Welcome to the Online Diary of an Ostomate
August 5, 2016
Wow, I cannot believe it has been an incredible 5 months since my last diary entry where I was updating you all on being 25 weeks pregnant!
After an immensely [physically] challenging pregnancy in the mid to latter stages, I was admitted into hospital late April, after a routine growth scan, as bump’s growth had worrying halted. With plenty of rest and more medication, we made it to 35 weeks and Louis John Clements was born on the 4th of May 2016 at 10:10am weighing a respectable 4lb 2oz……and is now the butt of anything and everything related to Star Wars.
He was born via a planned caesarean section, like my 9-year-old, however second time round was pretty horrific. Apart from the previous c-section, I’ve been pretty fortunate to get away with only key-hole surgery for my stoma formation and other resections. However, there were so many adhesions, and lots of scarring, I didn’t think they were ever going to get him out; the tugging and pulling of my insides was horrendous! Needless to say, in my lifetime having had 3 thoracic surgeries, 2 pleuradesis’, 1”-thick chest drains inserted while awake, 1/3 small bowel removal, stoma formation, stoma re-fashion & previous section, I will NEVER be putting my battered body through it again, much to her relief!
Due to Louis being 5 weeks premature and having a low birth-weight, it was pre-planned that he’d need to spend some time in NICU, particularly with his on-going kidney/abdominal issues.
He spent a total of 12 days in there, but at the time the days felt like months and I was an emotional mess not being able to have my baby next to me.
I was left on an open ward with 3 other women whom all had their babies with them and it was absolutely torturous! So, I would go up and spend all my time next to him in NICU, but it wore me out recovering and being poorly myself, pushing myself to the limit to ensure my milk came in and then ended up needing 2 units of blood.
Luckily, apart from Louis’ inability to feed, he thrived daily and was eventually able to come home with his NG feeding tube at 2 weeks old. It was incredibly daunting taking such a tiny ickle bundle home as he only weighed 3lb 14oz after dropping from his birth weight.
In order for him to have been allowed home we had to be on a strict schedule to ensure he gained weight and at a reasonable pace and not go back the other way. Rather gruelingly, I had to pump like a jersey cow every 3 hours to cover his high-volume, 3 hourly tube feeds.
We soon got our own little routine going, although it was challenging being so sleep-deprived, coping with the breathlessness of my lung disease as well as maintaining a good diet and taking care of a problematic stoma that had burnt so much of my skin off I winced every night. I couldn’t fault Louis’ care, it was amazing; the community NICU team came to see him 2-3 times a week to check his progress and for tube changes.
Through the weeks, when he had enough energy we worked on teaching him how to feed for himself and eventually at 5 weeks he had become fully self-sustainable and was able to gain weight without the tube.
Louis is now 12 weeks old and we’re still on a bit of a rollercoaster ride with him because of his kidney/abdominal issues that are causing him discomfort, as well as possible neutropenia. And, to add insult to inury, on 22nd June we took Louis for his GP check and he had developed a huge inguinal hernia – where the bowel drops into the testicular sack through the ‘tube’ where the testes drop – which isn’t uncommon in preemie babies.
So, on the 27th June he had surgery for it to be repaired, but when they got inside they discovered his appendix had been pulled through along with is bowel; no wonder the poor little mite was so uncomfortable. *Touch wood* the repair was successful and all has healed well.
Despite all he’s been though, and continues to go through, he is such a beautiful, happy little soul and I couldn’t imagine my life without him. I still stare at him in awe that he’s actually mine after a clinical diagnoses of infertility 6 years ago meant I’d never be able to have another baby; he really is living proof that miracles DO happen!
On paper my life sounds pretty tragic: Interstitial Lung Disease with only 24% remaining lung function, HPA-Axis failure, the bones of a 90 year old through medication, battling crippling crohns disease and coping with a stoma, but my body never ceases to amaze me.
My life might be limited, but I’ll never limit what I achieve in life!
Facebook: Rachel Clements
February 26, 2016
Bump, bag and I have successfully made it passed the 24 week ‘1st viability’ milestone, at 25+3 today. However, over the past few weeks since my last diary entry, we’ve had a few ups and downs…
The pregnancy had been going beautifully; we were scheduled for Baby C’s routine 20 week anomaly scan on the 21st of January and were so excited to see how much our little bubba had grown.
I was astonished at just how in-depth the ultrasound was with the detailing it was able to pick-up despite bubba only being roughly 6.5 inches at the time. From the structures of his/her brain, to the layers of the spine, to the emptying of the bladder, and the development of the tiny feet…everything was perfect. Finally, the remaining organs that needed to be checked-over were the kidneys; the right one was visible almost immediately, but after 20 minutes of searching, it appeared there was no left kidney and a large fluid/cystic mass was located next to the bladder.
The songrapher wasnt able to go in to much detail with us and so we were referred to Fetal medicine to meet, and be scanned by, a fetal consulant. We were booked in for the following Wednesday and it felt like it was going to be the longest 6 days of our lives.
When we got home and the revelation sunk in, we decided to do a bit of research about it and what it could possibly mean for the future of our baby. We were surprised, and somewhat relieved, to discover that its actually not an uncommon problem and that it can have very little compromise on the quality of life.
I’m a part of a pregnancy support group with other expectant mums due around the same time as myself and there are quite a few of us who are all carrying babies with missing kidneys. Many other members have also shared their stories/experiences of people they have known to live successfully normal lives with only 1 kidney. With detailed ultrasounds only really being available in the last 25 years, it is believed that there are several people 30+ years living life oblivious that they only have 1 kidney! In most cases it is believed the main cause is genetics; due to various MRI’s, CT’s and US’s over the years I know I have both of my kidneys present.
My husband (Richard, 42) has never had any kind of hospital scan or treatment, nor was his mother scanned when she was carrying him, so for all we know he may only have a single kidney. However, we had completely forgotten about Richards sister (44); when she was pregnant with her youngest in her 30’s, she struggled with recurrent UTI’s and so was referred for an ultrasound of her urinary tract where they discovered she had a good, large functioning right kidney, but a shriveled-up, non-functioning left kidney.
Wednesday eventually arrived and the findings, or lack of, were confirmed. The consultant shared a positive outlook with us regarding the remaining kidney, but with it still being early days he requested that I be scanned every 4 weeks to keep an eye on the situation. Our next appointment was booked for Wednesday just gone, but frustratingly it was cancelled at the last moment and so has now been re-scheduled for this Wednesday the 2nd. We have also been referred to a Pediatric Urology Surgeon concerning the cystic mass located next to the bladder as there is a possibility surgery will be required after the birth.
Aside from the kidney issue, he/she is continuing to thrive in my womb and I am feeling/seeing lots of regular movement now. I have only gained 3lb’s in weight since conception, which I’m a bit disheartened with, but my blood levels are good and Baby C is on the correct growth centile. Since I have been back on daily 10mg of Prednisolne for 7 weeks, my lungs seem to be coping OK with only some minor extra breathlessness.
My ileostomy on the other hand is being one big, fat, pain in the ass! It still protrudes nicely with no real blockage issues, yet I am finding myself having to change my bag 2-3 times a day where I would usually get 48 hours wear-time.
I’m measuring my ileostomy on a weekly basis and cutting correctly to accommodate the bump expansion, so I can’t fathom why I’m suffering with so many leaks. And then there’s the dreaded night-time leaks! Last night I was eventually dozing off at 1am when I discovered the bag I had on had a split at the top where the front and back plastics meet – I’m putting that down to a manufacturing malfunction, though. However, I awoke this morning to a full-on leak from the flange where the bag wasn’t even half-full – no explanation whatsoever! I’ve lost count how many leaks I have had over the last 4 weeks, prior to that, in the whole 2 years I have had my stoma, I had only ever had a handful of leaks during the day and only 3 leaks at night, but with each one I could pin-point a cause.
It’s a good job I can still laugh about it else I’d only cry, and I like that it doesn’t knock my confidence anymore like it used to, you just have to get on with it and remember that once upon a time life was a hell of a lot worse than clearing up a bit of poo. Without my ilesotomy I wouldn’t even be here, let alone blessed with a baby on the way. Hopefully it will all calm down again after the birth – only 10 weeks and 4 days to go! I’m sure it’s going to fly-by with the amount of hospital appointments I’ve got lined-up until my c-section date and with my sister due with my new baby niece in the next 4-6 weeks! I also have a sneaky trip to Coloplast lined-up with Ostobear Billy next week which I can’t wait for.
Send Rachel an email
January 5, 2016
Happy New Year Ostomates!
I can’t believe it has been almost 3 months since my last blog entry which I posted the day before I was due to set off on my first holiday abroad as an ostomate. It now seems just a distant memory but, we had the most amazing time and my ileostomy behaved beautifully.
If you haven’t yet found the confidence to holiday abroad with your stoma, here at Stomawise are currently have something in the pipe-line which we hope will enable ostomates to have supported holidays in Tenerife to start with, and make your holiday dreams become a reality – watch this space!
I have some very special, exciting news to share with you today which makes a nice change! If there is anything that a life with poor health has taught me it’s to “Always expect the unexpected” and NOT in a positive way either.
Until today that is……
6 years ago I was clinically diagnosed as infertile after a little while of trying for baby number 2 and several tests. In 2011 we were referred to a reproductive center and I began an oral form of therapy (Clomid) with hopes that it would trigger ovulation. It didn’t. So, the next & final port of call was IVF treatment.
I underwent a series of hormone injections which were used to release follicles which then mature into eggs for fertilisation. Sadly, in all 5 rounds/months of injections, no ovulation occurred and not one egg made an appearance – that was that.
As disheartening as it was at the time, we had our beautiful Chloe (then 3), whom was a blessing in herself, unlike so many others who heart breakingly never get that chance to be parents. In some ways I was relieved; it was becoming a bit of an obsession and emotionally draining but, at least we could say we had tried and could move on knowing that it would never be.
At the time, amongst all of this, I was rather poorly and underweight and not in a great place. Although the Crohns disease in my small bowel meant a third of it was removed in 2009, it had started to savage my face, mouth, colon, rectum and anus instead. Throw everything else into the mix; interstitial lung disease, 2 collapsed lungs, 4 thoracic surgeries, bowel surgery, medication, severe osteoporosis and a previous c-section to boot; it’s hardly surprising that my reproductive system gave up.
So, onwards and upwards it was and we never gave it a second thought. The 4 years that followed seemed to be a complete whirlwind; Chloe started school, we bought our first home, I got my first Bulldog, we finally tied the knot, Crohns got ugly, had a few stays in hospital, Crohns got uglier and so I made the best decision ever to have my Ileostomy formed. I started being able to enjoy life for the first time in a long time, I joined Stomawise which has really helped in rebuilding my confidence and I’ve made some amazing friends, got my second Bulldog, Chloe was blossoming at school.
I ended up back in hospital in April (2015) and nearly landed myself a bed in ICU with adrenal failure and sepsis, finally got a good medication balance and felt great, got broody for more Bulldog wrinklies, my Bulldog Betty gave me 7 beautiful wrinklies of her own, we kept 2 of said wrinklies, hubby bought me a beautiful new car and then we had our amazing holiday in October.
Despite the “nearly landing a bed in ICU” part earlier in the year, 2015 was an incredibly amazing year for us and we couldn’t have been any happier and content as a family. And then, on the 12th of October (the day after we flew home from Tenerife), I got the biggest shock of my life when I discovered, by some miracle, that I’m pregnant!
To say the discovery has left us completely and utterly gobsmacked would be an understatement; after all these years of nothing, minimal menstrual cycles, exceptionally shit health etc the reality of the news still really hasn’t really sunk-in yet.
Due to the high risks involved for both myself and baby, we decided to wait until now, the New Year, to tell friends and family to ensure we knew that baby is healthy and developing well.
The first couple of months have been rather tough dealing with mainly tiredness and chest infections but, *touch wood* I’m starting to feel a little more like my old-self once again.
Fingers and toes crossed my Ileostomy won’t be affected by the pregnancy; I can’t wait to share this new chapter with you all. If you have any positive, or negative, stories and/or experiences of pregnancy with an ostomy i’d love to hear from you.
October 1, 2015
I honestly thought that having another holiday abroad, after my ileostomy was formed in 2014 due to crohns disease and the rare diagnosis of Idiopathic Pulmonary Fibrosis in 2004, was a dream beyond the impossible. But, its a dream that with my sheer determination – and the help, and push, of a very dear friend – is about to become true.
Deciding, and planning, to go abroad on a family holiday can sometimes feel like a mammoth task as it is, let alone throwing a medical condition or 2 in to the mix! However, my whole ‘holiday planning’ experience has actually been a rather smooth one and the only stress I’ve suffered with was deciding which shoes I sadly had to leave behind to avoid being over my baggage allowance.
Some of you may be total ‘pro’s’ when it comes to flying and traveling abroad with your stoma, but for others it can seem a very daunting and an impossible prospect – like it did for myself. I have decided to share my experience so far to demonstrate that it is 110% doable!
Once you have bitten the bullet and made the decision that you would like to have a holiday abroad, make sure you pick a date fairly in advance to give yourself plenty of time to make the necessary preparations.
A letter explaining your condition can be sought from either your GP or Hospital Consultant if you would require special assistance through the Airport or while flying. All airlines have a legal duty to offer assistance to its passengers with impairments. For instance, because of my lung disease I only have a 25% working lung capacity remaining which requires me to need extra oxygen at altitude. I had to undergo a flight test in lung function which recreates the air density at altitude in the plane, I failed the first test as my blood gases dropped dangerously low rather quickly, but the second test I managed to pass using 2lpm of oxygen.
My Respiratory consultant had to fill out a fit-to-fly medical form to declare that I was well enough to fly using 2lpm of o2 for the flight duration. The airline I am flying with has provided us special seats with extra legroom, free of charge, although I have had to pay for the Oxygen cylinders as they wont allow me to use my POC (portable oxygen concentrator).
The airline have also provided me with a medical waiver letter which allows me to take medical equipment free of charge in the hold (16kg for my POC to use abroad) and also 4kg extra hand luggage for my Ostomy supplies and a change of clothes should the inevitable happen.
REMEMBER NO SCISSORS OR ADHESIVE REMOVER/BARRIER AEROSOLES ALLOWED IN HAND LUGGAGE, PRE-CUT YOUR POUCHES AND PUT ALL SCISSORS/AEROSOLES IN YOUR SUITCASE.
Arrange the appropriate travel insurance which will cover your pre-existing medical conditions, please be honest when it comes to giving medical history to insurance providers. Fish are fantastic for insuring those with medical conditions.
If traveling within the EU: 8 weeks before you are due to fly, make sure you have a European Health Insurance Card (EHIC) and that its in date.
When your holiday date starts to near, roughly 3 weeks before, start to organize and order your ostomy supplies. I recommend taking 3 x the amount you would usually use at home and consider ordering ‘mini’ bags for use round the pool or on the beach.
Just in case the worst should happen and one of your suitcases goes missing, divide all your supplies between the suitcases in your family and take some in your extra hand-luggage allowance.
If you are on any medication get your prescription in to your pharmacy to ensure you have enough supplies for the duration of your holiday.
Fittleworth offer a service called “World Assist Alliance” to their customers for the emergency supply of ostomy products while you are outside of the UK.
This service is available if you have had your Prescription fulfilled by Fittleworth for at least 3 months prior to your travel. By special agreement between Fittleworth and Stomawise, you can email firstname.lastname@example.org for a code and then contact Fittleworth on 0800 378 846 with the code. You will then only need to have placed one order prior to your journey, to be covered by World Assist Alliance.
Some other helpful tips I have discovered:
Pack some ‘Mum’ roll on deodorant.
If you put some on around your stoma/tummy when you change your bag allowing it to dry, then apply a skin barrier on top before applying your bag – A very effective way to stop your pouch sweating off!
I’ve got my Comfizz Support Wear waistbands packed to keep my bag smooth under slinky dresses and swimsuits. It’s also made from breathable fabric and a great way to keep everything in place with the heat.
When at your holiday destination store your Ostomy supplies in the room safe to keep them cool out of the sun, and safe.
And lastly, RELAX & ENJOY!
Our flight to Tenerife departs in approximately 9 hours, I am super, super excited and admittedly a little nervous, but the airline have been amazing so far, so I’m confident all the special assistance will be in place, ready and waiting.
It is also our 8 year-old daughter’s first time flying abroad, she is bursting with excitement and I cant wait to see her little face light up with joy.
I will also be blogging about my holiday experience as an Ostomate, when I return. Hopefully with some very positive feedback and advice!
September 17, 2015
Who says continence underwear has to be uncomfortable or unattractive?
Enso provides a fresh new take on continence wear with garments that look like everyday stylish underwear, have a long life, are excellent value and incorporate a host of unique a innovative features. It is a revolutionary range of luxury fixation underwear! Designed to be used in conjunction with a separate disposable pad, Enso offers exceptional levels of comfort alongside technical innovations and fashionable design.
The Enso fixation underwear is virtually seamless, constructed from unique ThermoCool breathable fabric and free from irritating labels for ultimate comfort. The shape and design of the crotch area within the garment has been specifically created to securely hold continence pads close to the body to prevent leaks, reduce pad noises, minimise pad ‘bulge’ and lock in odours.
The use of exceptionally high quality fabric ensures that the garments are extremely resilient to repeated wash cycles (12 month + life span) and have a fast air-drying time after washing.
The potentially visible waistband is free from any branding to add to its discreet fashionable design.
I’m sure some of you are probably a little bit sceptical as to how Enso continence wear could have a positive impact on your life, particularly if you’ve had any past urinary or faecal incontinence corrected through either a urostomy, ileostomy or colostomy formation.
I have had an end Ileostomy due to crohns disease since February 2014. I still have my heavily diseased defunctioned colon, rectum and anus in situ until I’m well enough to endure such a mighty operation.
If you are in a similar situation you’ll understand what I mean when I say BUM SLUDGE, BLOOD & MUCUS! There’s no stopping it until a ‘Barbie Butt’ is on the horizon, so all we can do is embrace it and carry on as comfortably and protected as possible.
Personally I find it is at its heaviest during the night and in stressful situations; I always wear an Always Maxi Night-time pad as opposed to a urinary continence pad. However, wearing one on a daily basis with a standard shaped pair of knickers isn’t particularly comfortable and tends to bulge up and in-turn encouraged a lot of unwelcome Candida.
So, you could imagine my delight when I discovered Enso Continence Apparel earlier this month. Naturally I was a little dubious as to whether or not they really were any better than a standard pair of ladies boxer-knickers, so I just ordered the 1, a coral pink pair, to try them out.
Needless to say I now own 4 pairs with another 3 on the way, so I can wear them on a daily basis. They are unbelievably comfortable and light-weight, they keep everything (pads) in its place, no more digging in to my hips during the night, a practically invisible VPL, and most importantly of all, they look great! – even earning a compliment from the hubby!
At present, the only design available is the boxer-short at £16.74 + (p+p) in Coral Pink, Lemon Yellow or Arctic White for women, and Slate Grey, Cobalt Blue and Arctic White for men.
If you would like to know more about Enso or how you can place an order, please contact me at email@example.com
August 27, 2015
It’s that time of the year once again and after the huge success of the Stomawise 2015 Calendar, we’re now making a start on ‘project calendar 2016!’
Last year we received an awe-inspiring amount of photographs from Ostomates all over the world, aged 1 to 91; the spectrum covered all walks of life and behind every stoma lied a poignant tale. To us, the Stomawise Calendar is so much more than just a calendar of scantily-clad folk with their pouches on show.
To us, its an empowerment that tells the world we are not ashamed to have our stoma’s and battle scars.
We are not embarrassed by our ostomies or the journey that led us to where we are today. We are normal, beautiful human-beings and its liberating to be proud of who you are as a person. Every entry we receive is raising awareness while holding a great, big middle-finger up to the stigma and taboo that surrounds having a stoma.
For your chance to be entered to feature in next years Stomawise calendar all you have to do is submit a photo of yourself with either your pouch or stoma on display, to firstname.lastname@example.org before October 31st 2015.
For a little inspiration, your entry could be a Summer ‘Selfie’ on the beach, standing by a famous landmark on holiday, playing your favourite sport, doing a spot of gardening, or simply chilling-out in the comfort of your own home. Its entirely up to you! Every entry that is received will be displayed in a collage on the front of the calendar.
The winners that will represent each month of the year in the calendar will this year be chosen by those in the ConvaTec head-office.
All proceeds from the sale of the calendars will be donated to the OstoBear & Caravan funds to provide children that are facing surgery and life with a stoma, an educational bear with its very own patented stoma to support and comfort them through their journey, And for the latter the possibility of a free weeks recuperation after surgery away from home.
Keep an eye on our Stomawise Facebook page for all entries, winner announcements and details of how to purchase the 2016 Calendar. And, don’t forget to check out and like the OstoBears Facebook page, too!
Photographic conditions: As the pictures are to be reproduced through a printing process the images must be of good quality and of high resolution so if your using a phone to take your pictures put it on the highest quality.
April 28, 2015
Good Afternoon OstoGuys’n’Girls…
…And what a glorious afternoon it is here in Cambridgeshire! The skies are blue, the sun is shining and the birds are singing their sweet song; I think its safe to say Spring is now officially upon us. Isn’t it lovely how the weather can hold such influence over our mood and how we feel within ourselves? Today, despite the events of last week, mentally I’m feeling pretty damn good even if I am struggling physically.
So, last week someone was most definitely looking down on me when I attended hospital for a routine outpatient appointment with my respiratory consultant. Last Monday (20th) I awoke from my slumber relatively early as my appointment was at 10am and it takes me a good 1 hour and 20 minutes to get to hospital from home. I felt nothing more than a little tired, bleary-eyed and a bit stiff from spending the entire Sunday painting the garden fences. Off I drove with a few yawns, parked up and headed to Starbucks to get the energy boost I needed. I took a slow walk through the hospital as my lungs are only capable of so much, supping my coffee as I dawdled. I signed in at clinic, was weighed and took a pew hoping the coffee would soon kick in. I was called in to Lung Function as I had a couple of tests to do which is standard when in the respiratory clinic; I absolutely HATE doing them as its extremely tiring and hard-work. I forced myself through those and then I had the 6 minute walk to do where I am connected to a ‘sats’ monitor and the BPM and O2 levels are recorded as I walk. I pushed myself hard, but only made it to the 4 minute mark as the severe breathlessness set in…..plus at the time, we thought the monitor had broken as it wouldn’t give any continuous readings, so I thought stuff this, I feel too shit to be killing myself for this.
I composed myself and went back in to the clinic to wait to be seen by my consultant. It was absolutely heaving; from previous appointments I knew it’d be roughly an hours wait. Within 5 minutes I started to feel really odd, something didn’t feel quite right; clinic has the climate of the tropics, but I started to shiver uncontrollably as if I was sat in the arctic circle naked. I came over feeling very sick and thirsty so, I explained to the nurse in clinic that I wouldn’t be able to have an x-ray as I didn’t have the energy to walk to radiography and that I desperately needed some water and a sick-bowl. She could tell I wasn’t right as she has known me since I was first diagnosed with lung disease at 15; by now my hands had gone bright blue, my heart rate was going like the clappers and I couldn’t get control of my breathing. From this point onwards I just seemed to go downhill so quickly, any energy remaining just drained out of my body and I just slumped. The nurse put me in to a wheelchair and then Richard (my husband) arrived – I had text him a little while ago asking him to come from work as I physically wouldn’t be able to make it back to my car because I had contemplated leaving clinic and just driving home to bed. Of course that was a stupid idea and I hate to think what would have happened if I had left quietly. My consultant was informed I wasn’t well and so urgently came out to see me, he took one look at me and said “We need to get you in, this isn’t right”. They did further ‘obs’ on me and my oxygen level had dropped to 86%, but more worrying was my temp at nearly 40 degrees C and heart rate at 160bpm! An ECG was performed there and then and I was then taken round to A&E; I was examined further and taken round to ‘resus’ where the shit really hit the fan. I was stripped in an attempt to cool me down – even though I felt flippin’ freezing – hooked-up to wires here there and everywhere, stabbed poked and prodded and had IV’s going in at an alarming rate. The blood test results soon came back and It became evident that I had a serious infection on board which was a bad case of sepsis. But, it also came to light that I was having an Adrenal Crisis because, after years of prednisolone, I no longer produce any (cortisol) hormones from my adrenal glands. This was basically my body crashing, struggling under the strain which in turn had heightened the infection. After an hour of IV fluids, steroids and antibiotics my body still hadn’t calmed and so I had a visit from the Intensive care unit team who explained that I may need to be sedated/ventilated if my lungs and heart wouldn’t stabilize. It was agreed that they would visit every couple of hours to assess the situation so no risks were taken. However, a little while later my body finally started to get things under control and later that afternoon I was sent to one of my second homes – the Respiratory ward.
Thankfully, I continued to respond well to treatment and was discharged Thursday evening with oral antibiotics to clear things up. With the adrenal insufficiency – another ailment to add to the list – I am now on life-long Hydrocortisone tablets 3 times a day and I have to carry and stock Solu-Cortef injections with me at all times in case of future crisis. I think it’s time for a bit of retail therapy to invest in a larger handbag to carry all my emergency ostomy supplies, injections, medications and oxygen in! I have to say I am feeling much more stable now I’m receiving the hormones my body has been desperately lacking. Looking back now I am so lucky that I was in the best place possible, it doesn’t bare thinking about had I have been anywhere else at that moment in time.
Have you experienced an Adrenal Crisis, or something similar you’d like to share? Contact me at email@example.com I’d love to hear your story!
March 20, 2015
Woohoo, the weekend is officially here OstoGuys’n’Girls…
…and this weekend Billy and I are getting funky with our Penguin Pouch Covers from the Stomawise store!
Those of you that know me, know that you’d be hard-pressed to discover someone with more confidence and love for their stoma, like I have for mine. I couldn’t give a hoot who lays their eyes on my little red friend in his ‘sleeping-bag’, who hears it rustling under my clothes while I get organised, who gets a whiff of it’s output after a toilet pebble-dashing session…you get the idea…so don’t think for one minute that I’m using my pouch covers because I’m ashamed or embarrassed of my bag, you couldn’t be further from the truth.
Today we are utterly spoilt for choice when it comes to choosing the right ostomy bag with so many brands and styles available on the market. Sadly, the same cant be said for the none-existent array of colours and so all that we are left with is 50 Shades of Nude. Nude is fine and it serves us well, but sometimes it’s nice to express ourselves with something that has a bit of pizazz. Cue Penguin Pouch Covers! With various patterns, colours and styles available for not only men and women, boys and girls, but for OstoBear’s too! – There is a Penguin Pouch Cover for every occasion.
It’s not all about looks and self-expression, many people choose to use pouch covers for all manner of reasons; intimacy, privacy, sunbathing, sport, showering…the list is endless and Penguin Pouches cater for all events. Personally, I like to wear mine throughout the summer and during the night as I find myself becoming rather hot and sweaty; the cotton pouch is cool and refreshing on my skin opposed to the sticky plastic of an ostomy bag. I also have a couple of mini pouch covers which I use for the more intimate moments to ensure my ostomy bag is kept discretely in its place.
All Penguin Pouch Covers are available in a selection of sizes tailored around the brand and size of ostomy bag that you use. Other ostomy bags can be catered for by contacting firstname.lastname@example.org for further information and a template code. These are a just few of my personal favourites, but you can check out the entire range in the Stomawise store by clicking here.
Enjoy getting colourful!
Rachel (& Billy) x
March 13, 2015
Comfizz Ostomy Support Wear Vs. Hernia
Did you know that when an ostomy is formed you are highly susceptible to abdominal and parastomal herniation? And were you also aware that you, as an Ostomate, are entitled to 6 pairs of support wear if you have a permanent Stoma and an NHS Medical Exemption Card?(England only)
Sadly, we are seeing more and more patients, new to the Ostomy world, being discharged from hospital with no to little awareness of the herniation risk.
When a stoma is formed the stomach muscle is cut to allow the bowel to be brought out to the surface of the skin and so it becomes a site of weakness.
The risk of developing a hernia after stoma formation rises to 30-50%, possibly even higher; it’s been noted that many hernias occur in the first few months after surgery.
A recent trial was held at King’s College Hospital in London to see if wearing Comfizz ostomy support wear prevented hernias occurring in Ostomates. Half of all patients that had undergone stoma formation were given Comfizz Ostomy Support wear to use for their first year with a stoma. The remaining half went about their usual daily routine without any support wear and then the figures were compared between the two groups.
The results were astounding; the clinical trial proved that using support wear really does make a huge difference and significantly reduces the chance of herniation. More details, results and in-depth information from the clinical trial can be seen upon request.
Using support wear not only has a positive impact on the patient, but on the NHS, too. Each year, its estimated that parastomal hernia repair surgery costs the NHS £171 million which is a massive amount considering the extremely poor success rate the procedure carries.
When I was given my ileostomy back in February 2014, my stoma nurse were excellent, however, the word ‘hernia’ was not mentioned to me once. I was left clueless, new to the world of Ostomy, hernia’s had never even crossed my mind and I had no idea it was even possible with a stoma.
When it came to discharge day, my surgeon half-heartedly touched on the subject, but to be honest it just went over my head. It was only once I was home and started interacting with other Ostomates online did I understand the true extent of how common and severe hernia’s really are.
Through my own research, I discovered the world of Comfizz Support Wear that is designed specifically to support the abdominal area and thus preventing hernia’s and protecting the stoma and pouch, too. Through the clinical study, Comfizz has proven that their support wear achieves great results in hernia prevention and so all levels and colours of Comfizz support wear are available on NHS prescription for both children and adults with permanent stomas (UK only, max 6 garments a year).
Here at Stomawise we are determined to raise awareness to all Ostomates, new and old, encourage Stoma nurses around the UK to discuss the risks of parastomal herniation with patients, and more importantly, provide each new Ostomate a Comfizz support garment upon discharge. We know that the prevention is better than the cure!
It’s important to understand that Ostomy Support Underwear and Ostomy Underwear are two very different things.
Ostomy Underwear alone will not offer protection like Support Underwear does. To those of you that don’t already wear Comfizz support garments, I bet your thinking “But wont the pressure cause me to have a leak“? Good question! Even I at first was apprehensive about using support wear for the very same reason and because many support wear garments have that ‘medical’ look about them and being a 26 year-old female, it really didn’t entice me to use/try support wear. That was, of course, until I discovered Comfizz and their trendy, colourful and comfortable range of support wear that is anything but ‘medical’ looking.
Here at Stomawise we have been trained by Comfizz and are certified to sell, advise, prescribe and distribute Comfizz Support Wear to all Ostomates.
We also offer this service to those of you located outside of the UK and are authorized to sell Comfizz Support Wear where you aren’t entited to support wear on prescription.
Below is a more in-depth description of the Comfizz products available. If you would like to place an order, have any queries answered or would simply like advice on support wear and hernia prevention please contact email@example.com to arrange a call-back.
Comfizz Support Wear is available at 3 Levels:
Level 1: Light support wear available in the form of vests, high waist briefs, standard waist briefs, unisex boxers in high and standard waists, unisex 10″ and 7″ waistbands for women.
And for Men we have support vests, high and standard waist unisex boxers and the 10″ and 7″ unisex waistbands. N.B Various sizes and colours between garments.
Level 2: Medium Support Wear comes in briefs for the women and unisex boxers for both men and women. Sizes available are S/M, M/L, L/XL, XL/2XL and 2XL/3XL.
Level 3: Firm Support Wear in the form of a girdle belt. If light or medium support are not sufficient for your needs then this firm level 3 belt should fit the bill. With built in stabilising ribs to prevent wrinkling you will experience consistent firm support, ideal for managing a hernia, during strenuous exercise or heavy lifting. Openings in stoma support wear are not a good idea as this wold replicate the weakness around the stoma here a hernia will often push through. However, in the Comfizz level 3 belt which could restrict the stoma without an opening, we have overcome this problem with an integral prolapse cover. Once the belt is in place with the pouch pulled through, the stretchy prolapse cover can then be pulled across to reinstate support over the stoma to a comfortable level. The belt height is 15cm with 60mm, 72mm or 85mm pouch aperture holes and in 6 lengths (M,L,XL,2XL,3XL,4XL). N.B: The belt is available in neutral colour only.
Juniors: A range of Level 1 Support Wear for children. Briefs in white, pink and black for the girls and boxers in white, black and blue for the boys. A girls vests in pink and white, and a boys vests in white and blue. A junior unisex waistband is available in white, black and neutral in sizes XS,S,M,L.
February 10, 2015
What an incredible weekend for Stomawise…
Hi Osto-Guys ‘n’ Girls, I hope you are all well and that you had an enjoyable weekend?!
After weeks of fundraising and nail-biting-nerves, this weekend I finally took to the ‘skies’ of AirKix Manchester in aid of Stomawise, the OstoBears & the Caravan Appeal. Several people turned out bright and early on Saturday morning to support the event; with myself, my daughter Chloe, OstoBear Billy and 8 others donning the AirKix attire to take part in the Sky-Dive. Once we were geared-up I initially started to panic as we queued to begin, but I was up first and once I was in all those nerves soon turned to excitement and thrill as the adrenaline started pumping. Overall, we had 3 flights each and it was just totally awesome it took my breath away and I didn’t give my stoma a second thought! Never in my craziest of dreams would I have imagined myself being able to take part in this with all my health problems, it just goes to show that the only disability in life is a bad attitude and I refuse to let my poor health get the better of me. I was so proud of Chloe (8), too; she really wasn’t sure about it all but, she was pleased with herself for completing it for the OstoBears.
At present we don’t yet have a total figure of how much was raised as we still have donations trickling in (its not too late to donate!), but watch this space as the final amount will be announced in the next few days. I just want to take this opportunity to say a massive THANK-YOU to not only those who took part, but all those who donated to those flying and those that turned up to support us on the day. Because of your generosity we will be able to send lots more OstoBears to children around the world going through Ostomy surgery and facing life with a stoma. It also means that we are a few more steps closer to reaching our ‘Caravan Appeal’ target and obtaining our first static caravan for Ostomates.
Overall, I think it’s fair to say that all the sky-divers thoroughly enjoyed themselves and I couldn’t have thought of a better way to spend my 1st Stomaversary weekend.
We are already in talks for the next Airkix fundraiser in a few months time, so if you were unable to make the last event, fear not, there will be another opportunity to fly with Billy in a few months time! Rachel xxx firstname.lastname@example.org
If you would like to make a late donation for the event, you can do so by clicking here.
January 29, 2015
JustGiving for Airkix
Good Evening OstoBuddies,
I do hope that you are all well and that the cold weather isn’t being too harsh on your health and ailments. It would seem that almost everywhere in the UK has snow except us in Cambridgeshire! I’m most disappointed, as is my daughter, but the bright blue sky, sunshine and the singing birds almost make up for it. The sun has certainly been shining down on me this past year, even when the skies have been grey.
Soon I will be celebrating a particularly special anniversary, my 1st Stomaversary! It’s such a poignant time for me; it marks a day when a life of painful suffering and deep unhappiness ended and a bright, happy, new life of sunshine and rainbows began. Bizarrely, I was sorting out my wardrobe earlier in the week and came across an old handbag I had with me in hospital when my stoma was formed. I found the diary I had penned my stay in, along with some notes, hospital discharge letters and a half-eaten roll of sticky mints that were well past their best before date. It certainly brought the memories flooding back, not just the memories of hospital, but the sad and lonely memories of the existence I led before it. It’s hard to believe that this time last year I weighed a frail 5st 8lb’s with a bmi of 13.4. I would spend most of the day hunched-over on the toilet and the rest of it in bed, physically weak and exhausted. I only ever left the house when it was absolutely necessary and it was always planned well in advance; the bare minimal that I did eat I had to make sure I didn’t have for 18 hours before and I took my own’ toilet’ car pack as I called it. This consisted of a potty, toilet roll, wet wipes, news paper, blankets, water and disposable bags, and yes it was used on various occasions when I was in my car whenever that sudden urge hit me. And then we have the times that I was out walking, away from a toilet……you can probably guess what happened on those occassions, as well as the heartbreak at the total loss of all dignity that came with it. This is the very reason why I will be celebrating the day when my Ileostomy was formed and all that pain and heartache ceased.
This year has been absolutely fabulous; I have made some truly wonderful life-long friends, had my first weekend away on my own, been chosen to front the Stomawise awareness calendar in my bikini, and had some totally awesome days out without a care in the world. I can eat out, drink out, spontaneously jump in my car and the world is my osyter….the list is endless….these things seem like the norm for most, but were once the impossible for me – things I could only ever dream of doing. But, the cherry on the icing has to be the amazing opportunities that I’ve been given and that continue to come my way; this year is set to be even bigger and better and I cant wait to achieve some major goals and have a purpose in life. Not only do I want to celebrate this incredible year and my 1st Stomaversary, I want to give something back and so on the weekend of my Stomaversary I will be doing an indoor sky-dive at Aikix with my daughter Chloe (8) and OstoBear Billy. This, of course, will be in aid of Stomawise and the OstoBears which are both very close to my heart; putting a smile on a poorly childs face and offering invaluable support to parents at what feels like a very dark and lonely time in their lives makes such a difference. As an ostomate yourself, you know all too well how daunting it is and that no matter how positive and prepared you thought you were about it, it still takes time to adjust and take everything in, so you can only imagine how scary it is through the eyes of a child. Since the OstoBear charity was founded, hundreds of ‘Billy’s’ & ‘Bella’s’ have been donated to children across the UK – either pre or post ostomy surgery – which have had a huge (positive) impact on children’s fears, acceptance and understanding of their new ostomy.
The event is taking place on Saturday the 7th of February at Airkix in Manchester (nr. Trafford Centre) and all are welcome to come along to show their support and have the chance to meet the OstoBears. We (Stomawise) will also be having a table set-up at Airkix, too. If you would like to make a donation – no matter how big or small, every penny is apreciated – to sponsor myself, Chloe & Billy for the ‘dive’ you can do this through JustGiving by clicking here.
Myself, Chloe & Billy can’t wait and hope to see some of you there supporting us; for those of you that are unable to come and meet us, check out both the OstoBear’s and Stomawise’s facebook pages for photo’s and videos of the big event.
Rachel xxx email@example.com
January 26, 2015
Happy Monday Osto Guys ‘n’ Girls
So, how many of you have discovered the latest new ‘designer’ bag on the block from Coloplast?
Well, if you haven’t, fear not, I’m here to give you the lowdown on this latest state-of-the-art ostomy pouch – the Louis Vuitton of the stoma world.
The new Sensura Mio from Coloplast has really brought concept ostomy pouches into the here and now and is unlike any other appliance we’ve witnessed before.
Of course, what strikes you first is it’s unusual shade of grey opposed to the standard nude/opaque colouring that adorns every other ostomy pouch. Its manufactured with a soft, satin-like material that, dare I say, makes it look almost glamorous and fashionable.
The Sensura Mio range is no mutton dressed as lamb, it performs equally as good as it looks. It’s been innovatively designed using a flexible elasticated adhesive to provide a better fit for any body shape and size. The grey textile was specifically tested under a wide spectrum of various coloured clothing garments and it was discovered that it actually offers a higher level of discretion than tradition nude/skin colours. Other new features include a full-circle filter for proven reduction of ballooning which results in better air-flow. One thing I particularly like about this bag is that it has a small inspection window to keep an eye on stoma activity and aids correct positioning when applying a fresh pouch.
Coloplast have manufactured an extensive range of their new Sensura Mio, too; there are pouches available for those with an ileostomy, colostomy, urostomy with the option of either a 1-piece or 2-piece, either closed or drainable, and all available in grey textile or transparent.
On Satuday morning I received samples of the 1-piece drainable version and so after showering and giving my skin an a good clean, I decided to try them out to see how they performed. Touch-wood, I don’t have many issues with the current appliances I use thanks to a healthy, protruding (1′) ileostomy with a diameter of 20mm. The Sensura Mio was easy to apply and instantly attached itself to my skin and offered security as it surrounded my stoma nicely. The flange is so thin it feels like you are just wearing a second, super flexible, skin; it is super sticky, too and so offers high protection against leaks and puts your mind completely at ease.
When I try new ostomy products, naturally, Im always a little cautious, but I soon developed confidence in the Sensura Mio.
I kept this bag on for a total of 48 hours; it showed no signs of wear whatsoever and I simply changed it this morning as I started to feel a little unhygienic after 2 days wear.
In my personal opinion the pouch could have easily gone another 48 hours, if not more. The satin grey material still looked immaculate with no fraying or degradation at all unlike many other branded pouches that start looking shabby after 12 hours or so. The full-circle filter worked incredibly well during the first 18 hours expelling all air effectively and kept the pouch looking discreet despite consuming a couple of cans of fizzy that day. But, like all pouches, the real filter test is when it comes to bed time, and its to be expected that when lying down, output won’t always head to the bottom of the pouch. Of course, it depends on which position you sleep in; I tend to sleep on either my left or right side which usually ends up in a clogged filter from high ouput through the night.
However, on the first night of wearing the Sensura Mio, the filter stayed relatively clear and I awoke in the morning to very little air in the pouch.
Through Sunday the pouch continued to work its magic with no signs of wear, but Sunday night the filter had clogged and I had to do the crab-walk to the toilet this morning to empty a rather large poo-balloon. I cant really mark this as a negative point simply because the 1-piece bags are ultimately only supposed to be for 24-hour wear.
Overall, I genuinely love the Sensura Mio; the colour, touch, discretion, flange strength, ease of application, durability and all its quirky features – It most certainly will be replacing my current appliance without a shadow of a doubt. The only dowside is I only have 2 remaining sample pouches to last me until my next delivery in early February!.
The full range is now available on prescription, and Samples can be obtained via Coloplast’s website
Let me know what you think of the Coloplast’s new Sensura Mio pouches! Rachel xxx
If you have any questions about all things Ostomy you can email me at firstname.lastname@example.org
January 22, 2015
Sorry lads, but this one’s for the ladies tonight…
So ladies, how many of you have had major issues finding skinny jeans, or jeans in general, that will accommodate your stoma? Well, you are not alone. Since having my stoma formed in February (2014), finding a pair of good fitting, ostomy friendly jeans has been somewhat of a mission impossible. My legs resemble those of a 5″3 chicken, literally, which rise to some relatively wide ‘birthing’ hips…..so you can see my predicament here. And, if any of you little fashionista’s out there are anything like myself, then only skinny jeans will do. Well girls, I think I may have the answer to your prayers…
Recently I’ve been getting pretty down and feeling rubbish about my appearance. This has absolutely nothing to do with my stoma itself as such, I am still totally in love with him and the life he has blessed me with, but I still want to be able to wear what I want, when I want, and feel confident, happy and sexy in myself. I dont want to wear super-tight jeans where I’m constantly checking for leaks, being cautious when I sit down, getting upset about the ‘what-ifs’ because at the end of the day the smile on your face will always be your best and biggest feature. Well today I am a super-smiley Ostomate….
Now, personally I have never been a huge fan of Topshop, I’m more of a River Island kinda girl, but on my last shopping expedition I thought I’d give it a whirl. I have to say I was pleasantly surprised with their selection of jeans, so I flung a few pairs over my shoulder and headed for the changing rooms. I had finally found a perfect pair of jeans! I was able to get a slightly longer 32″ pair with a 28″ waist, and the best bit is that they are tight enough on my scrawny chicken legs, but accommodate my ‘bag’ with very little tightness. They are made from a lovely supersoft fabric with plenty of stretch in them; this particular style are called ‘Leigh’, retail at £38 and have a mid to high-rise waist band. Today I put them to the ultimate test and they passed with flying colours; I spent all morning at hospital, followed by lunch and then shopping, so my stoma was getting knocked around a fair bit. These photographs were taken at 3pm today with a full bag that hadn’t been emptied since 8am and the jeans still kept the ever-filling bag nicely enclosed.
I appreciate that this particular style of jeans wont be everyone’s cup of tea, but Topshop do have a massive variety of styles, shapes, colours and sizes in this super-soft stretchy fabric, so certainly worth checking them out. I just need to decide which colour I want to purchase next and think I may try a high-waisted pair, too…
If any of you have any questions or recommendations for Ostomy-friendly jeans I would love to hear from you, you can e-mail me at email@example.com Rachel xxx
January 9, 2015
I hope you have all had a fabulous time over the Christmas and New Year festivities and that your stomas behaved themselves, too. Everything got back to normal here on Tuesday; decorations put away for another year, hubby back at work and my daughter Chloe (8) went back to school. It’s always nice to move in to a fresh new year, particularly after an eventful 2014; I have a sneaky suspicion that 2015 is going to be an amazing year full of fantastic opportunities that I can’t wait to get stuck in to.
Also, this week I took delivery of my new black ‘Longline Hoodie’ from the Stomawise store and I have to say I am absolutely loving it! I’ve practically been living in it all week; the long length makes it ideal for us as Ostomates, especially if you like to wear your bag outside of your jeans/leggings/trousers, as it is long enough to conceal even the largest of pouches. I like this hoodie in particular because of the good quality material it is made from; it’s lovely and thick – which keeps me warm when I am outside in the cold – and it’s super soft and comfortable, too. It also features a hood, earphone loops and a kangaroo pouch with a feeder-hole so you can conceal your iPod, iPhone etc in the pocket, along with the earphone cord, whether you are using your device or not. The longline hoodies are unisex and come in 4 sizes; Small, Medium, Large & XLarge, along with a choice of 6 colours; Black, French Navy, Purple, Hot Pink, Grey & Sapphire Blue*. They are in stock now and you can check them out here: http://www.stomawise.co.uk/stomawise-store/longline-hoodies
Anyway, TGIF! It has felt like such a long week, time for a soothing soak in a hot bubbly bath! Here’s to a great weekend! Until next time OstoBuddies, Rachel xxx firstname.lastname@example.org
*Please note: The Stomawise logo is not available on the longline hoodies and is for advertising purposes only.
December 31, 2014
So, we’re just a few hours away from saying farewell to the emotional roller-coaster ride that was 2014.
It really has been a year of highs and lows and one that will stay with me forever as the most poignant year of my life.
This time last year, at the close of 2013, I sat scrolling through my facebook newsfeed. The green-eyed-monster was upon me once again; friends, family and acquaintances all beautifully glammed-up and out having fun celebrating the new year. They were making plans for exotic holidays, setting up achievable goals and making New Year Resolutions; while I was at home, once again, reflecting on how pitiful the year had been. Another year of suffering, another year of unhappiness, another year of degrading memories….another year gone forever. On went the television at 11:50pm, so we could watch the London NYE Display coverage Live on BBC; this had become our NYE tradition as I was never able to go out without having a toilet accident. It got to 11:59pm and -surprise surprise – the sudden surge of incontinent diarrhoea hit me. Off to the toilet I ran for the 782nd time that day; from the downstairs loo I could hear the chimes of Big Ben from the TV as the clock struck 12 and I laughed at myself because of how pitiful my life had become. In my frail, weak and emaciated state, I wandered back into the living room a few moments later; the fireworks [on TV] were still going-off in all their glory while members of the public were kissing, cuddling, wishing one another well and declaring New Year Resolutions. I so wished I could have been there and that I could make resolutions and plans like those on TV; it was at that very moment in time something hit me and I made a serious resolution to myself. My resolution was to change my life, to end the existence and to start living. To be a better Mother and Wife, and more importantly, to be the person I so desperately wanted to be.
First thing on New Years Day morning I called my IBD nurse and left a message stating that I couldn’t carry on existing this way and that I desperately needed to meet with my surgeon and GI. To my amazement, a couple of hours letter she returned my call and asked if I would like to attend an appointment on Friday the 3rd of January, which of course I accepted. A couple of months previous to this, I had been in hospital because of my Crohn’s disease and had discussed having an ileostomy formed with my surgeon. After exhausting all avenue’s, it was something I had already accepted, and even got excited about at the prospect of it happening. My surgeon felt it was the best thing for me and that it would massively improve the quality of my life, as did my respiratory consultant. Sadly, my GI had been away on holiday while I was an in-patient so, someone else was looking after me; this particular doctor (despite test results and all he had been told) decided that I needed to try Infliximab as a last resort – I felt so heartbroken.
The 3.1.14 arrived; I went into my appointment crying with exhaustion, sobbing while justifying the reasons to my surgeon and GI why I couldn’t carry on living this life. Within 5 minutes of entering the room, a date to have my ileostomy formed was made and my tears of sadness had turned to tears of joy and pure elation. They knew the time was right for me and that there was nothing any medication or treatment could have done. It was such a relief that they were on my side and understood how truly unbearable my life had been for so many years. And so, on the 5th of February 2014, my ileostomy was formed and my life changed forever!
I don’t think I will ever be able to top the success of last years resolution along with all of the ‘firsts’ it gave me the ability to achieve. So, my resolution for this year is to carry on living life in the best way possible; living without regret, laughing often, cherishing every moment, loving dearly, and to take advantage of every opportunity that comes my way.
Here’s to an amazing 2015, OstoBuddies! Rachel xxx
December 24, 2014
I do hope you are all set for the white-bearded, red-suited big-man to break into your houses tonight; hopefully you have all been good girls and boys this year!? I’m just wondering how on earth he is going to get the BMW 6-Series I’ve asked for, down the chimney. Failing that, I have already received the most amazing gift this year – my ileostomy back in February. This will be my very first Christmas with my trusty little side-kick and I can’t wait to make up for all the Christmases that I missed out on. Its going to be amazing just to see my little girl’s face, watching her un-wrap her presents without me being glued to the toilet. I’ve gone all-out this year; we’re dining out at a restaurant tomorrow to take the stress out of the day for everyone and I have a new sparkly dress to wear and fresh sparkly nails. My OstoBear Bella even has a beautiful Christmas-themed outfit to wear.
Anyway, I just wanted to take this opportunity, before the festivities begin, to wish you all a very Merry Christmas! Granted, life with a stoma isnt always plain-sailing and sadly our illness’ or ostomy related issues don’t call cease-fire for special occasions. To those of you going through troubled times, I hope you are able to enjoy the festive season and that it is as pain-free and leak-free as possible. Don’t forget that we are always here at Stomawise to discuss any Ostomy related issues and you can contact myself personally at email@example.com.
It’s my daughter Chloe’s bedtime now, so we are going to raid the cupboards to find Santa and the reindeer a midnight snack and beverages for when they stop-off later tonight.
Have a truly magical time! Rachel xxx
December 18, 2014
Evening OstoBuddies, or should that be good morning?
It’s currently 28 minutes past midnight and I’ve been in bed for almost 3 hours, yet I can’t get to sleep for love nor money.
This morning I awoke from a much-needed, restorative, 9-hour sleep, but it didn’t feel anywhere near lenghty enough. Unless under circumstances of extreme ill-health and exhaustion, I refuse to let myself nap or sleep during the day amid fears it will simply fuel those insomniatic flames at bedtime. Instead, I have spent the day moping around the house, eating everything in sight, and just generally being Queen Bitch to anyone that dared to cross my path. And today, my husband got a full dose of Queen Bitch. Those of you unfortunate enough to have been prescribed Presnisolone (and other corticosteroids), will no doubt, completely relate to the anguish it can inflict on both body and mind. Don’t get me wrong, it’s not all doom and gloom in those little 5mg tablets; the past 11 years that I’ve been taking them (on and off) they’ve got me through some pretty severe bouts of Ill health.
At the moment, I’m on a relatively low (10mg daily) “dampening” dose; despite having my end ileostomy formed in February (2014) I still have my anus, rectum and large bowel in-tact. Albeit, heavily disease with crohns. I was severely underweight at the time of going ‘under the knife’ and because of the lung disease I have, it wasn’t in my best interests to go through something so major. Anyway, back to the steroids; the reason Im still taking them long-term is because I also have severe oral-facial crohns. One half of my gastroenterology team believes it’s still occurring because of the active disease remaining at my bottom end. The other half aren’t so sure, and so the decision to have further surgery (anus, rectum and colon removal) is temporarily on hold. I have met with my surgeon recently and the colon coming out, sooner rather than later, is a dead cert; however, being relatively youthful, he has reservations about removing my anus and rectum unless he could guarantee that it would cure the oralfacial side of things.
Although at 10mg it’s only a mild dose, it reeks havoc when it comes to bedding down for the night. It’s a bit of a vicious circle; one night I’ll drop off within 10 minutes and get a straight 9 hours sleep which is just heaven, but the next 3 nights I just cant seem to drop-off until around 2am. Having only 4 hours sleep a night for 3 nights straight really takes its toll on me; insomnia is, without a doubt, in 1st place for the worst side effects of prednisolone. In 2nd place we have ‘mood swings’; the worlds either coming to an end and Queen Bitch making an appearance, or you’re as happy as a kid on Christmas morning – there is no ‘inbetween’. And inevitably, the complete lack of sleep heightens those emotions. 3rd place would be awarded to ‘Moon Face’ along with ‘Increased Appetite’ in 4th; thankfully the latter two have only made minimal appearances lately.
Despite these Prednisolone Blues, it’s still a better quality of life than living without them. Stupidly, earlier this year I decided to take a break from them and within a week my entire mouth and throat started to flare. I was in so much pain and discomfort that it hurt to talk, drinking water felt like I had a mouth full of glass shards. I struggled on for two weeks, the agony increasing as the days went on. I lost 8lb’s in a very short space of time, dropping back to 6st 12lb. I became extremely weak and dehydrated through lack of intake and so was admitted back to hospital on Easter Monday. A week of strong IV steroids and antibiotics, things rapidly improved and I was dischaged and have continued on oral prednisolone ever since. These photographs were taken earlier this year; you can clearly see the agonising, itchy inflammation on my face. The oral side of things don’t appear to be particularly problematic, but you can only really see the tip of the iceberg, so-to-speak, as the problem is deeper set in to the gums.
So, for now, I’m plodding along with the ups & downs, highs & lows, and countless sleepless nights. Maybe some of you are, or have been, in this situation that can offer me advice or suggestions to aid a better nights sleep. You can contact me anytime, night or day, via email at firstname.lastname@example.org – I would love to hear from you; in the meantime I’m off to count some sheep! Until Next time OstoBuddies….xxx
December 6, 2014
WOW! If someone had said to me that this time last year that I’d be sat here typing my very first blog for Stomawise, I would not have had the foggiest idea what they were talking about.
This time last year I had no idea that in 3 months time I would be having an ileostomy formed along with this amazing new life. I certainly had no idea that Stomawise, and all its invaluable support, even existed!
Some of you may recognise me, or already know me as the current ‘Miss Stomawise’. But, you can find out more about who I am, my ileostomy, and the journey that brought me to where I am today in My Story on the main Stomawise site.
I’m looking forward to ‘blogging’ several times each month, discussing anything and everything about my life living with a stoma. I will be covering all aspects such as diet, fashion, stoma products, trialling new pouches, holidaying, sport, unpleasant issues, useful hint & tips…the list is endless! I would also love to hear from all my fellow Ostobuddies out there; you can contact me with any questions, idea’s, tips or just to say hello, at email@example.com
Look after yourselves Ostobuddies!
Until next time,
I had a series of loading doses injected into the abdomen and thighs, and continued to inject once a fortnight after that. I was so desperate for the treatment to work, even more so because I was getting married in June and I really couldn’t cope with crohns ruining my wedding day after it had pretty much ruined everything else throughout my life. I persisted with the treatment, but kept in regular contact with my IBD nurses to update them with any progress.
June was upon me and I was still the same, well to be truthful, I was actually worse than ever. My weight was disgustingly low, I couldn’t remember the last time I had eaten or finished a proper meal; I hadn’t left the house for weeks and all I wanted to do was sleep.
My wedding day soon arrived; the only way I could attempt to take charge of the crohns was by starving myself for the 24 hours before-hand. I had started back on the prednisolone a few days before to give me a bit of an energy boost, along with plenty of pain relief.
I was so stressed in the morning, but not over things that a normal bride should be stressed over. I wasn’t bothered about the perfection of my hair, make-up, the venue etc; I just had all these poo-based scenarios whizzing around inside my head. What if I can’t get out of my dress quick enough when that diarrhoea urge hits me? What if the urge hits me on the short journey to church in the vintage car? What if I can’t do the one thing that I’ve been dreaming about for so long – walking down the aisle to the alter – because I have to run through the church clenching my bum cheeks? I was certain that one of these scenarios would play out despite not eating. I had my Mum and sister on stand-by to help me when I got the sudden urge to go. My dress was like a humungous meringue that was tightly clenching me by the corset; it would take me a good five minutes to get out of it.
Thankfully the day went without any major glitches, and I managed to get to the toilet with help when I needed it. Things couldn’t have been any more perfect, but I did find it difficult to enjoy the reception because I was just so exhausted. Sadly, the morning after I was brought back down the earth with a bump. A few of us were packing up the reception room we had used, removing decorations etc when all of a sudden I had that horrible hot flush with the desperate urge to poo.
Within a split second, I lost all control and my knickers were filled. I was absolutely devastated. I immediately ran out the room to the toilets, I entered the ladies and it was pitch black. I turned on the switch and it was still pitch black. The hotel had only gone and turned the electricity off in the function suite. By this point the tears are flowing and I’m sobbing with self-pity for myself. I used my hands to feel my way around and sat on the toilet. I tried to clean myself up, not that I could see what or where I had to clean up. I sobbed and sobbed for a good ten minutes, shouting out several names in hope that someone would hear me. Nobody came; I pulled myself together and felt my way out of the ladies.
Of course, my face now resembles that of a swollen tomato; Richard asked me what was wrong to which I then start crying again. I got in to the car because of the smell I was radiating, and then I notice the brown watery patches on my jeans. This is something I was used to, it had happened 100’s of times before, but it never got any easier.
Summer came and went; I felt so sorry for my daughter because I had become so afraid and depressed from having no control of my bowels, that I wouldn’t leave the house. And, if I did it would only be for a trip to Tesco when I knew my bowels were empty. The summer holidays weren’t a pleasant time for Chloe, she was so bored she just wanted to be back at school.
I had a routine appointment in the September with Dr M, I was in such a sorry state. I was skeletally thin, hadn’t eaten properly for months and the abscess on my bottom was the size of a conker. He admitted me there and then and we concluded that Humira wasn’t helping my condition at all.
I was prescribed a strong course of IV antibiotics and steroids to give me a bit of a boost. I had an MRI scan, colonoscopy and endoscopy. The crohns was absolutely rife in the anus, rectum and lower part of the colon. For several months now I had been researching ileostomys, something that once filled me with sheer panic was looking more and more desirable as the toilet accidents totted up.
A dear friend of mine, Lauryn, had been battling severe crohns for a couple of years now and had fairly recently had an ileostomy formed. As she recovered I watched her flourish as she was finally able to start living life again, it was such a lovely thing to see. She was always very open and honest about her stoma, she would show me pictures of it and explain various things to me. I couldn’t believe how small and discreet they were, completely not what I had expected and that made me feel quite positive about the prospect of a stoma.
I had a meeting with the gastroenterology team about my remaining options. Having a stoma formed was one of the options and so my surgeon Mr H came to discuss it all with me. He was aware of my deteriorating lung condition as he had known me for years. Mentally I felt ready for a stoma because my life was just so unbearable; it wasn’t a life, I merely just existed. Mr H was more than happy to do the surgery for me; he believed it would finally put an end to all my pain and suffering.
It wasn’t to be though; a GI that was doing the ward rounds the following morning – who didn’t even know me – had already decided that he was going to start me on infliximab in a final bid to settle the crohns disease down. I was pretty heartbroken about it at the time; I’d geared myself up for the stoma knowing that it would give me the life I so desperately longed for. I had my first dose of Infliximab and then discharged myself in anger.
I plodded on to Christmas by which point I’d had 4 Infliximab infusions with no sign of any improvement. I was losing blood frequently, my weight had dropped further to 5st 8lb and I was sleeping several hours a day. I moped around the house, losing every ounce of any remaining energy in my body through my bowel movements. The Christmas holidays were a dark time for me, I didn’t feel enthusiastic about any of it. The hardest part of all was seeing the sadness on Chloe’s face every time she asked if we could go out or do something. She was such a good girl, she always understood and comforted me, she didn’t know a life where her Mummy wasn’t ill. Her life shouldn’t be this way though, no matter how much she understands or pretends not to feel let down. In my mind, I knew I was letting her down time and time again, and it absolutely broke me. I sat crying in bed while I reminisced on her life; she knew of love, lots of love, it was the only thing I could offer her and I made sure she had it in abundance. The memories I had all seemed to consist of upset and sadness. Defecating myself, searching for a toilet, laid up in bed with exhaustion; this wasn’t a life I wanted to live, I owed it Chloe, my husband and myself to end this unhappy existence. Only I could change things.
I called my IBD nurse and had a good cry down the phone about things and how the Infliximab had failed to help me. We had previously discussed that a stoma would be the final (and best) option for me, she knew how positive I was about it because of the years of misery I had been living with. She arranged an appointment for January 3rd 2014 to see both my surgeon and GI together, and it gave me something to focus on.
Friday the 3rd arrived; I was excited, but nervous, about the appointment. I so desperately wanted that stoma and the chance of a normal, happy life that came with it. I was only nervous out of fear that I would be denied this only chance. My surgeon was already aware of the positive feelings I had towards forming a stoma, and my GI was on my side with it, too. I went into the room and we talked, and I cried once I started talking about my problems. I said “I can’t carry on like this; I want to have a stoma”.
I let out a huge sigh of relief at their declaration, “We both think it’s the right time for you to have a stoma, it will improve your life massively”. This life-long battle was soon to be over and the tears of happiness were flowing. There and then Mr H booked my surgery in for Wednesday the 5th of February, the 33 day countdown was on!
In between then and the procedure, I met with the stoma nurses a couple of times, had a pre-op where I was marked for the stoma formation, and got clued up on everything stoma! Time seemed to drag so slowly, I was like a child on Christmas Eve, a very long Christmas Eve! I had no doubts or reservations whatsoever; I was 100% ready for it.
The 5th of February arrived; naturally I was starting to feel anxious about the operation because of the anaesthetic risk on my lungs, but I was very excited none-the-less. It was an early start Richard and I left the house at 5:45am and arrived at hospital just before 7am. No surprise to anyone, but that morning when we were so close to hospital, I lost control of my bowels. For the first time EVER, I didn’t care! If anything, it sealed the deal and assured me that I was making the right decision; all doubt had been emptied from my mind.
I cleaned myself up and we headed up to the admissions ward. The bed was prepared, I got in to my theatre gown and those not-so-gorgeous matching stockings. Mr H came and had a chat with us, a bed in ICU was ready should there be any complications with my lungs, and I was third on the surgery list. Time didn’t see to move, I spent the next hour and a half clock-watching and moaning about how I could murder for a builders tea with a packet of shortbread.
At 9:15am my time had come and I made the daunting walk to theatres it was only when I said good-bye to my husband that the emotions began to flow. I had opted not to have a spinal block (which I regretted later on), so I walked directly in and laid myself on the theatre table – which surprisingly looked like a dentist chair! I just wanted to be ‘put out’ rapidly before I started to panic and get myself in a state. A cannulae was inserted, along with something in a syringe, and I drifted away to the land of nod.
I woke up a couple of hours later in recovery, the operation had gone smoothly, but I had some respiratory distress when I woke because of the pressure that had been on the lungs during ventilation. I spent the next 48 hours in recovery and was eventually taken up to the colorectal ward late on Friday evening.
Unfortunately, the ileostomy wouldn’t pass anything, and a tough couple of weeks followed. I was taken back to theatre late Tuesday evening of the 18th to re-fashion the stoma, this time they defunctioned the colon and formed an end ileostomy. The only reason the colon hadn’t been removed was because of my ill health and low weight which made a serious operation all that more risky.
My new stoma worked immediately and it felt so good to enjoy the taste of food and drink after being on TPN.
Five days later I was home, my incredible new life began and I have never looked back.
And the rest, as they say, is history….
After reading through all of that, you’re probably wondering what happened to those bowel issues I had?
Well, when I was bed-ridden for the 7 weeks when my lung disease was diagnosed, I wasn’t able to use a toilet. I had to use a commode next to my bed and a nurse had to record my every output; which of course was always watery/loose, sometimes containing blood, and far too frequent. But, at that moment in time it didn’t take priority over my lungs, it was discussed with the doctors looking after me and they were aware that I had previously been referred to gastroenterology and I’d refused a colonoscopy.
It was when I got referred to Ravi (Respiratory consultant) at Addenbrookes hospital in the September (2004) that he flagged it up as a fairly worrying matter. He managed to get me a referral to Dr M, who has also continued to look after me to this day. At 16, I finally agreed to have the colonoscopy, although I opted not to have any sedation. The results came back as inconclusive and they couldn’t really find anything sinister, which was a little disheartening because they couldn’t tell me what was causing the pain and watery-diarrhoea.
Life went on, as it does; I survived my GCSE’s and made it to the end of high school with pretty rubbish grades after all the schooling I’d missed. Despite that, I was lucky enough to get a place at college to study A-levels in English, Law and Biology; providing I re-sat my GCSE maths, which I was happy to do.
It was all a bit daunting, I still had so little confidence after my lung diagnoses and coping with the breathlessness wasn’t easy. To add insult to injury, my bowel issues were worsening and I would have more and more accidents. I would limit my intake to manage the pain and diarrhoea, which in turn made me feel lethargic and exhausted by the end of the day. As the cold of winter drew nearer I’d struggle with my breathing, which exhausted me even more; every day felt as if I was running a marathon. Back then, my lungs were just about strong enough to oxygenate my blood when walking slowly; running for the toilet when you have faecal incontinence with lung disease is like trying to stop the tide from coming in = It isn’t gonna happen!
By December, it had all become too much. I developed a nasty chest infection because of the weakness in my lungs, the cold, and my lowered immune system from heavy steroid use. Coping with all of that on top of crippling stomach pain and diarrhoea was getting me down badly. I discussed the issues I was having with Dr M and I had another colonoscopy, this time with sedation. But, once again they couldn’t get high enough in to the bowel, so once again it was inconclusive. Shortly afterwards (August 2006) was when my right lung collapsed and so again the bowel issues were temporarily put on the back-burner.
Things seemed to settle for a while, usually when I was on a high dose of steroid for my lungs, it worked well for easing my bowel problems, too. I had a third and fourth colonoscopy over the next couple of years, still displaying the same inconclusive result. I was hospitalised in April 2009, but this time it was for the immense bowel pain I was experiencing. They had suspected crohns for many years, but couldn’t detect it with a scope, which baffled them, so they didn’t know how to treat me. I was sent packing with a box of Tramadol to control the pain and that was it once again.
The turning point came in October 2009 when a different GI carried out my fifth colonoscopy. He had managed to get high up in to the bowel, until he came across such an extreme narrowing, near to the terminal ileum, that he couldn’t even get a 5mm paediatric scope through. Although I was heavily sedated, I was screaming because the pain was so extreme (so I’m told), and it was unsafe for them to carry on.
It was then that I was introduced to my colorectal surgeon Mr H and we agreed that doing an Exploratory under GA was the only way we could find out what was really going on in my bowels. Hopefully it would reveal what was inflicting so much pain and misery on me.
It became a bit of a waiting game as I couldn’t be operated on unless there was a bed ready in intensive care should my lungs fail with the general anaesthetic, which is always the main concern. And, weighing only 5st 5lbs made it even more risky. I signed the consent form and it was explained to me that should they need to carry out any invasive surgery there was a possibility I would wake up with a stoma. Back then I was 21 and I thought having a stoma would be the worst thing EVER in the world and something I feared, so I became very scared at this point. Anyway, I eventually got into theatre on the 26th of November, and had a third of my small bowel removed from (and including) the terminal ileum upwards. It was so incredibly heavily diseased and strictured with crohns that when I came round, Mr H actually apologised on behalf of the GI team for failing to get me in to theatre months, if not years, ago.
It was a serious piece of road-kill! The first thing I did was ask if I had a ‘bag’, I remember feeling my abdomen and breathing a huge sigh of relief that all I could feel was my skin. But, of course, it wasn’t all smiles because I had now officially been diagnosed with crohns disease.
Life improved to a point after having the resection, all of that horrid pain I’d been enduring 24/7 had completely disappeared, for a while at least. It took a good few months to recover and luckily we could just about afford for me not to have to return to work. Despite having the gruesome length of affected bowel removed, the watery and desperate diarrhoea never ceased. It was still ruling my life to some extent, nowhere near as bad as it was pre-resection, but it disheartened me all the same. I plodded along for the next couple of years, soiling myself when that sudden urge and panic would hit me. Every outing was meticulously planned, not that I ever went out much! I would limit my food intake to the point that I wouldn’t eat to minimise the risk of defecating myself; eating out was something I never could do either. I had a ‘portable toilet’ bag as I called it (Mum put it together for me), it contained bed wetting pads, a potty, toilet toll, wet wipes and rubbish bags – very glamorous for a 23 year old, but it came everywhere with me and was used several times.
The GI department at my hospital had been particularly busy over the past 18 months which meant my appointments to see my GI (Dr M) would be sparse, cancelled or worst still I would have to do the cancelling because I just could not leave the house for the draining cramps and watery/bloody diarrhoea that sapped my every ounce of energy. The hospital I’m under is a good hour and twenty minute drive from where I live; those of you that have severe crohns disease will appreciate what an incredibly mammoth task that is when you spend every hour god sends glued to the porcelain. It was clear to see that things once again weren’t as they should be and I eventually made it to hospital to see Dr M February 2013. I was so extremely exhausted, malnourished and weak that I just burst out crying, I was finding it so difficult to carry on with it all. I had an external examination because I had also developed a massive ischiorectal abscess, about an inch from my anus, which would drain via a fistula from the anus. It would seep persistently and was very sore.
Dr M was really good and managed to book me in for an urgent colonoscopy two weeks later. I had the scope, along with copious amounts of sedation, but it proved particularly tricky as I was in huge amounts of pain around my anus. Eventually they got the scope in and it wasn’t good news; I had now developed severe crohns disease in my anus, rectum and the lower part of my colon. They had struggled to insert the scope as the inflammation in the anus had caused bad anal stenosis (narrowing). I received a phone call the following week and it was agreed that I would be started on Humira (adalimumab anti-tnf treatment). I’d heard many positive stories about controlling crohns with Humira, so I was excited at the prospect of being able to live a relatively normal life.