She was horrified when I described his restricted diet, a meal plan four years in the creating, to which he must stick if he is to stay in remission or get back into remission if he flares.
“But he’s so young!” she said. “With such limited food choices, how does he manage to stay so positive?”
“Impressive, isn’t it?” I replied. “Now you understand why he is such a hero in my eyes.”
Here's the menu he adheres to.
Minced Turkey - fried in olive oil, or boiled and seasoned with ginger and turmeric powder and salt to taste.
Minced Bison - prepared as above.
Minced Chicken - prepared as above.
Note: Our meats are raised without hormones or antibiotics.
Cauliflower or broccoli - boiled until falling apart and seasoned with turmeric and ginger powder and salt to taste.
(Sorry, we are unable to offer pasta, potatoes or other carbs.)
Note: We use ginger and turmeric because of their anti-inflammatory properties.
Envirokidz Chocolate Choco Chimps - gluten free and wheat free served with Ripple pea milk.
Our Take-Away Menu
Whenever Bars - because we understand how hard it is on people with ulcerative colitis not to safely be able to grab ready-made food to eat on the go.
(These bars were a great find and although they tend to give my son gas, he gets no other ill effects despite the fact that they contain traces of things that he normally can’t eat.)
One occasional glass of red wine
And there you have his entire menu.
In my post Ulcerative Colitis: The Natural Approach I mentioned the list of supplements recommended by a doctor in New York State, which keep my son in a good place mentally as well as helping to replace nutrients he doesn’t get from his limited diet.
One of them is taurine. This amino acid regulates the immune system, is an antioxidant and has been found to reduce inflammation, an essential function for anyone with UC.
My son works out every day to build muscle (maintaining weight is a constant problem with UC) and taurine also reduces muscle fatigue and muscle damage. When he ran out of taurine there was a downturn in his overall well-being.
“Within a week I noticed less energy, awareness and happiness (and I was) more likely to get upset.”
That went away when he started taking taurine again.
My son stresses that mental attitude is CRUCIAL to getting through a flare. It’s important to know that it will pass.
Even when he's doing the right things, they take time to work. We’re talking weeks and months, depending on the severity of his symptoms.
His last flare began in late October when he ate raw coconut flour. He was making his own protein drink and didn’t react badly the first day he drank it, so thought it was O.K. to continue. Too late he discovered how wrong he was.
A month later he was coming out of that flare, but ran out of food the day he took one of his CPA exams (stress). He ate an egg from Wawa without realizing it had mayonnaise in it. Back he went into a flare, worse than the previous one.
Already hurting from throwing the ball for his dog, his shoulder became so painful when this flare started that he could hardly move his arm. The pain then spread to his other shoulder.
But he insisted on going with me for a week to Fontana Village in North Carolina to walk the mountain trails by day with our two dogs, and sit by the fire in our log cabin every evening, watching funny British programs.
At night I heard him rush to the bathroom every forty-five minutes and listen to podcasts in there, soaking up knowledge while his body was letting him down…
He was exhausted and more emaciated each morning, but determined to continue our exploration of the area, even if it meant pooping himself.
As if that weren’t bad enough, on our return back home his knees became inflamed and he could no longer bend them. I heard him scream in bed whenever his dog accidentally jumped onto his knees to snuggle with him on the duvet.
We tried everything - heat pads, creams, etc. - but nothing worked. And his shoulders were still killing him. He could not find a comfortable position in bed.
Life was truly miserable!! Christmas was miserable!
But he kept telling me, “Mum, I know this will pass.” Please note, he kept telling me that, not the other way round.
You cannot imagine the tears I shed and prayers I said and fasting I performed in private for my poor son.
When we finally managed to see a doctor about his shoulder, we discovered that he had a torn rotator cuff. But being in a flare, his body was in full inflammation mode, unable to heal anything.
We then found out that the knee problem was bursitis. Again, inflammation as a direct result of the flare. I have a friend with Crohn’s who gets arthritis in her knees when she flares. When the physician's assistant pressed on them to figure out what was wrong, he greatly alleviated the pain. Every evening after that my son asked me to press hard on the swelling, which helped him hugely and his knees soon returned to normal.
Finally he was starting to get a bit better and ate some gluten free potato chips, something he used to eat with no problem. He thinks the hard chips were too rough on his stomach, because he went back into a flare.
This was now his third flare in a row.
Refusal to Give Up
But my son continued with his strict diet and his supplements in the total conviction that this regime would eventually work.
He also went back to the gym as soon as he could walk again. For you guys reading this, you’ll relate to his embarrassment when he had to use the pink girl-size weights instead of the beefy dark colored masculine ones he’d been lifting before his flare! He kept wanting to shout out to the hunks in there, “I don’t normally look like this! This isn’t the real me!”
But he had to leave his ego at the door whenever he walked into that sea of muscled torsos.
His advice to others in the same situation: “Catch yourself when you feel down about it - IT WILL GET BETTER!”
Slow but not Steady
A big problem with trying to be positive is that this condition doesn’t improve in linear fashion. After continuing for weeks at the same level, the bleeding in his stool suddenly goes away for no obvious reason.
He stays at that new level for weeks, until the diarrhea suddenly stops.
I read a post on a thread about a UC sufferer, who had a colonoscopy during his flare. He was suffering the full blown symptoms of the disease even though only a tiny part of his colon was still affected.
That explains to me why the symptoms don’t continue to improve gradually. Even if a miniscule part of your colon is inflamed, it feels as if the whole thing is. You ‘suddenly’ get better once that pesky last little bit heals.
My son experiences a huge thirst for knowledge when flaring. In addition to listening to podcasts all day long, he reads Seneca and the other stoics.
He uses this time to educate himself about topics related to physical and mental health and this is how he comes across many of the supplements he uses. He researches constantly for new ways to help himself.
Holding down a steady job is really rough on someone with UC.
My son appreciates having been able to come home to his parents when he flared again. He was, in any case, taking a break from work to study for his CPA exams but it is no surprise that poor eating and the stress of the first three exams resulted in flares. (Miraculously he passed them!)
He finally got his symptoms under control around the end of May and was able to sign on with an employment agency. He has taken a temporary accounting job in D.C. for the next few months and drives to the Metro which he rides into the city, with one stop.
He gets up at 4:30 a.m. to go to the gym then comes back for a shower before going to work.
His UC makes him much more disciplined about preparing enough food to take with him and ensuring he eats in time to use the bathroom way ahead of making that trek into D.C. His next meal isn’t until 3 p.m. to guarantee he can last the trip home without mishap but also without starving.
Not only does he prepare his food the night before for the next day but he also lays out the week’s clothes - for both gym and work.
He told me that his UC has made him extremely organized overall. Even in the early days of his diagnosis, when his college grades were so-so, his disease caused a big shift in his outlook. Determined to make the best of it, he kicked himself into high gear and made the dean’s list. He walked dogs at the local rescue over that last summer in college and adopted a beautiful Border Collie cross, Fly, named after the sheep dog in the movie "Babe."
He now takes her everywhere with him including on a hiking trip with another friend and his rescue dog to Colorado over the past two weeks.
(A topic for a later post!)
Ulcerative colitis doesn’t have to mean the end of ever having fun.
Yes, it means a big change in your life plans. But it is possible to turn it into a positive. You can’t eat foods that are bad for you, so you have to take care of your body. Your focus turns from a hearty appetite for meals to a healthy appetite for staying in shape and taking part in interesting and enjoyable activities.
UC sufferers have a lot of incentive to make the most of their lives in ways that don’t relate to food, and my son has chosen to take that approach. He no longer takes risks with his eating, and we're hoping he makes it through the winter this year without flaring.
You know me - I'll have an update about that when the time comes!
If you have a UC diet to share, contact me.
- Ulcerative Colitis: A Natural Approach
- St. Jude & Ulcerative Colitis
- Ulcerative Colitis: Stabat Mater Dolorosa
- A Different Kind of Milk
- Ulcerative Colitis Takes a Hike
The world is ready for a fictional hero with ulcerative colitis!
Riding Out the Devil is the first book in my trilogy about Jack Harper, a horse trainer with UC.
Download your FREE copy at Hilary Walker Books!