Several years ago I was diagnosed with Ulcerative Colitis.
In the past several years I’ve suffered with a condition called neutrophenia, which is low white cells.
I’m not sure how this has or will be affecting my training and/or if my training could be causing it or in someway increasing it.
Whenever I’ve spoken to my consultant I’ve been ensured that I don’t need to worry about it but I feel like I can sometimes take longer to recover from workouts and that I get colds and such like more often if I’m training hard.
Does anyone have any experience training with IBD, have you found anything which makes the disease worse or better?
It would be great to hear from anyone else training with these diseases and their experiences.
I’m currently receiving biological therapy by way of infliximab infusions every 8 weeks. So no steroids or immune suppression or modulation.
I have no specific advice but colitis is an inflammatory disease so it could easily have an effect on your recovery period. Likewise the neutropenia will not help with avoiding coughs/colds etc.
I wish you all the best and hope you can get some useful advice. My wife has Lupus and is immunosuppressed so training has become much harder. She did manage to train for and complete the London marathon last year though.
This is one I can understand a lot. I had to have a colostomy in 2010 due to colitis. I have no advice because I was in my fat lad mode then but I can 100% sympathise. There are some excellent cyclists at ostomy lifestyle athletes on Facebook who may be able to give you some advice on how they went before surgery
I have had Crohns most of my life. Two major surgeries 27 years apart with long periods of remission. I started riding my Bike a few years ago after my last major surgery. I started riding to be able to do something as I was advised to not run(major piece of mesh keeps my insides together after my last surgery). I am now 58 so age will play a factor in my recovery process as well.
For the last three years I have been using Trainer Road. I found getting started on a trainer to be very very hard. I had a weak core to work on…and had been seriously ill for a number of years. Muscles needed a lot of time to adapt. I rode fairly consistently 2-3 times a week at the start. Muscle recovery/tightness were what I struggled with. Taking food early on my rides did make a difference in how I handled the 50 -90 minute timeline. Increasing muscle endurance was my biggest challenge.
A year ago I was regularly going to physio to deal with the tightness and aches I would get. Doing various exercises to deal with muscle imbalance helped. This year the riding was a lot easier. Muscles finally are not getting hurt from my riding. Cardio has improved significantly. Rides that I used to find impossible to deal with are now able to be completed. For example riding at 120% FTP for the required interval was something I just couldnt do as the intervals progressed The trainer would lock up as I couldnt maintain the cadence in Erg mode. A combination of greater muscle strength and cardio now make them able to be done.
For me riding every second day is fine. Riding back to back days ie Saturday and Sunday is what I avoid as I would often just ride too hard and get myself hurt.
If I do get tired I will skip a day. The hardest thing at times to do is get on the bike and stop as you realize you are only going to hurt yourself.
As to the disease itself. I changed my food roughly when I started to ride. I removed sugar from my diet and tend to eat more non processed foods. My crohns disease doesnt let me eat a lot of leafy vegetables and roughage. I have found that ensuring I eat protein at each meal is critical to my recovery and well being.
I also changed my sleep habits and now consistently get 7-8 hours of sleep vs the 5-6 I used to function on.
If you have any specific questions re the disease/riding dont hesitate to ask.
I have UC and, for years, trained normally, albeit only during remission. Luckily, while my flare ups are quite severe, i have enjoyed long periods of remission in between. I get stomach cramps when i do really high intensity stuff and i avoid sugary gels like the plague. My main problem these days is sleep, which hasn’t been the same since i was treated with IV hydrocortisone (post-infliximab, which didn’t work). Now i struggle with fatigue and (slow) recovery. Unfortunately, with UC, every person’s experience seems to be different - there are not many rules that work for everyone. My inspiration has always been (5x gold medal Olympic rower) Steve Redgrave, who has UC (as well as diabetes now).
I’m 34 and I’ve been diagnosed with Crohn’s/Colitis since I was 12. I currently take Humira. My personal experience has been that exercise, historically only strength training, but since April has included TrainerRoad, does wonders for keeping my Crohn’s in remission. I’ve never felt better since starting TR. Whenever I stop exercising regularly is when flare ups occur. Diet of course also makes a big difference. Low sugar, low processed is important, but I’ve also found high protein and high soluble fiber (oats, avocado, black beans) to work wonders. There is a growing body of research around Crohn’s and exercise. For example, this bicycling.com article discusses how cycling can improve your gut bacteria, increasing the amount of anti-inflammatory variety in your gut. I would encourage you to stick with it and try including more foods in your diet which boost your immune system due to your white blood cell count. It’s frustrating how long it can take, but persistence and experimentation can help.
I’d never considered that exercise could help my UC, I suppose I had always thought that it would increase the stress on my body. Perhaps I might go back and look at the timings of any flares and if I had been training or not.
Interesting to read your comments as it mirrors what I have found over the years. Cutting back on sugar and low processed is very helpful for me. I did both the change in diet and the exercise at the same time so hard to say if the cycling or the food change was the biggest factor. I do feel better though after riding.
I know this was posted a while ago but I was diagnosed with moderate to severe Crohn’s 4 years ago (I was 20 then) and is why I started cycling. I am on Humira and it helps some. I have found, like others here, that when I’m most consistent I feel my best. I do have to be careful with recovery drinks and what I eat after my workouts. I have found that I need more recovery time than what’s prescribed. I try to take a week off completely every month or two. I always come back stronger than where I left off, and I can’t help but think it’s due to giving my body (and gut) time to rest and heal.
I was diagnosed with Crohns 18 years ago. I had resection surgery 13 years ago.
Surgery was the catalyst for getting back into cycling after several years off. The initial days and weeks after surgery reminded me that the human body is amazing, and able to recover from so much. Seeing physical progress on a day by day basis was uplifting and empowering, and returning to cycling was my way of seeing that progress continue.
A few years after surgery I was in the shape of my life, but then things started going backwards. I struggled with low iron levels for about 4 years, which made cycling difficult, and resulted in a lot of frustration. I later figured out that this was due to Crohns being active again. The medical profession weren’t exactly helpful. As you guys will know, the treatment can be as bad as the condition! I started searching for my own solutions out of desperation. I didn’t want to lose the health and fitness that I’d worked so hard for.
It took a while, but I found an answer. For me, changing my diet to ‘whole food, plant based’ was quite literally a life changer. Eating fruit and veg is somewhat counter intuitive for those of us with compromised digestive tracts. I have to be quite careful of veg in particular. My diet is now largely based around starches (rice, potatoes) beans/legumes and fruit. Frustratingly, there is clear science supporting this approach, but the doctors treating me were unaware or dismissive of it.
After 40 years of eating a standard western diet, it was quite a challenge to change, but one that was well worth the effort. I started noticing improvements immediately (which helped convince me that I was on the right track) but it was probably 6 months or so before the healing was far enough advanced to relieve all symptoms. Since then, the last 4 years have been awesome. No meds, no problems, and (at almost 45) I am now the fittest I’ve ever been (FTP over 4.3 W/Kg).
Throughout my journey, the number one thing I’ve learned is that being healthy is more important than being fit. If you are struggling on the bike, then taking time off to get yourself right again is more important than any workout you can do. The bike will be ready and waiting for you when you are ready. I’ve had several long lay offs over the years. It’s not easy to keep coming back from them, but it’s definitely worth it.
Hi there!
My name is Martin and I am new to TrainerRoad, just signed up a few days ago to structure my training a bit more.
I am diagnosed with Crohns disease since about 25years and had bowel cancer resulting in a colostomy 5 years ago. However, I am still a cycling and running enthusiast, still trying to be somehow competitive, at least compared to my pals.
I am really pleased to have found this forum here, as it is very difficult to find valuable resources on this topic. I hope we can talk about different training regimes, for example about HIIT vs. LID vs. SST and what works best in our situation.
I’m very interested in related science because I think trial and error may work, but the penalty with a triggered Crohns thrust or increased inflammation activity is not really desirable. IMHO what does not work is to stick with training plans written for healthy people.
I will try to put here some of my personal findings and research results, always happy to discuss.
First things first: Does exercise help in getting better or does it increase inflammatory processes?
In my n=1 experience, it is really difficult to judge. There always have been times when increased training resulted in higher crohns activity which resulted in blood loss which quickly impaired performance. So the training effect was more than compensated by the loss in aerobic power. On the other hand, training relieved a lot of stress induced inflammatory effects and I have seen that in my daily HRV monitoring.
However, science is also a bit indifferent, but generally suggests that training is not harmful.
In this recent (IMHO important) study on young patients, the effect of HIIT training and training at moderate intensity did NOT increase inflammatory markers (such as TNF-alpha), but increased immune cells. “Youth with Crohn’s disease can engage in distinctly different types of exercise without a significant acute exacerbation of inflammation.”
Exercise and Inflammation in Pediatric Crohn’s Disease
This study suggests that High intensity and moderate intensity training does not do any harm:
High-intensity interval training and moderate-intensity continuous training in adults with Crohn’s disease: a pilot randomised controlled trial
Quote: “We hypothesised that supervised endurance exercise training (either as HIIT or MICT) is a safe and effective strategy for improving cardiorespiratory fitness, fatigue, quality of life and mental health in people with CD.”
However, still some further studies are suggested to fully understand the effects, whether being harmful or beneficial.
In another study Alan Couzins pointed me at, HIIT training was associated with an increase of inflammatory markers, which basically is no surprise, as inflammation is the starting point of adaptions.
Cytokine and Sclerostin Response to High-Intensity Interval Running versus Cycling
I have been unsure for a long time about my training. At least I am at a point that I have stopped worrying too much on whether this or that workout may be harmful to me. If my gut feeling tells me to that today is time for putting the hammer down, I will go all-out, and if I feel that I better take it easy, I will rest.
Cheers
Martin
edit:
Disclaimer: I am no doctor. All written above is my own opinion, not an advise how to cope with our disease
For me, an important aspect of exercise in helping me is the mental side of things. Cycling gives me an identity of being an athlete. It gives me an outlook of optimism as far as health goes. Seeing how the human body adapts to training stimulus is a reminder of how wonderful and fantastic it is, and shows that we are basically designed to be healthy.
That identity is what spurred me on to find answers and solutions to a 3 year battle of blood loss/trying to keep my iron levels up. If I hadn’t been so focused on trying to get back into good shape then I’d probably have submitted to the doctors viewpoint that my body had failed me and that I needed medication (with a looooooong and scary list of side effects, which would have seriously hampered my cycling!).
By contrast, I see myself as someone who is healthy and fit. I don’t define myself by a medical diagnosis. The power of the mind can’t be overstated or overlooked
Having said that, now that I’ve found a solution that works for me, I believe that dietary changes are more important to me than exercise in continuing to manage my Crohns. I’m pretty sure I could stop cycling and still remain healthy, but I’m convinced that if I returned to my previous eating habits then I’d soon run into problems again.
I strongly believe that Crohn’s is mainly influenced by dietary and mental things. My cycling training impacts a lot on the mental side, is it good (when I have nice rides, accomplishments or social rides) or bad (when I sometimes realise that my performance goals may be far out of reach).
Not to speak of the dietary causes, which are out of question. Diet is probably the main factor for staying healthy.
However, we here at the TrainerRoad Forum may be interested on increasing (cycling) performance as good as we possibly can. For me it was really important to understand that training itself at least shouldn´t do a lot of direct harm by boosting inflammations - as long as it does not cause exceptional “stress”. As training itself means stressing your body to create the adaptions which are making you faster and stronger, it is important to understand on how much stress is acceptable. Even healthy cyclists may face burnout caused by too much stress, so our bodies are more exposed to that risk (I may do a seperate post on this in future). New regimes like polarized training schemes are questionable for Crohns patients. The general advice from doctors is still to take it (very) easy, but the links I have posted do not support that approach.
Yesterday was time for an FTP test. Start my ramp test…15-16 minutes in have to stop to run to the bathroom. Well that doesnt work well for a ramp test.
Today. Get ready to start the test…guess what…up to bathroom just before starting…Successful ramp test.
Sorry to jump into an old convo but I am also experiencing UC and looking at how exercise related to my symptoms and disease trajectory.
I have recently found that HIT programs cause me to experience acute flaring of my symptoms so I’m looking at what other programs support anti-inflammatory responses in the gut rather than a pro-inflammatory response that HIT seems to do for me.
According to your studies and some other studies that I have looked at it seems that <80% of V02 seems to be the “safe” limit. Do you know if TrainerRoad uses <80% of VO2 of a % of FTP and if so how have you gone about choosing the appropriate training program for yourself.
This might be old now but any help would be appreciated. Thank you.
After 13 years of remission my crohns is active. Waiting on new meds at the moment. My main culprit is fatigue. In hindsight it isnt hard to look back at my last few months and see how it has impacted me and my riding. My perceived lack of desire to ride hard was truly impacted. It was my work busy season so I attributed it to work stress. I know now it was my disease flaring.
Now the challenge is to just see how I can enjoy my riding. Some days I feel good and do my ride. Other days it is a struggle so I just take it easy.
Just thought I will update from time to time. Chronic disease is a struggle to know if what you are doing makes sense. Is exercise good or is it harming more then it is helping. Cycling really gave me my health back as I didnt start cycling again till 9 years ago after a 30 year hiatus. For now I will just do what I enjoy, which is to ride how I want and when I want.
Sorry to hear that Brenth, it’s awful when it does rear it’s ugly side again.
I had my four yearly colonoscopy last week, got the all clear again luckily.
I suffered for years and years, extremely horrible time in my life. I eventually found out by alternative diagnosis that all my Crohns and colitis was being caused by gluten. I cut that out of my diet along with a lot of processed food, which is a little of a by product of cutting the gluten out anyhow. I came off the nine tablets a day and haven’t looked back since. I still feel tired, but a can put that down to work and other life stresses these days.
I train five to six days a week and compete for a local race team, time trials as I’m older now. I do struggle these days if I do not get a good 8hrs sleep a night, I track my sleep & HR variability and just back things off if I feel tired or run down.
Only thing I’d say is perhaps drop the training for a while and just go out and ride your bike for fun, I’ve often found that is enough to keep me topped up and reignite the passion for competing.
Oh mate - sorry to hear that your back in the pit! I hope since you posted this your back on track!
As someone who lives with Ulcerative Colitis, medicated now thank the Lord, but I truly beleive that until you’ve lived with chrinic health then you truly don’t understand it’s impacts.
All the best with your recovery from this flare up!
