/ climbing and ulcerative colitis

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treerik - on 28 Jun 2014

Hey Everyone,

just wondered if anyone here suffers from ulcerative colitis/crohns, or any other long term health condition? and how its affected your climbing/training/life etc?

i was finally diagnosed with full reach UC in jan this year after a week in hospital full of unpleasent tests and after 18 months of feeling like absolute hell everyday.. climbing of any kind was an absolute no go as it got to the point i couldnt even stand up let alone do anything physical.

i got back to the wall for the first last week after what feels like FOREVER and maaan was it good to get back!

it feels like a very lonely place to be as i know of no other climbers with anything similar and its difficult to explain how it all feels to my friend and family etc who dont climb and dont seem to 'get it'!

any thoughts, much appreciated

ScaredShitless - on 28 Jun 2014
In reply to treerik:

Hi Treerik, I do not have UC. However, due to cancer of the Bowl and the various procedures I have undergone to cure it, I suffer from similar issues.

I have been out of the game as it were for nearly 2 years now and miss it really badly. However, when I feel good I make sure I get out. I have been to the wall on the odd occasion and even been out to real rock. My main issue now is fitness, and the suitability of the venue.

I have been on camping trips, but only to places where I know there are good facilities. I adjust how and what I eat, probably over medicate, and take backup out on the climbs. I have yet to do any long mountain routes since I started my recovery, but view that as just a matter of time.

With planning and some adjustment you should be able to tackle most outdoor things again, but there will be some things you can not do. For example I'm not sure I will ever be in a position to do long Scottish winter days again. The trick is to identify these activities, decided that they are niche and not central to your outdoor life and focus on those activities you can do.
Daysleeper - on 28 Jun 2014
In reply to treerik:

Crohns here big chunk of bowl resected long time ago now. Mainly in remission, had a suspected flare up recently and had to stop climbing for about a month when the docs put me on highish dose Preds (systemic steroids) as they seriously affected my head. More worried about dropping someone or not tying in than falling off. The crazy fluctuations in weight are a total pain you get something sorted then a month later you're dragging 5 - 7% extra mass up the same wall.

Top tips: Always know where the closest toilet is. Don't climb on the days you feel like the world is dropping out of your bottom. Pack lots of decent quality bog roll.

Off to the alps shortly for second year running, more walking than climbing but the rope's in the bag and I'm really looking forward to it. Regarding other's I'm not sure my wife realises just how much additional stress there is for me in camping (Having an en-suite bathroom is a huge advantage but she and the kids love it so I get by.
lazzaw - on 28 Jun 2014
In reply to treerik:

Hi Rik

I was diagnosed with ulcerative colitis just over 3 years ago and about 6 months after I got back into climbing after a long break.

At that point I was just climbing indoors 1-2 evenings per week and could normally manage up to an hour in the evening without a toilet trip (just) although there were a few close calls and I would get disabling cramps that lasted a few minutes during the evenings.

Although I was tired and had achy joints I didn't find climbing that difficult.

I got diagnosed at the same time that I broke my ankle so was off work for around 6 weeks. The combination of rest, lack of work stress and starting meds worked well although I wouldn't generally recommend breaking bones as a treatment for UC!

My broken ankle recovery combined with heading outdoors to climb a few months later. Fortunately I responded well to medication, after a bit of faffing to find what worked for a few months.

Although I do still get some issues it no longer affects me doing what I want to do. Each and every day used to be planned around being close to a toilet and even walking the children to school in the morning (15-20 minutes round trip from home to school and then to work)used to be an ordeal and there were times that I didn't manage it without 'incident'

I can now go out for the whole day, go camping etc quite happily. First thing in the morning can still be an issue but I can generally plan around that.

If I am in a situation where it could be a problem (eg a whole day out) then I will occasionally take some loperamide (immodium) to avoid problems. If you think that may be useful make sure you talk to your consultant first as, with more severe types, that could be dangerous. Fortunately for me it is OK.

Happy to talk if you want to PM me
James D-G - on 28 Jun 2014
In reply to treerik:

Hi Rik,

I feel your pain. I was diagnosed with IBD 3 years ago (they can't decide if Chrons or UC). I've had a couple of 2 week stays in hospital & have gone through a lot of pred and other meds & a year a go was in an unhappy place. The IBD affected my joints, made me tired + ongoing flares.

However, now all is good I've finally found a combination of meds and lifestyle that seems to suit me. I'm back climbing again and can actually book trips in advance with out fear of having to cancel them!

I find I have to take things more carefully now and listen to my body a lot more. I'v also accepted it and that flare will happen, but if I'm sensible are manageable. I also cycle a lot more now as it fills the gap in if joint are too sore.

Send us a mail if you need to chat about anything.

Noelle - on 28 Jun 2014
In reply to treerik:

It's been about 10 years since I was diagnosed with UC, but I've managed to keep climbing during that time, with the odd month or two off here and there.

I found that once I had been diagnosed, things got a LOT better quickly and I've never had to be re-admitted back into hospital since my initial two-week stint (fingers crossed!) I too ended up not being able to walk and struggled on until I had no choice but to drag myself to A&E and finally get it sorted.

You now need to find the right treatment for YOU. It may well take time and some trial and error. The best bit of advice I can give you is to be a pro-active and insistent patient. Don't be fobbed off if things aren't right. Keep asking to see your IBD team. You can also keep a food diary and see if certain foods trigger bad symptoms and avoid them until your guts are in better shape.

You will find that some people have no idea about UC and will talk you endlessly about their irritable bowels as if it is the same thing. Others will say that UC is caused by junk food or something you have done to yourself and offer miracle quack cures. Try to be patient with them.

Family or friends might not realise the fatigue that sometimes comes with UC. They will be bemused that you can spend a whole day out multi-pitching, running or cycling but then need two days to recover afterwards. (Or maybe that's just me being unfit!) Try not to be too mean when they ask for sympathy for their hangover!

I ended going part-time in my teaching job as I couldn't cope with the long hours, stress and fatigue at first and I eventually left as I felt that my health was more important than working myself to death. You might find that your priorities change too after all this.

You can also message me if you want as well. Seems that there's a few of us on here now!
Daysleeper - on 28 Jun 2014
In reply to Noelle:

> Seems that there's a few of us on here now!

At this rate we'll have enough people to be able to have some sort of climbathon for 'crohn's and colitis UK'
Noelle - on 28 Jun 2014
In reply to Daysleeper:

With a splinter group for the Irish Society for Colitis and Crohns. ;)
lazzaw - on 28 Jun 2014
In reply to Noelle:

Oh yes, as Noelle said keep a track of foods that fire it off. I'm not too bad but a good diet helps. Junk food isn't good nor is rough cider! To be fair rough cider is bad news for most people's guts but more so for me and I do get my typical UC symptoms after a good session. Stuck in Somerset I do, despite the side effects, test this link more often than is sensible.

Stress can also cause symptom flare up. Try to arrange a life that is free from all stress. Simple!

My hospital has a very good IBD nurse service that is much more accessible than the consultants for advice and medication reviews.

One interesting thing they advised was to reduce the dose of mesalizine - some people find that at high doses it can actually cause side effects that mimic UC. I'd responded well to 600mg orally daily but as I still had nagging symptoms they put it up to 1200mg daily. As symptoms got a bit worse the consultant added in oral steroids, mesalizine suppositories, steroid suppositories and foams and was going to bring out the big guns immunosuppresant wise. My IBD nurse advised dropping the tablets back down to 600mg and all the symptoms went.

I'm not suggesting that would be the case with everyone, but having a nurse who dealt with the 'minor' things like that made a massive difference.

Alternatively take up fags - that is supposed to work!
earlsdonwhu - on 28 Jun 2014
In reply to treerik: I have had UC for 35 years. There have been some rough times but I have been lucky as I have not missed much time off work or had it affect my leisure. It has been pretty well controlled by Asacol........ Very very rarely have I needed steroids. I have been on expeditions to remote areas without UC related problems. My crap climbing career is just because of lack of skill and strength rather than UC! It has been suggested that the disease can sort of just fizzle out in the long term. Hope all goes well with you!

The Potato - on 28 Jun 2014
In reply to treerik:
Another UC sufferer here!
About 8 years, very slow improvement, finally got to the stage this year where I could compete in running again without... um running if you know what I mean.
It does take feckin ages to get the thing under control, untill then its a bugger to train because you go through cycles of active disease and remission so frustrating.
Ive had a good 18 months with only minor flares, had a more noticable one recently thats settling down again now, enough to stop me from being able to run anyway.

Keep a pack of pocket tissues with you at all times and in the car.
Get used to the notion of having to stop whenever and wherever and get good at being discreet in more public places.

In terms of medications, I didnt find NSAIDs (asacol etc) to be effective for me at all, steroids work well especially Predfoam or squirty bum foam as I call it, less side effects than tablets and much easier to use than Predsol (liquid). In the earlier years I learnt to hit it hard and fast as the longer I delayed steroids the longer it took to settle down and the more blood I lost. Ive not needed steroids for about 2 years now thankfully.
Im on azathioprine which has been great and has little or no side effects that Ive noticed.

Ive not been that good at keeping a record but I think it would really help to note down in a diary when flare ups occur (date) and anything that preceeded it (event, activity, work etc) that you feel contributed.
Along side this keep a record of foods and drinks.
There is no medically recognised link between foods and UC but everybody has their own notions and everyone reacts differently.

My triggers in order of effect are -
1 Mental stress or emotional upset
2 Milk proteins
3 Physical stress - overdoing it with exercise
4 Too many raw veg / fruit / beans / pulses
5 Alcohol
6 More than a couple of eggs a week
Post edited at 23:24
earlsdonwhu - on 29 Jun 2014
In reply to Daysleeper:

> At this rate we'll have enough people to be able to have some sort of climbathon for 'crohn's and colitis UK'

UKC Bumclub
treerik - on 29 Jun 2014
In reply to treerik:

Well blimey days! I must say i didnt expect a response like that! I thought maybe 1 or so might have it or have heard of it even but not that many! Its good to hear so many different viewpoints/coping strategies/ triggers etc.. i feel not as alone in all this when i read them! I must admit i have got used to the idea of 'going' whenever, wherever... and i to agree that pred does seem to be a wonder drug and is getting me back towards a remission type state yet again. Im now also on mercaptopurine and when i was put on azthioprine i had a real bad reaction, went temp blind, passed out, had splitting headaches,etc.... just not for me i guess.

May i ask if possible what anyones training 'schedual' looks like with this disease? Like i mentioned before ive only just got back on it and im wondering if i should be changing my training to suit? Maybe a bit less core work amd twisting for a while to give the guts a break? I have no idea, just thinking aloud really?!
The Potato - on 29 Jun 2014
In reply to treerik:
I dont think exercising any particular part of the body makes any difference, not for me anyway, the only thing thats been hard is running as thats quite stimulating.
Just train as you would normally, slow increase in duration and effort, as with anything, overdoing it too quickly will lead to problems of one kind or another
The main thing is just to be happy
The motto im trying to aim for is - de stress not distress.
The Manic street preachers had a good line in one of their songs - All the drugs in the world, can't save you from yourself.... so true.
Post edited at 20:21
shaggypops - on 29 Jun 2014
In reply to treerik:
Crohns for me...........not a lot of bowel left and on the biologics to keep in remission, but the biggest saviour for me has to be Colestyramine. It means going out for the day, be it climbing or on the bike is not a massive worry any more. It stops the sudden urgency for the "I need a toilet and I need one NOW". Talk with your IBD nurse about it to see if it's an option if going out causes worries.
Daysleeper - on 29 Jun 2014
In reply to treerik:

Generally the more exercise I do the better I feel...

I just need to remind myself of that when I'm at the end of a day in the office and all I want to do is veg out in front of the TV.

I knocked off the abs specific stuff after gut surgery and never really picked it up again, the only 6 pack I need is in the fridge.
L_Galvin on 30 Jun 2014 - whois?
In reply to treerik:

Hi I used to have UC but after having my large bowel removed and replaced with an internal pouch for me life is a lot better, I still have to be careful and with food choices because I still get spasms and the length of time I can climb for, so I try to plan carefully. I still have all the thoughts and fears going around in my head so I only have a small amount of food for breakfast then I wont eat until the day ends its just the only way for me to stay out longer not ideal but I want to make the most of my second chance.I find the more exercise I do the better I feel too, I need a little longer to recover but that's fine. I hope your well at the moment and if you want to ask anything please message me
L_Galvin on 30 Jun 2014 - whois?
In reply to treerik:

Forgot to say I'm a Pilates instructor and find Pilates makes a huge difference to me, it has many many benefits.
treerik - on 01 Jul 2014
In reply to treerik:

now thats a thing.... pilates/yoga etc... ive read a few places that these can really help with UC, espec with relaxation part of yoga for 'de-stressing' and helping with aches and pains and the like..

now ive never tried either. know very little about either, but am willing to try whatever might help of course.

im a tree surgeon (climber of course) ;) by trade and when im feeling well enough to work, the next few days i have aches and pains much more than i used to when i was a 'youngun'

im guessing it would probably be worth me trying either yoga or pilates (i get free classes as part of a gym membership) but have no idea which would be best to try (or both)? any thoughts... as always.. much appreciated!

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