Alex M's Diagnosis

Irritable Bowel Syndrome (IBS)- “is a chronic functional disorder of the gastrointestinal system. Patients experiences abdominal pain and altered bowel habit with ether predominantly diarrhea (IBS-D), constipation (IBS-C), or both (IBS-M)” (Canavan).

Alex M

Photo taken by Eleri

I was an undergrad in college and I had been feeling pretty sick, I suddenly noticed that I was spending more time in the bathroom than I had been previously. But I didn’t really think much of it at first, I figured I must have changed my eating habits. I started to think it was a problem because I was so lethargic, and I would fall asleep on my couch at 8pm and just stay there. It was really hard to get my homework done because I’d be so tired I’d just fall asleep on my books. At first I tried to change some stuff about my diet, because my mom had Irritable Bowel Syndrome and I know that there are certain things that triggered her stomach so I started to cut out some of the really fibrous things like whole grain breads and vegetables that are tough to digest but I didn’t feel better. I was so sick all the time no matter what I ate, and I kept eliminating things until the only thing I was eating was Eggo waffles without syrup or anything. 

I finally went to the doctor on campus and they ran just about every test possible… I had so many tests done that I knew the phlebotomist on a first name basis. They kept testing me and everything came back negative. I started to get really frustrated because no results meant that I still had no clue what was wrong. I would wake up earlier in the morning each day so I could leave time to be sick when I woke up, then I would ride my bike to campus and go to the bathroom, I’d sit in class suffering in pain, sweating and completely distracted and as soon as classes were done for the day I’d ride my bike home and fall asleep. 

No results meant that I still had no clue what was wrong

At the same time that I was sick and going to the doctor constantly, I also had a bunch of serious illnesses in my family, a few family members died, and I had to take care of some family members who were really ill, so the stress levels were pretty high… along with all the regular responsibilities of being a college student who really cares about her grades.

I’d go to appointment after appointment and each time I left with more questions than answers. I finally did some research and realized that IBS is really a lack of diagnosis. Essentially there is a criterion that doctors are supposed to use that says once you’ve eliminated the possibility of colon cancer and Inflammatory Bowel Disorders (which can lead to cancer) and no test comes back positive, the patient has IBS. But, I had a doctor— really an RN— who didn’t believe in IBS so she was determined to prove it was something else. She had it in her head that I was just allergic to something or that I was making it up. 

One moment that still makes me mad is I met with her during finals week, but I was an English major so I didn’t have finals, I had turned in my papers and was waiting for the last day of classes. She asked me how I would rate my stress on a scale of 1 to 10 and I said that I was maybe a 3 since I was done with everything, but she clearly didn’t seem to believe me. A few months later I had to get a copy of my records for a doctor in another state and I came across her notes from that appointment and she had said that I was “extremely stressed out about finals, and the patient’s stress level is a 10.” I couldn’t believe that she was adjusting my records so they could fit the diagnosis she had come up with, despite my word to the contrary. 

Eventually I went home for the summer and saw my family doctor who was angry to know another doctor said that IBS isn’t a disorder, and he recommended a Gastroenterologist to me. I really liked my doctor so I trusted him and went to see the GI… but that was a mistake. She looked at my thick folder filled with medical records, and every test result from the last few months, and told me that she wanted to perform 4 more tests. 2 of the tests I had already done and they came back negative, and when I mentioned that she said ‘yeah but I didn’t perform the tests…’ I was really upset because I just wanted to feel better and I had my first job starting that week, and I had hoped she could prescribe something to give me temporary relief.

I was really upset because I just wanted to feel better

She told me she wouldn’t prescribe anything until she had done those tests but I refused. I was so sick of tests and none of them showed anything. I explained to her that my job was near New York City so I had to take a train there for an hour, work all day at a desk, and then take a train home for an hour and I was terrified of being sick at every stage of that journey. Her solution for me, a 19 year old woman, was that she would write a doctor’s note to my boss saying ‘Please excuse Alex if she needs to go to the bathroom more than usual…’ I burst out in tears and was livid at the same time. I was in incredible pain doubled over and exhausted every day and her solution was for me to bring my boss, at a huge company, a note to let me go ‘potty’. I stormed out of that doctor’s office and decided I was done with doctors because I’d had such bad experiences and I knew it was IBS despite what most of them said. That day my mom and I did a bunch of research online and we found this experimental diet called Low-FODMAP. Essentially it was created by Monash University in Australia where they tested a bunch of different foods and measured the bacterial reactions in each person’s stomach. The foods that they put on the list as high in FODMAPS (an acronym referring to the different complex carbohydrates found in these foods) are foods that are difficult for anyone’s stomach to digest. The idea is that people with IBS simply have more sensitive stomachs and should avoid these complex carbs.

I had to eliminate all these possible trigger foods for 2 weeks and then reintroduce each category with a test food that represented the complex carb. So for instance I had to eat a tablespoon of plain honey to test one category and note any reaction my body had to it. I had been on the diet for two weeks and I felt fantastic, all my symptoms were gone. When it came time for me to test with the honey, I was immediately sick, which indicated the entire category of foods was a trigger for me.

The Low-FODMAP Diet

This was my cheat sheet until I memorized it from daily use. Think about the meals you have each day and see how many of these unapproved items you eat. 

This diet truly improved my life but came at a price, eating was never convenient. For 3 years I cooked every meal because anything packaged has processed ingredients that are not approved, and even food at restaurants could have low traces of ingredients that could make me sick. The hardest three things to avoid were garlic, onions and bread. Most foods, recipes, packaged or at restaurants have garlic and/or onion powder in them. It was also very difficult for me to avoid so many fruits and veggies because I’ve never been a huge meat-eater. I learned how to read labels and interpret scientific ingredients to see if they were actually trigger foods. Food shopping became a chore and I had to buy a lot of really specific specialty foods (which are quite a financial strain) and I got to the point where I don't pick up something if it has too many ingredients. While I obviously wish I didn't have to be so restricted in the first place I do know that it has changed my eating habits for life. I never ate unhealthy food but I am now much more aware of ingredients, when chemicals such as high-fructose corn syrup are in my food, and I know that I will always be mindful of what I eat as a result of this diet.

The hardest three things to avoid were garlic, onions and bread

It became an impediment for me socially because I’d have to look at menus and pick out restaurants instead of just going somewhere spontaneously— which doesn’t always work when you’re going out with other people.

Anywhere I went I’d bring food with me because I couldn’t trust that I’d be able to find something I could eat. When I would travel out of town I’d pack my suitcase with protein powder (a very specific plant based protein powder) and rice milk (which is basically water) and every single time my bag would get searched by the TSA. 

I would get cravings for foods that I hadn’t been able to eat in 3 years and had to get really creative with my cooking to avoid so many ingredients. I’d bring my own food over to friend’s houses when they wanted to invite me over and I couldn’t travel to other countries because I couldn’t control the food there.

Finally after almost 4 years I went to a nutritionist for help because I was so tired of the diet and felt really deprived. She suggested that I re-test the categories and see if my gut bacteria had re-adjusted after all this time. I did just that and I’m now able to eat with much more freedom which has been incredible. In a way I am in remission, which is a great feeling, although in the back of my head I’m afraid of the day when this won’t work for me anymore. The thought of restricting myself so much again is really exhausting. But for now I am going to enjoy the fact that I’m feeling well, for the most part, and I’m working to enjoy the good days while they last.

Ironically, while I was brainstorming how to capture my pain in images, I had an IBS flare up that was the worst it had been in about a year. I was so incredibly sick and miserable, I couldn't get off of my sofa because of the cramps in my stomach and the nausea... I was groaning when I really felt like screaming in pain. My fiance was trying to comfort me, and even though he has been with me since before my diagnosis he still gets distressed because he can't help me. About a month before I was taking these photos, he got really severe food poisoning and it was in this moment that I realized I could finally express to him what I was feeling like. I told him, 'remember how you felt when you were so sick? That's what this feels like... all the time..." and being able to verbalize it in that way to him helped him understand and helped me feel like I could put a finger on the magnitude of my discomfort. As the photographer and subject of this portion of the project, I gained a much different perspective on my own illness as I produced these images.

I found acupuncture because I hurt my back and my uncle recommended it, and while I was there she said she could help with my IBS. I wasn't too sure about it at first but then I remembered reading some research that people had reported a decrease in IBS symptoms when acupuncture was incorporated into their treatment plans. I've been going for a few months now and it has been amazing.