A post for family and friends of people with IBD and/or ostomy

December 19, 2012

The past few weeks I’ve come to realise how lucky I am. I have a wonderful husband, and very supportive family and friends. I have been hearing stories from fellow IBD’ers and ostomates who have unsupportive family and friends. some stories have brought me to tears! so as it is nearly christmas I am writing this blog and have made a video blog for people to share with there family and friends. i hope that having people watchng my story and reading the poem and the song will help them understand, and maybe set a new years resolution to be more supprtive.

My video blog.

A poem by a friend.

You don’t really know me.

You don’t really know what it’s been like to live in my body, with my disease.

You don’t know what it’s like to be afraid to fly, because you might have to suddenly go to the bathroom while the plane is taking off or landing.

You don’t know what it’s like to not be able to take your children trick or treating, or skating, or horseback riding, or for a walk in the park, or on a field trip with their school, or for a bike ride, or to go swimming out in public, because you have to stay within about 1 minute of a bathroom.

You don’t know what it’s like to be afraid to eat – every single meal – because you know you’ll pay for it afterward in terribly painful symptoms.

You don’t know what it’s like to be on a drastically restricted diet for years, trying to figure out what you can and can’t eat to avoid being more ill, let alone to get well.

You don’t know what it’s like to never feel comfortable going to parties, because of the guest/bathroom ratio.

You don’t know what it’s like to never be able to drive your children and their friends anywhere together, for fear of having a bathroom accident in the car on the way.

You don’t know what it’s like to have a bathroom accident in the car in front of your children/ grandchildren, especially the teenagers.

You don’t know what it’s like to miss theater performances, or movies, or dinner with friends, or a plane, or your children’s sports game, or their play that they’re starring in, because of being stuck in the bathroom.

You don’t know what it’s like to always have to sit in the very back of the live theater, or in the very front of the movie theater, or on the very far side by the door, so you can make a run for it if needed.

You don’t know what it’s like to never be able to go to the mall because the bathrooms are too few and far between.

You don’t know what it’s like to be unable to enjoy a physically intimate relationship with your partner for months or years, because of severe pain near that area.

You don’t know what it’s like to have to always check and see where the bathroom is first thing, when you’re in a new place.

You don’t know what it’s like to have to make the choice between leaving your very young children/grandchildren in the back of the store while you run for the bathroom at the front, or being slowed down by bringing them with you and trying to make it in time – and risk failing.

You don’t know what it’s like to have to always shop at inconvenient times because you can’t risk getting stuck in a long line at check-out.

You don’t know what it’s like to be chronically anemic because of constant blood loss from your disease.

You don’t know what it’s like to not have enough energy for day to day life, let alone be able to exercise and be in half-decent shape.

You don’t know what it’s like to spend hours of your days and nights in the bathroom.

You don’t know what it’s like to have to clean explosive, bloody diarrhea from the grout in the bathroom floor in the middle of the night, when you’re in such severe pain that you can hardly function, but it can’t wait till morning.

You don’t know what it’s like to spend months on drugs like prednisone, which makes you fat and people look at you and judge you because they think you just “have no willpower”, or it makes you irritable and people think you’re just a jerk.

You don’t know what it’s like trying medication after medication, month after month, year after year, and nothing works.

You don’t know what it’s like to have caring, concerned people like you telling me that after years of living like this, I shouldn’t “give up so fast” and make the drastic choice to shit in a bag for the rest of my life, thinking that you’re in a position to judge that my life will actually be worse off with that choice than it is now.

Another video! - No apologies!

I thought I’d also share this song. When I hear it I think of my husband, because I could imagine him saying this. As i said on the video blog I could never have gotten through the last 5 yrs without him. He is my strength!

For better, for worse. In sickness and in health!

What are words - Chris medina

Please be supportive to your loved ones!

Donna x

An update

November 1, 2012

It’s ben a few weeks since I posted on here. So I thought I’d post a little update. I’ve had my pre-assessment for my rectum removal. i will be having my rectum removed in 2 weeks!!! It has been tough. It has been a lot easier having a flaring rectum than having a flaring colon! i guess my life is not at risk with a diseased rectum, not like it was with a failing colon, but what makes it hard is how great I felt for so many months, it kind of sucks to have something pull you down! but as usual I’ll keep fighting! The hard bit is when you tell someone your having surgery, and they ask what surgery. It is not easy to explain! when I had my colon removed hat was pretty easy, I guess most people understand the term colostomy bag, even if they don’t know anything else! I’ve gotten to the point where I’ve been saying I’m having the hole in y bottom sewn up since I’m nevergoing to use it gain! my other favourite is barbie butt!
I’ve not let my rectum stop me even though some days it bleeds so heavy that i’m in agony and my pelvis aches, it feels like someone has put a knife up there! I have been out having fun, my wonerful mum took me to see lion king in the west end! I know the next step in my journey is not going to be easy, but I’m ready to fight! Next year I have planned so much! me and squirt all the way together forever!
I am so lucky to have the support of my husband, my mm, my family, andmy friends. This journey has shown what wonderful support I have and has also weeded out the useless people!!!!!
Yesterday I read a blog by nadia (UCVLOG) and it was heartbreaking to here what she has recently gone through regarding relationships and support. I know an amazing and beautiful woman like nadia will find her prince, but every princess has to kiss a few frogs!!!!
So in honour of nadia, and all my wonderful ibd and ostomy friends who are having problems with relationships, family freinds, people not understanding in general, I have made this video.

We will not apologise! We will not hide away, we will not stp fighting, we will not stop raising awarenes, and we will not stop supporting each other! as long as I have breath in my body I will fight this disease and will raise awareness and support others, just as some wonderful angels supported me! Thank you to Nadia and Dennis (UCVLOG) Jo jo cochrane, Amy reynolds and kate (let’s talk crohns and other GI isues), heidi skiba (ostomyoutdoors) Charis Kirk (the bowel movement), amy and meg (my bag and I) jess (uncover ostomy) and the beautiful Alison Atkins.

Speak soon, and take care x

World ostomy awareness day

October 6, 2012

Well today is world ostomy awareness day!

I have been wondering what to post today. i guess today is a day for celebration, awareness, and reflection.

I gues today is the day i drive people crazy posting all over facebook, about ostomies. i did begin that way this morning, but then what difference is that to a normal day for me? I guess some people think i’m a bit obsessed! ?? maybe! but like many other friends of mine, we feel we have to, in order to raise awareness, and give people the support and encouragement they need to get through such a big change in life. to break the stigma associated with not just ostomies but also IBD. as i’ve mentioned before, you cannot escape without having the bowel cancer advertisement campaign! yes this does need to be promoted, but to the extent where gp surgeries, chemists, hospitals, etc refuse to put up literature to other diseases? IBD has the same symptoms, and unlioke cancer can’t just be removed. also even though bowel cancer has such a big campaign ‘the cure’ is never discussed, it is a hushed topic. i feel i have been put in this position in life to be able to help others, I’m not ashamed!

So i began re-posting my video’s and other videos from people i know, and people i don’t. then i came across a video I have watched many times and always brings me to tears! watching this guy has always brought me peace within my own life, whenever i get angry, feel down, say why me, I can rely on this guy to quickly pull me out of the hole. So i went a bit of tangent and posted some of his videos. i guess today is also about encouragement, support, and acceptance.

I feel i need to post al least one of his videos in this blog. i hope he gives you the encouragement he gives me.

After posting his video, i decided well now is the time to write todays blog!

Ulcerative colitis took so much away from me, took so many important years away from me, years i cannot get back. in a way my rectum is a good reminder of what life was like before, we should not forget what brought us to where we are. we need to use our experiences, our lifes challenges, our mistakes, and turn them round, use them for somet hing good. i see many people who have been through some horrible things in life, there lives aren’t easy, but instead of using this to pull themselves up, they get bitter and angry. Only right! But then you have to say i can change things, i can change how i live my life, how i see life, i may not be able to change external factors but i’m not letting people, memories, my situation, my illness, to define me, to control me, to darken my life.

Here is a poem, i love. i try to live my life being the friend.

A man was walking down the street and fell in to a deep whole. The walls were steep and slippery, so try as he may he was unable to free himself from his dilemma. After a while a Doctor walked by, the man shouted up “can you please help me”. The Doctor stopped, wrote a prescription, threw it in the hole, then walked on. Before too long a priest walked by, the man hollered up “please can you help me” the priest, stopped, prayed over the man, then he too left. Soon one of the man’s friends came by, the man cried out in relief. “Hey Joe, will you please help me?” His friend promptly jumped down in the hole with him. The Man exclaimed, “What the hell did you do that for? Now we are both stuck!” His friend replied, “Don’t be afraid brother; I’ve been here before I know the way out.”

I got a letter through the post today. It was my appointment for my pre-assessment for my completion proctectomy, and the confirmation letter of my surgery. The 15th november. how did i feel when i opened this letter? did i feel overwhelmed by how final this is? no going back! to be honest, I felt relieve, calm, scared of the surgery, but no regrets!

So i stand here writing this blog, with a peace that i’m making the right decision. i could go on and on about why i’m not having the j-pouch, my own personal reasons, i would never knock it, for some it is a gamble they have to take, because the chance to live without the bag, is too much of a possible prize to throw away, a bit like playing deal or no deal.

Well i’m off now to post this blog everywhere, then continue with my facebook posting frenzie! then continue with my day, not doing anything special, just being a mum, something i know is only possible to squirt.

thank you for listening!

London, my rectum, and work

October 2, 2012

Last weekend i went to London for the crohns and colitis volunteer conference. i spent a long time wondering what to wear, which was never me before squirt! My mum sees that as a positive as I’m now fashionable and fashion conscious! Though i will always be a girl who is more comfortable in a wetsuit or in combats covered in mud, i must admit i have took a liking to looking good! With it being a crohns and colitis conference, i wanted to show that you can have a bag, and look good and live a good healthy life! Part of me was worried about the reaction i’d get, as a lot of sufferers, (and this also included me before surgery) are scared of surgery so out of fear can react quite hostile! i only had one issue in the conference and that was a pretty deep dicussion on why I fefused the j-pouch! I’m getting to the point where i’m fed up of having to justify that decision!

this was me at the conference!

i learned a lot on the conference which I hope to put into action. i met a lot of wonderful people. i had a great time!

I saw my lovely surgeon, mr box! as you may know, my remaining rectum has been getting really bad! The bleeding has been getting heavier and more frequent . As i’m not going to try for the j-pouch, the only other option is to remove the rectum, and leave me with a barbie butt! you may think, getting such a small bit removed and sewing up a hole would be easy! That is what I thought, but it is actually harder than removing the colon! There is more risks, as it is so low in the pelvis and is joined to organs like the womb, and bladder, and the rectum helps support these. Removing it is risky, recovery is long, but it needs to be done, it would have to come out at some point, so it may as well come out sooner rather than later, that way i can get on with my life UC free, though i’ll always have auto-immune issues caused by the disease, I will be free of the actual disease. in earlier meetings, he’d tried to convince me to try j-pouch, but i convince him of my reasons for not wanting too, he then had refused to do it until i’d ‘finished’ having children. i was expecting this time to have the same wall, i even armed myself with a picture of my toilet, it’s ok i’m not going to show you!!!!!!! I didn’t have to twist his arm! So after going through the options, and all the risks, we set a date!!!!!! 15th november! the only problem is it is 3 days before my son’s 10th birthday, but I need it done thi year, and i want to be ok at christmas.

I love my work. As i’m now unemployed as my work contract ended, I decided the best plan was to fill in some gaps in my portfolio, do some more practicas hands on work, so that when i’m all healed, from having my rectum removed, i can try to get back into work. i may as well use this time to the best of my abilities, in order to make me totally employable! Yesterday I went out on a day to do some practical conservation work. Before squirt and before UC i used to do this quite easy, even with UC when it wasn’t really bad i managed to do some practical conservation work but it was in my own time, working alone, i build living willow structures. I have been out working on willow with squirt, and have been out working in other aspects of my work with squirt, and i feel totally confident in him. he difference about yesterday, i was working as part of a team! and a part of a team of men! so not only did i have to prove myself as a woman, i had to prove myself as an ostomate!

when i got there, i decided to not disclose squirt. totally not like me, but as a female, I was already at a disadvantage, throwing that into the mix could have made them look at me as the weak link! i worked the morning, inserting, and using my willow expretise to disquise the otter set. it was tough work, working on a steep cliff, with not the best of soils! yes i got tired, but was not going to show any weakness! i wore my support belt.

At lunch, we were talking about our plans, they asked how long i was planning to be working with them. so i thought that was the right time to disclose everything, I had proven myself that morning. so i told them I was working with them till beginning of november because i was going in for major surgery, and that while recovering i’d do some conservation admin, instead of being out in the field. they asked what surgery, so i told them I had a bag, and that i was getting my bum sewn up! they went a bit funny for a few minutes till i started cracking jokes about it! my favourite ones at the moment, are

“I’m not yet perfect, i still have a crack in my ass!!! though i’ll be perfect soon!”

and

“i failed english! improper use of the colon!”

I continued the afternoon’s work, and they didn’t make allowances, i wouldn’t expect it anyway!

I got home exhausted!

Disneyland!

September 10, 2012

The last week in august i went on our first family holiday! We had been on a family holiday before my daughter was born, but UC, and the surgery prevented any holdays. I’d been away for weekends camping with my son, and even since surgery had took the plunge and went camping, but this was different! this was a family holiday, going abroad! staying in a hotel! My mum though I deserved a treat after everything i’d been through, i think swe all deserved a treat, it has been a tough fight which i’ve almost won!

We flew to Paris. I was nervous about flying, you here some horror stories, but I think they are few and far between. I was prepared. I had my travel certificate, I emtied my bag before going through so that it wouldn’t be noticeable. I was very nervous, but I was fine! the funny thing was i walked straight through, no bother at all! My husband on the other hand, had loads of trouble and had to take of his jacket, belt, jewellery etc! my mum has steel knees so you can imagine that!!

Even though I never leak, I took my disposable bed pads, kindly supplied by my delivery company, i also used them for my daughter, just incase! i took double the amount of bags I would normally use. I had a great time! I even forgot about my bag a lot, which again got me thinking of an alarm for the bag!

I really missed the disabled toilets! we are so lucky in the uk to have our RADAR disabled toilets! Also toilets in france are not like the uk! They have far more water in them, are not as deep, and most had a sensor flush behind the toilet! so i sat on the toilet, shuffled back and before i got a chance to empty the toilet flushed! gave me a bit of a shock! decided to empty kneeling down, just while we were there!

I didn’t get to go on any of the big rides! not because of squirt, but because my husband is a wimp! my mum has her steel knees, my son has heart condition and my daughter too little. so we just did the family thing!

Had a great time! I could not have done it before having squirt!

I even went in the hotels pool and sauna!

In loving memory of Alison Atkins

August 4, 2012

Just over a week ago, I woke up one morning, and began my day the way I always do.

I checked my phone and began reading through all the messages, emails and facebook notifications. I always have a lot, as a lot of my friends live in different time zones! But that morning was different and had a huge impact on me. I read a blog post from Jess at Uncover Ostomy, as I read it, the penny dropped that a friend, “Alison Atkins” had past away.

It took a while to sink in, Alison was an amazing young girl who I’d got to know via facebook and inspired me when i had my ostomy, and she also inspired me to raise awareness and work to become an ambassador for Ostomates. Alison features in some of my videos, she loved them, she loved being in front of the camera, I loved seeing her silly photos posted by on her facebook page, her amazing smile and love of life always made me smile.

I felt that i had to do something, so doing one of the only things i am good at, i asked her parents if i could make small video as a tribute, i was honoured when they said “yes” and asked me if i could make the video so that it could be used at the funeral to as a tribute.

Overwhelmed with the task at hand, i began putting together a tribute to Alison, something that would truly honour such an amazing young woman. With a lot of input from family, friends and the Ostomy/IBD communities, the video was finally complete. The video is going to be shown at her funeral, her parents have also given their permission for it to be made public via “YouTube” so that it can be shared and her memory live on to inspire others.

Please watch and share.

First week of summmer!

July 26, 2012

It has been a busy first week of the summer holidays!

We began the summer with a day at the beach! I didn’t think the weather was going to be good and since I was with a load of little kids I decided against taking my swimming costume, as I knew if i had my costume on i’d go for a swim! It was a beautiful day! the surfers were out, I was getting very excited because i’m getting back out in the surf this summer!!! even though i didn’t have a change of clothes i couldn’t resist a dip and got pretty wet wave dodging with the kids!

I went out to a fashion show for the charity mick knighton mesothelioma research fund.

Quality of Life?

My last diary entry caused a lot of controversy. I’m not going to continue to dwell on it because it is like banging your head of a brick wall! People have their views and are not going to change! But two things which were said which I will bring to peoples attention, someone said they have lots of other serious health issues, never whine or be negative, yet could never have a stoma! Then there was also the discussion on quality of life, someone said maybe it’s a quality of life thing, each to their own! to which i replied it is a quality of life thing, I wanted a good quality of life! I will continue to prove i have an excellant quality of life, better than living with UC!

I am open about my stoma, but i can understand why people hide theres! I have never had a bad response, i’ve had some ‘pity’ looks, and you pooor thing etc, but they soon disappear when people see how it is not affecting my life, but actually making my life better. I have however heard a few horror stories of people’s responses! i have heard of people going out on a date, having a great time, then at end revealling they have a stoma and the date running a mile! I’m lucky I was married before my stoma and have a wonderful husband who loves me for me! I have a friend who I helped through surgery, I now have the honour of being called her stoma mummy, for which I’m truly honoured! She shared with an old friend that she had the operation and instead of commenting on how well she was he labelled her as disgusting! When is this going to end???

The Value of life!

July 16, 2012

yes, your probably thinking 2 posts in 1 day! but something has got my back up aand i had to speak out!

My son has a congenital heart defect. He has aortic stenosis, his aortic valve doesn’t work properly. He had surgery when he was younger, and so far has not needed anymore, yet we live under the possibility of him needing a valve replacement when he is fully grown. Through his heart problem, i have met some amazing kids, who are either awaiting transplants or heart surgery, recovering, or have lost there battle but fought and smiled to the end. They remind me that life is precious and should be valued. I was at a celebration party on friday night, and to see so many angels, so many fighters, was truly amazing! so while i’m on this point if you are not on the organ donation register JOIN NOW!!!!! and talk to your family! Even if they can’t use anything it is worth the posibiltiy they could!

so why am i talking about such amazing inspirational kids? i’m trying to show how valuable life is! i know many people with many diabilities, an amazing friend of mine who is the loveliest person you could ever meet is blind, but she isn’t full of self pity, she is definately worth it, and i value every moment i spend with her! earlier this year i met a toddler with an ostomy, it never phased him! He was so inspirational, his attitude towards life would put a lot of adults to shame!

Today i was reminded that there are people out there who would rather die than have a bag! They feel life would be worthless! they feel life would not be worth living! Even people who know me and know my accomplishments, my battle, my victory, would still rather die!

when people say that i feel like they are saying my life is worthless! Then i think of all my fellow ostomates, i think of my friends who are disabled, but are such strong fighters, who value life! and are worth so much! i think of all the heart kids and others who are in that position, who are fighting to hang on to life and would swap in a heaert beat if it meant they would live. i think of the beautiful angels that lost there fight how much they would have loved the chance of life! i think of my step dad who would have given anything to live, who is missed so much!

The bag is seen so badly! Would someone who was told you would die if you didn’t lose an eye, or an arm, or a leg? I value life. It really upsets me!

so are you a fighter, or would you rather die?

KEEP FIGHTING!!! and value life!!!!!!!!!!

Looking back and standing at a Cross roads

Firstly, i’ll give you a bit of a catch up! I raised over £1000 which has been split between the different charities that I was jumping for!

I have just moved house! I have returned to where I grew up, I have a nice house, something i’ve been wanting for a very long time, oh, and the important thing I have 2 toilets!!!! yay!!!!!!

Moving was a challenge, a lot of decorating and heavy lifting, and on numerous occassions i forgot about my bag till it was really full! makes me think someone should invent an alrm or something! We don’t get a signal like we used to!

Healthwise, my rectum is still playing up, and I’d prefer to have it out, I’m well again, wanting to get on with life but feel it is holding me back. i have managed to bring forward my appointment with my surgeon to September.

Although I should be happy, i just feel down! Before now i have always had something to focus on, a fight, a goal, now I feel like i have no idea where I’m going! So you get to know me I thought i’d open up more, not just talk about stoma stuff. hopefully you’ll get to know me, maybe you can relate to me????

i’ll give you some background, I was always made to feel like i was worthless and would never become anything, so I set out to prove people wrong! i did my a levels, then my degree, focussing on passing and getting a job, being somebody! When i graduated, the dream smashed into a thousand pieces when I realised the competition in the job market! selling myself is not my strong point so interview after interview, failure after failure! I got a low paid job as a technician, my next goal to work my way up from thebottom! Oops, I forgot to mention I married the man of my dreams! (he gets left out! I should mention him more, he is my rock!)

I fell pregnant, and got made redundant, so made my next goal being the best mum ever, and developing more of my CV, well i thought it would work! i then spent 5 years volunteering as a peer supporter, developing and environmental play programme for pre-school, and working with speach and language. I still felt this wasn’t enough so ventured on to a masters course, while being a full-time mum! my new goal was to get a good pass, yet still manage to be a good mum and a good wife. I passed, and untertook a 6 months full-time unpaid placement at DEFRA, new goal, impress, and get the paid job! Finished the placement, worked hard had a good time, didn’t get the paid job! So took on a seasonal role as an educational warden, I loved the job, and was upset when it ended. I felt like i’d found where I belonged! So new goal, build my own business and work freelance! If i wasn’t going to get work by interviews i was going to make work!!! So over the past 7 years i have been working freelance, i’ve had some great projects, some paying very little, some more. it never really paid for itself, but when wwork came it was good!

Then 5 years ago i fell pregnant with evangelina! that was when UC got discovered (although had problems with ‘IBS’ since childhood) so my mind was pre-occupied with getting through pregnancy, coping with being really ill and dealing with the diagnosis. The next 2 years were filled with being a full-time mum again, and working hard to stay in remission, but then, I stopped feeding her and the remission ended! so my next goal was to get back into remission! i had also just got a contract for 3 years of freelance work, well paid work. I had no time to be ill. Well you know where i ended up! My goal became to get through the surgery yet still mange to keep up my work, which i managed, i have no idea how! The past year has been focussed on purely recovering, raising awareness, and wanting to help people, and volunteering as a school pastor. Also the moving house became more important.

So we have reached today! My daughter starts full-time school in september, so i’m not going to be needed as much. Apart from my stump i am healthy! I feel at a cross roads, it’s not that i’m not happy, i have the most amazing husband! Being a part of ostomy support groups has shown me that some partners do not value there vows and a a waste of space, makes me think how lucky i am! I have two wonderful kids, I wold never change them for anything! But as i look back i re-evaluate, and wonder where my path leads from here. i need a new goal, i need to feel worthwhile! i have no goal. i need a goal, a plan, i need to work, i need to be somebody. A rare find on the beach at the weekend re-ignited my passion for science, but then my life has been devoted to helping and supporting people, Being here, being able to support people, and help people, making amazing friends.

Even though i’m in a bit of a dip right now, i will never forget what my stoma squirt did for me! I value my health and will not take it for granted, and whatever path my life leads me from here, I will never stop raising awareness!

I survived the Jump!!!

June 16, 2012

Today finally arrived! I didn’t get any sleep last night, I don’t know whether it was nerves, antipitation, or excitement, perhaps all 3, and many more emotions mixed in!

I was very excited! Me and Lucy the Gastronaut turned many heads as we made our way to the Tyne Bridge.

I got down to the registration, and began getting strapped up.

Once I got suited up me and Lucy made our way up to the bridge.

Soon it was my turn to jump!

When i got to the bottom I was so full of adrenalin! it was So fun! it felt like I was flying! I really wanted to do it again!

I got all my stuff off and went to view the photos!

I celebrated with a pizza hut! I didn’t have to worry about my bag at all! I hope my jump helps to prove that an ostomy is not the end of the world, but is just the beginning! I’m so proud to jump for all of you!!!!!!!

Raising Awareness!

June 13, 2012

I have made it my mission to raise awareness. I feel that all of the negativity around stomas is because it is not talked about! I woke up this morning, checked my phone and noticed a friend had blogged about the issue of negativity and hatred towards us ostomists. I was also reminded of the episode in greys anatomy! The blog really hit a nerve with me! I was also reminded today how secret having the surgery can be. I know ostomates who hide the fact they have had surgery from even members of there own family and are terrified people will find out! I have also been told by someone from an ostomy organisation that what people like me are doing is causing a detrimental effect on fellow ostomates. What do you think?

I am under the impression that if it is seen and normalised, it will not be so hated! I find it odd that if you went to the hopsital and were told you needed say a heart operation, or a new liver, or maybe have to loose a leg or something in order to save your life you would trust your doctor (I hope!) but when a doctor says we need to give you a stoma in order to save your life, or to give you a much better quality of life people tend to run a mile! I never heard of a stoma before I was diagnosed with UC, and didn’t really look into it in detail until i was told i could possibly need one.

Another issue is support. I know myself and a lot of my friends have found support networks and groupd a lifeline. my life doesn’t evolve around my stoma, but I do need support at points. Having friends who I can chat to, who understand, who I can confide in is great! i was told these groups are not good because all you have in common is your stoma! This is not true! Yes, it is a common factor, but a lot of my ostomate pals, I have gotten to know well, and some I have a lot more in common with and I have made friends for life!

So, I am going to continue to raise awareness! My zipwire off the Tyne Bridge in 4 days is just one (dramatic) example of this! I am SO EXCITED! because a stoma company is going to send a proffessional photographer, and are going to use me in there ad campaigns! I feel so honoured! i’m also very honoured to be given this blog and being a part of stomawise!!!!!!!

Don’t be ashamed! Be proud of who you are! A stoma shows YOU HAVE WON! You have beaten whatever tried to kill you! I want to hear about your adventures, thing you can now do because you have your lifesaving friend!

What do you look for in a new house?

In a list of you know you have IBD or an ostomy if………….

the one that fits perfectly with this post is:-

The thing you most get excited about when looking for a new house is the size of the bathroom!

I have been looking for a perfect new home for quite a while now, and one of the things I wanted was for two toilets and a decent sized bathroom! I have had to put up with a small bathroom and an awkward positioned toilet! It has been an inconvenience and I have broken many toilet seats! Having my own toilet and more space will make life easier!

So this week I got a new house!!!!! and what am I most excited about??? you’ve guessed it! the Toilets/Bathroom!

Anticipating the jump!

June 6, 2012

I will be zipwiring off the Tyne Bridge. I’m jumping to raise money for stomawise and 3 other charities. For those of you who don’t know the tyne bridge, this is it! it is 25 metres high.

I spent a long time thinking what to wear. As well as raising money for some great causes, I want to use the jump to raise awareness and show that having an ostomy does not limit you, but rather can give you a much better quality of life. After many discussions with fellow ostomates, we came up with this!

The front of my t-shirt!

here are pictures of the back of the t-shirt. Is your name on here? I have added more names since these photos.

I will be posting a picture of me wearing my t-shirt on the day of the jump. Even if your name is not on my top, i am still jumping for you! If you live nearby come and support me, maybe someone can push me?? only joking! I will be jumping at 11am, lets get some awareness going!

i’m also still after sponsors. If you think it is worth paying money to have me jump then donate at www.sponsor-me.org/meardonna. if you cannot give, it’s ok, but could you share this blog? and share my jump?

Hello!!

This is my first post on my stomawise diary. some of you may know me, but for those who don’t, I will tell you all about me!

I wont go in to the story behind why I ended up with squirt my stoma, if you want to know my journey, you can find my story on stomawise in the lifestyle section under my story - Donna Mear.

I am 32, i live in the North east of England. I have an amazing husband, and two beautiful kids. kieran 9yrs, and Evangelina 4yrs.

I am very active and love sports, especially kind anything to do with heights and water! I love camping and walking.

This is me!

Can you tell I have a bag?

While I was ill I was unable to do the things I loved! Since squirt I have gotten my life back, 6 weeks after surgery I was back out camping and canoeing! It has now been 1 yr since my surgery, I have had so many adventures, from the things we take for granted like going out for a meal, playing with our kids, to camping, climbing, abseilling, and swimming in the sea!

This is me last weekend drying off after a swim in the sea. I can’t wait to get back in the surf this summer!

I hope you enjoy reading my blogs and getting to know me. If you live in the north east of england feel free to visit our local friendship and suport website www.thegeordieostomates.webeden.co.uk.