On Monday 12th February I had to have a flexible sigmoidoscopy on my remaining rectum and sigmoid colon. To say I was nervous is a total understatement...I was petrified! I remember having this procedure done before my ileostomy about 7/8 years ago but this still felt like the 'unknown' to me. I thought I would share my experience of having a flexible sigmoidoscopy talking about the preparation and what happened on that day for anybody else who may be in a similar position and face their first 'scope' since their stoma.
This year my theme for 2018 was ‘Stepping out of my Comfort Zone’ and I have to say I have started this off in style!
Many of you may have seen over my social media platforms that on the 22nd January Steve and I flew out to Gran Canaria for 5 days doing a lifestyle video shoot with Coloplast (sorry to be super secretive but all will be revealed soon).
I am a big believer that the universe works in magnificent ways and things happen for a reason; let alone that people enter your life for a reason. I very much feel this way with Steve and that our stoma bags found us love, but also I needed this little push to step out of my comfort zone and finally go abroad again.
I originally wrote this for my website last year. However in aid of Rare Disease Day on the 28th February this year I have decided to post this on my blog. Since my stomas were not due to IBD or cancer; I often felt on the outskirts, alone and unwanted. That all changed when I found the online stoma community – a community that was warm and welcoming regardless of how I came to have Bob and Squirt.
Here is My Account of What it is like Living With a Rare Disease
Living with a rare disease is like seeing a party full of people in a glass box. There is a thin panel of glass between you but you’re unable to join them. Missing out on all the food, drink and dancing! This is exactly what it is like having a rare disease. We are on the outskirts of the more recognised conditions. Having the same symptoms or similar treatments but unable to access the same support and recognition from the doctors. Experiencing the similar anguish leaves us feeling lonely outsiders and fighting for an understanding of our illness.
After visiting numerous departments and having every investigation known to man, another specialist saying the same dreaded words…. “I don’t know what this is” and so it starts again...’Groundhog’ day, as another department takes on the ‘challenge’. Eventually, you have put into a pigeonhole that your symptoms are down to a psychological disorder, even though in your bones you know there is something physically wrong. For me I knew in my heart, there was a medical reason why I could not empty my bladder and bowel. I did not stand for this quick and easy diagnosis. As we know once those words are in your notes….that’s it, It’s very difficult to get this changed and investigate further!
I’m guessing lots of you have experienced the constant explaining, that you could after saying it so often, repeat it in your sleep. To be faced with a new doctor and that same familiar blank or perplexed look.
So, here begins our education in becoming an ’expert patient’ or an ‘empowered patient’ in our own disease. A quote comes to mind by Norman Cousins:”
“Each patient carries his own doctor inside him” – Norman Cousins
We have the audacious challenge of juggling and coordinating different departments to communicate with each other like a commander in the army, meanwhile trying to survive and live fully with this life-limiting illness.
In my case after years of battling to be heard, I eventually got referred to the specialist Neurology centre in London, where I had specialised tests with one in particular been the tilt table test. I was completely unable to move with safety straps over my chest and legs. Plugged up to a million machines all designed to let the doctors know that I was still breathing. Once tipped upside down I felt like I had been abducted by aliens torturing me until I fainted. The experience was anything but pleasant. Eventually, I got the diagnosis that I fitted under the umbrella term of Autonomic Neuropathy (Dysautonomia). Due to my bladder and bowel failing on the autonomic system the specific type I have is Pure Autonomic Failure and Postural Orthostatic Tachycardia Syndrome.
Initially, I felt some relief and after years of doubting myself, there was an actual medical reason for my symptoms. That moment didn’t last long when I soon discovered that there was no cure and the hospital couldn’t do anything. I was dropped from London apart from a yearly appointment and was under no Neurologist where I lived,
I was left to navigate myself in the deep dark blue sea with this news on my own. Due to the rarity of my disease, most medical professionals do not know much about it. I do not blame them but repeating my story time and time again and explaining what I have, you soon start to feel totally alone realising that you know more about your condition than the medical staff. Trying to desperately control everything and finding it hard to hand it over into their hands when they do not know much about your condition. I found it very challenging and frustrating, not quite fitting into certain illness categories that warrant a stoma. That was until I found the online ostomy community that opened their arms and I felt welcomed regardless of why I had my stomas. I finally found a community I belonged in and understood me and this was paramount for my accepting of my rare disease.
I could talk so much about ‘invisible illnesses’ the trials and tribulations we face every day. Being judged for not looking as ill on the outside as we are on the inside. There are a few campaigns going on at the moment that are challenging this; the invisible illness campaign and Blake Beckford has made national coverage with his experience regarding toilet access highlighting ‘invisible illnesses’.
One particular incident that will always be engrained in my memory was a few years ago when I was in Bristol. I had my indwelling catheter with a bag attached to my leg. Sitting in the disability seats on the bus an older lady shouted profanities at me for being inconsiderate sitting in that area. In this instance, I pulled up my trousers and showed her my leg and my ileostomy. She soon quietened down but these are some of the issues we face justifying ourselves constantly for using disabled areas and disabled toilets.
We all feel similar anguish, frustration and utter despair to first get a diagnosis and second, trying to exist with a universal lack of knowledge of our illness in society and the medical profession; however, there is HOPE in the IDENTIFICATION with people experiencing the same issues. There are excellent websites and Facebook support groups that may not be about my exact condition but are about rare diseases, stomas and the similar issues we face.
YOU ARE NOT ALONE!! We must all unite together and remember:
If you identify with what I have said and have a rare illness I would love to hear from you :)
Throughout my life I have been told that I am a bit airy-fairy very much skipping through life then...oh look it’s a unicorn.
I don’t always pay attention to my body which with 2 stomas and other complications can be problematic sometimes. On Tuesday 9th January I had no choice but to listen...my ileostomy had stopped working and the pain was out of this world.
Looking back I believe now my blockage was down to Special K cereal I had at 9.00am. It wasn’t until my 3rd meal that day at 5pm did I realise I had not emptied my bag at all and there was nothing in it. My tummy was very bloated and the pain started to build coming in waves. After another hour the pain intensified and I was letting out a little moan I could not control every 2 minutes. Feeling extremely sick it was then I started to panic! I tried everything to help the blockage; a hot bath, hot water bottle, fizzy drinks, massaging, squatting, shower on my tummy lifting legs but nothing helped.
What was most concerning is my stoma is normally prolapsed 8 inches that can be annoying but I know it will always be out. During this blockage my prolapse had been sucked in and the spout had flipped around. In 4 years this was the first time I had experienced no prolapsed and all and it was scary because it wasn’t normal for me. I started vomiting and the spasms were getting worse. I called 111 and a nurse there refused to let me get a taxi and sent an ambulance. This took 3 hours and in the end I was getting worse, vomiting undigested food, screaming with the waves and I decided to get a taxi to A and E.
(This isn't normal for me! Usually, I always have my prolapse out for 4 years)
The taxi driver thought I was pregnant and in labour but I was in so much pain I didn’t correct him. I could hardly walk and groaned my way over to the receptionist. I glanced at the waiting times and saw 5 hours at which point I thought I wouldn’t last that long on a chair. The receptionist was amazing went off, next minute she helped walk me straight through to an isolation bed in majors. They were extremely busy yet she went out of her way to help me and I am very grateful for her initiative.
I have had spasm pain before. You don’t have a SPC for 7 years and not experience labour type pain in the form of my bladder giving birth to my catheter and this felt similar but for my bowel
I was letting out this awful scream/moan every 2 minutes and apologised because I had NO control over it (along with a few swear words again couldn’t really control) I have never had this type of pain before but I knew it was a total blockage .
The sister came and helped me and the first time in about 5 years they got a cannula in first time. I was given a paracetymol drip and then iv morphine which worked well but they believe I may have become allergic to this because I came out in a white rash with my veins prominent.
After an hour I started to panic thinking would I need sugery? How would I go on holiday in a week and a half time? Have I messed up next weeks opportunities because I wasn’t mindful about what I was eating?
Just as I was planning out the next few days in my head involving surgery and cancelling appointments I let out a big scream and my bag started filling up with very thick looked like undigested food. Instantly the crampy pain subsided. I continued massaging my tummy and secretly was thanking the universe for listening to my prayers. The doctor came to see me just after my bag filled up and the sister said I looked much more comfortable. He was a brilliant doctor and really listened to me and respected my knowledge in regards to my body.
I had an x-ray to check if the blockage had gone. The results showed I had some big loops that were still very dilated showing I was still in an obstruction. After an hour I felt much better. My bag emptied twice and I was trying to persuade them to send me home because I knew the blockage had gone and the rest would pass through eventually. The doctor spoke to one of my surgeons who looked at the xray and agreed with me that the worst had gone and the rest should disperse soon. I felt 1000 times better than when I came in and knew with ample rest and food restricting (soft diet) I would be fine in a few days, It was nice to hear my surgeon tell the doctor ‘Rachel is an expert patient and knows her body extremely well and in this case I agree with her about going home.’
So at 5.30 I called my taxi feeling exhausted but so relieved and grateful I didn’t need surgery and came back home to sleep and recover.
Over the next few days, I was a bit sore and exhausted. I noticed I was extremely scared to eat again and tried to battle through this and eat soup, soft food that wasn’t too difficult to digest.
I have had partial blockages before but this time something was different this was a full blockage and my god it was painful! It is important to know when you need medical attention and to ask for help. Obstructions can be really dangerous, after trying all the go to ways to relieve a blockage and still this doesn’t work or you start vomiting then that is the time to seek medical advice.
Here is a link from the ileostomy association on the symptoms of a Bowel Obstruction and what to do if this happens. It is very informative.
Have you experienced any partial or full blockage since your surgeries? I would love to hear from you.
For the last few months I have slowly been reading an awesome and inspiring book... 'It Takes Guts" by Evelyne Brink – a story of love, hope and a missing bowel. Before I start I would like to say thank you to my landlord's wife Alexandra for sending me this book and connecting me on this path with Evelyne and Tuffel :)
Although this book may not seem to be on the surface an average self-help book, to me it has really changed my thinking and has ignited a fire and drive deep within.
I thought this would be a brilliant book to start off my new monthly series #selfhelpbookreview where I will be reviewing a self-help book every month. Over the last 2 years, in particular, I have continuously worked hard to improve my personal- development throughout my illness so I thought I would share with my readers some books that have helped me through tough times.
The first book I will review is:
“It Takes Guts is the true story of little Tuffel, who upon birth was sentenced to death. This is a remarkable tale of the human spirit rising above the seemingly impossible, told by his mother, Evelyne. Growing into her new role as a mother and carer, she takes you on a journey of personal growth and trying not to lose 'it', herself or him throughout sleepless nights, hospital life and medical jargon - all while keeping her sense of humour along the way. Tuffel has become the first survivor of 'ultra short gut' syndrome: living with no small intestine. This uplifting and deeply emotional journey will fill your heart with new hope for what is possible for each and every one of us”
As the blurb states “This uplifting and deeply emotional journey will fill your heart with new hope” is exactly what this book has done for me! I have found and felt in my heart a new HOPE and direction for my own health journey. This book describes how a baby boy, mother and father pull together and visualise the possibilities through a dark time and keep going against all the odds.
This book has changed me and I cannot really put into words how and why.
Evelyne writes with such raw honesty that when you are reading you can’t help but feel like you are talking to a friend. The book tells Tuffels story in a blog like format and again this allows you to feel like you are there with them along this journey. What stands out is Evelyne's’ amazing ability to write with humour about the devastating condition her baby boy was born with. Not just with humour but with wisdom
I have been through a lot with my own health and sometimes in the past, I have felt overwhelmed by what life has thrown at me. Reading this book you cannot fail to find comfort and inspiration from this incredible family and a drive to make the most out of the situation you have. It really has changed how I look at life and where I will take it in the future.
The book has an introduction from Tuffel's consultant neonatologist at St. Thomas and it really adds depth and how many hearts Tuffel has touched. In that letter, you can see how Evelyne's insight into being a mother with an ill child has helped the consultant reflect and have a small insight into what it feels from a parents point of view.
Evelyne describes what is like when you have an expectation of sending 'the baby is here' txt and everything went well. Instead you are sending a message that says “He was operated on at only 12 hours old. Within the first 24 hours, he was sentenced to death” Evelyne describes how she and her husband coped with the news. The Doctors said that he is not going to make it and instantly Evelyne responded ‘Is there not a tiny bit of hope’ this hope and dream of miracles is a constant theme throughout this book and the sense of never giving up.
Why this book really touched deeply for me is the similarities. For example being in hospital a lot myself, some of the experiences Evelyne and Tuffel have had have been similar. For example, all my hospital admissions, having a stoma, drainage bag and having to be on TPN at times. I couldn’t help when I was reading to reflect and think how hard my own journey has been on my family and it helped me have more compassion for my friends and family.
What I also took from the book is through difficult times where you feel your life is falling apart how important little goals are. For Evelyne, while Tuffel was in neonatal and hooked up to lots of machines feeling helpless and not in control she decided to focus on beating the breastfeeding donation record to help other babies. She described her milk as liquid gold but you could see where everything was so out of her control for her how important it was to express her milk and feel like she was in control of something. In the end she broke the record and ended up donating 60 litres of milk! (I know I cant even comprehend that)
The book ends on a positive note with Evelyne and her family looking into new territory in regards to stem cell research for Tuffel. She ends by saying ‘Thank you for your thoughts, energy, your spirit and for opening up to your own ‘possibility thinking.’ and this is what this book has done for me I have opened that door for infinite possibilities with my stomas and ill health.
I think everybody should read this book but if you are reading this and have health issues, a chronic illness, stomas or are have had an artificial feed then this book will really help with vision and hope. You will feel inspired once you have put this book down.
For me, this has definitely been a self-help book and has spurred on a deeper fight within myself and drive. From the bottom of my heart, I am grateful for Evelyne sharing Tuffels story and her honest journey. It has helped me tap into the potential that is within myself regardless of my chronic illness.
A bit about the author
Evelyn Brink is a personal and executive coach, professional speaker and author. She helps committed individuals to shine their light on the world and create a place of deep aliveness. She has been known as UK's number 1 Madonna impersonator and has written and produced her own music and shows around the world. She loves a laugh, romance and radical honesty.
It never ceases to amaze me how the universe continues to work in mysterious ways. Never in a million years would I have ever taken part in a lingerie photo shoot before my ostomy surgeries. I just did not have the confidence in myself or my body to bare all even before I got ill.
I remember in school a girl in my year won a modelling competition and began to have a career in modelling, As a very geeky, lanky, braces and glasses kind of gal I secretly dreamed in another life (and another body) that I would have loved to have at least one opportunity to take part in a photo shoot and experience being a model for a day. However, I resigned early on that this would never be my path and I quickly forgot about that dream.
It is New Year's Eve and I thought I would reflect on 2017 and what it has brought me...
It is hard to put into words how much happier I have been compared to last year. 2016 was extremely difficult both mentally and physically and involved 7 months of the year as an inpatient in Bournemouth Hospital. Last year I roughly had 6 refashion surgeries (8 in a year and a half) for my prolapsed ileostomy that resulted in complications every time. I had sepsis numerous times as well with one time involving a cardiac arrest which added to my time in the hospital.
Hi, I hope everybody had a lovely Christmas!
I cannot believe that this time last year all this was a pipe dream and my blog wasn't even launched yet! So much has happened this year and I have met such awesome, inspiring people on my journey that I am proud to call my friends. A lot of these posts were inspired by you guys and by my own experiences so thank you for contributing :) I have always said If one person can find some identification and hope in my posts then I have done my job.
Hi everybody, I thought I would post a quick 'Merry Christmas' for everybody today before the mad rush over the weekend!
This time of year is the perfect time to reflect and show some appreciation. Christmas is a time of giving, I want to give my love to everyone and say I am truly grateful for all of my readers, family, and friends that have and continued to support me in my journey. Honestly, I could never have done this without you all.
The NHS was created on the 5th July 1948 out of the ideal that good healthcare should be available to all, regardless of wealth. In many ways, it has been a victim of its own success. Improvements in treating disease and illnesses have helped to create an ageing population which means more people than ever need its services.
This, therefore, consequently has put the NHS in financial crisis and is under pressure to reduce its spending deficit by £30 billion in 2020 (NHS England 2014)
One of the areas that have been targeted to try and cut back spending are prescriptions.
The Ostomistic Life is a free online magazine to help ostomates under 40 navigate life with an ostomy. Founded and created by Talya Goding who runs a blog Feeling Ostomistic. Talya strongly felt the need for more relatable content for young ostomates and so the quarterly online magazine was born!
Today, the 3rd of December is International Day of Persons With Disabilities!!
Disability equals diversity, not disadvantage!!
In the UK alone there are 13.3 million disabled people (SCOPE Figures)
- 7 per cent of children are disabled
- 18 percent of working-age adults are disabled
- 44 percent of pension age adults are disabled
International Day of Person's with Disability was proclaimed by the United Nations (UN) in 1992 to promote awareness and mobilise support. Today aims to promote the rights and well-being of persons with disabilities in all spheres of society. To increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.
So in line with this...
My name is Rachel and I am disabled...
This for me is hard to admit because I like to think I am healthy and put my head in the sand quite a bit. However, the fact is I am disabled but today I do not let it hold me back! Instead, I see my disability as an 'ability' my 2 stoma bags have given me my life back, amazing friends for life, a kind loving man and a community I feel I belong in! My disability has given me far more than I could have ever imagined and although some days can be tough I still have found a sense of acceptance and peace with myself that I would never have found without my illness!
Get Informed and Get Involved!!!
So let's celebrate this day TOGETHER and if you feel happy to share I would love to hear your STORY!!
Many of you reading this post have spent a fair amount of time in hospital. It’s pretty hard not too when you have an ostomy, and everything that can come with that!
Since my urostomy surgery in 2015 when I officially became a ‘double bagger’ I have spent a lot of time in hospital due to complications with my ileostomy prolapse, numerous refashion surgeries, kidney infections and recurrent unknown sepsis. Last year I clocked up a total of 7 months as an inpatient in Bournemouth Hospital mainly on ward 15 and 16 the colorectal and urology surgical wards, which were fantastic and like my second home. This year I have only been admitted 6 times which is a miracle in itself compared to last year.
Being a regular inpatient we have a very unique position where we see and observe what goes on! Witness changes on the ward that work well and some that don’t. During our many admissions we build a rapport with staff from cleaners to doctors and nurses to porters.
When most people praise a recent hospital admission they will regularly quote how amazing the Doctors and Nurses have been but what about the other staff??
I cannot deny the Doctors and Nurses in Bournemouth hospital especially on ward 15 and 16 have been amazing and have kept me alive on numerous occasions. However I would say from my own experience where I received my emotional support that helped me through the long bouts of admissions were the other members of staff! They reached me on a different level. The kindness they showed me spending a bit of time chatting and the relationships I built mainly lie with these sets of people: (I have had permission to post all these pictures last year)
- The cleaners on the ward
Every morning this lady would chat to me ask me how I was, sometimes help me tidy up my area. When I was in isolation and was unable to leave the room, this lady asked me what I needed and went and acquired certain items for me. The cleaners become a regular in your hospital ward life and the brief chat and acknowledgment everyday means the world and helps you realise that you are still a ‘person’ and not alone.
- Health care assistants (HCAs)
I have noticed over the years I spend most of my time with HCAs and they have taken over a lot of jobs nurses used to do, because of the paperwork and time restraints. Seeing them regularly during observations or helping you wash builds up a level of trust. They give you the time and sometimes that kindness allows you to be open enough to get vulnerable and emotional. Don’t get me wrong nurses also do the same but sometimes they do not have enough time and other patients may need their help more, so I tend to open up more to other staff.
Porters are another department that really do keep the hospital ticking over! After many investigations I have met a few of these guys and they are fantastic, have a laugh and again go above and beyond their normal duties. Last year they filmed a video titled ‘porters’ which is very moving and encapsulates what the porters in Bournemouth hospital are like. Their sheer honesty is heart felt and the video is definitely worth a watch....www.youtube.com/watch?v=wOT4EjbOdKo
- Ward Host and Hostess
An important role where they hand out all the food, cups of teas and help patients order their food. These two have a very special place in my heart and have kept me going at times when I wanted to give up. The banter between these two is breathtaking and with their humour and caring nature touch every single patient who has been admitted on these wards. Their job is far more than just giving out the food and making cups of tea. The small kind gestures like remembering how I take my tea, offering me a biscuit and generally asking how I was. Again a regular face you see multiple times a day that is very comforting. In particular I need to mention how much this man helped me during my 3 months admission stuck in an isolation room when I contracted C.Diff after surgery. He made a laugh out of the smell and had me in bits laughing. That man helped me more than he will ever realise not so much physically but mentally and allowed me to find the fight in myself to keep going.
If you haven’t read it already So Bad Ass blogger, writer, health activist and public speaker wrote a brilliant post called Dear Tea Lady where Sam writes a letter thanking the Tea lady in Northern General Hospital for making her feel better every single day by just a smile and remembering how she likes her tea.
- Clinical site
Now lucky for me (not them) I got to see this team usually at night out of hours due to my bad veins and cannula always tissued. They were so supportive in the dead of night and many times fought my corner to get a PICC line insertion after failed attempts of putting a cannula in. This lady used to make my day when I saw her and we used to have banter about the dread the team felt when they saw my name on the job list because my veins are that bad. When I have my PICC line I miss seeing these guys. I would just like to point out how much it means to me when a member of staff remembers my name and says “Rachel your not back again” The fact they have remembered your name means so much and makes admissions easier.
Most mornings the phlebotomists will take blood. They are usually super quick and you may only see them for a few minutes but seeing these guys nearly everyday again you build up a relationship. One lady in particular who works on the weekends, always goes above and beyond for me, this lady showed me love, compassion and always gave me a hug if I was struggling. That connection or a hand touching your hand when you feel broken is better than any words
- Bournemouth Hospital volunteers with the newspaper and food trolley
Again a regular during the week going around the wards asking patients if they need anything from the trolley. For some patients the newspaper allows them to have a bit of normality into their routine and this can really help patients state of mind.
I believe that these members of staff are the backbone of the NHS. They not only keep the hospitals ticking over with not much recognition. It is these people I tended to turn to when I was upset and emotional, they went above and beyond their roles and were there for me. Sometimes the doctors and nurses do not have enough time to deal with your emotional needs due to being extremely busy but I noticed that these members of staff come through, not just for me but I witnessed with other patients on the ward as well.
I got to witness firsthand how humour in hospital is extremely important. It helps you get through the dark lonely times and can be quite healing. Having a laugh and some banter is a medicine in itself which can help a patient still feel like a human being and reach that fight within themselves that can sometimes leave after a long admission. The staff are also very good at judging when it is appropriate to have a joke and when it is not but this allows some normality to your otherwise very ‘clinical’ and regimental day.
So from the bottom of my heart to all the departments mentioned I thank you for always being there for the odd chat, beaming smile, recognition, asking how I am and allowing me to laugh! You ARE the BACKBONE of the NHS and I am eternally grateful for every single one of you x
Here is a post written by a gentleman with a urostomy for the gentlemen with urostomies about impotency and how you can work around this. Thank you, Trevor Harvey, for your honest and raw account on a subject I would not do it justice
Welcome to my 7th episode of the #UnderstandingUrostomies series all about urostomy and using a Night drainage system.
I have noticed that not everybody with a urostomy will use a night drainage system at night. In this post, I will explain a bit more about the different types of night drainage systems available and cover some hints and tips.
So for the last 5 weeks every Friday I have been doing the #UnderstandingUrostomies series and I have really enjoyed it. It is lovely having the positive feedback and seeing how many people the series is helping.
If you have seen from my Facebook Blog Page I have been in hospital this week due to a stubborn kidney infection and I haven’t had chance to put anything together in detail so I have decided for today’s post to write about my fantastic weekend at the Urostomy Association (UA) event 3 weeks ago on the 9th and 10th September in Staverton Park Hotel Northampton.
With any type of stoma whether it is a Urostomy, Ileostomy or Colostomy...odour is one of the top complaints for an ostomate.
As part of the series #UnderstandingUrostomies, I have decided to focus on ‘Urostomy and Odour’
Wow, this is the 4th segment of the #UnderstandingUrostomy series every Friday and they have seemed to be quite a hit!
So this post is all about Purple Bag Syndrome......