Suggestions on medication, both prescribed and alternative

Posted , 11 users are following.

Hi,

i have recently been diagnosed with UC and am struggling to live my life normally, I struggle going outside as I go from feeling ok to almost uncontrollable need for the loo in seconds and my energy levels are quite low. Currently I am taking asocol and prednisone, however they do not appear to be doing a lot of good. Can anybody please help me on what other types of medicine have helped others as I am at the beginning of what I feel is a very long and difficult road to getting this under control.

any suggestions would be really appreciated.

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  • Posted

    Hi Ben,

    Welcome to the pain in the @#@# club! All i can say is that some how you just manage it the best way you can that suits you. My fellow sufferers on this web site will have lots of advise for you and all you can dois pick out the best bits for you! Some say cut out all sugar products and nothing with spice in, plus avoid anything dairy! At the end of the day it is what ever you personally can deal with. As far as medication goes i have no confidance in what has been prescribed for me! Just like you i am on Asacol and Prednisolone i have UC along with Arthiritis about 6/7 weeks ago i got the hump with taking all these sodding tablets and still having to rush to the loo with all the urgency of "oh my god" its coming out!!! So i decided to take myself off of all medication apart from the steroids and it made no difference at all apart from i felt better for not taking tablets. Anyway..... i digress, went back to the doc's and agreed to have a go at 500mg  Asocol Suppositories! Not very practical seeing as i work on a building site, so i agreed to only use them before bedtime, its only early days yet but they seem to be doing something. Now not very "MANLY" but i now use the wife's panty liners! them sticky ones with the wings on! Mate they are a life saver. They buy you just a small amount of time before you mess yourself. Dont be affraid to mention S@#ting yourself on this web site we have all done it! The other thing i do do and its not always convinient is carry aroud with me them Andrex bottom wipes, once again a bloody life saver before them i was cleaning myself in public loos using the bog water and toilet roll! These give you a bit more dignity.

    Sorry i cant help you with the meds Ben, they seem to be lucky dip as far as i am concerned! Keep your chin up mate and take the best bits of what us UC's advice can offer i sure you will find tour own way sir.

    Thanks Terry.

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    • Posted

      Hi terry,

      thanks for theadvice. It is strangly comforting to know that I am not alone with this stupid disease.

      i used to be on 40g of prednisolone and for about a month I was totally symptom free which was amazing, so I havnt given up hope of returning to normal with or without medication. So far any accidents I have had had been in my own home but I know it is only a matter of time before it happens in public so little bits of advice of how to deal with it is really useful.

      has surgery ever been an option that you would consider?

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    • Posted

      Thanks for that Barb,

      i do try to make it as less painfull as possible for the "newbees" by making light of what we all know is a bloody! and i mean bloody horrid disease! poor sod! i know how i felt when i was first diagnosed with it an then realise that there is no light at the end of the tunnel! But...... could be worse!!! Theres always someone worse off than what we have got! But when your rushing to the toilet and pushing old ladies over to get to the karzi before you S@#t yourself i cant think who that could be :-)

      Thanks Terry.

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  • Posted

    Hi ben im now into year 9 im afraid your life is controlled around the toilet each day till it stops normally around 130 pm for me during each flare up. Everybody  is different what works for one dont for others. I manage mine by never drinking alcohol avoid veg fruit skins and grease fat foods mac ds ect. fizzy pop i tried tonic water but it must of caused my current flare up as it was only thing different i had as for meds I take mezaline oral and supositries. most things ppl recomened to take is in complan shakes i take two aday with water never dairy products this gives me energy i use to sleep up to 20hrs a day. also none prescibed meds i take activated carbon x2 this gets rid of bloating and nursea but carnt be took same time as orals meds , omega 3 lemon water, acidophilus 3bil,complete b, olive leaf capsules was told to take folic acid but its already in complan drink plenty water avoid coffee , green tea or tick tock tea is good
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  • Posted

    Hi Ben,it will take a while for meds to kick in,are you bleeding is so maybe you could have enemas to try and control that, you just need to rest that's the only way,hope you feel better soon.  Regards Ann 
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    • Posted

      Hi Ann,

      the past week or 2 generally I have not had blood in my stools (small amounts occasionally) however the past day or so blood has been a lot more noticeable. Not overly familiar with enemas what are they?

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    • Posted

      Hi Ben the enemas are retention unlike the washout ones, some are steroid based,others are a foam,the one I use is called Colifoam that works for me,you need to talk to your consultant if things are not improving there are things out there to help with the symptoms of this hideous illness,of course sometimes also surgery is the only answer but try other options first , all the best Ann  
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  • Posted

    the panic of being away from the toilet duing flare ups is horrible always carrying spare clothes and wet wipes my life saver is a transit van with a fitted toilet in the back i also carry medical alert cards i go straight to the front of ques
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  • Posted

    Hi Ben Ifeel for you. Ifeel just the same.no energy. dont want to go out.My ankles are swelling up now.Just give it a bit longer as it takes a while to get into your system.I have been on prednisone for just a week now. must keep trying. hoping it will get better.

     

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  • Posted

    Salofalk enamas did help me, but my hair was falling out. So i have swopped it for presidolone bot not having much luck up to now. Babz.

     

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  • Posted

    Hi Ben

    how you getting on with the days advise? I have one or two obvious suggestions for you sir. When you go out shopping at your local centre, suss out where all the loos are. Department stores are a winner plus local cafe's and shopping mall's have loos usually. I have to commute using the London Underground! You down download a pdf of what stations have loos at inside the platform and outside. I found this very usefull. So check out your own route to work and see where you can stop off just in case! Other trates that you may want to look out for is driving to fast!!!!! believe me mate it happens! all you can think of is getting from A to B in the shortest time just in case of issues!!! So watch your speed when driving i have already hit someone up the A@#s by panicking to not get stuck at the lights! luckily the guy was a proper Gent bless him. So be warned No Speeding!

    Good Luck Terry.

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    • Posted

      Hi terry,

      its nice to see so many people responding with all this advice. I have started scouting out toilets in public places so have started planning ahead more now. Am trying to go on a more high fibre diet to see if that helps in the slightest. I myself have almost had a few accidents by travelling too fast so I know the feeling haha. My gf is being very supportive and helpful it must be difficult for the other half having to deal with it.

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    • Posted

      Hi Ben

      Your not wrong there mate, my Mrs is an absolute angel bless her so support from your better half is essential. Been many a time i have had to bugger off sharpish and leave her when we are out shopping. Dont think the high fibre thing is a good idea Ben! From what i have been told and found out for myself on this site it's Low Fibre or Low Residue diet. It will take a while to get use to but try and read up as much as you can about our condition. We are all learning from our own mistakes and can only say what is good for you isnt good for others.But High Fibre like nuts and stuff can do you up mate. Things like alcohol and currys dont make a habit of! I love a beer and a ruby but dont mean we have to never have them again! Just remember that they come back with a vengence the next day so dont make any plans for the following day mate. If i think of any more titbits i can feed you i drop you a text mate.

      Good Luck Terry.

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