Crohn's and Surgery

[Kuwabara]

What % of Crohn's patients have surgery? Is it all? What's the general picture? I'll admit, I am worried- only recently been diagnosed and I feel good after taking medication for 7 weeks now but as I'm 22 I feel like I'm at the top of a great downwards spiral that comes with the worsening of the condition with age.

 

[imisspopcorn]

I'm not sure I know the statistics on it. I had about 10 years in between diagnosis and surgery. I heard once that it is about every 5-6 years per resection, but I don't know how accurate that is. The thinking regarding medications has changed tremendously since I was first diagnosed. The outlook is getting much brighter for us Crohnies

 

[sra2]

Hi there,

To be honest there is no definitive answer for that but most doctors quote that roughly 70% will at some point have an operation. Although that sounds pretty high it doesn't necessarily mean major ops. It includes things like drainage of abscesses and dealing with fistulae. I'm only 23 and I know its daunting to think you have the rest of your life to deal with this but personally I wouldn't worry about the future now, it'll only consume you. The disease doesn't necessarily progress as you get older...its known as a relapsing and remitting disease, so each flare up may be similar, who knows. I pesonally think there is a bit of spectrum for crohns, as you'll see on the forum everyone has there own story...some people unfortunately get it worse then others, but I suppose it'll take a few years to see how it progresses.

Hope that kind of helped!

Sarah

 

[chubb]

I remember reading things when i was first diagnosed that a high majority (can't remember the exact numbers) of Crohn's sufferers would require surgery at some point. I spoke to my consultant about it and he said that the way they tend to treat these days lessens the likelihood of needing surgery in the future.

For example, after my diagnosis i was immediately started on Azathioprine as well as Pentasa, and at the same time as tapering off pred, i guess to try to stop the disease in it's tracks and really get it under control. Whereas my doc said that previously they would have just given Pentasa and it would not be until it was clear that wasn't going to "hold you over", so to speak, that they would give you another, stronger drug. I.e. i would have had to go into flare again, have it controlled by the pred etc etc before they would have considered Aza.

In my head, this means less chance of surgery because less inflammation=less scar tissue=less likelihood of blockages etc?

Anyway, hope this helps - i found it pretty reassuring. I mean, it's not great having to take what i suppose are some pretty serious drugs but for me it beats the prospect of surgery hands down!

 

[Kuwabara]

Cheers for the info guys. I'm consdierably reassured! Let's just hope modern science can finally kill this disease off in the next couple of decades. With Stem Cell research and all that malarkey.

 

[farm]

I've always heard and been told that Crohns is a surgical disease and that they wait until the patient can't take it anymore, then operate.
I had it 15 years before I had a surgery and bowel resection. Of course each case is different and surgery has changed so much over the years.
When my father had his gall bladder out in the 70's they cut him from navel to almost his back. When I had an open appendectomy and hemi-colectomy last year I was left with only about a 13" scar.

 

[Agent X20]

Kuwabara
Everyone's different. But... I was diagnosed over 36 years ago and not had surgery yet. The Doctors more or less wrote me off when I was 16, and told me so (shame on them) but I've done loads of active stuff in the meantime.

 

[Agent X20]

I had surgery on my hip... but that wasn't crohns related (or maybe it was related to pred... I'll never know!)

 

[cheeky]

i'm no expert, but i just assumed it's inevitable that if you're crohn's is pretty severe, you'll eventually need some surgery at some point in life... i know that i'm gonna be getting it at some point soon. at least, that's all i've been told up to now.

when i first was diagnosed, the surgery thing is what i thought 'i REALLY don't wanna have to get it' ... but at this point, although i feel nervous about it, i realize it'll probably improve my quality of life by improving my condition.

 

[Bindy]

I like you Kuwabara was only diagnosed recently. I am 26yrs old and crapping myself (excuse the pun) that I will need surgery. My doctor has told me that at some point I will 'most likely' need an op but thats because I have moderate to severe crohn's... perhaps it would depend on your severity.

 

[Kuwabara]

Don't worry Bindy,we'll Lance Armstrong it together and avoid surgery I'm sure of it.

 

[ErinDF]

Hey Kuwabara,

Acording to the CCFA -- about 2/3 to 3/4 of patients eventually need surgery. http://www.ccfa.org/info/surgery/surgerycd But as discussed above, not all of these surgeries are terribly invasive. But I also thought I'd pipe in as a young person (26) who is about to have a second major surgery (permanent colostomy). Though surgery does suck...kind of big time...its definitely not the end of your life. For me, its made me feel so much better that even though I don't love it, I'm somewhat glad it happened. Sort of. (As you can see, I'm a bit conflicted)...

So, I guess the whole point to this post is to not worry TOO much about surgery! I mean, hopefully you won't need it. But if you do...i may just make you feel alot better.

Erin

 

[Kuwabara]

Thanks Erin, at the moment my Crohn's seems pretty mild, I mean last week I was extremeley naughty and had a bit of a bender over the weekend. 2 Long island ice teas and 5-6 beers on a night out in Manchester,then went to a football match and was catching trains all day the day after and didnt get home till 11 at night.Despite the alcohol,dancing till the club closed at half 3,eating junk food all weekend etc by Monday I was fine once I'd caught up on my sleep. Somedays I forget to take my medication cos I kinda forget I'm ill/don't feel the urge to do it. I'll spot a letter from the doctor or something that reminds me or I'll have a tiny bit of discomfort and i'll realize 'Oh yeah I'm meant to be ill!'.

I'm 6"5 and 2 months ago when I was first got dragged in and diagnosed I was down to 10 stone and I'm already back up to 11 now- my BMI is 18.3 which is still technically underweight.(18.5 is the into the 'normal weight'). So you can imagine what I was like before.

Let's just hope I can maintain this upward trajectory

 

[Robert kipnis]

food is key be careful what you eat, when youeat and how much

 

[shazamataz]

Hi James,

It's great that you donlt seem to have the Crohns very badly. However i would suggest that you be a little more careful than a normal person your age with regard to the drinking and partying etc. I am no expert on this at all, but would think that doing all this COULD potentially make things worse for you in the long run. And because you are so young and so damned awesome, I'd rather see you being sensible and keeping your health so you can go on and conquer the world with that amazing brain of yours!

 

[Kuwabara]

Hi James,

It's great that you donlt seem to have the Crohns very badly. However i would suggest that you be a little more careful than a normal person your age with regard to the drinking and partying etc. I am no expert on this at all, but would think that doing all this COULD potentially make things worse for you in the long run. And because you are so young and so damned awesome, I'd rather see you being sensible and keeping your health so you can go on and conquer the world with that amazing brain of yours!

Ahh don't worry Shaz my Kiwi confidant! - the bender in Manchester was just a release for me after 2 months of being shacked up,pilled up and illed up. I wasn't a big drinker at all before I got ill - I got my partying days in early - We could get into our local nightclub from 16 years old! I've seen 14 year olds in there. From 16-22 were my partying years. Now I have to 'find a girl,settle down, if you want you can marry...'
http://www.youtube.com/watch?v=Q29YR5-t3gg

Thanks for the compliment on my brain - I suppose it could be worse.I suppose your not too bad are you? (pats self on the head)- that was me talking to my brain. It does have a annoying penchant for finding silly things terribly amusing like dogs on skateboards and giraffes wearing sunglasses. Apart from that its all good. I don't want to conquer the world though Shaz I mereley want to surrender myself to its beauty.

"To see a World in a Grain of Sand
And a Heaven in a Wild Flower
Hold Infinity in the palm of your hand.
And Eternity in an hour"
-William Blake

 

[bruscar]

Hey Kuwbara,

You sound cool mate, and a bit of a lightweight too.

Wow i must send you a couple of stone !!

You are keeping the chatting up pretty good too. . mind you Oz would be a long way to go !! haha just kidding !!

I am as you can see on the same side of the pond as you.

I got a quite severe deal of crohns i suppose you could call it a bum deal !!. . . .anyway, i was heavily dosed with steroids and a whole bunch of other meds and then after a year of that surgery began and to date i have had 5 big ones and ( to keep the humour going ) i now haven't got an arse in me trousers !!


But i am doing ok.just remember stay positive matey

Bye for now, i log on every couple of days so apologies if you ask me something and i don't reply straight away. but ask me anything you want to.

Bruscar

 

[Kuwabara]

Hey Bruscar - cheers for the cool comment.I probably am lightweight by Irish standards!I'm just not into my drink - my Grandad died of alcoholism before I ever got to meet him maybe that's what's held me back.

I also went on a 18-30 holiday a few years back and that just killed me drinking everynight till 5 waking up at 10 for 7 days in a row - I came back more stressed than I went! Eversince then I've toned it down. I'm just don't buy into the head down the toliet boasting about how drunk you are 'thing'. Especially given that in my town there's little else to do and it destroys people and families. My ex best mate's dad is an alky and he's just a pathetic figure of a man. His wife carrying him up to bed cos he can't do it himself,hasn't had a job in the 20 odd years - bangs on about how everything was golden when he worked at the mine. Don't get me wrong drinking ain't the spawn of the devil - its just not for me. Its more a social thing. anyway I've got Shaz looking out for me now so I've got to keep on the straight and narrow.

Cheers for the heads up man - I'm gonna need this kind of advice as I lose my youthful exuberance! Wiley veterans dispensing their wisdom eh? Having had 5 surgeries that makes you the Field Marshall of Crohns! I'm a Private Second Class at the mo - Greener than the Emerald Isle itself!

 

[shazamataz]

James you are so very smart and funny. If only you were 20 years older!!

Glad you aren't one of those binge drinking louts (like I used to be), I'd hate for you to ignore the Crohns and end up getting worse. You sound on to it enuff to do what you need to do!

And whomever said I was from Oz? Shame on you! I am a Kiwi!!!!
Well, actually I was born in Northern Ireland but am mostly Kiwi

 

[Kuwabara]

Calling a Kiwi an Australian is an insult of the highest order is it not?
Its all about the Flight of the Conchords when it comes to New Zealand!(please tell me you've heard of them!)

Shaz for you ,I wish I was 20 years older. To quote the great philosopher Akon

'Lonley....I'm so lonley....I have nobody....for my own ooooooooooooooooooooooooooooooaaaaa' (But obviously not in that really squeaky high voice thing he has)

Shaz tell me about you're wild days as a binge drinker - what era are we talking? I don't want to be cheeky and suggest one. I can imagine you on a Saturday night getting down to Earth Wind and Fire. Am I right?

 

[shazamataz]

Earth Wind and Fire are a little before my time! Yikes, I haven't hit 40 yet!

Yes I have heard of Flight of the Conchords but never really watched them - shame on me I know!

I really do like the Rhys Darby fellow who was in the TV show (not one of the actual Conchords).

My binging days were more to the likes of Nirvana, Pearl Jam, Guns n Roses and the Smashing Pumpkins (early nineties grunge intoduction was awesome!). I used to drink a LOT. Thats what we do here when we go to university. I have vomitted enough in my lifetime for many lifetimes as well as doing many things I shouldn't have. Oh well.

I don't really mind the Oz thing, I am not a sports fan so don't care much about the rivalry between us and them, in fact I am usually most pleased when we lose, especially the rugby, because everyone gets all knickers-in-a-twist about it - there is more to life than rugby!!!!

This thread has now officially gone WAY off topic!

 

[Kuwabara]

Given that its my thread does it matter? I'll throw in an arbitary question about surgery if it pleases the Gods on high.

Does surgery hurt? Do they use a big scapel or a little one? How many doctors can fit in a theatre? I wonder how much do surgeons earn? When a surgeon is at home and doing the dishes does he shout 'Scrub up!'?If a surgeon dies in a forest and make a sound but no-one is around to hear it does he/she make a sound at all? These are all questions that I am dying to know and will be burned on my concious untill they are answered.

The Conchords are immense. Rhys Darby is brilliant - he's huge now isnt he?
Pearl Jam- Ten got me through many an adolescent night. I always preferred Soundgarden and Pearl Jam to the other bands of that era. Never really 'got' the Pumpkins.

I've got massive respect for the Kiwi's - how a nation of 4 million manages to compete in Cricket and be the best at Rugby is beyond me. You all seem a nice bunch. My friend has just got back from Wellington actually - he spoke very highly of NZ but said it was a bit too quiet for his liking.

 

[shazamataz]

:ylol2: you are just too funny!

Rhys Darby is bigger here now than the other two - he's doing commercials now and everything, very funny bloke.

I think our problem is that we aren;t actually the best at rugby anymore and noone is happy about it - i couldnlt give a fiddler's!

I forgot about Soundgarden - they were one of my favs as well!

Surgeons eh? Imagine them carving up a turkey! I expect surgery does hurt a lot but you would be unconscious at the time, unless you are one of those people you see on late night documentaries who wake up during the process!

Well put, this is your thread so you can talk about anything you want! i expect, though, that given how well you are doing, surgery will be a long long way off for you

 

[Kuwabara]

Let's hope so my flightless friend x

 

[beth]

lol!

Surgery is okay. It usually hurts afterwards but everyone has always made sure I'm comfortable and it's usually better than it was before the surgery pretty soon afterwards. TBH, I find a colonoscopy worse than the op's on my bum. Think mine charges 1 - 200 pounds for a short fistula chasing op. Not such a bad way to earn a living I suppose!