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.
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.
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
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?
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
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?
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
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
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.
Oh Terry You made me laugh hahaha!!!!
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.
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.
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.
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.
Hi Ben
im sorry to hear that you are going through a difficult time with your ulcerative colitis.
I was 57 when diagnosed with the same in August 2013 & my symptons were also exactly the same as yours during what you will come to understand & eventually accept is a 'flare up'( when your condition is active from mild to severe). I say laccept as you will go through a long period initially where you are in denial of your IBD. You have to accept that you will have IBD now BUT it WILL be under control or manageable throughout your life. When my colitis first flared up I didn't go out of the house even past the front door for a long time because as soon as I got there I had to turn around & head back the the loo! It was a real physical condition but obviously just the thought of having an accident while out cause a lot of stress as well.
I don't know what strength your steroids or anti inflammatory drugs are & what level your flare up is. I assume you've had a camera inside & your doctors are in touch with you at the moment.
There are several things you can do. Wear special pads if you have to go out ' just in case' & no one need know. Important-Ring your IBD clinic tomorrow & speak to the nurses or leave a massage for them to get back to you. Or ring your own doctor for an appointment in the next few days. Very helpful-Go onto the website Crohn's colitis UK where there is a helpline & advise.
Fatigue is awful as well. You may be getting dehydrated & I guess you're losing weight.
Remember you don't have to struggle on alone.
Hi ben I've just read a few more of the replies to you & thought of some other things to say. When I went on to steroids in September 2013 I was on 10x 5mg oral daily for a few weeks reducing gradually & everytime I got to say 4x 5mg I bled so had to restart the steroids. This happened 3 times over a period of 13 months. Eventually they also introduced Humira in July to wean me off the steroids. Anyway it sounds to me from what you said about being great on 40 mg that perhaps you have come off them or reduced them too soon.
i wouldn't have high fibre diet. Can you imagine having an excruciatingly sore throat & eating crisps! Things like tin peaches in syrup ,rice krispnes ,no wheat, white bread a little. No cabbage broccoli etc. fish is good, chicken. Remember you still need a balanced diet especially if you're loosing weight. Once your bowel settled ask the IBD clinic for dietary advice. I don't know where you're posting from & how near or helpful your hospital IBD clinic is.
if you join Crohns colitis UK £15 adult per year & free I think if under 19. They will send you a welcome pack newsletters & a 'can't wait card' to carry with you & show in various shops etc if you need you use their loo urgently.( I'm not connected to this organisation at all just a member.)
Make sure you have change on you as some loos charge entry, found that out on my first outing & was desperate! Check out where all loos are. I carry a small wash bag in my handbag, I know it's easier for a woman I guess, in it I have spare pants andrex wipes, tissues & disposable gloves. A male friend of mind just carries a loo roll in pocket. I used to think my freedom had been taken away & that I would never again be able to go for a walk in the countryside. Actually it was a lot easier I went on a 2 hour walk when I had the energy & when I needed the loo I descreetly went!
if you have to go out then wear something pads or incontinence pads. You don't need any one to know & having very nearly gone in my pants the other day at the shops I wished I worn some. I doesn't mean you're incontinent now & it's just peace of mind.
Well hope all this helps.
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.
Hi Ben a high fibre diet is not a good idea,and keep away from skins on fruit and pips in tomatoes, a low fibre diet is better
hahahahaha!!!! Does you good to have a good laugh !!!!
HAHAHAHAHA!!!!! Another good laugh !!!