shnjmsn
Veteran
- Location
- Somerset Levels
Does anyone here have Crohn's ? I'd be interested to know f you do and if or how it affects your cycling ?
Crohn's disease
- Thread starter shnjmsn
- Start date
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ColinJ
Puzzle game procrastinator!
- Location
- Todmorden - Yorks/Lancs border
I was diagnosed with Crohn’s around 17 years ago. Have you been diagnosed @shnjmsn ?
Crohn’s as a complex auto immune disease affects everybody differently. The biggest issue for me is stamina/fatigue. Not just on a ride but my recovery. It is generally well controlled with a self-injected biological every two weeks.
Do you have any specific questions? Happy to answer the best I can.
Crohn’s as a complex auto immune disease affects everybody differently. The biggest issue for me is stamina/fatigue. Not just on a ride but my recovery. It is generally well controlled with a self-injected biological every two weeks.
Do you have any specific questions? Happy to answer the best I can.
OP
OP
shnjmsn
Veteran
- Location
- Somerset Levels
Yes, diagnosed 36 years ago !! Also in self injected every two weeks nowadays….. energy levels come and go but have done some good regular miles in the last ten years and I think it helps a lot !
My sister inlaw has both small bowel and large bowel crohns.
Being a doctor she decided not to have surgery and has lived off specially made nutrition packs fed directly into her vein. She has had another surgery last week to install a stainless feed port as she regularly get bacterial infections.
Her health goes up and down and regularly spends time in hospital. She is tough as old boots and keeps going.
Being a doctor she decided not to have surgery and has lived off specially made nutrition packs fed directly into her vein. She has had another surgery last week to install a stainless feed port as she regularly get bacterial infections.
Her health goes up and down and regularly spends time in hospital. She is tough as old boots and keeps going.
It definitely does!
My number one rule is to keep pushing myself. If I don’t the Crohn’s wins. That’s not going to happen if I can help it !
I was originally diagnosed around 2008.
In 2018 shortly after completing RideLondon (coincidentally raising money for the Crohn’s & Colitis charity) I started to become acutely unwell. Long story short is that I had a very large Psoas abscess (caused by Crohn’s leading to a long hospital stay and months off work) I then relapsed and had to have an ileostomy. Thankfully I was able to cycle still albeit at a very much reduced level and eventually had a stoma reversal.
The damage to my Psoas muscle and resultant scar tissue continues to be a major problem (ask Colin re our bike ride a couple of years ago!) but, it is what it is and, despite this challenge, I managed to ride over 7000km last year!
ColinJ
Puzzle game procrastinator!
- Location
- Todmorden - Yorks/Lancs border
Yes, you did fail in spectacular fashion on that one hilly ride. OTOH, you have left me trailing behind you on other ones!
ColinJ
Puzzle game procrastinator!
- Location
- Todmorden - Yorks/Lancs border
Understandable! (Though the Mirfield ride was after that, wasn't it?)
I am currently avoiding the cold and doing Training Peaks Virtual rides instead, though I will hopefully be venturing outside in the next week or so to recce a 70 km route for a forum ride from Hebden Bridge later this month, or early February if bad weather forces a postponement. Watch out for that, if you are interested.
OP
OP
shnjmsn
Veteran
- Location
- Somerset Levels
I drift from 8000 miles a year to about 1000, depending on the health ! ROUVY has changed a lot for me and it means I can squeeze an hour in between work stuff pretty much anytime. I’m a firm believer good fitness really helps my Crohn’s and I’ve let it go a bit in the last 12 months so I’m going to make sure I keep a decent level of cycling this year again !
Heavymental
Active Member
My partner was diagnosed a couple of years ago and has the usual levels of discomfort, occasional extremely painful flare ups but no surgery as yet. Her bloods on her current treatment are not good recently so she is switching to an IV drug given periodically (sorry she's not here to remind me of details).
I'm interested that maintaining fitness generally is beneficial? She is active but not really taking regular aerobic exercise above walking. Might more regular aerobic activity be useful?
I'm interested that maintaining fitness generally is beneficial? She is active but not really taking regular aerobic exercise above walking. Might more regular aerobic activity be useful?
Exercise helps fight infection and is good for mental wellbeing too.
scientists believe that exercise can be helpful in managing the symptoms of Crohn‘s.
if your partner hasn't looked at the website below, it has a great amount of information and support.
https://www.crohnsandcolitis.org.uk...r-colitis/being-active-with-crohns-or-colitis
scientists believe that exercise can be helpful in managing the symptoms of Crohn‘s.
if your partner hasn't looked at the website below, it has a great amount of information and support.
https://www.crohnsandcolitis.org.uk...r-colitis/being-active-with-crohns-or-colitis
Heavymental
Active Member
Thanks Buck, will take a look.
laurentian
Senior Member
Not my personal experience but my wife is (or at least "was") a Crohns/Colitis sufferer. Her flare ups were quite frequent and deeply unpleasant and seemed to be brought on by stress, anything more than a glass of wine, lack of proper sleep and strenuous exercise etc etc.
This was controlled to a degree by daily steroid tablets and more serious medication during flare ups.
About 2 years ago, although she has always maintained a good level of fitness, our daughter's wedding later in the year prompted her to "get in better shape".
A friend of my now son in law is a personal trainer who puts bespoke fitness, strength a diet programmes together using video and photographs etc to continually monitor progress and adjust the programme as things progress.
As there was considerable emphasis on muscle building, there was a need for my wife to ingest more protein. However, my wife has been vegan for about 8 or 9 years and vegetarian before that (originally going vegan to improve her Crohn's which worked to an extent) and so getting enough protein was problematic. The answer was to include vegan protein powders (pea protein I think) into her diet (in shakes and also into morning porridge and so on)
Since the inclusion of the protein powders into her diet, her Crohns/Colitis is (touch wood) non-existent.
The improvement in her well being is quite incredible and I believe there have been studies into the effect of increased protein to combat the illness.
This was controlled to a degree by daily steroid tablets and more serious medication during flare ups.
About 2 years ago, although she has always maintained a good level of fitness, our daughter's wedding later in the year prompted her to "get in better shape".
A friend of my now son in law is a personal trainer who puts bespoke fitness, strength a diet programmes together using video and photographs etc to continually monitor progress and adjust the programme as things progress.
As there was considerable emphasis on muscle building, there was a need for my wife to ingest more protein. However, my wife has been vegan for about 8 or 9 years and vegetarian before that (originally going vegan to improve her Crohn's which worked to an extent) and so getting enough protein was problematic. The answer was to include vegan protein powders (pea protein I think) into her diet (in shakes and also into morning porridge and so on)
Since the inclusion of the protein powders into her diet, her Crohns/Colitis is (touch wood) non-existent.
The improvement in her well being is quite incredible and I believe there have been studies into the effect of increased protein to combat the illness.
Heavymental
Active Member
Just to say this reply was useful and led us to make big changes to diet. My partner was also vegan and has been for over 10 years but upon reading this post and doing some further research she has started eating eggs and fish and some chicken too. The paper that we looked at talked about the benefits of protein to the cellular structure of the bowel so it made sense to switch to better sources of protein. She doesn't have a protein shake every day but now eats 2 boiled eggs for breakfast and is frequently eating more animal protein.
We also read up more on diet and have managed to reduce the amount of pain she is in through cutting back on insoluble fibre. We realised it was problematic due to strictures meaning fibrous food caused painful mini blockages. Unfortunately it's been quite a change from a very fibre heavy diet of veg, pulses and seeds to more plain foods but the improvement to frequency of pain has been worth it.
The other problem is iron as her levels were very low due to absorption issues. Exercise is difficult as she gets out of breath due to the low iron levels but the doc has booked an infusion which should make a big difference.
