I suffer from IBS and Ulcerative Colitis and have now for 18 years. I first started getting sick when I was 16 and it progressed and got really bad when I was 19. I lost 30 lbs in two months and had days where I could not move at all. I was exhausted and it got so bad that I was hungry but because every time I ate I got sick, I just stopped wanting to eat. I finally got into a gastroenterologist and was diagnosed with IBS. They treated it with Immodium and a prescription and after a few months, I started to feel a little better. This pattern has continued for years now, where I will get really sick for a few months at a time, then it will clear up and I will be better for a while. I have been on a million different meds, I have had all kinds of tests done, and the conclusion for now is that I have a combo of IBS and UC, which basically means that my digestive tract is a mess.
There are a million ways to try to “treat” these things, and some of them work for a while, but usually they stop working after some time and I have to try something else. A lot of the medications just kind of mask the issue and if the dose stops working, I am right back at square one. Last year in March, I had a horrible few weeks of episode after episode. I missed a whole week of work because I was so sick. It culminated in me having what I thought at the time was a seizure during an episode, and it scared me enough that I decided I’d had enough and demanded that my gastro doctor run every test available. I also had a consult with a neuro specialist who determined that the episode was not in fact a seizure, but my body basically shutting down from the immense pain I was in. In short, I went into shock. In relation to other pain I have felt in my life, the pain of an episode is 10 times more painful than contractions were. It is awful and scary.
So all my tests came back relatively normal, which they usually had in the past as well. I always have a bit of inflammation that shows in my blood work, but they also reviewed my previous colonoscopies and saw that the strictures I have in my large intestine have continued to restrict, which basically means that this is progressing and will likely get worse over time. With these conclusions, I was given the option to get on some new medication, but in order to do so, I had to stop breastfeeding. I declined and asked for alternative solutions to the issue, and was then referred to a nutritionist.
There have been a multitude of studies in the past few years linking diet to severe IBS and UC cases. For some people, following a low-fodmap diet has significantly reduced the episodes. My nutritionist recommended that I start the diet as soon as possible and even though the idea of limiting the foods I eat was pretty upsetting, I wanted to get better, so I got on board and started the diet. The first few weeks were really hard.
The low-fodmap diet is basically a diet that eliminates foods that cause fermentation within the intestinal tract. Fodmap stands for fermentable, oligosaccharides, disaccharides, monosaccharides, and polyols. Foods that fall into these categories are notorious for causing digestive discomfort in people, and especially so in people who suffer from IBS or other intestinal maladies. In starting out on the diet, it is really confusing. There are a lot of fruits and vegetables that are eliminated, garlic and onion are a big no-no, carbs, wheat, artificial sugars, some dairy, and whole host of other foods are supposed to be eliminated from your diet. For me, the real confusion was from seeing foods on the no list, like avocados, that in the past had been my go-to. There were other foods on the yes list that I have always had trouble with in the past, so I was really hesitant to try them. The intention of the elimination portion is that the list of foods are eliminated from the diet for 3-8 weeks, then certain foods can be reintroduced slowly after that.
For me, this has been really tricky. I already have a list of foods that were “triggers” to IBS episodes, so the eliminated foods were even bigger in my case. I struggled for the first two weeks to find foods that I could eat, and mainly stuck to rice cakes with peanut butter, bananas, almond milk, and meats. The truly hardest part for me was eliminating garlic and onion. These were staples in my cooking, but these two are the biggest culprits for causing digestive issues in people like me. In fact, these two foods are on a permanent elimination for most people who start the low-fodmap diet. It has been over a year now for me, and I have no intention of ever re-introducing them into my diet.
So what does this all mean long term? For me, it has been a mix of ups and downs. I am still pretty limited on what I eat, but I have re-introduced some foods, such as avocado and some gluten. I’ve tried to maintain the diet as much as possible because it has really reduced the amount of discomfort I am in. However, there are some things about the diet that I really am frustrated with. One is that I have a really hard time eating out. I can’t trust that food cooked in a commercial kitchen is garlic or onion free, and I hate being that person who has to order with a giant list of items I cannot consume. The other issue I ran into was that I was missing some nutritional things because of the elimination and it took me a long time to find the right mix of vitamins and probiotics to get me back on track. Lastly, I initially lost a significant amount of weight. I steadily lost weight at a rate of about a pound every other week for a few months. On the one hand, this was awesome because it got rid of all the excess pregnancy weight, but on the other hand, I plateaued a few months ago and have now started gaining weight again. It is a bizarre phenomenon, as I have not changed anything in the diet or my exercise routine, so I can only suspect that this is just part of my body adjusting to the diet.
One of the strangest things that occurred through this process is that there are some foods that I had been avoiding in the past because they always triggered an episode, but with the elimination of garlic and onion, I realized that most of the foods that were triggering in the past because they were nearly always combined with garlic or onion. The most classic case of this was tomatoes. I eliminated them from my diet years ago because every time I ate them I go terribly sick. Now, looking back, it was likely because of the fact that they were almost always combined with garlic or onions in their preparations.
As far as my family goes, they are not following the same diet. I am able to make family meals that are low-fodmap and also delicious, and I have become a master as modifying recipes to make them low-fodmap. I definitely have cheat days, where I risk eating something I know I shouldn’t. It’s really more of a lifestyle now than a diet, and I plan on sticking with it for as long as possible. In the past year, I have had significantly fewer episodes, and only two of those have been what I term “violent.” I feel a lot better, my overall body image is better, and I am happier as a result.
If you are planning on trying the low-fodmap diet, please consult with your doctor first. There is a concern that for some people the diet can be detrimental because of the loss of certain nutrients. If you want more information, the Monash University is the leading expert in the diet and they also have a really cool app that you can use that helps them with their long-term research. I highly recommend that people who are suffering from gastro-related ailments consult with your doctor to see if trying a low-fodmap diet is right for you.