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a tribute to alison

SQUIRT'S BLOG

When I woke up this morning i went through all my emails and facebook notifications like I do every morning, though today was not like any other! as i read my messages I came across a blog posting from jess from uncover ostomy. Jess helped me a lot to accept my stoma, and also inspired me to raise awareness and break the stigma. I made many friends through her page, as i read through the blog it hit me that alison had died! It is strange howsomeone you have never actually met in person can touch you, like many, this morning i was in tears, and in shock! this is a link to jess’s blog post

http://www.facebook.com/l.php?u=http%3A%2F%2Funcoverostomy.org%2F2012%2F07%2F27%2Fa-future-shattered%2F&h=wAQF1SBlj

I first ‘met’ Alison through uncover ostomy, I was keen to make a fashion video, Alison was very keen to be a part of it! Alison followed in Jess’s footsteps making an ostomy…

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Zipwire, moving house, and a right pain in the bum!

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I have noticed i have not updated this blog on my adventures of zipwiring off thye tyne bridge.  If you want to read about it in detail, take a look at the blog, adventures of a stoma doll, or my stomawise blog which can be found on the stomawise website.  What I will say, is that in total I have raised over £1000!! with just under £500 going to the mick knighton mesothelioma research fund, and the rest going to crohns and colitis UK, stomawise, and ostomy lifestyle.  I still have money to come in!  what I really enjoyed was the photoshoot, to make me the face of oakmed.  I have seen a preview of one of the adverts and I think it is really good!  As soon as I get a copy that I can show you, I will!

I have just moved house, which has meant a lot of decorating and a lot of heavy lifting!  all i can say is i’m thankful for the support from my comfizz level 3 support belt!  A problem with moving, is that at times I was so busy I forgot about my stoma, and forgot to empty it. ‘Normal’ people when they need to go, get a signal sent to there brain, when you have a stoma, if you don’t remember, you only get reminded when your bag gets full and it feels like your carrying a water bomb attatched to your stomach!  I think over a year on from surgery, having a stoma is just a part of me, I easily forget, as i’m having such a good time enjoying life, not that moving house is fun but the end result definately is!  Oh, and an important piece of information about my new house, it has 2 toilets!!!!!! and both are suitable for bag changes! no more ‘going to the toilet’ in my bedroom!!

With moving house, i have also had to change doctors.  Not a good task when you rely so much on pescriptions and supplies!  I went in to the new gp’s yesterday for my booking in appointment with the nurse.  It was an interesting appointment which made me wonder what information nurses are getting on ostomy’s and IBD.  the nurse was really nice and friendly, but had no idea what an ileostomy was, she kept saying don’t you mean a colostomy bag, when I said i had no colon and had an end ileostomy she said does that mean you also have a colostomy?  I explained all about the differences, she then asked what a rectal stump was, when i explained, she asked why did they leave it in?  to which i explained why but said personally I want it out, but i’ll come to that in a minute!  She automatically assumed it was because of cancer, so i said UC, to which she looked puzzled, so I said it is an IBD like crohns but only affecting the colon.  basically the colon bleeds, gets ulcerated and basically dies, and explained the symptoms, to whch she said i see why the bag is a better option!  When she asked about physical activities, i think she assumed i could do none, so I corrected her on all the things I have done since surgery, she looked shocked and asked whether i should be doing them!  I hope my long appointment ith her has helped to educate someone!  When i’m in a surgery I browse the medical leaflets, and as with nearly all gp’s and chemistys, there are never any information on ostomies or IBD, I once sent a load of crohns and colitis UK leaflets to all my local gp’s and chemists, none put them up! My old gp refused saying there were more important conditions to publicise!  Here i go again on the subject of awareness, but  I WILL not give up till we are understood, as well as conditions like diabetes and artheritis and asthma!  i had an interview for a voluntary position on the information board for Crohns and colitis UK, i will let you know if i got on!  i have now taken over the local branch website, leaflets and information distribution so that is a start!

On to the pain in the bum!!!  my rectum is still bleeding heavily, it is still a nuisence and painful!  I had my camera test which was fun trying to confuse the nurses!  The results showed my rectum was really bad but my surgeon still wanted to wait till he sees me in january!!!!!  I rang the hospital today and have brought my appointment with him forward to september which I hope will mean this pain in the bum will be gone sooner!  A UK newspaper had the headline,

Unemployed to have arses removed!

I know it is referring to benefits but when I read it, I giggled, then I thought, I’m kind of unemployed, could i go to the hospital and tell my surgeon the government are insisting on my arse removal??

On the work front, i did a days work this week, didn’t go to plan, the weather spoilt it!  But when i do work, part of me thinks, had i not been so ill, I may have a proper job right now rather than working as a trainer with a certain number of allocated sessions per year.  but then I wouldn’t be the person I am now, and i wouldn’t be devoting my life to raising awareness and helping people (and being a wife and mum)  So i will continue on, working when work arises, and doing my bit, trying to make a difference.

So i’ll end todays post, with an off topic request.  this week is national transplant week here in the UK.  I know close hand how important organ donation is!  my son has a heart problem, and although his is under control, I have come into contact with some amazing children and amazing parents.  my heart breaks watching a child wait for the possibiltiy of an organ to save there life, and in some cases, watching them die because no organ was available.  I feel the same for adults, but there is something about seeing a child waiting, which pulls at the heart strings!  So if you would be willing to recieve an organ if needed, then be willing to give!!!!  Still register even if you have had medical problems, they could use something!  Oh, and have the conversation with your family because in grieve they can overide your decision!

I will not end on such a somber note but please think about it!

so to end this post, here is a quote from a fellow ostomate.

‘The most beautiful people I have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding for life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people……..Do not just happen.’ ~jimmy~

 

hi everyone!

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sorry i’ve been missing for so long!!!!

I attended the ostomy lifestyle training for running a support group, it was very interesting and informative!  I have opened the group up to guys as well!!!

a lot has been going on, two of our girls have had surgery to make there stomas permanent, another is having further surgery tomorrow!  My love goes out to all who have had or are having surgery!!  I’ve started going to the colostomy association support group in byker on a friday, they are a really nice group, ok guys your probably asking why?  well yes I have an ileostomy notr a colostomy but where I live the ileostomy association is no good, and in general i’ve not been too impressed with them!  The CA however are wonderful, and they don’t min d be being around, and like me think an ostomy is an ostomy!  I think they like the fresh young blood LOL!!!!

Since my last post i have yet again been out there!!!  I again went camping, done some stepping stone hopping resulting in falling on my bottom and getting wet, swimming, climbing, abseilling and toboggoning. I’m determined to get it out there that you can still do anything with an ostomy!  I plan on zip wiring off the tyne bridge next year, and am hoping to be apart of the clipper round the world yacht race in 2013, though money is a big issue!!! will need lots of sponsorship!!  I need some more challenges!  send your suggestions!!

I’m hoping top get some social events happening, i’m still working on a VIP fashion event, and want to have a meal out either before or after christmas.  i can’t run a social group alone, if we are to jump out of cyberspace  I need willing helpers.  i also need a way to reach people not online, and to help pair up people near to each other.

hope everyone is doing ok.  Speak soon xxxxx

 

donna

summer is nearly over!

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It’s been and up and down sort of summer but it’s been a healthy one!  We haven’t really done anything, not gone away, or done anything exciting, but I was able to enjoy my kids and my husband.  i’m still new to being a stoma girl, still got lots of challenges but because I have my wonderful husband to support me I can do anything!  In two days I’ll be working a full day, and soon i’ll be starting a job as a school pastor 1 day a week.  Whenever I get down, I thank squirt for giving me my life back. My fellow stoma girls aren’t having the best of times, making decisions about surgery, waiting for surgery, trying to get somewhere with doctors over surgery, and some struggling with life and their stoma.  I will always be here for you guys!  My stoma may be young, and some have a lot more experience  but i have a big heart and you can sound of me or ask me to pray.  We all need each other, and through having squirt I’ve met some amazing stoma girls around the world.  Some a lot younger than me but wise beyond there years!  i love you all guys!