Go FODMAP Yourself

Beeps angrily.

Greetings from chilly and rainy…Phoenix? Yeah, it’s not a midwestern winter, but this isn’t the 70 and sunny I’m accustomed to this time of year.

I haven’t had a whole lot of new news for a few months. My radiation oncologist has “graduated” me, so I no longer need follow up visits. My gynecology oncologist is letting her residents and medical assistants do my check-ups as of last month. That means I’m not at a high risk for cancer coming back, so fine with me!

I’ll need you to breathe into this bag.

I have been seeing my gastroenterologist, and after the colonoscopy came back normal (plus one hemmerrhoid), we did a breath test to ensure I didn’t have any bacterial overgrowth. A hydrogen breath test is pretty easy compared to the colonoscopy. I had to prep by eating the most boring food on the planet (which might almost be harder than just not eating), and then fasting for 8 hours before the test. They gave me a sweet, glucose drink, and then every 20 minutes, I got to breathe into a little tube connected to a bag. My breath was sucked into a syringe, because I guess that works, and then the syringe was put into a little machine. Once the machine beeped angrily a few times and the nurse cursed a little, we waited another 20 minutes and then repeated the process. After a few hours of this, we concluded my gut did not have a bacterial overgrowth. We’re basically down to irritable bowel syndrome at this point. I’ll be seeing a nutritionist to work on a diet plan, likely regarding a low FODMAP diet.

Insert syringe of air here. This test is actually made up.

FODMAP stands for "fermentable oligo-, di-, mono-saccharides and polyols.” Basically, that means carbohydrates the body either has trouble digesting or that cause extra fermentation in the gut, which results in gas, bloating, constipation, diarrhea, and general misery.

I’ve been researching in preparation for my appointment and starting to ease into the diet to try things out. I can experiment with things before I’m officially cut off from all fun things. You can google endless lists of low-FODMAP foods, but essentially, the diet removes certain foods and food groups for a few weeks to get your gut regulated and make sure your IBS or SIBO symptoms are minimized or disappeared. Then, you gradually reintroduce foods to see which types cause flare-ups. The end goal is to find out how to manage your IBS with diet while eating as many foods as possible.

What foods are limited? Ugh. All the good ones. Seriously. Lactose means I have to drink Lactaid in my coffee and the only yogurt I can eat is a $5 lactose free tub I can’t find anywhere but Whole Foods. No high-fructose corn syrup, or fructose in general. That goes for most artificial sweeteners, which doesn’t bother me much. I prefer sugar or honey anyway. But honey is prohibited, so that blows. I can have maple syrup, but I will not use it in everything like some people seem so desperate to do. I have strong feelings about some food substitutions. The most challenging, though, is no garlic or onions. DO YOU KNOW HOW HARD IT IS NOT TO EAT GARLIC OR ONIONS? First of all, I love garlic. I roast it and just eat it by itself. I have less strong feelings for onions, but they’re kind of crucial in a lot of recipes. You also have no idea just how much you eat them until you can’t. Even if I could eat all the nuts in my favorite trail mix (which I can’t), they’re seasoned with garlic and onion powder. Sriracha, BBQ sauce, ketchup, and basically all salad dressings are full of garlic. Wheat is a close second. While it’s not the same as Celiac’s disease, gluten sensitivity is a real thing. It doesn’t have to do with the gluten, though. It’s the fructans, the same FODMAP in garlic. Portion sizes are also huge. 1/4 cup of raspberries may be fine, but 1/3 cup is too many. Measuring everything is a pain in the ass.

The hardest thing I’m finding is that I have to make virtually everything from scratch. If it comes in a package, there are likely some FODMAPs hiding in there. Eating out or buying anything packaged requires an extensive look into the ingredients list and measuring I can’t always do at Chick-Fil-A. I bought a cookbook that was praised and promoted on Amazon. Nearly every recipe was tomato, zucchini, and feta cheese. The author didn’t even discuss pork, beef, lamb, bison, etc. because she only eats “lean proteins” and none of that was mentioned in the description. If you want to know how many ways you can cook chicken breasts (not even thighs or drums, guys) or fish with salt, pepper, olive oil, and lemon, do I have a book for you!

Another common issue, which I found in the cookbook, as well as online and when searching recipes, is inconsistent information. I had to drop $8 on the app from Monash University in Australia, the apparent authority on all things FODMAP, to get some clarification and consistency. As someone who loves food, and isn’t good at eating the same thing every day, my challenge has been not only cooking without staple ingredients, but not hating life or being able to have a snack that isn’t carrots. I’m interested to see how things go with the nutritionist.

I also got to meet with my PCOS specialist/gynecologist, which I realize doesn’t sound like a fun time, but mine is pretty awesome. My various doctors have taken me off my PCOS meds to see if they were contributing to my IBS, and questioning if I even needed them after menopause. In that time, I’ve put on some weight and my skin has been freaking out. I know some of the weight gain is muscle, but I’ve been able to lose fat in the past more easily, even with a worse diet and less intense exercise. I know menopause may be contributing, but it still seems like something is off. We did some blood work, and I go back in a couple weeks to see where I’m at with hormones and meds. It was also nice to chat with her, because she really puts emphasis on quality of life, which is a gap in medical care.

I’ve read some books, listened to interviews with experts, and read a bunch of articles lately that all point to this gap. You can’t necessarily blame the oncologist for not worrying about your sex life. You’re alive, aren’t you? The thing is, so much of cancer treatment, and even gastroenterology, is practiced on older people. It’s a rare day that I see someone my age in the waiting room. Most of the people there have already accepted a diminished quality of life, just by virtue of having lived it for so long. If you’re 70 and have been post-menopausal for 15-20 years, hot flashes aren’t a concern. Maybe you don’t really care about having sex again. Fertility is a thing of the past. You already don’t move like you used to, and you aren’t as likely to be looking for work. A lot of doctors, especially specialists, are looking at the problem at hand and not much else. This isn’t a knock on my doctors, either. It’s an issue nationwide, and even overseas, and leaves young adult cancer survivors without a lot of resources for how to make things better.

My gynecologist and I talked about that gap, and she was going to chat with my oncologist to make sure they were aligned with meds. She also gave me a steroid suppository **Vagina stuff incoming! Close your eyes, faint of heart!** that would “have my vagina whistling Dixie.” Basically, the active ingredient is a steroid that, when absorbed in the vaginal tissue, is converted to a synthetic DHEA (sex hormones). Even though I have a hormone replacement patch, the estrogen is spread throughout my body, not necessarily in the lady parts. It helps with bone density and cardiac issues, but not much else. The suppository focuses the hormones in the vagina to alleviate dryness and some of the pain. Both menopause and radiation cause the vaginal walls to lose elasticity, so using a dilator (or other things) can be painful, not to mention that I have no sex drive. We’ll see how things go, and if these things help. So far, my skin seems a tad clearer, and the discharge from the little pellet has caused some chafing and irritation. I think different underwear will resolve that one.

I’ll keep you posted with the FODMAP diet, once I’ve actually done it under a nutritionist’s supervision, and let you know if the suppository works.