(Hopefully) an inspiring story about my life with Ulcerative Colitis!
Hi - as a few people have now asked me for any tips on dealing with ulcerative colitis, I just wanted to share my experiences of ulcerative colitis in the hope that it may help some of you out there with colitis!
I've had colitis for around 17 years (I'm 33 now (feb 2014). In the early days of colitis (first 4/5 years or so - while at college/university) it was quite bad - I had the usual severe symptoms - frequent toilet visits, stomach cramps, blood & mucus - horrible as you know if you have colitis, and I really feel for people going through bad flare-ups (I don't know if there are many worse diseases out there - and thats why I've wrote this to try and help anyone out there!).
I'd been hospitalised once when it was identified as quite bad after a colonoscopy - and apparently i have total colitis or pan colitis - so not great - and I have seen pictures of my bowel from colonoscopy's when my bowel is inflamed - and it's not great viewing. I have been on steroids in the past (prednisolone) on numerous occasions to control fare-ups, and they have worked and brought my symptoms under control within a few weeks an then it would be onto a maintenance drug. Anyhow - onto some good news…
Over time as i have got older the colitis symptoms have got easier - as I said I was at my worst from the ages of around 16-21. I have had flare-ups since - but they didn't seem to last as long. I do now consider myself quite fortunate as at 33 years of age I'm currently in remission and have been generally ok with the disease for around 8 years - with no operations either. I've had a few small flare ups that lasted a couple of weeks in the last 8 years - a couple I would attribute to the colon prep & after-effects of colonoscopys, and a couple of flare-ups which i attribute to picking up a nasty winter bug which, while giving everyone around me at work the runs & sickness - it set my colitis off. The treatment for these flare-ups was a course of steriods for about 8 weeks. Even though I don't like going on steroids due to potential side-effects - I haven't had any side-effects off these luckily (apart from a little bit of anxiety) and have found them to be the most effective short-term treatment, but something I have never wanted to be on long-term. As it stands now at 33, my last major flare up was around 4 years ago and I haven't felt as good since before I was diagnosed with colitis. Touch wood! :-)
So here are a few things that have helped me. Now I'm no qualified doctor - and I don't have a wealth of knowledge on colitis - so I can only base my insights on my own experiences (and we are all different - having different biological make up - so take that into account - and maybe talk to a qualified nurse/doctor on any of the things I have listed here - especially if you have a serious case of colitis at the moment, as I tried all these things non-during a flare-up!).
So... I think one of the reasons I improved is because of a willingness to change my lifestyle a bit and try and learn as much as I can about this horrible condition. I've always been one for trying to treat the cause and not only the symptoms and I wasn't satisfied that the only reason to treat colitis was with medication.
The first thing I done yonks ago now (10 + years) was cut out milk from my diet - it was hard at first as i loved it - but over time I've got onto soya milk - and now hate the taste of milk. A nutritionist told me to try this - and it was at the point i'd try anything - it was said that milk can cause more mucus in the gut - how true that is i don't know - but it could be one of the factors that have helped me.
Another thing i do is take a high strength omega 3 oil tablet every day (the highest strength I can get my hands on)- apparently these have anti-inflammatory properties, which is vital for any inflammatory diseases like Colitis - so also look out for any more foods which have anti-inflammatory properties. I can't emphasise how important I have thought omega 3 in my diet.
In terms of general dietry lifestyle - i have just tried to eat as healthily as possible (plenty of fruit, veg, nuts etc etc) - we all know the unhealthy, processed, fatty, sugary foods - so i stay away from them - i loved a curry - but really spicy stuff is a no-go as I find it irritates the gut. if it's spicy in the mouth - then it will be spicy elsewhere in the digestive tract. I'm not perfect in my diet - and do eat the odd crappy food stuff - so it's a work in progress, but I'm trying. The more I think about colitis - the more i think that modern processed crappy western diets must be responsible for some of our gut problems.
I always used to drink alcohol a lot in my younger days at uni as you do going out every week, sometimes twice a week - and I don't think that helps people with colitis. I still drink now and again - maybe once every couple of months - but just the occasional saturday night - and try not to drink loads - i do still notice a slight change in bowel habits the next day after some drinks - so i know a weekend binge would not be good for me at all.
Going back to my uni days - this is when i would say I was at my worst with colitis - and another factor that I think set it off for me was just general stress of university. Stress is a part of life I know - but I would really recommend looking into ways of dealing with stress and having a calmer more relaxed mind about thinks and just take things in your stride more - thats what I done - and now always try to make time for just relaxing and chilling and just not getting so bothered by things. I even looked into meditation - which may not be some peoples cup of tea - but learning to relax and have a calm mind is a good thing for us all :-) (Incidently - I would describe myself as someone who has a very active mind, i think a lot and find it hard to switch off, and strangely enough the other people i know who have bowel diseases have the same sort of mindset - heavy thinkers - i wonder if this is linked in with colitis….)
The final thing that has greatly helped me - and helped with one of the biggest improvements to my condition around 6 years ago or so in my opinion was taking something called lepicol/regucol - which is available from holland & barrat (I'm not on commision here either lol). Basically it's a tub of fibre powder containing good bacteria, which you drink mixed with water or juice. Now maybe this isn't a good idea to take in the middle of a flare-up - but as a way of prevention i have found it to be excellent. Whenever I feel things a little shaky down there, or even passing a bit more wind than usual - I take some of this stuff and it keeps me right on track! Now from my limited knowledge of colitis (others may well correct me if im wrong) - colitis is an auto-immune disease - meaning your immune system wrongly attacks or over reacts to things (food, bad bacteria etc in the colon - causing imflamation and ulceration over time. Now I know there have been studies carried out by trying to treat colitis by giving people large doses of good-bacteria for the gut (not sure of the effectiveness of this - may be worth looking it up) - but maybe the fact that lepicol/regucol contains good bacteria and fibre is maybe why is proved helpful to me. While I don't take this stuff everyday now - I do take it whenever I think my stools are starting to become a bit loose. Further more I've also recently come across a seed mix in asda (linwoods seed mix) - which contains flax seed/pumpkin & sunflower. By adding a table spoon of this to my cereal in the morning - it also seems to keep me more regular and more normal :-) can't beat talking about your bowel habits lol.
Anyways - this has turned out to be longer than I thought, but I just wanted to share some of my experiences and what works for me in the hope that it might help some others. I guess I've been quite fortunate and things have recently went as well as they can do when you have colitis and I really feel for some people and their stories on here - colitis is a horrible condition - with as yet no known treatment where you are treated then its gone for good. But i just wanted to give a bit of hope to people in that things can be bad, as it was for me, but thats not to say you won't feel better in the future and could well enter remission. And I guess that as medical knowledge improves there will no doubt be a cure for colitis in the not too distant future - but for now, just do what you can - good luck! :-)
In summary, these are my big tips:
• Cut out milk
• Cut of alcohol and any other irritants identified through trial & error in your diet
• Take high strength omega 3 tablets
• Try lepicol/regucol from health food stores
• Eat healthy
• Avoid processed foods
• Manage your stress levels & relax
• exercise and get out doors - it's good for your state of mind
• Don't worry so much about things
• Know that you can enter remission with colitis
• A medical cure for colitis will no doubt be here within a decade
Links to the key supplements I take (available from most health food shops I guess by I use Holland & Barret):
Hope this helps! If you want to get in touch to ask about anything - feel free to contact me via Facebook https://www.facebook.com/stuart.hodgson7