Please feel free to share your thoughts and feelings about new autobiography.
It is good to hear even though you have been through so much you still have a positive outlook on life.
Thank you for sharing your story.
"TODAY IS YOUR DAY ,AS IS EVERYDAY LOVE!"
IT'S A JOY TO KNOW YOU,LOVE SHERRYL (Perth)
I found I could identify with a lot of the struggles that you have gone through, as I have also had similar experiences with my journey with Crohns. I was also diagnosed with Crohns disease at the age of 17 in NZ,and have had my ups and downs with Crohns for the past 38 years. I have had a temporary Ileostomy in 1979 and this operation was reversed a year later. With the Crohn's disease still active I needed to have had a permanent Ileostomy in 1983. I had complications associated with this operation which was very similar to your temporary Ileostomy operation. After the operation I could not hold down any solid foods and my surgeon thought my intestines were blocked and twisted so he scheduled a further operation to unblock the intestines.
Since this operation I have needed two further operations to remove diseased bowel, the last operation in 2005 required my stoma to be re-sited onto the left side of my abdomen. This was due to disease around the stoma rather than retraction of the stoma. Your problems with the retraction of your stoma must be really horrible. One of the problems I fear most is a leaking bag especially when you are in a public place and can do very little about it.
I also caught a bad infection from drip feeding as well. Prior to one of my operations I was on TPN (Total Parental Nutrition) feeding to boost my weight and I caught an infection through the CV line. I remember feeling really horrible from this infection and luckily there was no permanent damage from the infection. I feel that my health is in reasonable state at present although I get dehydrated quite easily due to the short intestine track which I have left.(only 150cm of my small bowel left). My diet has to be supplemented with high calorie drinks and vitamins to ensure my nourishment is adequate.
Once again thank you for sharing your story with us in your book and I wish you good health for the future.
Firstly, let me say, I admire your strength and applaud you for putting your journey on paper. Ironically I have been told that I have handled my Crohn's and operations which resulted in a stoma, with a positive attitude and good sense of humour, but lately have felt myself slipping as a result of denial and depression. Reading your story could not have come at a better stage in my life.
I firstly cannot believe the similarities in our lives! I know it sounds a little corny, but reading your story alot of the time was like reading about myself. So many similarities, not in our Crohn's but in our lives. I am also 37, grew up constantly being called the "baby" similar scenario, as in thought to be the spoilt one but also the rebel and a little lost. Also the constant transiant person never settling in one place for very long...I had a pet goat named gypsie who also had a love for clothes on the line and 23 pet kangaroo's one of which was twinkles who was blind and I used to carry around in a pillow case which she thought was her mother's pouch. Anyhow, I won't go on but our similarities are quite amazing and were constant throughout your personal journey, not so much your health journey... One of my "Angels on my Shoulder's is my big sis who lives on the Gold Coast (I live in Brisvegas) and she is very spiritual and gave me my gratitude stone.
Everything that happened to me happened very quickly, from diagnosis, to operation, to ICU and fighting for life due to poisoning of my system due to leakage. I was told that I could have a reversal in 12 months, it will be 2 years at the end of January 2008 and I have decided against even contemplating this option.
My marriage broke up due to my husband not being able to deal with my condition and was very painful due to infidelity and made me doubt my own self esteem even more, I am now trying to feel my way through "single life" and having a lot of trouble with how to even bring up the subject of "oh by the way, there is something I should tell you".
Your book has given me strength at a time when I really needed it. I was in advertising for 12 years and one of my clients was the Leukaemia Foundation of Australia. I consider that experience a blessing as even before the Crohn's and during my own hard times I have always had the outlook that there is always someone worse off than yourself and been grateful for what I have. Something I have been starting to learn recently however, is that its okay to be sad, and let myself cry and feel bloody sorry for myself for a moment before I pick myself up again and move on as you can't be strong and pretend all the time. We all realise I think that there are worse off people out there but should never deny our own pain because its "ours" and that is what makes it worse... does that make sense????
I think my saving grace has been my Mum (My angel) and my Son who has kept me going on the days when I wanted to give up. But also my sense of humour... I named my stoma BARNEY, I was going to call him "Showbag" as everyone knows that they are always full of shit. But Barney and I have started to accept each other. Sometimes I'll say to him when he makes noise "Oh shut up Barney, why are you being an arsehole?" then I realise, well to be honest... he is trying to be! Or do stupid things like send invitations to my friends for Barney's 2nd Birthday 30/01/08 and make note that lolly BAGS will not be given out as it may offend Barney... Yes, I do have a weird sense of humour. Even when I went to hospital I told my friends that they could see my operation on line at www/:trace or in words www slash colon trace.
Anyway, now that I have used up most of your testimionial space, I once again wanted to say a huge THANK YOU! I recently lost the only friend that I had who I could talk to about Barney as she had her bowel removed from Cancer and as much as I have wonderful friends I have been feeling a little lost without her. Your book has helped to give me back some of the positive perspective I was looking for and to snap me out of the somewhat depressing state I have been in.
I have never received any counselling and think it would really help me at the moment as feel myself slipping a little as I am only now starting to accept this after two years of denial. If you could offer any advice I would be very grateful as to where to go and what to do. I'd even be grateful to talk to anyone who can tell me how the hell to deal with those wonderful noises Barney makes in public without feeling like a complete freak!
So anyway, thank you Nicky for sharing your journey. I admire your strength and thank you for the strength that reading your book has given me.
Tracey & Barney. 0418 881 215
You are one of the most fantastic people I have ever met! After what you have gone through, the spirit you have is amazing! I wish I can stay as positive as you when things happen to me. You are kind, and very passionate. I look forward to spending time with you.
Forward Forward!!
