Hi there, im 18 and was diagnosed with indetermate colitis when i was 12, but im currently being treated for crohns. I was given a course of steroids to begin with but the had adverse effects so they put me into hospital and gave me them through an intravenous drip. With the steroids, i gained tonnes of weight, and actually got bullied because of it. Once i got out of hospital they put me back onto tablet form, along with pentasa and omeprazole. Thats probably what i remember most about my disease, its all just a blur the rest of it! Ive been on azathiaprone, which didnt help. Then i was put onto methotrexate. Yeah it works, but could it come with anymore side effects!! I had a relapse about 3 weeks which theyve managed to control quite quickly with predfoam. I think IBD is a really embarrassing disease to talk about to people who dont understand, so im here to see if anybody has storys that they want to share, and just want to chat about their disease, because i know how difficult it is trying to talk to someone who doesnt have the disease.

Hi Charmedsupergirl

Lovely to meet you. I'm new here too...only been a member for two days!

Crohn's, UC and IBD must be amongst the worst diseases there are. Unless you've experienced it personally you can't begin to imagine what it's like living with it. There's jsut so much crap that comes with crohn's (excuse the pun!) like tiredness and fatigue, bone thinning, side effects of meds etc etc

Families are often supportive but in the wrong way. It's not sympathy or people fussing over us that we want. We just want to be treated normally but with a degree of consideration!

I've found the worst thing about the illness is the bouts of depression. I'm going through a really dark time at the moment and I'm hoping talking to people on this forum will help me through it. Maybe we can lean on each other a little?

Take care xx

Oli

Hey Oli, nice to meet you too! Yeah theres so much more to Crohns disease that what people think, and the effect that it can have on people. I personally think myself lucky that ive not been through as much as some sufferers have. A friend of mine got a Colostomy bag when she was 16, im lucky that my disease hasnt gotten that bad yet. Do you have your disease because someone else in the family has it? My uncle had it, and he died from bowel cancer, so thats a huge worry on my part! I agree what your saying about families, my mum fusses over me a lot because shes worried, but that just stresses me out more, which isnt good seen as stress is one my triggers! Thats sad your going through a dark time Oli, i think it would be nice to lean on each other a bit.
xxx

Yeh..my sister and I both have it. Like your friend, I had the colostomy bag in my teens but with me it was at 17. I demanded the colostomy was reversed a year later though sayng I'd rather take my chances and die young. It's very much a mental as well as physical disease I find and stress is a major trigger for me too. I haven't really known anything other than a life of crohn's as I've had it since age 6.

I agree bowel cancer is a major worry but I came to the conclusion a while ago worrying about these things is pointless. If its going to happen then it will. Live each day as it comes and make sure if the worst ever DOES happen you never look back and wish you had enjoyed life more xxx

Do you find cold weather also affects you? I'm originally from the Canary Islands and whenever I go back I find my health shoots right up. I start eating everything in sight and getting up early with no problems. As soon as I get back to UK though everything just seems to go downhill again.

Hello everyone,
                       I`m a new member , I`ve had Crohns for about 30 years  and had 2 bowel resections, the last one about 4 years ago and so far I`ve been pretty good.  The reason for this mail is to ask if anybody has trouble with their legs ? I am experiencing difficulty with going up stairs or high pavements and don`t seem to have any power to get myself up any step higher than 4 inches!!

WHILE MY LEGS DO NOT SEEM AS BAD AS YOURS, I DO FIND THEY GET VERY TIRED AND ACHEY, USUALLY WITH NO GOOD REASON. SOMETIMES, I WAKE IN THE MORNING AND THEY ALREADY ACHE!! I THIOUGHT IT MIGHT BE THE MEDICATION BUT I HAVE READ, MOSTLY ON HERE, OF ALL SORTS OF SYMPTOMS RELATED TO CROHNS.

Welcome Charmedsupergirl and Delilah. I like your positive name, CSG but don't think I'm going to type it out in full all the time. Yes, Crohn's is embarassing and humiliating at times but here you have found one place where you can talk about it to people who understand. Even if we haven't had exactly the same experiences we have had something similar or have it to look forward to!

Delilah I do find I get tired at the moment, especially when climbing hills or stairs. My GP thinks it's the anaemia caused by my recent drug combo so it might be worth talking this through with your GP or consultant and getting a blood test or two. I think there are things they can do to reverse anaemis if it is, like iron pills and so on. My treatment wasn't working anyway so I've just stopped the drugs and I feel more energetic already, this is the first time I've been able to stay up this late in months

Nigel

Haha thanks just coz im obssessed with charmed lol thanks for the welcome yeah your right, im glad i found this site!x

hi all i may have posted to wrong area but if i dont get this off my chest i will crack up here goes around 7 years a go i started to have diorea i was told it was ibs that was fine but being a bus driver it wasent fun as i needed to go to the loo up to 6 times a day moving on to last year since i was told it was ibs 7 yeasr ago i have never had a day were it wasent diorea long time i have 2 heart attacks at 39 years old last so i was put on all these difrent tabelets i was starting to loose blood from my backside was told it was ok nothing to wory about it was the aspin i was taken anyway i had a masive blood loss 3 weeks later and was given 6 pints of blood after i was given the camera and was told i have colitis i cant go anywere without planning toilets into my journey i go at lease 20 times aday i dont seem to have any control over my bowals ie incontenent i told my ibs nurce this week iam loosing more blood again as iam scared of needing anouther transfuion she took my bllod count and told my i was fine but i no iam not fine its me and my family that has to live with this iam allways sleepy / sore tummy or have pilles / now she thinks i may have crohns  she is sending me out a bootle for my stool to see if their is blood in it but i have stoped bleeding the last 3 days so they will not find any in my stoole and think iam ok iam really fed up with it all on the good side i have social services helping me with all my medication as i forget to take them all and are putting a shower in my house to help with washing my seld at night and also putting a toilet down stairs for me sorry about the spelling and the long moan

manandvan moan away hun, thats what we are here for, so you can vent your frustrations on, im always here to nag to, like you ive been told for years its ibs, i to have lost blood, have piles to die for, the runs all the time, and 20/30 times a day, wont go any where without finding out where the loos are, on route, and when i get there, this is my life now, until i can get the right treatment i need, but getting the right person to see all this is very hard and frustrating. All i can say is hang in there and voice your opinion, although it is you its happening too, its your life and family that it affects, i was in flare up mode for the last 3 weeks, i was so bad my 15 year old was doin the washing ironing, and my 13 year old was doin the cooking, how does that make me feel as a mother, there great kids and will do anything to help, but its not there job, and people out there that we need to be supported a lot more than we are. let me know how you go on. tc xxxsuexxx