My Full Story
Welcome! this is my full and detailed story. This post is my personal information detailing my battle with Crohn’s Disease and may or may not be the same as anyone else in the entire world. The purpose of this post is to connect us and hopefully convey my story in a way that will offer hope and let you all know that if you are reading this, you are not alone.
Growing up I was pretty healthy. I had a heart rhythm irregularity that I grew out of at age 14, but mostly I grew up just fine and healthy. My mother had Ulcerative Colitis so I grew up with a good understanding of Inflammatory Bowel Disease. She was sick a lot of the time and when she wasn’t severely sick she was on steroids or a very strict diet. I never knew how hard her life actually was. I didn’t understand the depth of her disease until I became a victim of it. To this day I don’t know how she survived it.
These kind of diseases are mentally and physically staggering. However, to those on the outside, to someone looking in who knows nothing about this kind of disease, they’d have no clue the kind of pain that IBDers are constantly in and the mental toll that it takes. My mom was/is amazing. She did a remarkable job of shielding me from her pain while I was growing up. Because of the health of my mother I was very familiar with IBD. Yes, she shielded me as much as she could, but I still was exposed to the medications, the hospital stays, the pain, the difficult decisions, the surgeries and a host of other things. I saw it all and took it all in.
I am about to detail for you, my progression toward this disease. While I don’t think that my diagnosis would have been avoidable, because I believe a lot of this disease is genetic, I do believe that had I taken better care of myself I could have potentially avoided the severity of this disease that I endure or even have never triggered it at all. I am not blaming anyone for this, including myself, but I do firmly believe that there were warning signs that I could have heeded to a much greater extent to not trigger this disease. Ultimately I believe that God is in control and only things that he allows will happen to us, but He does give us a free will…
My official diagnosis came on July 11, 2013. It was Crohn’s Disease. That date, however, was not the onset of my strange symptoms. In order to share all of those with you, we have a to a trip back to January 2009. This is when I believe I started having some abnormal gut symptoms. I was pregnant with our first baby and having all kinds of difficulties. I was constipated beyond belief almost the whole entire pregnancy so I was told to stop taking iron or anything that was binding. I did not eat right, I didn’t take care of myself because I felt so miserable and gained almost 70 pounds with this baby. Towards the end of the pregnancy, I started itching horribly, everywhere. I was then, after several Dr’s appointments and consults, diagnosed with P.U.P.P.P. (Pruritic urticarial papules and plaques of pregnancy). This was by far the most excruciating experience that I had ever been through up to this point in my life. I had pustules and hives breaking open all over my body and pain and itching everywhere. The simple, yet unscientific, way to explain this condition is to say that the body is allergic to the amniotic fluid and is having a systemic reaction to that ‘allergen’. The only cure is to relieve the body of the baby, hence relieving it of the amniotic fluid. Because of this diagnosis, I had an emergency c-section a week early. I was told that I had the worst case of this condition that anyone had ever seen. (I had researchers and Drs coming to my room from all over to see it, take pictures and get biopsy samples) After my beautiful baby girl was delivered it took over a month for this condition to resolve. I believe that this was the first that I dealt with symptoms of leaky gut. (Please see my article on leaky gut) Because of my lack of self-care during this pregnancy and due to the fact that I had stopped my prenatal vitamin for the constipation issues, after my delivery I had a hemoglobin of 8 (normal should be 13-16) I felt awful once again. I received several IV doses of iron (10 doses over 10 weeks) which returned my energy and my general sense of well-being, but I didn’t know it at the time a dark shadow had started to follow me. I started noticing that I couldn’t tolerate certain foods anymore, my bowels went from constipated back to loose over and over again. This was the beginning of my leaky gut symptoms, I believe.
In November of 2010, I was pregnant again with our baby boy, Luke. This pregnancy was much better but still not easy. I ended up with another c-section and was unable to breastfeed. My body just didn’t make enough milk to keep up with that baby. I was sad but I pumped as much as I could and supplemented with formula. I lost the ‘baby weight’ quickly and had no need for iron infusions. I regained my strength quickly, let go of my diet and exercise plan and just enjoyed being a mom. This was the calm before the storm. If only I could have stayed in these moments forever.
In June 2011 I had a tick bite my arm. My husband removed the whole tick and even though I never saw a bullseye, my Dr insisted on treating this prophylactically with 3 months of antibiotics and some hydrocortisone to help with some adrenal suppression that was suspected through my natural path Dr. I did as my Dr’s told me and after 3 months was feeling pretty good. I was running again and in great shape. I was playing sports with my ultra athletic husband and running around with the kids every day. We’d do all sorts of things together like go to the zoo or a museum in the city. We would go for walks everyday after dinner and play outside for hours. I wasn’t working and we were just enjoying life. The dark shadow that had started to follow me was closing in, even though all I could see was sunshine and rainbows.
In the months that followed I had several urinary tract infections. 9 to be exact. 9! 9 between the months of January 2012- September 2012. This was almost 1 UTI per month. I was in agony. I was on every antibiotic imaginable for this kind of problem but it kept returning. I saw a few urologists and had no answers. Eventually, the urologist that I was seeing came to the conclusion that my last c-section had put a nick in my bladder and bacteria was building up there causing all these UTIs. He also suggested I start taking a supplement with cranberry and D-Mannose. These supplements work better than antibiotics! I still get UTI’s every once in a while, but never like that again, at least not yet.
Sometime after this, I began having hives everywhere and was struggling once again with diarrhea and constipation alternating. Throughout this time as I have mentioned in some places, I struggled with hives. My dermatologist put me on an antihistamine but it didn’t really help. I would get hives all over my body but they’d attack my face and arms mostly. There was one point where I could ‘draw on myself’ with hives. My dermatologist called it ‘dermatographism’. I won’t go into too much detail but it was really itchy, was red and painfully irritated skin and looked very ugly. During this time my fatigue came back with a vengeance. I was tired and irritable all the time. I wasn’t eating right again and I had stopped running and playing. I felt awful. I went to the Dr and he said “well, you have needed iron before when you felt like this, let’s try it again.” This was stated even though my blood work did not show a need for iron. I blindly went into these iron infusions thinking that I’d feel better afterward and the nauseated feeling in my gut telling me to stop was wrong. The dark cloud was settling over me and I could see it now but I didn’t know how to stop it.
On June 12th I received my second dose of the ordered of 3 infusions of iron. My body reacted badly to it. I had an anaphylactic reaction to the iron. My blood pressure went through the roof, I was itching and I had trouble articulating anything to my nurses. They pushed Benedryl and finished the infusion. I was scared, I knew that my body had not liked the iron for some reason but I pushed through as they told me to do. The very next day my Crohn’s symptoms started and they have never stopped. I frantically called my hematologist and explained that I had massive amounts of diarrhea and that I felt very ill. I explained that reaction that I had in the infusion center. She shrugged it off and told me to take Imodium. I did as she instructed. It didn’t work. Over the course of the next few weeks, I went to see a gastroenterologist who eventually, after a colonoscopy, diagnosed me with Crohn’s Disease. I do not believe that the iron was the cause of the Crohn’s Disease, but it was the trigger. I believe that this was the tipping point for my body. The last straw.
My Dr explained that this was a chronic disease, it would not go away, there was no reason that I got it and there was nothing I or they could do, except give meds, to correct it. This Dr. was a compassionate man, he called me to check on me often and was genuinely, I believe, concerned, but he sat across his huge oak desk in his large office and looked me in the eye and basically told me that I was in for the fight of my life. I just knew I would suffer for the rest of my life. I had seen the toll this type of disease had taken on my mother. I knew what was ahead of me. That black shadow that once followed me around was now a humongous rain cloud that settled directly above me. I couldn’t outrun it anymore. I couldn’t see the sun or rainbows that I had once enjoyed on a daily basis. My GI Dr. gave me about 6 prescriptions that day all for various symptoms that I had told him about. An antidepressant (probably because I sat there a blubbering mess), an anti-anxiety (because I told him I couldn’t sleep and that I was worried), a steroid, an anti-nausea (because I couldn’t eat) and an anti-inflammatory drug specifically for Crohn’s Disease. I left there in a daze. Don’t really remember anything else about that day or even that week.
To this day I vividly see his face, his big desk, the trees outside of his window moving with the wind, the 6 pieces of paper in front of me, I can feel my moms hand holding mine, I can smell the stench of that office, I can feel the tears running down my face and feel despair and the anguish in the pit of my gut over that diagnosis. All those feelings haunt me but, this is my blog/story of healing, of recovery. I want to blog about everything I have done from that point on because maybe, just maybe, it could help someone. Someone might learn something from my experience with the SSI drug that I was in the clinical trial for, or the hyperbaric oxygen treatment that I tried, or the essential oils that I use to help with my everyday symptoms, or the seemingly miraculous benefit of anti-grain or the SCD and Paleo diets. I have done and learned so much in the past four years since that moment that still seems stopped in time that I feel the passion to spread the word around for others. To maybe inspire them or just save them time and energy and money. I just want to reach as many people as I can and help anyone who will listen. Even if this blog never earns a dime or reaches millions like some other bloggers do, if I can help just one person going through this dark place with muddy waters it will all have been worth it.
Everything happens for a reason.
“When you have exhausted all possibilities, remember that you indeed have not”
– Thomas Edison