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Intrepide, which paper was the research thing in? Dont care bout the sitting talking.....i smell money!
wilsonc, I sent you a PM with the details i remember from the research thingee.
to everyone - i got a question.. do you tell people that you have Crohn's/ulcerative colitis? if so, who do you tell? (i.e. just family or all friends etc) and especially, how do you tell them? its such a kind of embarrassing disease to explain the symptoms of, and difficult to explain that it is life-long but not fatal or anything.
mostly i tell noone at all. my family knows, my ex-boyfriend knew, and a couple of close friends know certain details but not the whole thing. I dont tell friends as a rule, mostly because i dont think they need to know but also cos i dont really know how to best explain it. mostly i like it this way but sometimes it is difficult, like if i am really tired or unwell and have to turn down invitations (just saying i dont feel well) or cancelling plans at the last minute cos i am unwell.. or trying to explain why i cant have standing tickets at a concert (i have pain when standing too long) or go on a trip if it is by coach with no toilet...
what are your experiences with telling or not telling people?
Don't know if you are all aware of the National Ass for Crohn's and Colitus (NACC)? http://www.nacc.org.uk/content/home.asp
They are really good, have lots of useful info on their website which includes advice on telling people about your condition inc work, disability allowence and pretty much anything else you can think of.
They also have local meetings which can be helpful - I recently attended one and found out loads about different alternative treatments etc.
They also have a campaign running at the mo for hospitals to employ more speciailist crohns/colitus nurses - so i'd urge you all to sign up to show your support. On that note do any of you have access to a specialist nurse? I do in my local hospital and have found her really helpful - They run a helpline for any concerns and can get you an appointment really quick or get u a perscription quicker etc.
Sorry this is longwinded (told you i talk to much!), but I also take Mecaptopurine and have found it really helpful. I have concerns about it though as it is a really powerful drug which is mainly used (in higher doses) for treating Leaukimia. It is supposed to be quite harsh on your liver so I make sure I drink plenty of water. Hope they make progress with new drugs/cures cos dont fancy being on it for the rest of my life.
Rant over... sorry!!
What differences have you noticed when taking mercaptopurine? How long till it takes effect?
Bezmond (and others) what do you for a living etc? Hows it got you affected?
well, i didnt tell anyone at first and completely hid my symptoms until it was a case of telling someone or being found on the floor of my bathroom and dragged there.....
But aside from that, telling people was hard at first. Like its been said, its one of the most embarassing things that can happen - "Yeah i have this condition that quite often makes me shit my pants" - thats one grade A conversation stopper.
But when you think about it, the only people who really have to know anything approaching details are close friends and family....and who can you tell if you cant tell them?
Anyone asks why you take meds, why you look so thin, why do you have to go to the bathroom so often, "I have a condition/Im ill/fuck off and mind your own business" depending on your mood that particular day. hehe.
I have found that with people who arent close enough for details, calling it a stomach condition is easier to understand than "Large Intestine" or something equally particular. People can make the connections in their own mind about frequent toilet breaks and a stomach condition without having to go through the embarassing detail of actually saying diarrheia (sp?).
My girlfriend was the oddest to tell because i met her a long time after i got ill, so by this point anyone who knew was a close friend or family....and then this new person appears in my life.....and a condition like UC or Crohns is most definately not a turn on for most prospective couples. lol. Cant offer any advice on how you do it exactly as people are all different, but the same as above applies.....the closer somone is to you the more they can handle knowing without running away.....dont give every person who asks a medical history breakdown.
Hope your all healthy (at the moment)
Peace
cool, signed it
I havent joined NACC cos i didnt kno what they could realy do for me. I did put my name down on the site for some groups they were gonna run but i couldnt go to any in the end since it was in work hours.
yea, exactly what i was thinking
I am a family support worker. It hasnt affected my work that much, really. I am quite lucky in that i work flexi-hours so if i have a doctors appointment (or am just running late cos of having an upset stomach in the morning), I can just make up the hours later. I think the main way that it affects me in my job is that because I am out a lot visiting families in their homes, I need to be pretty planned about where and when i can find a toilet along the way. Often have to use toilets in client's houses which is not perfect in any way but seems to be ok and i dont really have much choice so i just have to.
those of you living in UK, do you declare your crohn's on those medical forms that they often make you fill in for a new job? I always wonder whether to fill it in as i am unsure if people would judge your ability to do the job because of this :chin:
As regards to relationships I was lucky...in a sense because I started going down hill at university where i lived with my gf, so she went through it with me, unfortuanately over the summer we split up, I admit it, it was my fault. But I am sure some of the apathy was due to the shock, both mentally and physically, of being diagnosed. Anyway we came back to uni where we again had a house together, and ended up back together, since then she's been an absolute star, putting up with me not finishing meals, rushing to the loo, being lazy and boring, being "smelly", lol u all know what im talking about, shes been there when I was preparing for an examination and was being "cleared out" so to speak, shes come to hospital etc etc. She is a real aid. She can see what it puts me through and I think that because of it we may have got stronger. Our bed life has been very good, so no real affects there, just she cant be too heavy when sat on my tummy and after big meals....forget it for a while!
Anyone else on mercaptopurine get really tired after food and get cold easy!?
Hope you'r well all.
Further on the topic of telling people, was wondering if anyone had ever come across an article/pamphlet or something which explains crohn's that you could give to a friend or someone to explain it? I had a quick look around the internet but the 'factsheet' type things I found are mostly really medical and not explaining it simply.
Just finished my 2nd week on mercaptopurine, doesnt seemed to have helped much really. Early yet!
damn, if she wins, i reckon we can sue all the trains for exactly the same stress to us
Handy as some places like shops can be a bit funny about you using them.
Plus it got me out of a parking ticket!!
I've been told its a form of artritus which people with crohns can develop and is linked with the condition - ie when my legs flare my crohns is normally worse.
Other hidden effects of crohns are tiredness, mouth ulcers, eye infections, ankle swelling.
I sometimes think some of the hidden effects can be worse than the actual disease itself!
Hope they find a cure or new treatments soon cos its doing my head in.
Think im just having a bad day though :crying:
Also anyone get big red marks on their legs etc, they are sore like bruises but are rosy red and raised a bit. Some are only the size of a 5 pence piece, some are as big as 50 pences.
Going to docs tomoro, feel like shite!!! :mad:
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:banghead:
hope things go ok at the doctor's, post back and say what happened
on the subject, i havent got any joint pains but i did go through a time of bad lower back pain and the docs said it was bcos of the crohn's. I also have no end of problems with my eyes which they say is due to that too.
They said to just put up with it! Gee thanks!
Im feeling good this week, no joint pains or nothing! Hope your all feeling better
How u guys feeling?
Moving house next wknd though so thats gonna be stressful!
I am ok, was a bit up and down last week but then again that was a funny stressful week so its understandable.
feeling good now, i think the nice weather makes me feel better
just wanted to write cos i have been feeling terrible this week
also wanted to ask you guys, have any of you regsitered as disabled because of your crohn's and if so, does this actually have any benefit?