Newbie

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Aug 2, 2010
Messages
9
newbie

hey all

Was first diagnosed as the tender age of 9. Now 23 so have lived with the condition for around 16 years.
Spent most of my early days going to hospital a few times a week for blood test etc etc. Missed alot of school. Lost tonnes of weight.
My consultant and doctors at the time couldnt make up their minds whether it was CD or UC. IT must of only been about 12 years ago they finally decided it was Crohns.

Iam by no meens lucky but my condition wouldnt be classed as the severe type. I had my first flare up when I was diagnosed and since then (touch wood)

Ive found many people do not understand the disease let only even heard of it. It stopped me following my dream of joining the RAF which still sucks to this day.
you can tell by pictures at the time I became ill just how much weight I had lost, and still find it hard to gain weight to this day.

It was my own choice back in 2004 to stop taking the medication I was on (ascol) if my memory is correct. The reason I did this was to try to prove to the medical officer for the RAF that my condition would not affect me.

I find I can eat almost anything I want or drink anything I want, the one thing that gets my crohns playing up is stress.

Obviously my story is alot more in depth, but first time on a forum so not excatly sure what to write etc I just thought it was about time I maybe contacted and spoke to other people who have gone through this condition. I have maybe only told two previous ex girlfriends about my condition and obviously my family know. Apart from that its the one thing about me I dont share with people....why I dont know.
My family have been the best support since I was diagnosed though it would be interesting and I suppose nice to share and talk to other people in my (your) situation as people dont understand what its like. When you need the toilet so bad, when you get the most horrendous stomache pain.


My mum is a nurse and she has encountered many people who have been diagnosed with crohns, and she tells them about me and how Ive learnt to deal with the disease. So atleast some good is coming from it.

Im a very active individual and play alot of sports. so yeah thats a brief story about me, lived with the disease since I was soo young so dont know life without it to be honest.
 
Last edited:
Hey fellow Brit,

Where abouts you from in the country? Welcome to the forum, I was the same as you, had suffered for years and never really spoke about it to anyone. This is a great place to ask questions and get support. Have a look around and your no doubt find lots of info.

So you currently on no meds and in remission? Whoop if you are

Jo x
 
hey Im from Bristol. how long have you had the illness?

yeah currently not taking anything, how about yourself?

Jack
 
Hi Jack
and welcome fellow Brit

glad you found us, you can talk to us about anything! Heard it all before!
Little bit of advice from an old Crohnie, become complacent and blase about this disease and you will pay big time later on! You might think you know what you're doing, but you've no idea what's going on inside, slowly and sure as eggs is eggs, you will be scarring!!
The reason that we take Asacol for UC and Pentasa for Crohns is as a prophylactic, a preventative to ward off future flare ups, do yourself a favour, and think about a maintenance med like one of these amnio salicylates!
Just my personal opinion from personal experience, cos I didn't take mine neither and nearly died in hospital from a blockage caused by scarring and narrowing and my own stupidity!
lotsa luv
Joan xxx
 
Hiya Jack,

I have had a similar life, very hard to accept. Recently I relapsed and that was because I thought I could cope without the meds. Eating, drinking anything maybe was fine but recent stress in my life might have been the cause.

I am 18 so I am still reasonably young so I have questions what only people with the condition, who is a lad can answer. If that's okay?

Thanks and welcome Lewis.
 
hey joan ill look into those meds, do they actually work and what side effects if any occur from taking them?

yeah lewis stress is the major problem for me too, though its hard to try and learn to 'chill out' and not let things stress me out.

If I read your post correct you can ask away mate. Ill try and answer whatever I can

jack
 
Hey Jack, welcome!! Geez, feels like I'm joining a British family reunion:), except for Jett of course. Glad you're here, good luck and stick around!!
 
Hello Jack and welcome,

Glad you found us. As you would have already seen there are many young adults on the forum so you are certainly a welcome addition.

Was there any particular reason why you decided not to go back on teatment when you didn't get into the RAF?

I hope you stick around so we can get to know you better. Welcome aboard!

All the best, :)
Dusty
 
Hi, and welcome to the forum! Looking forward to seeing you around.
 
hey all tah for the welcomes.

to be honest Dusty as I wasnt taken meds in the run up to trying to join the RAF and it didnt effect me in a bad way I just made the choice to stay off them. I think I still have a few boxes somewhere so if anything ever happens then there at hand.

hey lweis do you meen symptons before I was diagnosed?
 
Hiya Jack

I've been on Pentasa for 5 years since dx, and I was in remission all that time! til I stopped taking them, and ended up in hospital, but I was very very stressed too, divorce, moving house, stressful job etc etc.
No side effects whatsoeva!
have a rethink Jack
good luck
xxx
 
Hey Jack,
Sorry haven't been online for a while as work taken over, how dare it !!

Great to hear your med free !! I am have been on long time meds for about 6 years, aza, pentassa, amyitrpyline, iron sups the list goes on but hey I am feeling good so that is all that matters.
Bristol only down the road from me, well not far. I am in berkshire
Jo x
 
tah jennjenn :)

its ok work seems to rule my life atm aswell.

Yeah the main thing is your feeling good, do you still have regular check ups with your consultant? hospital?

Ah Berkshire not far at all :)

Jack
 
Hey another Bristolian! I can't remember which thread I saw it in but there are at least two more...talking about a Crohns group that meets near temple meads.../random info.

I'm not too far from you either, up the road in Cheltenham!

But I digress! Welcome to the forum! :D
 
Hey another Bristolian - welcome. I'm new to this forum too - lots of useful tips and info to pick up, hope you find it as useful as I have so far.

Becky x
 
Hey there and welcome,

I would totally advise you to get back on the meds asap as I thought I could stop mine but after not being on them for a couple of years I am now facing either a colostomy or an ileostomy.

Better to try and prevent than to try and cure later on is now my motto.


Take care xx
 
hey hornetsting, i've had crohns for 16 years, also tried joining the RAF when i was 20, i wanted to be a snowdrop ( RAF Police ) unfortunately the medical officer told me i was permanently medically unfit ( due to crohns ) which i thought was wrong, anways, i've been taking mesalazine ever since i was diagnosed, i get regular flare-ups but i tend to work through it, i beginning to reconsider doing that in future lol.
 
no worries lewis, intial symptons now thats a tricky as its been so many years and I was a wee-un. I remember I was passing blood and getting really painful stomache aches etc.

Ill check with my parents sometime as they will remember it better than me. I do remember it took while for someone to come out with what I had, though I was told for many years I had infact UC and not crohns.
disease now days is ok, I was only talking to someone on here (wont use their name incase they dont want to be known) and the fact is unless I binge drink or get really stressed out my crohns doesnt bother me. Im lucky in the fact I can eat what I like, play all the sports I want and I dont have any trouble (touch wood)

how about your lewis?

Hey annemaire while you were off the meds how was your crohns? were you having regular flare ups?
I agree to try and prevent it, but since my last colonoscapy my GP etc knew I was coming off my meds and have supported me. IF I have any troubles I just got a see my gp as my notes are open case.
May I aks why you decided to come off your meds?

Phill1976 I agree was also told I was barred from applying. and that includes the reserves aswell which sucks. I guess until they figure out a cure then people in our situation cannot sign up.
I too started on mesalazine, do you mind me asking if theres anything in partiuclar that starts your flare ups?

Hey becky, so how many bristolians is that now then lol? hope your well
 
no worries lewis, intial symptons now thats a tricky as its been so many years and I was a wee-un. I remember I was passing blood and getting really painful stomache aches etc.

Ill check with my parents sometime as they will remember it better than me. I do remember it took while for someone to come out with what I had, though I was told for many years I had infact UC and not crohns.
disease now days is ok, I was only talking to someone on here (wont use their name incase they dont want to be known) and the fact is unless I binge drink or get really stressed out my crohns doesnt bother me. Im lucky in the fact I can eat what I like, play all the sports I want and I dont have any trouble (touch wood)

how about your lewis?

Well my first symptomcwas needing to go to the toilet...a lot. Then pains, and eventually the inability to really leave a toilet for longer than half an your. Then blood. Thats all really.

Stress seems to be my trigger.Booze seems to stop my symptoms tbh, mainly as I am to drunk to notice i am in pain, and the only reason I seem to go to the toilet is to let out all the booze I have drank.

Well i mainly drink spirits. When you drink what do you drink? By the sounds of it people who drink beer seem to get there symptoms. But I shall start a thread to find out if this is true.

How long since you last relapse?
 
hey hornetsting, my flare ups start usually through stress, i work as a security officer and nearly everyday is stressful, but but it tends to kick it off when i've delt with the same people everyday for a few weeks.
 
Back
Top