you to get more bloodwork and a CT scan of your abdomen.” I would go to the local lab, get the bloodwork done, and have the expensive CT scan completed. Each time, Doctor #1 would call back a few days later and say that all the results came back fine and nothing raised a red flag or was out of normal levels that they wanted to see.
Throughout these two years I became accustomed to the daily routine laid out above and unfortunately: consistently canceling or avoiding scenarios where I would not be able to immediately run the the bathroom if need be. This took a big hit on my ability to go to work, travel for work, hang out with friends, or have any confidence in leaving the house to do anything. Whenever a daily or weekly flareup would be going on, I needed to be within 30 seconds of a bathroom and shut down all social aspects of my life. I could see how it was not only affecting me but my friends and family, and I didn’t know what to do. I was not happy missing out on things, but in my mind at this time there were no other options. Doctor #1 was giving me guidance and medication that at times worked somewhat.
Looking back on this situation is tough because in my mind it seems as though Doctor #1 was just trying to maintain the current medical situation for two years instead of actually trying to diagnose the problem and then fix it via medication or other means. I just became accustomed to “This is how my life is and this is what I deal with day in, day out.” I accepted it.
The next phase of my story started in September 2013. I was still taking Asacol HD and having the typical good (10-20 normal bathroom trips) and bad (10-20 bloody stool bathroom trips) days. In the beginning of the month, I was finally home from travelling for the majority of August and was able to enjoy the last bits of Summer left in Pittsburgh. My fiance, Emily and I decided that we wanted to start eating healthier and try some new diet tips in preparation for our wedding in May. We tried eating more fish, lean meats, fruits, veggies, and bread products with flax seed and other multi-grain bases.
I am not sure if anything with the diet changes had a link to the issues in September but approximately a week after we made these healthy diet changes, I had what I assumed was going to be a day or two flareup. Unfortunately the one to two day flareup turned into a week-long problem and then two weeks, at which point I decided to call Doctor #1. This multi-week flareup included typical symptoms as any other flareup that I had had previously: 1-20+ bathroom trips a day, a lot of bloody stool, Rowesa was not helping out at night, and I was not leaving the house for work, family, or friends.
I got a doctor appointment on Tuesday September 24th, 2013 with a new Doctor in the same office as Doctor #1, who specialized in working with and treating patients with Crohn’s disease. I went through the high level discussion of my symptoms and history of diagnosis with Doctor #1 and my colonoscopy back in July of 2011. The new doctor put some new medications that I could try in conjunction with the Asacol which was shown to help patients with different IBD diseases. I was started on the prednisone steroid that day (40mg, once a day) to help my body calm down and hopefully allow the Asacol and new medication Humira to work. The doctor spoke about Humira, which was a shot I would be able to administer to myself after the initial dose in the doctor’s office.
I returned to Doctor #1 a few days later to receive my initial dose of Humira. The nurse had me watch the intro video, and I received the initial 4 shot dose of Humira. The next induction dose would be in two weeks, so I waited to see if anything would be different in mean time.
- Still taking Asacol HD: 800mg three times a day
- Prednisone: 40mg, once a day
- Humira Injection Dose 1 complete, waiting on Dose 2 in 14 days
I did not see much if any improvement during the two week period between Humira dose #1 and dose #2, but the doctor said it needed to be built up on my system during these first two doses before we would hopefully see signs of it helping with my symptoms.
Doctor #1 also wanted me to start tapering off of the prednisone, bumping down 5mg every 5 days because they did not want me to be on this steroid for too long. I noticed that as I got to about 25mg per day that my symptoms were getting a bit worse. I called Doctor #1 back and she said to bump the steroid back up for at least the week after my second round of Humira.
I made it to Day 14 and was able to successfully complete the dose, second round of 2 shots of Humira. Since there is never a good time to be in a flare up, I was of course traveling for work the day after the Humira round 2 shots, and the medication showed no signs of helping my flareup symptoms subside. The entire week was a struggle to get through meetings with frequently running to the bathroom. Humira did not show any sign of helping.
At this stage in the process, I was researching more and more online about Humira and different medications that other people had used and doctors had prescribed for people with Crohn’s disease or the other IBD diseases. I had a lot of questions and thoughts that I was constantly thinking about and talking to my parents and fiance about:
- Why is this new drug Humira not showing any signs of improvement?
- What other drug options might be available to try?
- Frustration had set in at an all time high with Doctor #1 because it was the maintain vs fix/heal approach to my treatment
- Are there other doctors that I could go to for a second opinion for not only my treatment but my Crohn’s diagnosis?
My parents and I found some information about another doctor’s office in Pittsburgh that specifically worked with patients with the different IBD diseases. I called this office and scheduled a meeting with Doctor #2 and was fortunately able to get an appointment only a few days away to discuss my ongoing problems.
I met with Doctor #2 and went through my entire 2-2.5 year history of problems, medication, and the more recent month long flareup. Based on my explanation of health problems and medication history Doctor #2 my disease sounded more like Ulcerative Colitis, and then unfortunately the main medication that I had been taking for the last 2+ years (Asacol HD) was probably not helping in any way with my symptoms. Because it had been more than two years since my last colonoscopy, Doctor #2 wanted to me to have the procedure within the next few days since my symptoms had been bad for this extended period of time.
Doctor #2 performed the routine procedure, and I made it to the recovery room with my parents and fiance. Doctor #2 walked through a packet of information from the procedure and explained to us that the lower 40cm of my colon showed moderate-severe signs of inflammation and disease. At this point Doctor #2 diagnosed me with Ulcerative Colitis.
I was admitted to the hospital because I had been in a flareup for more than a month and a half and needed additional treatment. For the next 5 days, I received high doses of prednisone, had blood taken constantly throughout the day and night, and met with 7+ doctors to discuss how I was feeling.
Doctor #2 discussed that there were two paths that I could take at this point:
- Remicade: a drug similar to Humira that is administered through an IV
- Surgery: multiple options that would remove parts/the entire colon
After a lot of discussion with my parents and Emily, we all thought it was best to try the next drug up to bat: Remicade. I received my first induction dose (5mg/kg) on Sunday and was finally able to leave the hospital on Monday afternoon.
I had 14 days in between the first and second induction doses and not much changed in terms of the day-to-day routine. I had to wake up two to three hours before I planned on leaving for work to deal with 4+ bathroom trips and letting the Prednisone kick in to calm things down for the day. I was not seeing many signs of the Remicade changing anything, but since it was just the first dose I didn’t want to jump to any conclusions on whether or not it was going to work.
I made it to my birthday and–lucky me–got to head off to the hospital for my second induction dose of Remicade. The two hour infusion was over with, and I headed home to try to and enjoy a portion of the day. In between the second and third induction doses was a bit longer of a span: 4 weeks.
Over the course of the rest of November I continued to be in the same situations: getting up too early for work, not being able to sleep in on the weekends, constantly missing out on hanging out with friends and family, and just overall not being able to live my life.
Thanksgiving: my favorite holiday of the year and UC was unfortunately canceling my family plans to travel out of state to enjoy the holiday with the rest of family. Throughout this month I started to do a lot of internet research on what other potential treatment options there were and the only thing left was surgery.
I decided to call Doctor #2 back because I was getting frustrated with the lack of anything changing day to day and only 1 induction dose of Remicade left. I went in to meet with Doctor #2 and she provided contact information for Doctor #3 who would be able to discuss surgery options for me. While I wanted an additional two weeks until the next appointment came up, I continued to have the same issues and was getting more and more anxious to find out what the next step in the process was.
Friday December 6, 2013
I met with Doctor #3 with my dad and Emily. I was trying to stay calm going into the appointment. I went through the usual background info discussion and was then given the process for how surgery would go:
Surgery #1: remove the entire colon and have a temporary ileostomy bag (via stoma) put in place.
Surgery #2: Create a j pouch and wait at least 3 months until surgery #3
Surgery #3: Reconnect the stoma to the j pouch
Going into the appointment, I knew that surgery was more than likely since the Remicade was not showing any signs of working. It was another thing to walk out of the hospital with a date on the calendar, in less than 2 weeks, knowing that I was having surgery to alter my body and things wouldn’t be the same way for me again.
I had some relief that there was a defined schedule, but at the same time, as the two week moved along, I became more anxious about how things were going to change in my personal life, wondering how much pain I would be in once I woke up from the surgery, and hoping that I could recover as quickly as possible and finally get my life back after almost three years of battling daily issues.
Although I knew things would not be the same from here on out, I knew that my current normal situation of missing out on a lot of things with friends and family, not feeling comfortable in a lot of situations outside of the house, and not being able to exercise was going to be over.
I would have a new normal situation for the one to two years in between surgeries that had its drawbacks but would hopefully be a step up from the previous normal. I would finally be able to feel confident about leaving the house and not “looking for the next bathroom”, be able to run with Emily and our dog, and enjoy going out to a restaurant and travelling.
Blog posts will detail my thoughts and stories through my surgeries, recovery, and ultimately my new normal life of exercising, healthy eating, and travelling.