Kids & Crohn's followup
Thanks for all of the really great comments to my last post. They've both helped reassure me, correct my percentage stats, make me look for further research online, and generally not come to a decision but to be more informed about making that decision later ;) Mostly it's helped me reassess where my feelings were coming from, and why. I knew I had a skewed perspective and that was key, but from the responses I think there's more to it:
Personal experience with Crohn's
Personal experience with doctors and how you feel about them
How much, if any Crohn's (or autoimmune) is already in the family
How severe their/your Crohn's is
How much that has affected you/them as a result
How you see Crohn's as a disease compared to other illnesses
Whether you view your kid as un/likely to get sick, and if so, how sick
Taking that into account determines how you feel about having kids. (along with some other factors, current health, likely future health, financial situation, guilt levels!)
The 10ish% chance of passing it on seems to be backed up everywhere. It varies but I've been told 7, 9 and 10%, rising if both adults have Crohn's, or more if both parents have an autoimmune. The scary new thing I read was that the chances of developing another autoimmune disease is also higher, something far more serious. That makes perfect sense but I'd not thought about that before. But still, 10% is much less chance than I thought.
If I'd had minor Crohn's, diagnosed in a year, manage it with diet and it wasn't overly restrictive I would feel differently about it. I'm probably a lot more mentally scarred by this than I realised, and I guess the guilt is wrapped up with other issues.
Loads of people have their shitty diagnosis story, me included. My mum said all the wrong things at our first consultation; she was a nurse and she thought it was Crohn's because it's the same symptoms as x and y and z in her family have, so it became a doctor Vs nurse competition with me as collateral damage. He almost played a game with us to prove his theory - that Crohn's was not genetic - and I nearly died as a result a few times. The Crohn's tests happened once, and then never again. At the end of the 'treatment' he got an entire lecture hall of student doctors to back him up, because I wanted to sue him for negligence.. he said I was making it all up, and he was turning my family against me as a result… it became either anorexia or some form of desperate cry for attention. Meanwhile I was 5.5 stone ball of screaming fury; 'how dare that doctor call me a liar when he's incompetent and how dare you believe him over me', so it's easy to see why my parents sided with the doc, as I was being the teen from hell. This was in a Welsh county where they'd never had a Crohn's case before - or at least ever successfully diagnosed one. So the good point that we now as parents know what to look for and can spot potential problems early - well, hopefully yes, if you get a decent doctor. If not, it means little. You can become what doctors perceive as the paranoid busybody parent. In the UK you've the 'postcode lottery' of how well you'll be treated, doctors aren't rated like they are in America, we don't choose them or know much about them - you're assigned one and you cross your fingers. Then, when you have a GI you'll see them a couple of times, then you'll see their underlings - the student doctors. It becomes pure luck. My mum's guilt stems not just from genetically passing it on to me, but from the fact she suspected Crohn's but eventually believed our doctor knew better after hitting a diagnosis brick wall so many times, and they forced me to eat with rather messy and rebellious results which then ruined our relationship for a few years. Looking back as an adult it could have tore our family apart very easily, and I've been subconsciously worrying about that.
While this was going on my mum's crohnie cousin died from an operation which could never heal, and my crohnie cousin jumped off a bridge because she couldn't take it any more - so my view on what a kid has to go to is based on all of this. It's possible to happen to my kid, but much less likely.
That colours my perception on whether it's better to be alive with Crohn's, or not born at all. Now I'm up for living thanks, but the first 9 years of having Crohn's I didn't have that healthy outlook on life, and probably the only reason why I'd not gone the way of the cousin was because I knew how it would affect my mum, and my anger at my doctors and determination to prove everyone I wasn't lying. It's difficult to see the woods from the trees when you're in the middle of it, and to compare to other more life challenging problems.
Then there's my current health; I am shattered and can't handle the current commute, let alone on much less sleep. I also can't confirm how well I will be later on in life, and whether I'll be a fit parent, health wise.
So in the end I don't think there's a right or wrong choice, it comes down to personal experience, current circumstances, health, expectations for your kid, family history, and perceptions on how bad Crohn's is as a factor to whether or not something should be born.
Me, until I settle down in a location I know I'll be staying in for a good long time, have a great doctor and get some energy back, I'll be leaving it. The 10% chance of passing it on makes me much less concerned, it's much less of a risk, but still a risk. My wife has a stomach ulcer and digestive issues, but nothing too serious or diagnosed - but something's going on, like IBS. She also has an anxiety disorder, and high blood pressure and diabetes run in her family. Probably not a good genetic mix. I don't think personally that I could relax having a kid, it would stress me out and probably make me ill, even if the kid didn't get sick ;) But also, I think that currently I'd be far happier with adoption if it comes to it. Get them when they're 4 and have worked out how to sleep and have a conversation ;) They may come with an illness far worse than Crohn's, life is just a gamble… I think you place your bets based on the knowledge you have, and take the rest as it comes. If the kid does get sick then at least there's no guilt and less chance of a ruined relationship as a result, and it looks like that's the crux of where my concerns about it stem from.
So I don't see having kids as selfish any more, thanks for getting me around my headfuck on that. Everyone's got different Crohn's experiences, everyone's opinion varies, and is valid for everyone's different circumstances :)
Personal experience with Crohn's
Personal experience with doctors and how you feel about them
How much, if any Crohn's (or autoimmune) is already in the family
How severe their/your Crohn's is
How much that has affected you/them as a result
How you see Crohn's as a disease compared to other illnesses
Whether you view your kid as un/likely to get sick, and if so, how sick
Taking that into account determines how you feel about having kids. (along with some other factors, current health, likely future health, financial situation, guilt levels!)
The 10ish% chance of passing it on seems to be backed up everywhere. It varies but I've been told 7, 9 and 10%, rising if both adults have Crohn's, or more if both parents have an autoimmune. The scary new thing I read was that the chances of developing another autoimmune disease is also higher, something far more serious. That makes perfect sense but I'd not thought about that before. But still, 10% is much less chance than I thought.
If I'd had minor Crohn's, diagnosed in a year, manage it with diet and it wasn't overly restrictive I would feel differently about it. I'm probably a lot more mentally scarred by this than I realised, and I guess the guilt is wrapped up with other issues.
Loads of people have their shitty diagnosis story, me included. My mum said all the wrong things at our first consultation; she was a nurse and she thought it was Crohn's because it's the same symptoms as x and y and z in her family have, so it became a doctor Vs nurse competition with me as collateral damage. He almost played a game with us to prove his theory - that Crohn's was not genetic - and I nearly died as a result a few times. The Crohn's tests happened once, and then never again. At the end of the 'treatment' he got an entire lecture hall of student doctors to back him up, because I wanted to sue him for negligence.. he said I was making it all up, and he was turning my family against me as a result… it became either anorexia or some form of desperate cry for attention. Meanwhile I was 5.5 stone ball of screaming fury; 'how dare that doctor call me a liar when he's incompetent and how dare you believe him over me', so it's easy to see why my parents sided with the doc, as I was being the teen from hell. This was in a Welsh county where they'd never had a Crohn's case before - or at least ever successfully diagnosed one. So the good point that we now as parents know what to look for and can spot potential problems early - well, hopefully yes, if you get a decent doctor. If not, it means little. You can become what doctors perceive as the paranoid busybody parent. In the UK you've the 'postcode lottery' of how well you'll be treated, doctors aren't rated like they are in America, we don't choose them or know much about them - you're assigned one and you cross your fingers. Then, when you have a GI you'll see them a couple of times, then you'll see their underlings - the student doctors. It becomes pure luck. My mum's guilt stems not just from genetically passing it on to me, but from the fact she suspected Crohn's but eventually believed our doctor knew better after hitting a diagnosis brick wall so many times, and they forced me to eat with rather messy and rebellious results which then ruined our relationship for a few years. Looking back as an adult it could have tore our family apart very easily, and I've been subconsciously worrying about that.
While this was going on my mum's crohnie cousin died from an operation which could never heal, and my crohnie cousin jumped off a bridge because she couldn't take it any more - so my view on what a kid has to go to is based on all of this. It's possible to happen to my kid, but much less likely.
That colours my perception on whether it's better to be alive with Crohn's, or not born at all. Now I'm up for living thanks, but the first 9 years of having Crohn's I didn't have that healthy outlook on life, and probably the only reason why I'd not gone the way of the cousin was because I knew how it would affect my mum, and my anger at my doctors and determination to prove everyone I wasn't lying. It's difficult to see the woods from the trees when you're in the middle of it, and to compare to other more life challenging problems.
Then there's my current health; I am shattered and can't handle the current commute, let alone on much less sleep. I also can't confirm how well I will be later on in life, and whether I'll be a fit parent, health wise.
So in the end I don't think there's a right or wrong choice, it comes down to personal experience, current circumstances, health, expectations for your kid, family history, and perceptions on how bad Crohn's is as a factor to whether or not something should be born.
Me, until I settle down in a location I know I'll be staying in for a good long time, have a great doctor and get some energy back, I'll be leaving it. The 10% chance of passing it on makes me much less concerned, it's much less of a risk, but still a risk. My wife has a stomach ulcer and digestive issues, but nothing too serious or diagnosed - but something's going on, like IBS. She also has an anxiety disorder, and high blood pressure and diabetes run in her family. Probably not a good genetic mix. I don't think personally that I could relax having a kid, it would stress me out and probably make me ill, even if the kid didn't get sick ;) But also, I think that currently I'd be far happier with adoption if it comes to it. Get them when they're 4 and have worked out how to sleep and have a conversation ;) They may come with an illness far worse than Crohn's, life is just a gamble… I think you place your bets based on the knowledge you have, and take the rest as it comes. If the kid does get sick then at least there's no guilt and less chance of a ruined relationship as a result, and it looks like that's the crux of where my concerns about it stem from.
So I don't see having kids as selfish any more, thanks for getting me around my headfuck on that. Everyone's got different Crohn's experiences, everyone's opinion varies, and is valid for everyone's different circumstances :)