I am interested to hear how other people have approached training whilst having a long term health problem. Has anything helped you? Have you had any good tips or experiences to share?
Everyone is different, but you never know, your experience might help someone else in a similar situation…
For example, I have a liver problem and in the last few years it would flare up after a big effort, think ramp test or race. After doing a lot of research (definitely not a doctor, but did ask my doctor who was pretty unhelpful - happy to share what I learnt privately) I have focused on things like diet, sleep, t-total, probiotics, and avoiding high intensity whilst in an ‘untrained’ state. Seems to be helping so far and hopefully this allows me to get back to racing and avoid long term antibiotics.
Fortunately my health issue in 2018/19 wasn’t long term and after recovering quickly I was able to attack my chemo harder than it could attack me. I listen to this coach a lot on YouTube and he talks about personally having to manage ulcerative colitis.
I have “Dairy Persistent Headaches” and migraines likely caused and/or confounded by my Cervical Radiculopathy. I manage these issues, among others, through meditation, medication and PT. Furthermore, during exercising/cycling I find relief and allows me something other that I can focus on. Not to mention, it’s a pain I’m in control of and a conscious decision to push through. Cycling has been a life line for me.
I’ve got Inflammatory Bowel Disease (IBD) - Ulcerative Colitis, to be exact. It’s an auto immune disease which triggers my insides to attack themselves and creates all sort of inflammatory problems for me. It’s sort of the sister disease to Crohns disease.
Although I am fortunately in remission with the aid of some heavy-duty ($$$$) biologic medicines, I still experience flare ups from time to time - mostly triggered by stress or the end of my medicine infusion cycle. It’s been quite the journey to learn how to train and manage a chronic illness. My biggest (very generalized) takeaways have been:
Listen to my body - if it says rest, I rest
Sleep is everything
Eating nutrient packed foods helps me feel more normal (although I have to be very careful with fresh veggies and fibrous foods)
Having a support system - family, friends, etc makes a huge difference. Lean on others when you’re down
My IBD diagnosis opened new doors for me and has given me new opportunities I didn’t expect. Together with my coach/friend (who is one of the few pros who is open about having IBD), we’ve created and are building Ride4IBD - an initiative to support other athletes with IBD, to Ride, Inspire, and Challenge what’s possible with a chronic illness.
Another sufferer of UC here. I’m in remission but I’ve had a tough few years. A big turning point for me was cutting gluten or most of it out and it helped massively. I did an Ironman whilst flared up. It was horrific. I have no idea how I pushed through but I’m in a much better place. I try to sleep plenty and carry toilet paper everywhere. Best of luck to you. I’m sure it’s tough at times and can be difficult to stay motivated
I have a chronic kidney disease (don’t know an English word for the exact condition, sorry).
The nature of the problem means I can help it a lot by avoiding certain foods (I rarely eat meat, I avoid alcohol). That helps, but I still have periods with symptoms, either because of other things influencing my disease or because I don’t have the spine to avoid those things totally…
But apart from that, I have found that the most important thing is to just accept, that I will never be able to be as good as many of the people that I ride with. On a good day, I am able to follow the group, but then we plan a trip to go riding some mountains and they all train consistently for several months. I just have to accept, that I will have some weeks, where I am not able to ride my bike. Nothing to do about that. I will be one of the last riders to reach the top of the mountain.
But I will reach it. Because I have decided that being the fastest is not important. It’s not possible for me, so I will not aim for that. But I am doing my best…
And then we all have a beer at the top of the mountain and I know that tomorrow I will be even more crap, but hey, that’s life…
I also have UC and I am on my first round of steroids… the things I’d never thought I’d put up my butt until you want to feel normal again… haha!
Your right, it is such a journey. I think I’m working out that high intensity exercise is actually causing me more distress than benefits. I’m looking to go to a low-moderate training plan where I’m sitting below 80% of my VO2 for most of the plan.
Thanks for sharing your journey - I also looked at your website - awesome work!
So glad to be able to connect! It’s pretty incredible what we can achieve in spite of health challenges. It’s why we created Ride4IBD - to give hope to others that anything is possible, and support is out there from those who’ve been there, done that.
I have eosinophilic esophagitis (EoE). basically, if i eat too many trigger foods it will start to cause my throat to constrict (different from anaphylaxis) and over time make it very difficult to swallow food. It caused other issues as well, but that is the most common symptom. before I was diagnosed, it got to the point where even drinking liquid caused anxiety. I once choked on a cheeseburger. This made on bike fueling very stressful.
It took me like 1.5 years to get diagnosed, but I have been very introspective on which foods cause any issues. I also found a cocktail of OTC meds that is subsequently being tested in clinical trials for EoE.
Similar to what others have said, you have to listen to your body. One of my trigger foods is tomatoes. I will sometimes cave in and have a slice of pizza or some pasta. Typically, isolated events don’t cause too many issues. However, this morning I had some really bad stomach issues and couldn’t breathe as well. I planned on a specific workout but couldn’t get my breathing in control and did something else. I suspect it was because I had some pizza on saturday night.
I’m working those triggers out now. I think one trigger at the moment is actually high intensity exercise… yay! I love smashing myself on the bike with a good threshold or VO2 workout but it increases the inflammation in my body and therefore triggers a flare in my guts and I end up on the toilet 10 times over the next 12 hours…
Patience is what I think the lesson is…
Thanks for sharing your story mate. I hope they the clinical trials go well and there is some relief.
I have Crohn’s disease, albeit a relatively mild form of it (no surgeries). Diagnosed in 2007 and only recently (last few years) went on a biologic drug (Entyvio). I tried Remicade briefly before that, and it was effective, but resulted in major side effects (rash breakout). I’ve been taking Entyvio for 2 years and the first year, I didn’t notice anything. Only later did it seem to become effective, but then that coincided with dietary changes, which I’m thinking might be playing a bigger role in how I feel day to day now.
I’ve been doing pretty well for the past year (by that I mean most days I have zero issues, no bloating/gas, no discomfort pain, solid bowel movements, good energy) and I attribute that mostly to my diet. I actually avoid the worst parts of Crohn’s so long as I avoid trigger foods. Problem is, at least for me, after a period of feeling good, I let my guard down and allow myself to eat a little bit of what could be a trigger food, and then I suffer, like last night. I hadn’t had a flare in so long, forget how debilitating the pain can be. Things that will trigger a flare for me are brussel sprouts, brocolli, apples, all things I like unfortunately. But it’s depressing how I can feel great for the week and then get hit with a flare and be basically reduced to fetal position as I ride out the pain.
I eat a heavy meat/egg diet with white rice and potatotes as my main carbs, very simple diet but that’s what I naturally eat anyways. I supplement with protein shakes and raw kefir. No greens because greens, esp leafy greens and raw veggies, can trigger both IBD and IBS for me. Trying to eat more fruit. I find I get all necessary nutrients and my energy seems good.
Not so much one medical issue, more like a series. The first year of the pandemic I had hormone treatment, which triggered the menopause, then a total hysterectomy. Less than a year later breast cancer diagnosis, leading to surgery and radiotherapy. The radiotherapy seems to have impacted my esophagus to some extent, as I have intermittent swallowing issues - feeling like food is slow to go down. It comes and goes and there doesn’t seem to be a pattern.
I know I’m lucky that the cancer hadn’t spread. I’ve just lost my brother to pancreatic cancer.
I’ve had suspected primary hyperparathyroidism for over a year now. They have just determined that the calcium in my urine is so high that I am at risk for kidney stones. I’m waiting for scans on my throat to see if I have a tumour on one of my parathyroid glands and surgery would be the likely outcome.
Myself and my partner are booked in to BC bike race this year - 7 day stage race in BC Canada. At 56, if I put it off I might never do it.
In terms of training, I always start at the bottom of the pyramid, building a strong base and work my way up. I was doing well, consistent, until I got a chest infection and took time to say goodbye to my brother.
Coming back to training, the low end fitness was still there and I’m starting to layer back up now.
I’m looking at what I can do to minimise the risk of kidney stones. I’ll start making my own energy drink with lemon juice in…etc
Something I’ve always felt solid and reassuring is Strength work. I use Dynamic Cyclist videos. It works such a wide variety of muscles. I can and do, go back to week 1, work out 1 and start again when I have to. Strength work engages proprioceptive sensory systems, which helps reduce anxiety, alongside meditation.
I don’t know what I’d do without training.
Respect to everyone who’s shared their story on this thread
(My oncologist sent me for bone and CT scans so we know there’s no cancer lurking anywhere)
I am in the same boat in terms of diet, I find that if I eat simpler it’s better for me. High protien with rice and pasta and avoid uncooked veggies and foods that can physically distress my insides.
How do you find training? Is it something that is a protective factor or does it cause distress also?
I think your real challenge is your disease is not in control. Get it under control and then exercise is easier.
Steroids…they are a blessing and a curse. Had tons of energy on them but that is now 40 years ago.
I have crohns disease but I am on biologics. For me exercise all revolves around the timing of eating vs exercise. Resolve the right timing and you should be fine. Rest and recovery are crucial as well.
Although Entyvio has gotten my UC under control and I’m in clinical remission, diet is a HUGE factor for flare ups. I have to avoid raw veggies and most greens as they simply don’t agree with me. As has been stated numerous times in this thread - simple, easy to digest foods are my staple.
Occasionally I’ll “splurge” and have steak or something - and it’s a very quick (and uncomfortable) reminder that it’s hard for my body to process.
Now that I have it under control, training feels great most days. I don’t have a period in my past life where I can really compare (i.e. pre-Crohn’s and exercising this much) but I find I’m able to train well.
I started cycling after I got my Crohn’s under control so I can’t say what it was like before. But with running, there’d be days where I’d get what I call a “GI cramp” if I pick up the pace enough. I could work through it but it wasn’t fun. Same with lifting, I could work through it, but not until I had Crohn’s under control did I realize how much energy I was missing.
I recently had a flare as I mentioned, what’s nice is at least I find I can recover from it quickly. I took 1 rest day and was back on the trainer the next, feeling fine. This may sound cliche but I also think a big part of dealing with this is having a positive mental outlook. Being really active, it can be really disheartening when you’re not feeling well, or worse, get a flare and get put on your back. But the pain is temporary, you can get over it and come out just as strong as before.
I agree, unfortunately, I think your right re my condition is not under control and that is the key metric at the moment.
It’s so frustrating because pushing myself on the bike makes me feel so great mentally and physically (except my guts) so it’s so tempting to “just see if it is ok this time”, and of course it results in increased acute symptoms. I don’t like to “take it easy”… maybe that’s the lesson, it probably is.
Also I feel that I’ve been unwell for such a long period of time, as this is the start of my journey, so I don’t actually remember what it’s like without this.
Thanks for your encouragement all, it’s been a game changer and makes me feel not quite so alone.
