Weʼve raised £0 to To Fund Blog and Laptop for people with multiple Stomas.
- Closed on Friday, 13th October 2017
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Due to autoimmune disease (where my body is attacking itself). I have been left wearing two stoma bags these collect waste from my bladder and bowel as i lost these bodily functions. I have helped set up a group online for people like myself who have two bags we have named ourselves "DoubleBaggers". I would like to setup a blog, to be able to do this i need to pay a webhost and wordpress both require a year in advance. I also need an laptop as at the moment i am running the group etc on my smart phone, i am struggling to do this as it hurts my eyes so i can only work on it in short time periods. To be able to blog will cause more strain and possible damage to my eyes trying to do the blog on my phone. I want to use the blog to reach out to people who do not want to belong to a group. The DoubleBaggers group are going to be doing a photo shoot for a campaign to raise awareness of the issues the DoubleBaggers face which are unique to people with multiple stomas.
Most people have heard about having a stoma for bowel functions known as Colostomies or ileostomIes. Where as a Urostomies are urinary stomas (Where urine is collected in a bag via a stoma) are often the forgotten and unknown branch of the stoma world. Affecting any age they are formed due to Bladder Cancer, Radiotherapy Damage, Bladder Disease, Neurological Conditions, Birth Defects and trauma. During my many hospital admissions, I still regularly get asked about my Urostomy. Some Drs have asked if i have two stomas both for bowels and they have a real confused facial expression. I then have to explain what they are, DoubleBaggers also find that one stoma can affect the other but the surgeon for one often knows nothing anout the other. This is where having a group of people facing the same issues can communicate and often point the Drs in the right direction of best treatments etc. The blog will be addressing such issues as keeping skin around the stomas healthy, tips on clothes as people with stoma bags often face issues around hiding the bags, self esteem issues, foods that affect bladder and bowel function, testing new products availble etc. I used to be a nurse and my two friends that work with me with the group were both medically trained. Part of our work is particularly to raise awareness of Urostomies as they are the forgotten group in the Stoma world.
Some of our group were wanting to help raise awareness and we created a poster of the 24 brave, beautiful and strong men and women all over the world with Urostomies proudly exposing their urinary stoma pouches. One of the biggest hurdles post op with any surgery is body image and accepting your body with a stoma or two. As you will notice on the poster many of them have two stomas. When we setup the group on Facebook we thought we would be lucky to achieve 30 members in 3 months since July 2017 we now have 110 members and have requests to join the group daily. We want eventually to setup a website and a forum to reach as many people as possible some people wont use facebook so a website is vital. The first thing many of our members tell us when they join is that they have felt so alone and have felt hopeless as when they ask medical proffessionals they get conflicting advice as many Drs and nurses have knowledge about one tupe of stoma but not the other. We are determined to change this and we want to eventually influence hospitals to change this. Even though we are a small group of pee we should have the best care avaiable. Their is the misconception that people with stomas are over 50 years old and have had cancer this may have been the case in the past but this has changed. Figures show there are 100,000 people in the UK 80,000 colostomies 50000 ileostomies and roughly 10,000 urostomies. People with Urostomies are like the middle child of the stoma world often forgotten and misunderstood we now must start stamping our feet to be heard. In raising awareness of Urostomies we can raise the awareness of the UA charity. Also in the process we want to make everyone aware of the issues facing people with two or more stomas. If people with Urostomies are the middle child people with two ostomies are like step child! Please help me to be able to help others like myself to not feel so isolated even feel like they have no hope. There are people out there that are so afraid of their bags leaking or are afraid people can see their bags they no longer leave their houses. When they have found our group we find they have been given the wrong information or no information. There are also people who need our help and support to have the confidence to travel abroad, find the best Drs even to do normal things again like go swimming, take part in sports because they have lost confidence in their bodies. One group member we helped fond an outfit for her to wear to her sons wedding she had not left the house since her surgery a year before. She was so worried one of her bags would leak so we told her to pack a bag of emergency suies another set of clothes and leave it in her car. When she came back she said she wishes she had found our group sooner as she had lost a year of her life unnecassarily.
I am asking for this money as the three of us running the group are all two ill to work all three of us has terminal diagnosis so raising funds are difficult.
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