As title really! Not pleasant i know, But finally got diagnosed with it yesterday thanks to going private health care with Bupa, and not relying on the NHS! Its taken 10 years of the NHS saying there wasn't really anything wrong with me, and must be diet related! Dont know much about it and what i find on the web is very gloomy!
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Ulcerative Colitis - anyone got experiance of this?
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Posted 2 years ago #
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Hi
My sister in law has it and my sister has Crohn's disease (similar but worse).
It seems to be manageable but you do have to pay huge attention to your diet (the sister in law is being really stupid about it, not taking medication and binge drinking.....really not a good idea).
I'm fairly sure there will be support forums out there but try not to google it too much - it's different for everyone and some have it worse than others..
Posted 2 years ago # -
I got diagnosed 8 weeks ago!
Taking steroids at the moment to reduce the inflammation.
Had the same thing with my Doc, kept being told it was IBS and to take fibre, now been told to reduce fibre!
Glad I finally got diagnosed as it could have been worse I guess.
Drop me an email Mick and will tell you what other drugs they have me on.
BTW, two of my other cycling buddies have Ulcerative Colitis & Colitis, so I guess its not that rare, or are muddy cyclist prone to it?
Posted 2 years ago # -
Depends on the severity of it. Mrs-tree has it, and only has to take the medication when it flares up (about once a year on average). When it does, it's really uncomfortable though. When she first got it, she suffered for about a year in real pain and it was only when she was finaly admitted to hospital that it got sorted out. Now she's ok most of the time so long as she steers away from bran.
Posted 2 years ago # -
my sister had this very severely after giving birth and was really very ill..
... as well as medication she paid very very strict attention to diet and after a year it eased up enough to not be too much bother..
she kept up with the strict diet for another year or two and now is just careful about over doing certain foods and doesn't get troubled by it at all...she's due to give birth again next week though... so I wonder if her 'arse disease' will rear it's ugly head again?
Posted 2 years ago # -
Thanks everyone, I'd like to say its good its not just me ( but its not nice to think others have it too! You know what i mean) I did find a forum for it, but you know what people on forums are like!
As i said, i only got diagnosed yesterday and not got my prescription yet so need to see how i get on with that! Just a bit worried that itis going to be a burden to live with, even though i have done for 10 years already! You know how it is, sometimes its better not knowing things are wrong! You do seem to here of people that have been cycling for a long time surreing from illness' like this though, so maybe there is some conection.
Posted 2 years ago # -
I had it for about 10 yrs or so in my mid 20s to mid 30's. I had a variant which only affected the final section of the bowel (proctitis) so was relatively mild - still not pleasant though. I was on some drugs to keep it under control throughout that period and during flareups sometimes had to go on a high dose course of steroids. Eventually it burnt itself out I guess and haven't had any probs for years + no pills to pop.
Posted 2 years ago # -
i had that oR they thort it was that a few years ago... prob IBS in the end (irratabel bowel syndrome)... kept having flare ups.... had to watch my diet alot they said... gave me alsorts of tablets ...nowt really worked... had a few of those horrid tests where you drink a horrid glucosey drink ( 2 bottles) then they look at your insides to see whats happeneing... fortunately i have got alot better over the last few years through diet, stay away from anything with cream in it and no spicey foods , cheese is another bad thing for me... taking lots of vitamins and acidopholus tablets ( to get the good stuff into your body..
over time you learn what to eat and what to stay away from.... listen to your body... itd fragile really...i blame the early 1980,s food that had too much processed stuff in it and other rubbish... 10 years later you pay the price.... 0h...Posted 2 years ago # -
My Specialist seemed pretty insistent its not diet related though, just told me to keep up a well balanced diet?
More to do with my genetics and possibly how my immune system deals with bacteria, well that's what he said anyway?
[edit] I don't think they know for sure what causes it [edit]
Only diet advice he gave me so far, is to reduce the fibre and fruit content of my diet.
Interesting points brought up so far though in the above posts, think I will need to do some reading...
Posted 2 years ago # -
From the booklet i was given, it appears that the skins of fruit such as apples and grapes are off limits along with a certain type of fibre, essentialy what your body doesnt process, ie sweetcorn/broccoli! Its re-assuring to hear of people that it either stops or is possible to control though. Thanks!
Posted 2 years ago # -
It's idiopathic i.e. of unknown cause. My specialist told me it wasn't stress related but the majority of my flareups occured during periods of stress. Go figure!
So I now chill and try not to get stressed up about work/life/etc.
Posted 2 years ago # -
Please. I know that you have been suffering from this for sometime but whatever you do be aware of your wellbeing and if you notice any changes then go to the doctor, especially if you notice anything physical like lack of sensation or weakening of the use of a limb.
I don't want to go into it too much but if we had known to look out for this and see it as part of the possible side effects of this condition then we could have got treatment earlier and my family's lives would be very different.Posted 2 years ago # -
It can be hugely beneficial to try a vegan diet with colitis. Diet plays a big part, even if you are told otherwise. Prednisolone is a pretty nasty drug and I would certainly explore diet before going down that route. There is a helpful book from a US author available.
Best of luck.Posted 2 years ago # -
>Prednisolone is a pretty nasty drug
That's the steroid I had to take if I got a flareup. Acne city!
When I was initially diagnosed the only thing which would stop the inflammation was arsenic suppositories!! My specialist suggested them as a last resort but they sorted it out within days. Unfortunately they became unavailable within the UK and so that avenue was cut off for me.
Posted 2 years ago # -
I was diagnosed in 2000. Stay off the american forums, they'll scare the life out of you. They never seemed that positive to me.
It ended up putting me in hospital and me having a bit of a digestive plumbing rejig. I have to say it ended up being the best thing for me. Life is pretty much back to normal, just have to visit the trap a bit more often, but nothing like the 100m toilet dashes of the past.
Posted 2 years ago # -
I have had it since about 1997 and stress is a trigger, I have tried diets ect but not sure it made much, but I think being of a chilled disposition is the best solution. I take mesaziline tablets every day to prevent a flare and then the pred if it flares up. It can be quite awkward if you have to commute a long way to work as you get a serious urge to poop that you cant hold
nasty.
Posted 2 years ago # -
My Mrs worked for many years as secretary to a very good NHS consultant (luck of the draw I guess) - she got to know lots of long term patients (they could just call her direct and he would always squeeze them into clinic last minute when they got flare-ups)
She rode le-jog to fundraise for NACC which is a group that may be helpful. http://www.nacc.org.uk I think.
Posted 2 years ago # -
My mate had it, spent years on steroids that eventualy sh*gged his hip bones, suffered for years with the pain "hips", eventualy got a colostomy and got off the steriods, and has had one hip replaced and needs the other done too, he's only 40, mabey his is a severe case I don't know? I wouldn't wish it on my worst enemy, anyone who has it I wish you all well and hopefuly things will clear up for you.
PJ.Posted 2 years ago # -
I'm in the process of diagnosis for Crohn's - the diet thing is interesting, and will have to wait and see what they say. However my last chat with the consultant indicated that drugs were the only sure way with Crohn's. If I cut out fibre, broccoli, apples and grapes (to start with) what else is good to eat!!
All the best with your treatment - hope it sorts you out.
Posted 2 years ago # -
Steroids are not nice, but for someone to loose bone density they are either on big doses or on it long term.
If the consultant has suggested deitary changes then get him to refer onto a specialist dietitian, which should be covered by the private healthcare.
I have to take dexamethasone sometimes, and that is a stomach killer, 2 weeks of dex last summer probably gave me an ulcer, just had another week course recently that saw me puking for britain and unable to keep food/fluids down for a couple of days. Sadly due to start chemo or radio soon, which may well require longer term dexamethasone courses (oh joy!!!)
You've probably found this link already http://www.ulcerativecolitis.org.uk/ but just in case you havn't. I've found the support available from Brain Tumour UK invaluable over the last 8 months - honest, direct, well written.
Posted 2 years ago # -
I was diagnosed about 4 years ago - but think I probably had it since my late teens. After having steroids to sort that flare up out I'd been controling it with Asacol succesfully. I've now been having a flare up since last summer after having erythromycin it now seems that the Asacol has stopped working and I've been on and off steroids since then. I'm currently 2 weeks into another huge course of Pred and I've been put on immunosuppressants. Hopefully that will kick it back into remission.
I've never found diet makes much difference to how I feel but lager definately does, luckily I can still drink Leffe or red wine in smallish amounts.BTW predfoam is evil stuff
Posted 2 years ago # -
Nothing a total colectomy won't sort out!
How were you diagnosed ? By biopsy
there is no evidence that a vegan diet helps- never heard a gastroenterologist say that, so thanks for the anecdote above.
Whats does help-
short courses of steroids for flare ups.
I have several patients who have been well controlled with drugs like asacol and balsalazide and are doing very nicely thankyou and have regular IBD f/u with a nurse specialist and all is well. Hopefully you won't need a colectomy and it's a last resort only these daysgood luck!
Posted 2 years ago # -
My brother has Crohn's and doesn't really have any troubles after having a bit of small intestine lopped out. My doctor has mentioned it to me (having a sibling with it puts you at a greater risk) because I don't absorb iron properly at all, but I don't have any other symptoms. But then my brother's only symptom was a completely obstructed bowel. Colitis is very similar but only affects the large intestine (if i remember correctly). I've heard lots of people say you have to watch your diet, but it's not something that my brother has ever been told. Where I used to work we used to have a camp for kids with Crohns and Colitis, some of them had specific diets but that was more because they'd had multiple operations and were lacking in working intestine rather than food causing flare ups. The only thing my brother was told to absolutely stay away from is smoking.
Anyways, eat some worms, should sort you out
Posted 2 years ago # -
My specialist tried a different tack duing some of my later flareups, rather than bung me on a course of pred. he would up the Asacol dosage substantially (approx 10 tabs per day I think compared with 2-3 normally). Apparently he was basing this on research out of the states.
Can't remember how effective that was. Still got packs of Asacol upstairs but luckily not had to pop any for nearly 10 yrs now.
Posted 2 years ago # -
Thanks again for all the reply's, i really appreciate it and know its not something that anyone would normally choose to discuss in public.
Thanks again
MickPosted 2 years ago # -
Allthepies, thats interesting - I originally was taking 2 Asacol a day and upping to 4/6 if I started to get a flare up, it got to the point that I was taking 6 daily and that wasn't helping. My consultant said that higher doses were innefective and if 6 weren't working then it was time to move on to immunosuppressants.
Doesn't help when everything goes through so fast that they come out undigested.Mickasaki, when you spend most of your time either in the loo, looking for a loo or running to the loo and when you're there you never know what is going to come out you tend to lose your inhibitions about talking about it. Also once you've seen live footage of the inside of your arse while being pumped full of air which won't stay in with a couple of nurses and a big burly surgeon standing around twiddling the controls it's hard to be embarrased by anything
Posted 2 years ago # -
Also once you've seen live footage of the inside of your arse while being pumped full of air which won't stay in with a couple of nurses and a big burly surgeon standing around twiddling the controls it's hard to be embarrased by anything
I have this to look forward to... And immunosuppressants have been suggested straight off for me - no talk of steroid treatment, thankfully.
Posted 2 years ago # -
Like many of the above i was surprised that this isn't as rare as you might think.
My wife was diagnosed with Crohns early last year although she has it very mild according to her consultant and is now basically drug free, with just a phone number to fall back on if it recurs (like Mick-R's wife's boss's approach). Her consultant suggested there are quite a few cases that are very transient and she may never get further flare ups, or if she does they may be very far apart. So good luck with your diagnosis and I hope you get off lightly as the wife did.
Posted 2 years ago # -
Hi,
My girlfriend has suffered from Colitis for many years. She has to be careful about eating anything very spicy or things that are fibrous or hard to digest.
However, this may not hold for all cases - she was on steroids for some time but it turned out to be a particularly severe case and so has had several bowel sugeries subsequently.
From what I have picked up a lot of cases are transient and nowhere near so severe, as others have said here, so hopefully there is a good chance it won't be too bad for you. Not a condition that gets much publicity but seems to afflict a lot of people.Posted 2 years ago # -
my wife had it about 10 or 12 years ago (before I knew her). At the time, it was pretty bad - quite a lot of time in hospital, feeling and looking terrible. But she got better, and hasn't been bothered with it for at least the last 5-6 years - with little attention to diet as she eats like a horse!
Hope you come through the other side without too much discomfort on the way...
NickPosted 2 years ago # -
Its good to hear thats its possibly not always going to be around for ever. I must admit in all the years i've been having problems, it tends to only occur badly from about november untill april ish, and not too much of an issue in the warm weather! anyone else have similar experience? Was starting to think, moving to spain or somewhere hot would be the best cure for it (and pretty much everything else in life!!!)
Posted 2 years ago # -
My wifes had it since a teen, now it's Crohns.
In the early days she was told to keep a high fibre diet, now it's the opposite. Or rather she has to keep it balanced.
TBH she thinks stress brings it on more often than anything else.
And Ironically she was never more healthy than when she was pregnant and in the year after giving birth, in fact she was free of all symptoms then.
Anyway 35 years on she just gets by with mild medication.Posted 2 years ago #
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