Crohn's old timer, hidradenitis suppurativa newbie...

[maloo]

crohn's old timer, hidradenitis suppurativa newbie...

mornin' all..

am not too sure how to get started, i seem to be the queen of waffle sometimes so will try not to go on and on.. !!

my crohn's turned up when i was ten, i'm thirty nine now.. early childhood years were awful, steroids and bullying, endless hospital admissions.. a once happy, outgoing child became an angry rebellious teenager.. as a 'grown-up' i can see what happened to me, i was a very unhappy, misunderstood child but in those days no-one explained crucially to me what was changing my life.. at eighteen i had major surgery, at twenty-one i had major hemorrhaging..

then the first of two great turning points in my crohn's life happened.. i made a decision that would begin my journey into a sort of self-recovery, a decision that my crohn's would have to live with me rather than me with it.. the second turning point came a little later when i was prescribed vitamin B12 injections, i still consider these to be my life saver..

life carried on and by thirty i had the greatest gift of all, my beautiful son..

at almost forty i'm a single mum, part-time employee and an enjoyer of life.. i have a vast knowledge of local toilets and have learned to question medics without getting cross.. i try not to get too down but equally so appreciate that crying my eyes out is sometimes the best medicine..

for anyone new to crohn's i would suggest meet others.. as a child i had no hope, i didn't understand so couldn't see a way forward.. as an adult i have met a few people now, just friends of friends, who have been so ill and frightened and all have said that seeing someone who is 'managing' has given them hope that one day things can be okay..

now i have been diagnosed with hidradenitis suppurativa.. yet another embarrassing illness hurdle to overcome and get my head around.. good ol' crohn's strikes again..

today i have the downers so waffling on here is perhaps cathartic, tomorrow i will pick myself up and start a new day..

for now though a cup of tea, a deep breathe and a monstrous pile of washing up to deal with because i was too knackered yesterday..

regards

maloo x

 

[Dexky]

Welcome Maloo!! Good for you! It is cathartic for me to read stories such as yours. Something I can point to in the future with my son and say see there is plenty to be thankful for Good luck, hope to see you around!

 

[maloo]

cheers dexky.. and you are right, there is plenty to be thankful for and in a bizarre way my crohn's has taught me this.. of course i don't always feel positive, sometimes i can sit for what seems like hours blankly staring at nothing though i never go down the 'why me' route.. i was just reading a different thread and someone had written about how being ill becomes a normality, a feeling i can relate to.. it' wonderful to stumble upon this forum, real people sharing real stories.. this would have been heaven years ago.. take care and thanks again..

 

[xJillx]

Hi Maloo! I really feel for those who were diagnosed with Crohn's as a child. It is a very difficult disease to understand and manage, and I know it must be very hard on a child. However, it seems that you certainly made a positive out of all the struggles you faced when you were young. You seem to now have a great attitude. Thanks for sharing your story and your important messages.

 

[maloo]

thankyou jill.. i guess any childhood illness is awful isn't it, the thing with crohn's is that it's bums and bowels and at times so degrading.. i hope that children now are more involved and talked with and listened to, that was, looking back, the greatest mistake with me.. as a child i really had no understanding of what was going on.. i remember a student doctor sitting on my hospital bed when i was fourteen and explaining as best he could, it was the first time someone had tried, even now i can still see his face, an imprinted memory..

i try not to look back too much, i call those times before i found my voice 'the specimen years', the medicines, the invasive procedures both by machine and hand all forgetting that i was a small child.. i didn't even realise i had the typical steroid moon-face until i was bullied at school.. as a now parent i can see my mum and dad must have been terrified, there's far more knowledge these days thank goodness..

as a child you miss out on school and friends so to slot back in during healthier times becomes difficult because the world continues to spin.. in hospital you see so much illness around you, even death, that you become older before your time and your take on the world around you is so different to that of your peers.. again a misfit..

my son's new school has pastoral care available to all students, i am overjoyed.. a positive move for children, no matter what their trouble or situation..

it's been hard sometimes to not get bitter but ultimately you would only hurt yourself, life is so short and each day so important.. as a mum i have so many things to teach and show my son and none i would manage if i was continually angry..

i hope that things have changed for the better when you are young and being diagnosed.. my son in younger years had ear trouble which required surgery and all of the medical folk were supportive to both myself but more importantly him which gives me hope..

thanks again..

 

[DustyKat]

Hi maloo and :welcome:

I'm glad you have found your way. This is a great place for support and info but you will also be a wonderful asset to the forum.

Both of my children have CD and my experience with them being diagnosed and multiple hospitalisations has been positive. Perhaps many doctors now days see beyond the condition and acknowledge the patient that is in front of them. My son has recently had surgery and his surgeon would do rounds and then often come back later in the day alone and sit and talk with Matt. It certainly makes a world of difference to a young man's perception of his disease, his level of confidence and his ability to cope.

My children's school has been on board and has been exceptionally supportive and accommodating to their needs but I have also laid it on the line to them so they at least have some understanding of the daily struggles they face. But as you say, education has changed for the positive in many ways to those days of past.

You have a wonderful earthy attitude that has no doubt developed because of your past and current experiences. Your son is blessed indeed to find himself with such a amazing role model and, if need be, you will also be a wonderful advocate for him.

Are things under control with your CD and Hidradenitis Suppurativa?

I hope you stick around 'cause we would love to have you here. Good luck and welcome aboard!

Take care, :hug:
Dusty. xxx

 

[maloo]

hi there dusty and thankyou.. what a wonderful message of hope to read.. however, i'm so sad to hear that both your boys have crohn's.. i'm sure yours and their experiences will be a great help to others and of course i wish you all the very best..

the HS is a brand new diagnosis, i went to the hospital on monday of this week because of what was thought to be a boil that wouldn't go despite weeks of antibiotics, turned out it was HS which was initially heart breaking but i'm getting my head around it.. surgery in two weeks so fingers crossed..

my crohn's is manageable.. the doctors would prefer me on medication and frequently try to persuade me but currently i choose not to take anything, just vitamin B12 (my god send) and iron injections.. as much as my crohn's lives with me i do respect it so i try to look after myself..

my job is stressful but i love it and being a single mum sometimes tough but i am happy and this in itself is better medicine than any steroid..

am so glad to have found this forum, it's lovely to be able to share times good and bad with folks who have such an immediate understanding..

thankyou for the warm welcome

maloo xx

 

[tiloah]

mornin' all..
i made a decision that would begin my journey into a sort of self-recovery, a decision that my crohn's would have to live with me rather than me with it..

I love this! I may have to adopt that philosophy. Welcome to the forum.

 

[maloo]

thankyou diesanduhr.. i don't mean to sound like i'm preaching but truly, it's this way of thinking that has helped so much..

i remember so often being told "you can't do this, you can't eat that" and as a child was not included in school trips so now i go for it and accept the consequences..

there are things that i know if eat will give me 'the runs' but i'd rather enjoy a good meal with lovely friends than not..

i live in england and many years back went mountain climbing in the lake district.. how i would have loved to have had a mobile phone back then so that i could have phoned my consultant and said "i'm on the top of scafell pike..!!"

of course there are times when such adventures are not so possible so i choose to rest-up rather than allow my crohn's to stop me..

thanks for your warm welcome..