FODMAP Life is about bringing people together, supporting one another and educating all about the FODMAP Diet, and what it’s like for anyone to have digestive and inflammatory health issues. There’s a new section on our website called “Your Story” and Amanda is the first to share her story with Crohn’s disease. I am so happy she has decided to tell her story and help others on their journey.
Health Background: “I was born with a heart valve deformity, kidney deformity, reflux esophagitis, and anemia. As a child I developed asthma and osteopenia. Moving into teen years, I gained kidney stones (we found four when I was fourteen but I have made a total of eight as of today) and IBS. My last known diagnosis was Crohn’s in August of 2013. I have lived at doctors’ offices my whole life and have checkups often with every doctor to monitor my conditions.
My Journey: My junior year of high school I began having stomach pains, unusual bowel movements, and nausea on and off. My doctor blamed it on stress and possibly IBS since it ran in my family. So, I continued my days as best as I could by managing my other health problems along the way. My doctor had added b-12 on top of my iron supplements to take every day and I had surgery to remove a kidney stone that got stuck on the way out. Senior year is when it started getting worse for me. It seemed like anytime I ate, my stomach would get upset and I would have stomach bloating so bad I felt like I was a balloon about to pop and it made it look like I was pregnant.
After I graduated, I made a sick appointment with my doctor for intense pain that seemed to fill my whole mid-section. He sent me home with pain medication and told me to see my Urologist but by the time I saw him, the pain was gone. Going to the doctors and not getting answers seemed to be my life and I was miserable. November 2012, I ended up in the hospital because I had severe stomach pain and could not keep anything down (through both ends). I ended up staying in the hospital for a week with what seemed to be a bacterial infection with no known cause at the time. After getting out of the hospital, I felt amazing for the first two weeks, I assume because they had me on so much medication it was a temporary fix. As the weeks moved on, it felt as if my condition (we weren’t aware of what it was yet) was getting worse and worse. I was calling off of work, missing days of school, and my social life was non-existent. I was the definition of miserable. The only things that didn’t make me sick to eat were rice and mashed potatoes and if I had too much of them, I would get sick anyway. I woke up bloated, ran to bathroom all the time, and felt like I was going to be sick if I moved too much. My doctor told me to take it easy, start probiotics, and that I felt this way because it was just the way that my body healed. It has always taken me a lot longer to heal, a paper cut should be gone in a couple days and it takes at least two weeks to heal for me. I kept listening to him because he was the doctor and he knew what was best, so I thought. The next time that I went into the doctor I saw somebody different and it was the best choice I have ever made. He found blood in my stools so he referred me to a Gastroenterologist and gave me dissolvable Zofran so I could hopefully start keeping things down. They work so much better than the suppositories!!! After months of every testing imaginable, I got married and went on my honeymoon knowing that when we got back, my new doctor would finally be able to give us some answers.
Unfortunately, we ended up coming home a day early because I was too sick for us to enjoy ourselves. So August 8th 2013, I walked into the doctor’s office scared but excited that I would finally have answers and ultimately a cure. I ended up walking out crying because I was diagnosed with Crohn’s and there is no cure for that. It was devastating for me at first knowing that I would have to go my whole life with a sickness but it now made sense why my Iron and B-12 levels were so low and my white cells were high. The first medicine we tried was Pentasa four times a day but after the first day, I felt like I was going to die. My muscles hurt so bad and were so sensitive I bumped into the couch and almost got a Charlie horse. My beta blockers couldn’t stop my heart palpitations and my heart rate was high. She had me the stop the medicine right away and I was so disappointed. The next thing we tried was a daily journal of what I ate and how I felt along with Lialda and I was excited because even though it was more expensive, it had a better rate of lower side effects. After the first couple days, I felt the way that I did when I was on Pantasa. My doctor stopped that medicine and began Xifaxan for bacterial overgrowth which worked wonders!!! I have not felt this good in a very long time.
During my checkup we looked through my journal and she recommended the FODMAP diet which is where I am now. It was very hard at first because a lot of the alternatives in the FODMAP diet are nut related and I am severely allergic to all nuts. We found out that I have a very big sensitivity to the FODMAPS and I have almost completely eliminated every one from my diet. I cannot even express how hard it was at first but it was the best thing I could ever do for myself. I have never felt this “normal” in years and it is amazing. I am still new to this diet but my family has been so supportive and it is better than any medicine could ever do, without all of the nasty side effects. Between this diet, exercise (swimming, biking, and toning muscles), and lots of vitamins/probiotics I honestly feel amazing and I finally have my life back now. We are still adjusting vitamins and I will be starting shots soon but I am proud to say that after four months of being on this diet, my intestines are now healthy enough to eat salads and some raw fruit and veggies (in very small amounts). I now only have to go to the doctor once a year unless something changes and I have control of life, my body doesn’t. If I could have one bit of advice for anybody, it would be to not give up! You know your body more than anybody else does and voice to your doctor if you don’t agree with something. If I had spoken up earlier, it might not have taken years for me to get to this point. Take control of your health and don’t let your health control you!”
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