In August my gastroenterologist decided to try a more holistic approach to treating what he said was severe irritable bowel syndrome, or IBS. At this point I was weaning off chemotherapy with the concern that the Methotrexate was doing more harm than good. My rheumatologist had referred me to a specialist because while the chemo was not helping the traumatic nausea, vomiting, and bloating bouts, we both didn’t think the chemo alone was the cause to these symptoms.
I had every test done to rule out possible other diseases, but they all came back negative. I felt hopeless. What was wrong with me? If I didn’t have a diagnosis, who would I turn to next to be treated?
People my age bar-hop, but I found myself hospital-hopping, which was time consuming, costly, emotionally distressing, and with no real answers, incredibly frustrating.
I went to the gastroenterologist with little expectation that I would become remotely close to a diagnosis or plan for treatment, but I was pleasantly surprised!
When I arrived to the appointment, the nurse could tell that I was destraught and drained. She did not have to take my weight or height since I had already been in the hospital that week with my rheumatologist, but she went on to ask about my already-updated medications, “Looks like you are on some pretty serious drugs. Could we walk through these so I can explain to the doctor what they are for since you are a new patient?” I nodded with forced smile. It wasn’t that I didn’t find her nice. In fact, she was incredibly sweet with great bedside manner, but as a patient, it did not matter who it was–
I was tired of seeing doctors, nurses, and lab techs. I was just tired, in general, of the whole never-ending sick cycle with no diagnosis or answers as to why I was feeling severely nauseous.
The nurse picked up quickly on my distraught vibe and stuck to the prompted questions instead of dragging out the process. When she left, I think she relayed the message of how I looked fairly down and out and quite frankly– hopeless. When the doctor came in, he greeted me with a handshake and then said to me that no matter what I had or have, the goal of his care would be to not add one single other other medication to the long list.
“Jill, the goal of this visit in to get to the root of the problem. I’m not going to add one other medication to what looks like your own personal pharmacy.”
What a relief! This gave me hope and kicked off my visit on a better note. After going through my symptoms with extreme detail, he then pushed around on my stomach. I had a few unexpected screams which still, as I write this, gives me the chills and squeemsish shivers thinking about it.
After staring at me for a second, he said that there were no consistencies with my symptoms and that he strongly believed that my symptoms were a result of the combination of my autoimmune disease, Rheumatoid Arthritis, the harsh medications I was taking, as well as Irritable Bowel Syndrome (IBS) which he determined were on the severe end of the spectrum.
He then discussed why my symptoms were so painful. Even though it felt like something else, like another disease, my confused immune system can easily make it seem like another disease is present due to the extremes that my immune system goes through to attack itself. It’s not uncommon for RA patients to feel severe stomach pain, especially with 25+ years of immunosuppressants and NSAIDs. Those cause heavy damage on the stomach and liver.
In that moment, I felt sincerity from a specialist that I had not felt in a long while. I felt heard; my feelings were validated. I was not crazy! A doctor was explaining to me that yes, my stomach pains are severe and for good reason– my Rheumatoid Arthritis!
This disease affects not only the bones and joints. It effects every organ in my body. The medications taken to reduce chances of flare-ups makes these organs even more painful.
We continued on and he then asked me if I was up for a challenge to remove something. I was confused since there was no diagnosis apart from IBS, but I said, “Sure. I have nothing to lose.”
The doctor asked if I had ever done an elimination diet, which I confirmed that I had. In fact, I had gone on three previous to this visit– The Gluten Free Diet, The Dairy Free and Vegan Diet, as well as the No Night-Shade Diet. He confirmed that all of these are great, but most people do them wrong by not giving enough time to avoid and reintroduce foods. In addition, he explained that the micro biome chemistry is incredibly complicated and some foods react to other foods negatively, even if they aren’t on the avoid list.
Then he told me that we needed to get rid of the High FODMAP foods in my diet. Now, I have heard of almost every diet, but apparently had missed this one.
This Low FODMAP diet is up and coming and has been popular in Australia and New Zealand in the past 8 years. The diet is essentially a way to understand what food triggers are through two stages, totaling to about 9 months of dietary work. The two stages are elimination and reintroduction and focus on the FODMAPs.
FODMAP stands for:
- Oligosaccharides (eg. Fructans and Galacto-oligosaccharides (GOS))
- Disaccharides (eg. Lactose)
- Monosaccharides (eg. excess Fructose)
- Polyols (eg. Sorbitol, Mannitol, Maltitol, Xylitol and Isomalt)
He walked me through the diet and when he was describing some of the foods that you needed to avoid, I laughed– the foods highest in FODMAPs were things I was severely allergic to, including apples, cherries, and pears, due to the extremely high levels of fructose, something which doctors have previously determined that my body cannot break down the high fructose levels nor sucrose levels. He smiled at me and said that that made complete sense– these are all foods that peoples with IBS or IBD should avoid.
He printed me out the long list of foods (and I really mean LONG list). For six months, I was to avoid all the foods on the list. I also was to measure out my food and make sure that I didn’t make any combinations of foods that were forbidden to go together. For example, I could only eat 6 almonds if I chose to enjoy some. He encouraged me to do research, call with questions, and do a follow up in six-months when I began to re-introduce foods.
A log was to be kept of all the changes my body went through, which foods I couldn’t stomach, and which foods my body craved. This was important for the diet so that the doctor and I could track trends to responses my body had to foods and food combinations. I told him no problem and agreed to take the diet seriously.
The appointment ended on a positive note. Here I was being told that I was to basically eat like a hypo-allergic patient, that essentially I couldn’t eat out, and that I’d have to cook for every single meal so that I knew every single ingredient was low FODMAP safe.
Some people would have felt overwhelmed and restricted, down and out that they couldn’t socialize through culinary experiences, but me? No, I owned it. In that moment I accepted the challenge for what it was. I had never been so excited to be completely restricted.
For me, it meant getting creative and allowing my restrictions to be a creative outlet. For me, it meant finding out answers to the nausea and severe stomach pains and migraines that had caused me to miss out on many experiences. For me, it meant hope and working towards ultimate happiness.
I was grateful for that doctor and still am eternally to this day. It opened my eyes to the possibilities in which food can help us heal. It meant not taking another medication and working towards optimal health. It meant a cure to all the yucky things that were holding me back from doing the things I love.
If you have any questions as to how to improve your IBS, need recipe ideas, or simply need someone to listen, I encourage you to check out the links in this post and DM me on Instagram. I am always, always here for you to lean on.
We are in this health journey TOGETHER!