Ok guys, this story has been written and waiting to be posted since before I started the blog… and I finally worked up the courage to share it with you. Enjoy….oh, and if you don’t like potty talk STOP READING NOW!
After I left the hospital in April of 2013, my health continued to deteriorate. I was unable to wean myself off of prednisone. Every time I lowered my dose by even one mg., I would experience terrible abdominal pain and cramping. I was in so much pain that I googled which was more painful, childbirth or a Crohn’s disease flare, because I was sure that I couldn’t feel much worse. I found a forum for mothers with IBD. Surprisingly, some of them said that a flare was worse than childbirth because it lasted longer and there was no prize at the end. I can’t tell you if that is true or not as I haven’t had a child yet, but needless to say, I was feeling pretty terrible. To make matters worse, my switch to the Autoimmune Protocol seemed to be yielding no results. I was having panic attacks and spontaneous bursts of rage for no apparent reason. At one point I made my husband come into a doctors appointment with me so that the doctor could tell him that I wasn’t really psychotic, my behavioral changes were side effects of my medication. She said that what I was experiencing was relatively tame in comparison with some of her patients who had called her hallucinating when they were on high doses of prednisone. One patient had even called her at 3:00 AM because they were seeing creatures crawling up the walls.
By the end of July I got to the point where I couldn’t leave the house without needing to go to the bathroom. URGENTLY. Countless mornings my husband and I headed out to work on the motorcycle and had to turn around two minutes later. I would run back down the steep driveway with the keys in my hand and sprint up the stairs. Sometimes I made it to the bathroom, and sometimes I didn’t. The stress of the situation seemed to trigger the problem, so I couldn’t just go before we left. I would be in and out of the bathroom four or five times in the morning and would get up at 5:00 hoping that if I had a few more minutes my system would kick everything out before I had to leave. We no longer had a social life because I was afraid to be more than 30 seconds from a bathroom. In retrospect I don’t know how I managed to keep working through this time.
One day, I had an appointment with my gastroenterologist at 11:00. My husband was working, so I told him “No problem.” I planned to take the bus to my appointment and have him pick me up whenever he was done. I was usually safe from bathroom emergencies after my morning debacle, and would only start having problems again around lunchtime. My doctor’s office was located in the business tower of a mall, so entertaining myself until he arrived would be no problem. Malls in Brazil are full of colorful spandex workout clothes and high-heeled shoes, two of my favorite things!!
I decided to take the “Selectivo” bus. You know how airplanes have first class seats? Well in Brazil there is a whole first class bus, with air-conditioning and foot-room. As an added bonus, it would leave me right at the door to the mall. While twice the price of the normal bus, the Selectivo was usually empty. This meant I would be able to sit down instead of standing up smashed between a billion people as I would normally do.
Once I got on the bus I thought, “I will be fine, I don’t even feel like going to the bathroom.” Famous last words. About fifteen minutes into the trip my tummy started to churn. I began looking out the window for the nearest stop to see if I would be able to walk to a bathroom. Unfortunately for me, I had no idea where I was. The area between my work and the doctor’s office was frequently on the news for drug wars and there didn’t seem to be a lot of people walking around in the street. It is a decidedly bad idea to get off the bus and start walking around in a sketchy neighborhood. My husband used to say “In the good neighborhoods they ask you who you are and then shoot you. In the bad neighborhoods they shoot you and then ask who you are.” I didn’t want to take the risk of getting off the bus in a dangerous neighborhood, especially without the guarantee that there would be a bathroom. I was even more hesitant to get off the bus because the next bus wouldn’t come for at least an hour and might not even stop if the driver didn’t like the look of me (remember I took the fancy expensive bus, well they are few and far between and won’t stop if they think you look shady). All that was left was too try and make it. Which I didn’t.
When it became clear that the only bathroom I was going to manage to use was my pants, I rudely put my bag on the seat next to me and prayed that the bus wouldn’t fill up. At this point, getting off the bus wasn’t going to help me any and I might as well wait until I got to the mall. I knew the location of the nearest restroom at the mall and wouldn’t have to catch another bus. I alternated between almost laughing and crying for the rest of the trip. I had never been in such an awkward, embarrassing situation in my life. I wondered if I was the only one who had gone through this trauma. I thought about what others would think if they knew, and remembered how important it is not to judge others without knowing their story.
It seemed like an eternal bus ride. The bus appeared to take the least direct route possible. People got on and off the bus, but lucky for me it remained fairly empty. When we finally reached our destination, I realized something that was going to make my exit even less subtle. These cool, rich-people buses don’t have a rear exit and I was sitting near the front of the bus. Everyone would have to pass me to get off. I casually pretended to gather my things until everyone had passed and then quickly stood up and tied my jacket around my waist, hobbling awkwardly past the driver. I was so relieved that I had decided to grab a jacket when I left the house in the morning! Once I got to the restroom, I locked myself into the separate handicapped bathroom and did the best clean up possible. I called E, crying out of humiliation and frustration. I felt like I was no longer in control of my own body. On the bright side, I was in the mall already and had an excellent excuse to buy a new pair of pants.
Now I can laugh about these days, (yes there are more stories just like this one) but at the time, I think it was the most humiliating and awkward period of my life… worse than having acne and braces. There is nothing worse than being an adult and feeling like you should be wearing a diaper because you have no control over your bodily functions.
Having IBD, (inflammatory bowel disease) you are already a bathroom ninja. You usually know where all the bathrooms are in a radius of about 500 meters of every place you go. During the five months that followed this incident I became a bathroom Super Hero. I knew where every single bathroom was everywhere in the world. On the walk from my work to my mother-in-laws house there were exactly 3 bathrooms I could stop at without buying anything. My purse contained a change of clothes, and wet wipes. I always wore black leggings, partly because they were discrete and partly because I was so skinny that they were the only pants that fit me anymore. Usually, my super powers worked and I made it to even the most random bathrooms. Restaurants are the best when they are busy, no one ever tells you to buy anything because they don’t know if you are eating there or not and they are usually clean(ish). Sometimes I had to run out during class when I was explaining English grammar to 40 teens. I would just leave without saying anything and come back as if nothing had happened. I am pretty sure they had no idea what was going on, but I am still so grateful that they ignored my disappearances and even reminded me of what I had been explaining when I returned.
After almost six months of this nightmare my doctor had me tested for C. Difficile. C. Difficile is a bacterial infection that only affects people with already compromised immune systems. It causes terrible diarrhea, weight loss, malnutrition and a host of other problems similar to those of IBD. In some cases it clears spontaneously, and in others requires hospitalization and can be deadly if left untreated. I tested positive, so not only had I been experiencing a Crohn’s disease flare, but my body had also been battling against a sometimes lethal bacteria for six months. Once I took the required antibiotics I suddenly had control over my bowels and could leave the house without being terrified. The bacteria is also probably why I wasn’t seeing improvement with my dietary changes. My Crohn’s symptoms also began to fade once I was treated. Sometimes I wonder if the reason C-Diff. didn’t land me in the hospital or worse is simply because I was eating such a nutrient dense, whole food diet.
OK….I told my embarrassing story, now you can tell me yours!