Ulcerative Colitis- Please Help!

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Im 23 years old and was diagnosed with proctitis in Sept 06. I visited my GP when I was 17 and explained about my symptoms but was told it was IBS. Gradually things got worse and in 2005 I was eventually referred for a colonoscopy where I was diagnosed with Proctitis. My GP was rubbish and prescribed me Asacol and I kept on visiting him insisting that I was not getting better and the bleeding and toilet urgency was getting worse but he did nothing. In June 07 I paid nearly £2000 to BUPA for private investigations as I was angry with not getting better. Days after my private investigations I became terribly ill and was hospitalised for 5 weeks and underwent more investigations in which I was then told it had spread and I now had UC. As a result I was off work for 3 months and was on steroids, suppositories, aziathroprine, basalazide and iron tablets. The bleeding and toilet urgency stopped and I felt like I was getting better. Then in Nov the bleeding started again. I visited my consultant who arranged for an emergency sigmoidoscopy and as a result of the investigations I was admitted to hospital for 4 days. I was discharged on steroids and the above medicines and over christmas the bleeding stopped. However it started again in the new year and I have just recently been told that I have to be hospitalised again but I have to wait for a bed to become available.

I feel so down and dont have a clue what to do, I have a mortgage and a career and feel like Im going to lose it all. I find myself bursting into tears at the thought of having this illness forever. I have recently started going for acupuncture as I am willing to try anything to get my liFe back. I feel myself asking all medical professionals is there anything I can do and they just say try not too let it get you down. Does anyone know if it is directly linked to diet? or does anyone do or know of anything that helps?

I feel so stupid writing moaning when there are probably so many other people worse off than me but I just dont feel like anyone really understands.

Nat

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  • Posted

    Its not stupid to moan, its only one of the worst diseases the Colon can get. These periods of remission and flare up are classic UC, it has no known cause but its suspected to be a autoimmune desease :?

    As for what to do, what with all those commitments you are stuck between a rock and a hard place arent you. In the long term youre probably going to need some kind of surgery :?

    The antibiotic Metronidazole is supposed to help smile

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  • Posted

    Thanks for a response its nice to have someone to talk to. Dont get me wrong my boyfriend and family are fantastic but they just dont fully understand and always say you have to stay positive.

    Thats what Im scared of is the surgery. Is surgery inevitable? Im so scared of it hurting and having to have a pouch. How long have you suffered for? Are you in remission?

    Iv had metronizadole before but I thought this was just an antibiotic that they give you to fight possibility of infection after investigations?

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  • Posted

    Surgery isnt inevitable but its likely, you need to achieve remission and keep it up :? Metronizadole is used to lower the bacterial load on any ulceration to aid healing, its used to treat Crohns and most types of Colitis, I expected to see it in your list of medicines smile Otherwise youve had virtually every medicine :? They could try long term Colon rest either by changing your diet, TPN (total parenteral nutrition) or by fitting you with a temporary stoma, this with the medications might help alot smile

    Luckily theyve only found scaring and artifacts up mine, theyve never looked when Im flared up because its not too bad for me, well my bowel movements are under control and I only get nose bleed amounts of blood twice a week or so, so whatever it is its pretty mild. I dont want to know what it is :D

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  • Posted

    Nat. your story is certainly not unique. I really understand why you’re down about it, particularly as you are still young.

    There are many theories about cause of UC, many approaches to medication and other treatment. Some of them are interesting – some medications are probably essential. Some treatments are probably just no good and exploitative. However, it’s true that this will be with you with varying degrees of severity for the rest of your life, or until surgery, and it’s worth remembering you have it – even when you’re in remission. It always comes back to bite you. That’s all rather depressing I realise.

    As I think is the case with any long term illness, in my view we need to take a holistic view (while keeping on medication also). Do not be in denial. Do not run or hide. Take a step back from thinking about medication and take a moment to examine your life.

    You’ll hear and read that stress may be a factor in flare up. There may be truth in that, but no-one knows how to measure or quantify stress. I don’t. So what use is it ?,

    However, my experience has fairly consistently been that lack of sleep is a big factor in flare ups. I realise that this in itself may be a result of stress. If you run yourself down that way, you may become more susceptible to flare ups. I’ve always been sloppy in getting my 8 hours or even 7, and my experience has been I flare-up more often when I’m tired and running on empty.

    Are you the kind of person who worries a lot, maybe lives life a bit on the edge, works and parties hard, eye on the clock ?

    Take an honest appraisal of what you are doing in your life - not just the night before a flare up, but during the month prior. Think. Self-examine. Consider a different way of doing things, different place to live maybe ? Only you know. Listen to your instincts.

    A word about medication. You seem to have had an awful lot of meds in the last 7 months and hospital treatment. Do the steroids not work to get you in remission? Otherwise they seem very keen on quick hospitalisation. Do you take steroids at the first sign of it to try and nip it in the bud ? I’m surprised to see they’ve had you on aziathioprine too – which is a more invasive maintenance drug, and quite harsh. Were you able to stay on that ? Perhaps they gave up on Azacol rather quickly.

    I was sloppy with the Azacol in periods of remission – even quit it for several years. I suggest persuading your consultant to go back to it(or similar). I know some can get kidney problems, (and I know a chap who did) but that was quite soon after taking it. If you’ve gone a year without side effects you’re probably gonna have no problems on this one. Keep on a remission dose, as this disease needs the modification effect to stay in remission.

    But consider this: there are many forms of this drug (known as Aminosalicylates). I had no idea that even the generic equivalents can differ widely in their effectiveness due to things like their absorption, there metabolisation (is that the word, I’m no doctor). But I do have a very qualified friend at Astra-Zenica pharmaceuticals who confirmed this.

    The medics (maybe due to their training) sometimes overlook this point and simply move on to the next med on the list.

    Incidentally for those who can’t stay on Aziathioprine, there is a similar immunosuppressant called 6 Mercatopurine (it’s what Aziathioprine turns into).

    About me for a moment: I am male, was diagnosed at 23 but had no more flare ups for 9 years. Then since 32 have had about 9 or 10, and not evenly spaced. I’m now approaching 43. I too have a career, mortgage, dependant partner and 2 kids…etc. I’ve battled the lows and highs associated with flare-ups and remission, struggled with work while flared up- even tried starting smoking for a while (don’t !). I had always managed to quell a flare up with Steroids until recently, but steroids for longer than 2-3 weeks, have unpleasant side eff

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  • Posted

    Thanks for that HornofPlenty it was good smile
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  • Posted

    Nat

    To add some more of my thoughts and observations.

    Diet:

    Some people put great store on a diet known as Specific Carbohydrate Diet [SCD] as championed by a lady called Elaine Gottschall, which claims to help with IBD (Crohn's and UC). You can find details of her book \"Breaking the Vixious Cycle\" here http://www.breakingtheviciouscycle.info/beginners_guide/beginners.htm and reviews on amazon: http://www.amazon.com/review/product/0969276818/ref=cm_cr_pr_redirect

    I have NO PERSONAL EXPERIENCE with this, but most of the reviews are praising. IT would be a big change in your life, and would require alot of willpower and tenacity. I'm thinking about it for myself.

    For now, my advice is eat little and often, so as not to overwork the bowel.

    Stimulants (eg: caffine) are probably not good for UC, but I love my coffee(!) and think if you are healthy and well-balanced, this isn't gonna make or break you. I do maintain that refined sugar should be kept to a minimum.

    Quote from source http://www.vitaminevi.com/Concern/Ulcerative_Colitis.htm

    Although sugar intake has been linked with almost a tripling of risk for UC in an Israeli study,4 other research has not found this link.5 6 A fourfold risk with a high intake of animal fat and dietary cholesterol was also reported in the Israeli study.7 This fits with

    Japanese research finding a link between eating a Western-style diet and the risk of UC.8 Both studies also found at least some protection linked with increased intake of fruit and vegetables. Although the association between UC and diet remains unclear, eating more produce and cutting back on sugar, meat, and dairy fat is beneficial for overall health.

    Meds

    I can only emphasis that steroids (eg: prednisolone) are not a good medium or long term option. side effects with long term use are almost certainly \"moon\" face, increased appetite - weight gain, mood swings...

    Re: smoking/nicotine. A quote from source http://www.vitaminevi.com/Concern/Ulcerative_Colitis.htm

    Smokers have a lower risk of UC for unknown reasons. The nicotine patch has actually been used to create remissions in people with UC but it has not been found to help maintain remissions. This is hard to understand, especially because the disease most similar to UC—Crohn’s disease—is made worse by smoking.3 Despite the possible protective effect of smoking, people with UC should not smoke, because the health consequences of smoking are so severe. Even the use of nicotine patches remains experimental and carries its own side effects.

    Personal. My own Gastro Consultant at Addenbrookes, Cambridge has rubbished claims that smoking helps in any way in UC. He's quite well researched in IBD, but still, I don't entirely trust this view or the medical profession, as one doctor’s research is another one's ignorance. Remember they do research for money, notoriety and career progression, and it depends who funds them.

    If you’re desperately trying to get into remission, who can say for sure that patches would not help.

    A tip though, if buying over the counter, don’t tell the pharmacist the reason you want them. Just say you’re trying to quit smoking.

    Good Luck

    Let us know how you get on

    IB

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  • Posted

    Thanks for your responses. Well sorry for late reply but was hospitalised again on 15 and only got discharged again yday. They again pumped me up with steroids and Iv been sent home. I just dont have a clue what to do. I asked about diet again and they said there is no link and to eat what I want unless I notice that something triggers it off. Im at my wits end. Im scared that if they keep putting me on steroids then one day they wont work.

    We had a few problems with my consultant last year in which he is now very scared of anything bad happening to me therefore I feel that he puts me on the steroids to calm it and then hopes it wont return.

    Thanks for the advice on stress, I know it sounds like a pathetic excuse for an illness coz like you said how the hell do you measure stress? But looking at my life I just dont feel like I ever relax or have me time and it prob doesnt help that Im a natural worrier and I do think all this along with trying to understand this illness prob keeps on making me flare up.

    So coz Iv just had a flare up and obviously am now slowly trying to get back in remission what diet does anyone suggest for me to get better. The docs sadi plenty of fruit and veg etc but Iv read to avaoid this at time of flare up. Im confused as to whether I am now over my flare up or still trying to get remission coz Iv only just been discharged and obviously my toilet times are not back to normal yet.

    What an illness hey, just trying to understand it bloody risks the chance of setting off another flare up!

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  • Posted

    Ooh I wondered what happened to you :D How is your weight have you lost stones / kilos? Can you actually put weight on? smile
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  • Posted

    Nat

    Nice to hear you’re back. I know how you must feel. I once spent 10 days in hospital with same as you.

    Would you say you were still rushing around a bit ?. You’re never gonna beat this illness with a quick fix solution. I agree with your doc – eat more fruit and veg – but don’t have too much of the fibre while flared up. For example, perhaps peel the apples?

    Re-read my last post about SCD diet if you’re determined (although remember I am not recommending anything that I haven’t personally tried).

    Meanwhile, you’ll remember I’m no fan of steroids. I think they should be only sold on street corners and in pubs by East Europeans with big moustaches  [apologies if you are East European ]

    Seriously though, I wanted to bang on about Prednisolone again. Is that the steroid you’ve been given? I guess the same applies to other types.

    I know you probably don’t have a choice right now (unless you want to try to get into remission using only a large dose of Pentasa [see my first post]), but as it is likely you will have more flare-ups in future, think about and do research on Prednisolone and/or similar steroids, because it is risky and you need to be aware of the side effects, which are well documented, and take precautions to look after yourself.

    As you must have been on and off them for about 6 months at doses of up to 30Mg or higher while in Hospital, there is a risk of weakening of the bones, leading to Osteoporosis. I’ll just quote you this..

    [i:f9f8f3788c]“The risk of fracture is increased in patients taking

    oral steroids (glucocorticoids). The dose should be

    kept as low as possible and courses as short as

    possible. UK guidelines recommend that BMD [Bone mineral density] is

    measured in all patients taking or expected to take

    steroids at a dose greater than 7.5mg per day of

    prednisolone for six months or longer. Bisphosphonates

    are first-choice agents, but more long-term

    studies looking at fracture rates are required.\"

    [/i:f9f8f3788c]

    Has your consultant given you one – or maybe both of these meds?

    Calcichew D3 (calcium tablets, you chew them regularly)

    Alendronate. (Fosamax) . Ususally in 1 weekly dose.

    You also should be sent for a periodic bone density scan at your hospital

    Take regular exercise to combat muscle and bone weakness,

    Reduce Alcohol (as can make Osteoporosis worse). Eat less salt.

    And you will be more prone to infections, so beware of this.

    And as u know, less sugar.

    I’m not sure what you do – work wise, but are you taking time off now you’re out of hospital ? I would if poss. Get your GP to give you 6 weeks - to hell with work – that can wait. Take a short holiday. Trust me you’ll have the best 6 weeks you’ve had in ages. In that time, think about how you are - how you’ve described yourself. [you don’t ever relax and you’re a natural worrier].

    What can you do ?

    Self help is cheapest., and My advice is free smile

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  • Posted

    Hello Nat. I have had ulcerative colitis. I was diagnosed some time in the 1980'S. I sympathise with you, it is a very difficult disease to cope with. I had flare up's for years, , drugs, tubes up the rear end, the works. Eventually I had a bad flare up that would not clear up. After a further year of investigations and drugs, they finally decided that surgery was the only option. I don't think you want to hear this but eventually I had an operation to remove my large intestine. I know it sounds drastic and I suppose it is even worse for a lady but my health has been wonderful since. No more drugs, no more tubes inserted into embarassing places and so on. For me although it was drastic at the time, it was the best option. It sounds awful but I now have a pouch which I have to change once a day and empty three times a day. I find that a very high fibre diet helps me with controlling its output. :D :D :D :D :D :D
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  • Posted

    Hi Nat,

    I was very moved to read your message because it describes exactly the situation I was in at exactly your age - I'm 46 now. If anything, psychologically I was in a worse place than you as I was unemployed (this was the early 1980's) and I was living at home with a domineering mother who insisted that she could cure me by feeding be up with bland food -rice pudding etc. I had a lot of issues in my private life as well which didn't help - knew I was gay but lived in a remote Irish town, had a stammer, extreme shyness, no friends etc. On two separate occasions I remember coming home on hot summer evenings from a temp clerical job where I had spent most of the morning passing blood, mucus, doubled up in pain and everybody wondering where I was - and just weeping uncontrollably for a couple of hours - nobody else was in the house! There may well be psychological factors in UC who knows? But nobody in my family has it and my brothers are pretty similar to me but maybe not so highly strung. Fortunately, the hospital I was referred to was pretty good - but small town life - I kept bumping into the doctors and nurse for months afterwards; and after a colonoscopy which was agonising as my intestine was so badly inflamed I was put on steroids and then salazopyrin. I had a good reaction and for the past 20 years I've been on a maintenance dose of Salazopyrin. You may think I've been lucky and I thought so too for many years, but now it's back.

    I had a flare up last Autumn after months of a slow build up and was put on prednisolene which calmed things down but to my unease a recent bone scan showed that I could be developing osteoporosis as a result of the steroids. A couple of times in the past, GP's have prescibed a week's dose when I just had a bit of diarohea. Like you, I'm wondering what the future holds. Compared to 20 years ago my life in London is now far superior: I have a partner, established in my career, friends, mortgage, I've had very successful speech therapy etc.

    So far things are going well and I am on a high dose of Asacol which seems to be working. But I'm not allowed to take any exercise and I have to rest as much as possible. I was looking to move up to the next level at work but in my present weakened state I don't see how I can summon up the confidence and energy to do it.

    Stress is a fact of modern life if you working in any sort of responsible job these days. My feeling is that it just has to be accepted. Probably, the worst thing about my current state is that I have had to give up running which I found to be a brilliant stress reliever. The gentler, less bouncy alternatives: yoga, weights, pilates, swimming don't do anything for me.

    I know I've talked an awful lot about myself but it's good to share with somebody who can understand where I'm coming from.

    The trouble with Ulcerative Colitis is that it seems to affect people in different ways, but a few points may be useful:

    1. See your hospital consultant rather than your GP. With the best will in world your GP will not know as much or have had the same experience as a consultant gastroentologist. We're so lucky to have the NHS in this country.

    2 What IB says about sugar in the diet could well be correct. I've heard this before. I have an ferocious sweet tooth but since Christmas I've been avoiding sugar (cocaine as I call it!) as much as possible.

    3. Leave work in the office. It may mean staying late or starting early but I never take work and the associated mental baggage home with me.

    4. Once you recover, see if you can find some sort of exercise that will take your mind off things.

    5. A low fibre diet could be beneficial. I know we're all supposed to have 5 portions of fruit and vegetables a day but I find that diarhoea is often the result.

    6. I was really interested in mjaj's message concerning the removal of his large intestine. For years and years this would have filled me with horror, now I

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  • Posted

    Thanks [b:d1a725a08d]mjaj[/b:d1a725a08d] and [b:d1a725a08d]Dermot[/b:d1a725a08d] for telling us about it smile
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  • Posted

    Thanks mjaj and Dermot. Dermot your story touched me. Thanks for sharing it. I went 9 rather than 20 years thinking all was well. But when it comes back it reminds us we have something chronic that's never going to go away without surgery. It reminds us we are fragile, and also that this illness need a lifestyle management, not just medication.

    It knocks our confidence and can lead to depression. Don't let it. Just rest yourself, Get yourself in remission and look at what might have changed in yourself to induced the flare up. I bet you’ll find the answer somewhere. Just remember how much better things are when you're well again.

    mjaj. Thanks for reminding us that surgery is not the worst thing, and in fact can turn your life around. Others I spoke to say same as you, including a guy in his 40’s (an IT manager, as it happens) said the same. Nat, I know that won’t be of much comfort to you at 23, but there are still other avenues to explore for you. I think they don’t normally need to consider it till you’re older – maybe never for you. Get your life calmed down and you may be like Dermot – 20 years in remission. Look at it this way, - if life was so unbearable that you couldn’t do any of the things you wanted, and there was no chance of improving it with meds, why [i:552dbe9c7a]wouldn’t [/i:552dbe9c7a]you want surgery having read these posts?

    Of course, like Natty, I'm scared of it. But knowing that the \"worse case scenario\" is not actually so bad, should give us a lot of hope. Of course I'm hoping that before I reach that point, someone's gonna have invented the ultimate non-surgical cure. But that's a \"nice-to-have\" not an expectation.

    Dermot. Was the advice not to take any exercise (presumably from your consultant or GP) due to your current flare up and the increased risk of damage due to the osteoporosis?

    I think I recall that steroid-induced osteoporosis is fully reversible if you take the right meds (see my post of 28th Jan), but better check on that. I guess you need to be extra careful meanwhile. When I was on pred, I was sent for a bone density scan, and they did find bone thinning slightly at lower spine, although hips were normal. That was a few years ago now. They gave me fosamax and calcichew. Actually I never got any follow up, I think they just forgot, so I never knew if it improved :-( I just think it did).

    I guess while on Steroids, gentle exercise is safer. I would though just suggest that in general yoga (while not cardiovascular, so not gonna give you the endorphin high of running) is really very good for a UC lifestyle. I did yoga regularly for about 8 months (even though it meant being in a room full of mostly females) and felt totally A1. Had no flare ups while doing that. And swimming I’m sure is good, although I’m not big on that as I’m a lousy swimmer.

    Cheers

    IB (the Horn of Plenty)

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  • Posted

    Hi everyone

    My hubbie was diagnosed 3 years ago with Chrones Disease and with all the will in the world at 30 years of age he tried to fight it! His best advise with any illness is to listen to your body and rest when you can.

    We wish you all the luck in the world :D

    Donna & Jason Lancaster

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  • Posted

    Hi, I am 76 and was diagonsed with UC 6 months ago. I was put on Asacol

    at first ( 10 tabs per day )to ensure I would be okay for a colonoscopy

    to remove a large TVA (polip). This was succesful but a dreadful time best

    forgoten.....

    Since then I have been on all the usual medications, to little or no results,

    and I am very disapointed in the whole thing.

    In desperation I turned to the internet were I found all that stuff about Aloe Vera....Americian sites....expensive....inflated claimes....I descided

    to ask our local Holland & Barret if they had any thing the same but cheaper???? Yes ,Two products that I could try. Next I checked with my

    consultant that I could use this product safely, again okay, so a week ago

    I started using Aloe Vera juice & gel as well as all my normal medications.

    To early to be positive.....but amazing short term results....

    Has anyone else tried Aloe Vera products??????????????

    Very Excited

    Francis 31

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