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What's in a title... Hello from me and my story so far

K

KevinPG

Well first up hello, and a big thanks to the forum owners/admin and all the members already. I have read a lot on this site over the last two weeks and must admit it has been an enormous source of comfort, information and experiences.


What brings me here, well a nightmare 18 months really. I'm 28, was pretty healthy (slightly overweight at 16 n half stone, 6foot tall) but played football and cricket, gym 4 or 5 times a weeks, then boom, appetite goes and i struggle to eat and keep any food down.
Will try and write in a manner that lets any readers know a bit about me, add a personal touch so to speak. I know when i get typing i can go on a bit


Over the coming months my weight started to drop drastically n really bad stomach pains, eventually resulting in a partial collapse at a football/soccer game (we won 5-1, everton) but i was in the St Johns area being looked after, seeing none of it
My GP had me sent for kidney stones tests, Ultrasound scans all which showed nothing and i got treated for a water infection. This was august,in december i begged to be sent to a stomach specialist at the hospital

I first saw the specialist at the hospital in Jan, they assumed from my symptons i had crohns and i underwent a colonoscopy first (showed nothing) then an Endoscopy (showed nothing) before the barium meal/X Ray things showed that approx 50% of my Ileum was infamed.
I have now lost 7 stone, couldnt work full weeks and was strugging to walk and get food shops in some days, or een leave my bed.

The diagnosis was 4 weeks ago now, i am 13 days in to Predisolone (sp) treatment, 40mg for 2 weeks, 30mg for 2 more then tapering off 5mg for a further 5 weeks... enzyme tests have been sent fo move onto Azathioprine and MP after am done on the 'roids
The first three dayson Pred were hell, fever like symptons and throwing up violently with a lot of sweats. In your face though richard Ashcroft (faed verve frontman and solo artist), but the drugs do appear to be working, i know its early days but a big positive.
The pain is much much less, almost gone but not quite. I can eat though, my word can i eat. Forgotten what being hungry was like but this is a new level (i darent touch a lot of foods though, red meat is a no no for one and fresh fruit juice ruins me) ... and i cant sleep more than 5 hours a day at the moment, but i have energy and can get more fresh air. Positives am sure


Anyway, that's where i am at. I had 3 weeks off work, one and a half being looked after back 'home' by my mum (bless her, there arent many people am close to in Liverpool having moved here 4 years ago from Preston) .... but yeah, work, went back yesterday part time for a few weeks before attempting full time again
I do accounts/finance stuff for a bunch of bars n a hotel around the country [liverpool n manchester mostly atm] (luckily get to sit on my behind all day)


And that's that i guess
Questions ... yeah i got loads of them
- will life be the same again - no, i can accept that and now it's much more clear in my head i am looking at/for positives
- work/ambition? Still there but not on same scale, other things will defo take precedence
- Sports/fitness - accepted i wont be playing rugby but i like so many i will always find ones i can play (cricket is easy!)
- homelife/friends - well you learn a lot about them when you are put through something like this
- What will my limitations be? Not a clue
So positives
- picked back up other hobbies, one of which i really love nad has a great community of people (and met a lot of already considered good friends)
- it could be worse, much worse
- clarified a lot of life goals


Anyhow, i've rambled enough for now, if anyone is still reading, i thank you, i've got lots left to learn, understand, and no doubt go through but am hopefully on the right road

If anyone skipped to the end, i thank youfor being part of this community, which i must stress again has been invaluable to me the last two weeks

I hope to speak to some/all of you and contribure if/where i can
Back to tonights football (My Everton are winning for the first time in months) ... Saturdays rugby and cricket could provide me a good boost too with my teams being in finals (gutted i cant be at Wembley but there will be more chances!)

Kevin
 
scottmyster

scottmyster

HI Kevin, welcome to the forum, it was rough going there for awhile but glad in a way you got diagnosis early. So you got on the right meds and it's working for you. i am glad you very active and that is impressive. and that you have a full time job that's super. i have had crohn's now for 21 years and in remission for 15 years so remission is achieveable.
just watch what you eat and kind of buy a little diary for yourself and write down the foods that agree with you and the ones that don't and keep track of them. the forum is very supportive and quite a family unit and quite knowledgeable so if you have any questions just fire away and the forum will respond. nice to meet you. best wishes

scott
 
Astra

Astra

Moderator
Hiya Kevin
and welcome
not so far from me, either way, Liverpool/Preston!

I'll try to help if I can
Firstly, once you've got this inflammation under control, there's no reason whatsoever why you can't lead a 'normal' life, do the things you did, go to where you used to go etc
Secondly, there's not enough awareness about this crap disease, so educate your mates, family, work colleagues about it.
Important to inform your boss too, you're covered with the Disability Discrimination Act (Equality Act 2010) reasonable adjustments need to be put in place for you, such as toilet breaks, tolerance and risk assessments etc
I had a week long stay courtesy of Whiston last year and was on Pred for nearly a year. I loved it! (but I'm a weirdo)
I loved the wizzy speedy feelings, the energy and the munchies, it made me feel better than I've ever felt!
My advice, go with the flow, don't fight the Pred, if you can't sleep then watch the telly or something, nap when you can but don't fight it, this will make you anxious and nervous = paranoia! Insomnia can be a killer on Pred!
So, good luck Kev, your positivity shines thro, this will keep you in good stead whilst recovering from this current flare!
Any questions, just shoot!
Oh, we're all LFC in our house and Saints!
lotsa luv
Joan xxx
 
G

Goldfish

Hi Kevin. You sound like a really nice bubbly person and I like you already Ha! :biggrin: Great you have so many interests and definitely take Astras advice on the disability in the workplace. Hey we all need some fuss and pampering (if you can call it that) Look forward to reading how your are getting on. Goodluck!

Astra, we are LFC in our house too. Husband mental on them and my dad loves them too and is from Wallasy. I follow them because as you know you are born with your football club.....I couldn't tell you who is who but on the whole I'm a supporter!
 
J

jesseiam2

Hey Kevin, dont give up on playing sports. I am here in the US and the Quarterback for the American Football Jacksonville Jaguars is David Garrard and he has Crohn's. He is an elite level athlete. Here is a bit about him: http://www.ccfa.org/about/news/garrard

While not Crohn's, Brock Lesnar of the UFC just had his 2nd surgery for Colitis: http://mmajunkie.com/news/23783/ex-...ergoes-surgery-expected-to-return-in-2012.mma

Having Crohn's disease isnt the end of the world, but it does suck, lol.
 
Jennjenn

Jennjenn

Hi welcome Kevin :)

I am glad you found the forum!

I had many questions also when I first got diagnosed. I found out a lot of things on my own from experiences (ex: life, friends, work, sports/exercise). I feel that everyone is affected differently by this condition.
As far as work I learned the hard way. I learned my limits and had to take a few years off to get my health on track and change my career. Still working on the health part.
I agree with you and know about you learn who your true friends are. I am greatful to have my close circle of close friends.
You seem to have a positive attitude and that is most important. I always say, "It could be better, but thank god it's not worse because it can be".
 
Astra

Astra

Moderator
Hiya Goldfish!
I've no idea who any of them are either!
I was born in Bootle, Liverpool, so of course gotta support LFC! My Mum and Dad loved them too, so was brought up with LFC.
xxx
 
M

MADiMarc

Hi and welcome! You seem to have things pretty much in hand at the moment. Good for you! Like Joan, I loved pred! My house was always clean, I could eat gobs of food and my paperwork was always early at work! The only limits you will have physically are your choice. I am not an active person outside work. Hate to sweat; but it's my choice. I have a friend with CD that competes in those marathons (like I would ever jog; I have a car) and he does fine. See what you can do, you may surprise yourself!

Good luck!
 
K

KevinPG

Thanks for all the messages

Yes, it's two am and any normal tIme I would be sleeping. But am wide awake again, it may begin to do my head in a bit but am getting loads done (painting a hippogryph model and some goblin wolf riders may not be so important though .... Geek need yada yada)

Didn't realise how much I typed until so read it back now. On reflection it does look very positive, work this week (all two days ha) has been a breeZe even with no-one having covered me for three weeks, leas happy about a disciplinary hearing tho but more Important things atm. Really am hoping it's not just temp pred-led pain relief though!


Cheers jessieaim for the words re sport n exercise... Am defo not quitting them, just being more selective! Cycling, cricket, casual football and lots of tennis will definitely be on my agenda asap.

Lfc fans, get outta my thread with such talk (I jest, we all have our prOblems ;) ) ... Double brackets on iPhones don't make easy message writing btw, note to self for future forum things, use the netbook!

Food diary is defo being kept, my gave advice gleamed frOm this site so far... Am craving a curry though but will give it a miss for a while longer.
Loads in my head still, could prob waffle nOnsense for hours but am holdIng up well... Better than expected after the state I was in three weeks ago... So again thanks all for playing a part in that

Enough for now, try a book for a bit although sleep may actually be coming on
 
K

KevinPG

Reading this back makes me sad, sorry for bringing it back up

Not dealing with it anywhere near how i thought i could. Currently all positivity has been sapped out of me and feel so alone. Pretty certain its got well in my head, and done a few stupid things as a result


In November 2011, just after these posts, i was made redundant (the scoring was done on attendance and sick record as well as ability to do the job, i came just below this, unfortunately i was too weak to fight it) .. ended up ruined financially before getting a new job in March 2012

After the steroids, i tried Azaxzxzxprine (spelling from top of my head i have no idea) but had really bad reaction to it and been on infliximab infusions since. They mostly work, the pains gone which is great :) and put weight back on (more on that in a min)



So the bad...

*Loneliness
*Lost so many friends, still wary about going out meeting new ones
*Lack of energy (combination of work - long hours altho delving into my mind today are many reasons for this - petrified of losing my job when started so worked loads of hours, pressure in it means if stff doesnt get done am likely to be fired (they dont exactly follow employment law well) ... but also now can say i have work to do instead of doing things with few ppl who do ask me)
*Work - following on form above, i was desperate for a job when got offered this, had run out of stuff to sell, 50/50 on enjoyment there
*Weight ... going from 16 stone sport fanatic, down to 8stone, i am now back up to 16stone but a completely different shape and i hate it (fat)
*Money ... short term i a still (pardon my french) in the poop (i refrained!!) ... has been a year, every time i think am right something comes up. Spent the weekend beating myself up about it until i went outside to read in the sun and come back with eye of the tiger/rocky training music in my head, even typing this down helps!
*Ive not been able to replace my hobbies, i dont go on nights out drinking, but the days when i have had nothign to do and felt worst i have been gambling. I even think i know what it is, it provides a small thrill/excitement that i dont get from anywhere else. If am out or seeing someone i dont even think of it and hate myself for it the next day ... have only told one person this (closed all accounts today)
*ex girlfriend, did meet a wonderful girl. Clueless as to what happened, distance didnt help, and all kinds of mad reasons ...but for 6 months i had someone i could tell anything to, the one person mentioned above, and was heartbroken which hasnt helped my wanting to meet new ppl etc



So from this, too much work, no energy, pushed people away, have got myself in a terrible rut


But .... the good

*Work ... sometimes. It keeps my mind of things, i have a review this week and if i dont get a substantial payrise i will cry (not tears, but wil be shocked for sure)
Theyve also built a gym, which is lovely, and as a result of my fatness have been given a free membership (yeah, is that obvious)


*Education ... not entirely sure how, but passed all five certificate level cima exams first time since last summer
(this is also a bad thing, work paid for it, but ties me in to being there for another two years or i owe back the best part of £2k, BUT does increase the average salary in the uk by £5k, and hopefully mine next week)


And the future

*longer term ££ ... depsite being in the brown stuff the next three months, i have been extremely fortunate to have been left a percentage of my grandmothers estate following her passing away last year. It will clear the debt i have (around £2k), provide me with an emergency fund (in case am sick again and have time off) but also mean i can afford to leave my current job




But most imporantly, seeing things arent as bad as many others again has given me a huge kick up my behind to try and get off it and live again while i can. Its so hard to smile about things sometimes, despite the actual crohns symptons having been rare the last half year its still got a huge hold on me. The only times ive really felt 'crohnsy' have been when i think too much and stress about everything so i think i just retreat into a state of nothingness or hide at work

Its all on me though, feel like i need some help, or support, or someone to believe in me.. truth is, am more scared about life than ive ever been



Sorry for going on a bit
 
M

mandzd

Hi KevinPG

After typing CIMA and Crohn's into google, this thread popped up. I was actually looking for any information on whether CIMA have any experience of students suffering from Crohn's Disease.

Are you are still studying CIMA? I do distance learning, so I never meet any other students through classrooms and have been wondering for ages if there is another student out there with Crohn's. I guessed there would be but didn't think I'd find them.

I hope everything has improved for you and your job is going okay.

Mandy

:sign0144::study:
 
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