A whole new world!

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where to start?  well I’ll start at the beginning!  After years of suffering from a very horrrible disease, and having to try lots of drugs and take loads of steroids, feeling awful, getting fat steroid face, feeling embarrased and nervous about going out, I was told the only option was surgery!  remove my colon, and poop from my stomach!  I RESEARCHED IT!  Made loads of friends online, and was told it was good to get your life back.  although evertyone was positive about how there stomas changed there lives I still felt nervous.  It was great having people online, some are amazing!  amy and kate form let’s talk about crohns page and jessica’s uncover ostomy page – both on facebook.  also  IA forum was a great support.  The only thing lacking was actual face to face contact!  I met an old man called charlie who was very nice nad helped go through a lot of stuff but he was an old man!  fashion, sex, life outdoors, those sort of questions he could not answer, I didn’t even bring them up!  I’m now 7 weeks post op! And life is great!  At the weekend i was camping, canoeing and hiking!  on the sex, well thats better than before!! ( i was so ill before and always in pain so sex drive was 0!!!)  do I want the j-pouch surgery?  well i’m not even going to go there!! At the moment I’m not even thinking about it cause I’d end up making a hasty decision – at the moment the feeling is NO!!!  I’ll give myself a year then look into the possibilty.  You may think I’m crazy but i love squirt (my stoma) yes at times I WISH he wasn’t there, but he gave me my life back!  As for fashion, i have my moments and get paranoid – squirt sticks out and is very pointy!!  I’ve found some great clothes that make me look good and disquise squirt!  I watched nadia’s videos on UCVLOG on youtube and got some great tips, it’s a bit ‘american’  the bags she uses are HUGE!  maybe to prove any bag will work?  i thought I’d start doing an english fashion video  (i’m after pics if you have any???)  I also got thinking about how I never met anyone apart from charlie before my surgery, and how helpful it would have been, also  wouldn’t it be good to meet other stoma girls in my area nd hold socials!  The IA have a meeting twice a year which is quite formal, I wanted days out, nights out, shopping trips, bbq’s, funthings and to make new friends, in person.  SO  i decided to start north east stoma girls!  I set up a page on facebook, it’s starting slowly!  have approached IA and ostomy lifestyle for help and support, and am going to mention it to my stoma nurse when I next see her.  i’m hoping it’ll take off!!!  although I’ll be blogging about me on this page i’ll also be logging news and events etc from the group once it gets off its feet!  So – if you are a girl/woman, live in the north east of england and have had are going to have or are just considering surgery then come and join us!    If you don’t fit any of these you can still follow my blog!

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4 responses »

  1. You met me hunni! AND I was enjoying a night on the tiles with no problems! I know we didn’t get much time to talk but you saw how much my Eric didn’t hinder me!! teehee x x x

    • YES IT WAS GOOD THAT NIGHT BUT FAR TO SHORT! I didn’t find out about eric till long after that night! I kept trying to think back to that night out, what you were wearing etc. I had no idea! it helped as i’d not met anyone before except charlie ho wore baggy trousers and braces and it looked obvious! Just wished you had lived closer or we could have had more time to chat. ONLINE IS GOOD, but it doesn’t beat one to one contact. xxxxxxxxxxxxxxxx

  2. Hi Donna, Was sending rather a long e-mail to you and my computer went a bit moody and I lost the whole thing. I’ll make this shorter, I am 64 but don’t think I am. I am from the west coast of Scotland but have a caravan in Hawick. I always wanted to go to Newcastle metro so I just wondered which part of the north-east you are from and if it is reachable from Hawick. I had my op 30 years ago so I can sympathise with you at such a young age. My husband died 3 years past come this August (always thought I would go first, but he was diagnosed with oral cancer in 2006 and died in 2008). I didn’t think I would go back to the caravan but the people in Hawick are so friendly and quite a few of the owners come from Newcastle, Blyth etc. I fell 14 weeks ago and broke my fib and tib under my knee so I was in hosp for 2 weeks and just wednesday there I got my full leg cast off. Waiting for physio for excercises cos I can,t bend my knee cos it was kept straight so long with the cast. Apart from visits to the fracture clinic via ambulance transport I was housebound nd still am. As soon as I get the ok to drive I’ll be down to the Borders in a twinkle, before the snow starts I hope. (steroids for 12 years blew up like a balloon, i went from 8st8lbs to 5st9lbs. Three weeks of 60mg steroids and I was like the teletubbies and a size 16 then 18) I cannot believe that no cure has been found for Crohns Disease which is what I have, it never goes away. One of my docttors said he calls it “The Devil Disease” cos you never know when it is going to rear it’s angry head. Hope to hear from you Cheers Ann

    • My mum has just had her knee replaced so know what your going through! She’s just recently lost her husband to lung cancer (mesothelioma) I don’t know hawick, apart from that it is on the borders. I know what you mean with the steroids! Luckily i’m now losing the weight! i’m doing ok with squirt, it can be hard sometimes but then i remember how much of my life he’s given back. i live in north tyneside, right near the coast. Hopefully when your knee gets better you might venture down this way and we can meet up! keep in touch xxx

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