Just over a year ago, in April 2019, after many months of uncomfortable symptoms, excruciating pain and scary weight loss, I was diagnosed with Ulcerative Colitis (UC), a chronic non-contagious disease of the immune system that falls into the category of IBD (inflammatory bowel disease). The diagnosis was a blessing as it meant I could start a path towards recovery, but dealing with this disease has also meant living a more restricted life and dealing with physical challenges.
May 19th every year is World IBD Day, and to help raise awareness about this disease, this is personal story about living with Ulcerative Colitis in Italy, as well as traveling with IBD.
The symptoms are unpleasant, and I will try to be as delicate as possible when describing them, but I understand if you prefer not to read this story and just skip to my next art-related article. On the other hand, if you suffer from gastrointestinal problems, food allergies, Crohns, Colitis, Celiac or other autoimmune diseases, I hope that reading about my experience might help you.
Suffering and diagnosis
Over the Christmas holidays, at the end of 2018, I started having frequent urges to go to the bathroom. This was the first really clear symptom of IBD, but of course it would be months, and many rolls of toilet paper, later until I would know that. I’ve always had an “iffy tummy,” with some strong food sensitivities, and stress has always gone to my stomach, so I chalked it up to that. After ten days, I happened to go to my family doctor for my annual certificate of good health that permits me to go to the gym (mainly it’s an electrocardiogram), and I told him about the issue. He said I must have overeaten at Christmas and to take probiotics.
I can’t say that late 2018 was a great period for me. I was under a particular amount of stress as my father in law was very sick and I lacked the awesome support of my husband, who is my rock and well, also his entire family’s rock so he had a lot going on. I’d been having flare ups of my rheumatoid arthritis, or so it seemed, and had been to the immunologist to complain, though his answer was that I was lucky my meds were working so well and that I had only that pain and not worse. There was a period I could barely walk for pain in my feet and hips, but some very ugly shoes made it better. There was a strange pain that seemed like it derived from my sciatic nerve that made it difficult to sit on my office chair all day. Sometimes, it seemed to travel through the whole center of my body. I adapted by carrying a pillow everywhere to sit on, and using an electric heating pad that I must say is really a saviour. If you have arthritis you know that I mean. It sucks. I have had it for about 15 years but it was mostly under control with weekly injections of a biological drug (Enbrel); I don’t let it condition my life particularly.
What I came to refer to as “my pain in the butt” never left me (it still hasn’t) and it continued to get worse, while the, um, bathrooming issue also continued. It didn’t seem to matter what I ate, it never stayed in me for more than five minutes. I started having really low energy and losing weight. Three months in, I went to the doctor and he agreed it was time to see a gastrointerologist. Here in Italy, your family doctor gives you a script for specialist tests which you then request to the public system. It took about two weeks of trying to finally get someone to tell me that no gastro appointments were available for the year to come in the system. Luckily, we have a two-tier healthcare system, and I have private insurance, so I booked for a few weeks out with a guy who is top in the field.
While I waited, things got worse. The “pain in the butt” was unbearable, and I had strong pains in my left side, kind of like period cramps or being kicked repeatedly by a donkey. Finally the appointment day came. He examined me and he said he thought I had quite bad digestion and prescribed a strict, very strange diet as well as ayurvedic supplements. Standout elements of the diet were: cheese could be no younger than 5 years, focus on fish and game meat (ideal as I was a pescatarian!), wine should be red and aged more than four years, all vegetables should be cooked, the only starch permitted was basmati rice, and I should sip warm water every 20 minutes all day.
It took only five days with this regime to find myself curled up in a ball on the couch, crying and unable to eat or function. A call to the same doctor got me a colonoscopy five days after that, and before, I drank liquids and had friends and colleagues come babysit me because it felt risky to stand up if I were alone in the house. I weighed 45 kilos (99 pounds). The test immediately revealed Ulcerative Colitis, a disease that can only be confirmed by getting up in there and looking at the lining of the GI tract. This tract is inflamed, and in the case of UC, parts of it may be riddled with numerous bleeding ulcers, as was my case. This interferes with one’s ability to absorb nutrients and all that good stuff. For a definition of IBD including chrons and colitis, please see here.
The scary part is that if it is left untreated, UC can kill you. Many people have it much worse than I do; in severe cases surgery is performed to remove the large intestine and rectum. Luckily, I only found this out later on, so didn’t freak out. The first line of treatment usually is a drug called Mesalazine, combined with Cortisone. Not everyone responds well to it, but I did, literally from the first dose. I was taking a lot of these drugs, and it’s not super pleasant, but it worked so that I was able to have my first meal of mush after about three weeks of not eating.
My IBD diet in Italy
There are doctors who don’t believe diet plays a factor in IBD, and those who do. Mine was definitely in the diet camp, and suggested I continue the diet he assigned me (though I threw out those ayurvedic pills, I think they caused my total collapse because of some irritant ingredients). His diet, however, was hard for me to follow. To start with, I instinctively knew I should take it easy and eat really soft foods that are easy to digest. Normally after a stomach upset, we’re told to eat rice, white pasta or potatoes, but the doctor’s diet prohibited all of these things. I ate bananas and mushy soup.
The breakthrough for me was discovering a diet called IBD-AID thanks, actually, to a reader of this blog who had become a Facebook friend. I noticed she posted about being in hospital for some drugs by infusion and asked her why, and it turns out she also had UC. It was my second day home and on meds when she told me about this diet. IBD-AID was developed by the University of Massachusetts Medical School‘s Center for Applied Nutrition and not only is it specifically for my disease, but they provide an easy to follow, step by step meal plan, including recipes. There is a list of permitted foods, and best of all, three phases that represent different foods (especially textures) depending on your symptom level.
If you’re interested you can check out their website to fully understand the logic – I’m no scientist. But the idea is that we IBD sufferers have an imbalance of gut bacteria, and that the “bad bacteria,” which feeds on carbs, is extra bad for us and attacks the lining of our GI tract. This sounds hokey, but a lot of research backs up this kind of thing, not just in IBD but also in other auto-immune diseases – in fact, I later found out that there are very similar diets for arthritis as well as for more serious diseases like MS (see this book by a doctor who reversed her own MS symptoms with diet).
The diet has a lot in common with Paleo, and has the downside of being completely incompatible with the Mediterranean diet as it has been interpreted by modern society, ie pasta and pizza. In truth, the classic Med diet would have more to do with fish, vegetables and drizzles of olive oil, and that’s where I was headed. I had to stop eating all carbohydrates except oats, which the diet integrates ad nauseam. Due to my extant food sensitivities, I wasn’t able to eat everything on their food list, but I was willing to give this a shot. The first phase’s food was mostly mush, and although I craved texture, the closest I got to solid food for a while was some oat crackers I found at the health food store. Phase two involves mostly cooked foods and integrates more variety. Phase three, god bless, includes yummy crispy salads, which I was very happy to see after about six months.
This is a strict diet, and I knew that attempts to eat things not on the diet were going to cause a setback, so I stuck to it. I made little adjustments for my geographic location, because it has an American bias, and many of the recipes were dependent on ingredients that are common in North America, like peanut butter and sweet potatoes (I did eventually find reliable sources of those here). I also gave up being a life-long vegetarian and started eating organic chicken and turkey, because the diet approves of beans and tofu, which would make being vegetarian okay, but my digestive tract does not. Without my daily plate of pasta, I would starve.
It is very important to do food planning and food prep. There is literally only one bought, pre-made food I can eat (those oat crackers), so I have to make sure I always have home-made meals and snacks ready in advance. At the start, I also made a lot of shakes with almond milk. I make oat bread and almond butter cookies, snack on nuts and organic dried fruits, prep cooked vegetables as sides, and make a menu that alternates fish, eggs and poultry. Once I mastered food prep it took me one whole day and one evening per week to make most of my meals. I told my colleagues at work that I needed extra time off to do this.
The drugs were working from day one, and things weren’t perfect, but I got my energy back, my skin colour changed, my nails hardened and eventually my hair stopped falling out (ok that was about 8 months later). I had a relapse a few months later when I tried to get off the drugs a bit too quickly because I hadn’t been assigned a followup appointment with my doctor (they’re not very proactive here, you have to be) and had misunderstood how to wean. At this point I went back to my trusted immunologist, who had been treating my RA, and on Christmas Eve, 2019, he switched me to a different injected biological drug that is approved for both diseases. Humira (the drug) and I get along well; after 2.5 months it cleared up most of my symptoms.
Healing, sports and travel with UC
UC limits your life. Some people can just take the drugs and be fine, or are okay with relapses. I found I needed the diet, and that meant a lot of restrictions, namely on travel and on eating out. My job involves a fair amount of both of these things. I also have a pretty active life – I love tennis, hiking and working out at the gym. If I concentrated on my health, I could do sports and travel again.
I put myself to the travel test immediately. It wasn’t my choice exactly. We had a major trip to Morocco in late April 2019, three weeks after my diagnosis. As I hadn’t been feeling well already while booking it, I had gone the luxury route. And being the week of Easter, it wasn’t cheap. As I lay in bed unable to eat or stand up on my own, I started trying to cancel the trip, and found that I wouldn’t get much money back. I tried to sell it, but no bites. The thought of throwing that away, and not having this hard-earned trip with my husband after a really tough year, was making me terribly depressed. A few days before we were supposed to leave, Tommaso said “why don’t we just go. You can pack a bunch of food, write ahead to the riad (small hotel) to have them make special things, and we can just sit around and look at the sky if you don’t feel well enough to do stuff.” We also had trip cancellation and repatriation insurance that was active during the trip, but didn’t apply to canceling before the trip!
And so we did. I packed a suitcase with 8 kilos of food including the famous oat crackers, tuna, peanut butter and honey, applesauce, non-dairy sugarless milk, herbal tea (turns out mint tea was great) and a “mix” for oat-flour pancakes, the best recipe of the whole IBD-AID arsenal. We arrived in Marrakesh where the kind ladies at the riad had made me a tajine with lovely cooked vegetables and no spices. My first morning was spent with them in the kitchen making oat pancakes, communicating in bad French and them in Arabic. They were wonderful and humoured me while I stuck to my awful diet for three meals per day at the riad. We took it easy, but with the calorie intake I was able to walk enough to see the main sights with our private guide. We didn’t go to the desert (miles of sand are IBD-incompatible) or eat any street food but the trip healed me in a way that staying home would not. I shared nothing of the trip on social media, and in fact had deleted socials from my phone for a full digital detox.
I had a heavy spring of travel: at the end of May, I had to go to Slovenia for work for five days. The first night was a social dinner at a restaurant and they brought me two white fishes done on the grill, it was plentiful… and that had to keep me going for a few days, as conference food is a disaster and I didn’t get much else for the rest of the time. Luckily I had my emergency peanut butter, tuna and crackers.
A few months of cooked fish and cooked vegetables and I had enough energy to hit the tennis court again in June. My colleagues got me a new tennis outfit for my birthday, since I was now a size small, not to mention down three bra sizes. I was doing well, but I still couldn’t really sit down without pain. Remember the “pain in the ass”? It was still really bad, and no massage or physiotherapy could fix it. I hypothesized that the inflammation of the colon spread to inflame the piriformis muscle.
In September I decided it was time to rebuild – I forgot to mention that cortisone eats muscle, and I was on cortisone for three months so I had zero muscles! Even the old people classes at the gym were too hard for me, so I treated myself to a personal trainer (this is something that is relatively affordable in Italy). Tiziano is a nutritionist and specializes in functional training and pilates and he immediately noticed that I wasn’t activating my glutes, and that I had a slightly flattened spine and reduced lower back mobility. I immediately got an MRI, because there is another auto-immune disease with related symptoms and thankfully I don’t have that. Meanwhile Tiziano taught me how to activate my muscles and increase mobility. Six months together and I was stronger than ever, and that showed in my tennis game too.
The COVID-19 lockdown didn’t do wonders for my physical health, as staying moving and frequent exercise are essential to keeping my UC and RA under control. Being immunosupressed for both of these diseases puts me in an at-risk category, so I’ll be indoors long after things have opened up for most people. I’ve stuck to my diet though, and figured out that I can cheat a bit about once a week without too dire consequences. I have been doing classes with Tiziano online (I am so grateful for my gym offering free live classes!). I’ve lost some of that hard-earned muscle, but I will get it back. I’m still underweight, which makes clothes look nice but I think my face looks older and drawn out, and sometimes I catch myself in the mirror and think I am an alien.
In many ways, I am very lucky. I live in a place with good access to healthcare, and a public system that covers the very expensive drugs I have been taking for more than a decade, including the one I now take for UC. The cost of these drugs would be prohibitive without this. I also am lucky because fresh food like fish and vegetables are available year round here, though I calculated that with the IBD-AID diet, the cost of food in our family has gone up by 30-40%, mostly due to integrating fish and meat where I ate mostly rice and pasta before. I am lucky that the doctors diagnosed the UC before it did permanent damage, and that I have supportive people around me, including a husband willing to eat an IBD-AID diet, friends who will let me bring my own food to parties, and bosses who have given me time to take care of myself.
One year in, what have I learned about living with ulcerative colitis? I’ve learned that it’s a scary and uncomfortable disease that needs to be addressed urgently if you have symptoms, and for me that meant taking responsibility for my health at all costs. This includes speaking out without embarassment about what is not a typical topic at the dinner table. I’m not afraid to tell people that if I don’t stick to my diet, my colon will bleed, ergo I may be a “difficult” guest at a press event, or simply I won’t attend. I’ve found out what I need to do, personally, to keep this disease under control, for now at least. I also know that may change in the future, and I hope I can be wise about dealing with it then, too.
If you have any symptoms of IBD, don’t lie to yourself. Get a colonoscopy and a gastroscopy and get to the “bottom of it,” so to speak. Hound your doctor, get specialists, get tests, and stick to your treatment program. Canada, the UK and the USA have Chrons and Colitis Societies or Associations that provide information. In Italy there is Amici Onlus (NB their dietary recommendations are “traditional” and don’t match with IBD-AID). If there’s anything I can do to help you, please comment or send me an email to info (at) arttrav.com.