Along the Journey of Crohn’s
Guest Post by Erica Baker
I don’t know where to begin.
It has been suggested to me many times that I write down the story of my journey through college, getting a grown up job, getting married, having a baby and oh, yeah having Crohn’s disease. I am not truly sure where to begin with this story, so I will begin at the beginning and go to the end, though I know it will not be straight through, as no good story goes straight from beginning to end.
College can be a trying time for anyone. Moving away from home, dining hall food, partying, and stress from an insane course load is enough to cause anyone a little digestive distress; especially someone who has food allergies, such as me. I spent four years trying to figure out where the “hidden” bathrooms were in each of my academic and resident buildings to ensure no one knew it was me getting “sick” and stinking up everything.
Luckily for me, I was in the college of engineering and there were nearly no girls so the ladies room was a safe haven for me and stressed out stomach. In college it was easy to hide the illness I didn’t have a name for yet. Claiming stress, dining hall food, hangovers, food allergies, someone else, and the smelly apartment trash were easy ways for me to hide my symptoms. I assumed I was the only person dealing with the pain, and embarrassment that was my stomach. I was able to hide this from everyone. Except my mother.
Of everyone who would know when something was wrong, a mother would know. She was able to see the signs and symptoms of my Crohn’s disease. Somewhere during my college career, I don’t remember exactly when, my own mother was diagnosed with Crohn’s. She was not the typical Crohn’s patient profile, being that she already had one child out of college and one child in college.
My mom ended up at the hospital for several days with terrible stomach pains and getting sick constantly. They began checking everything, kidney stones, gallbladder, appendix, liver function, and finally, her intestines. Luckily for her they discovered her Crohn’s and were able to treat it. There is no cure for Crohn’s, so they were able to treat all of her symptoms and get her on a management plan. Now, years later she is doing much better and is on a very simple treatment to control her Crohn’s disease and manage her symptoms.
But as mothers are, she knew that I was sick and needed to be checked by a doctor. I on the other hand was stubborn and foolish and refused to do anything to help myself. I, like many young people, assumed my mother had no idea what she was talking about and continued blaming my symptoms on everything besides me.
Symptoms aside, college was an amazing time for me, but it was all coming to a close. Graduation day had finally arrived and I was ready to take on the world. With my degree in tow I moved to Alabama to start my first big girl job as an engineer. I was officially starting my adult life. It was also time to start taking better care of myself. I began doing research about my food allergies, which turned out to be an amino acid intolerance. I had finally found a study done by the National Headache Institute that provided me with a list of foods to eat, not eat and that might be okay for me. The migraines, a result of the intolerance, began to decrease and nearly disappeared.
But the stomach symptoms were still there. I figured with no more stress of school, no more dining hall food, no more frat parties, no roommates to be embarrassed in front of, my life should be on track and illness free. My stomach symptoms had not received the message that we were grown up and no longer needed to be on high alert. It was time to finally listen to my mother. Unfortunately, it was time to admit she was right. It was a hard pill to swallow but it was a realization that all smart adults eventually come to; your mother was probably right about that. Whatever your “that” is, your mom was probably right.
I trotted my behind, no pun intended, with my tail between my legs and my mother’s voice in my head saying “Go to the doctor! It’s Crohn’s!” to my general practitioner for a recommendation as to how to handle all of this. The doctor sat and listened to my symptoms, and decided that with my history of anxiety and occasional need for treatment of it, that all of my symptoms were mental and prescribed an antidepressant.
After months of taking the drugs none of the digestive symptoms had improved. I had gained night sweats and seizure like symptoms in my sleep. If you have had true night sweats you can appreciate the struggle those are. If you have not experienced these, imagine going running on a 100 degree day in a sweat suit, then take off the sweats ring the out in your sheets and while you are still all sweaty roll around in your bed. That will get you sort of close to what it is like trying to sleep after a night sweat. I also only know about the seizure like symptoms because my boyfriend, now husband, who sleeps like the dead, would wake up from all of the shaking and twitching that was going on in my sleep.
After a few months of that nonsense I finally decided my general practitioner was wrong and to go to a gastroenterologist.
My first trip to the gastroenterologist was intimidating and embarrassing. Who wants to talk about poop and farts and throw up? After having described my symptoms the doctor decided that I probably had gallbladder disease and needed an ultrasound. Weeks later it was revealed that I had a 1.5 inch gallstone, which is the exact size of your entire gallbladder. A gallbladder is in charge of breaking down fat from foods, now when the gallbladder is blocked with a stone, your body can’t break down fat. That all leads to massive digestive issues. The next step is surgery, routine, minimally invasive surgery.
After the gallbladder surgery I went for my standard follow up appointments. The surgeon and the gastroenterologist both said that I should feel perfect in three months, and if not in three, then six at the most. Definitely at six months I should not have any symptoms at all.
Near the end of the first six months post-surgery I moved to Georgia with my boyfriend and quit my job to do so. I assumed the symptoms that I was still experiencing were stress and nerves related. It is a big decision to quit your job and change your whole life for someone else. It would make sense that my stomach might be a little upset by all of this, right? Plus, I ran out of health insurance so there was no point in trying to get anymore follow appointments because I couldn’t afford them anyway. Finally things turned around a bit. I was able to find a job and pick up insurance and find a new gastroenterologist.
Hurray a new gastroenterologist! Or so I thought.
My first appointment, I was so excited to meet someone who might be able to give me some news and help with my stomach problems. I waited two hours to meet my new doctor. Finally in his office, having heard my family history of Crohn’s, he decided that Crohn’s disease was probably my diagnosis and that I would need a colonoscopy and an endoscopy to confirm. I waited two hours for a five minute appointment. Okay, a bit frustrating but at least we were getting somewhere.
I had been warned by several different people, mostly those in their fifties, about the colonoscopy prep. Their tips and tricks were not enough to prepare me for what was about to happen. None the less, I got through the prep and through the procedure. Cold, naked, hungry, drugged, and embarrassed, the doctor tried to explain what he had seen. To be honest, I don’t remember any of it. At a later appointment he told me that it was definitively Crohn’s disease, and I was one of the worst cases he had ever seen. This news was an unfortunate down pour on the high I was enjoying of having just gotten engaged.
The diagnosis was terrifying. I had no information, except for a name. I was pretty sure based on the way the doctor presented the news and the limited information I had read on the internet that I was going to die soon or be in the hospital for an extended period of time and then probably die.
It is hard to describe the feelings of sheer horror I felt during this time. I even went so far as to tell my husband, fiancé at the time, that he could leave with no hard feelings and I would even give the ring back. I had seen what illness can do to a couple and a family and that was not what he signed up for when he asked if I would marry him. Luckily for me, he said we are in this together no matter what happens. Looking back on it now if the doctor had better informed me of my situation, and helped me to develop a true game plane to move forward I probably would have never been so scared and attempted to end my relationship.
Armed with the love of my family, friends, fiancé, and some steroids I braved forward through the journey that is my Crohn’s disease. For about seven months I took the maximum allowable dose of a steroid that did not seem to be working at all. My symptoms still raged on and I lost 20 pounds. Having only started at 139, losing 20 made me look like a skeleton.
Eventually I decided I needed a new doctor and a new treatment plan, since my current doctor did not seem to want to take many steps to help me, and anyway, I was going to be changing insurance again when I got married. The old doctor and new doctor agreed that I needed to be put on a biologic, which didn’t work. With my wedding nearing and the potential doom of a Crohn’s patient and a white dress, I was in a panic. The new doctor decided to change biologics and see if that helped. The new doctor said I need to be vigilant to not have kids, which was not even on my radar, until I was in remission.
The new biologic seemed to help, and my symptoms began to decrease. I managed to gain six more pounds before my final dress fitting and not look so extremely sick at my wedding. Six out of twenty is only going to help so much, but it was help none the less. I then spent the next five months trying to adjust to the new biologic, praying that it would take care of my symptoms and put me into remission.
June of 2012 my doctor declared me in remission. Although I didn’t totally believe him, I was glad to hear those words! My Crohn’s symptoms had decreased so much that it was no longer a daily struggle for me. I had gained nearly all of the twenty pounds back, yay!
My husband and I decided it was time to have a discussion about kids. It was something we thought would be later in the future, not now. We looked at it from a logical standpoint. I was deemed healthy enough to have a kid, we had a great support system, and we were as financially ready as we could be. We decided we would keep this decision to ourselves in case there were any complications or it wasn’t possible.
We shocked everyone in December when we told everyone that a tiny human would be joining our family in June of 2013. I was one of the lucky ones; my Crohn’s actually got better with the pregnancy. Plus, since I was already on anti-nausea pills morning sickness and heart burn were not something I really had to deal with.
My pregnancy was not without its worries. I was, and continue to be, afraid of what taking my biologic throughout my pregnancy would do to my little one. The studies said probably nothing and the doctors said it was safe until the last trimester, but that did not allay my fears.
The second biggest fear was passing Crohn’s onto my baby. It seems to be a strong gene in my family, but statistically speaking, he had a better chance of having all of the other illnesses that “normal” children can get.
The arrival of a child comes with many changes emotionally and physically. For me the physical changes were a little bit different than other mamas. I couldn’t take the iron pills that my doctor wanted me to take, because they aggravated my Crohn’s; this led to me being a bit anemic. Also the doctor told me that it would take me approximately six weeks to completely recover, but being without an immune system it took me more than eight weeks to be even close to recovered. On top of all of this, my Crohn’s returned full of revenge. For several months I was tortured by my Crohn’s again.
Luckily, the biologics managed to get my Crohn’s back under control, though not back to remission. I soon began dealing with extra-intestinal symptoms rather than the stomach symptoms. My arthritis seemed to get worse along with two new symptoms: hypotension (unusually low blood pressure), and fainting. There was a suggestion of potential Addison’s disease, but luckily all of the tests were negative.
The next year rolled along with many changes. My family and I moved to a different state, therefore requiring me to get all new doctors. I have been working with my new team for a few months to try to continue to keep everything under control. We are soon visiting some alternative options for both the Crohn’s and arthritis. Hopefully they will help, and keep me and my family looking forward into 2015 and beyond.
Through having Crohn’s I have learned a lot.
I have learned to ask for help; to stand up for myself and be my own advocate; to help others; and value quiet moments. I have tried to use my disease as an opportunity to help others and the medical community. I love talking to other patients, parents and professionals about the disease and how to deal with it from a patient perspective.
I enjoy helping children who have Crohn’s or UC realize that there is a life outside of their disease and yes, you too can become a “highly-functioning” adult. It is important for patients, especially children to realize they are not their disease and they can rise above it.
I have become very attune with my limits. I am not necessarily happy to admit that I do have limits, but at least I know where they are now. My goal with my disease is to remind others that although Crohn’s can be debilitating, frustrating, horrifying and depressing that they can take their negative experiences and make them positive.
Erica Baker is a Crohn’s patient, but she’s also a wife, mother, engineer, and Camp Oasis volunteer. When she’s not busy with these things, you can catch her sharing her Crohn’s story at various presentations along the Eastern Seaboard.