Sharing about my struggle through multiple misdiagnosis.

It has become a true passion of mine to share my story. Not just to anyone that is willing to listen, but specifically to those that have an opportunity to make a difference in the lives of other patients. Whether it be clinicians, surgeons, nurses, medical students, physicians, or even other patients- my goal in sharing my journey is to help others.

It has become a true passion of mine to share my story.

Sharing about my struggle through multiple misdiagnosis.
Expressing the struggles I faced through multiple misdiagnosis.

Today, this special group of life changers were the nurses of Scripps Health. Nurses from multiple Scripps Hospital locations join together quarterly, to learn about how to better care for patients with various wounds and/or an ostomy. This course is put on by Scripps’ amazing team of Wound Ostomy and Continence Nurses (WOCN’s), and it is such a privilege to present alongside such a dedicated team. After the class reviews the “basics” of ostomy care: what is an ostomy, the different types of ostomies (ileostomy, urostomy, colostomy, etc.), ostomy pouches and pouching techniques, the do’s and don’ts, possible parastomal skin complications, and how to change/empty an ostomy pouch; the class is then introduced to me.

During my presentation I share significant moments in my life; from the start of my symptoms, my struggle through misdiagnoses, my final diagnosis of Crohn’s Disease, my 8-month hospital stay, and of course my ostomy surgery. I really emphasize what life is like with a stoma, the positive aspects of my life because of my ostomy surgery, how nurses can better support their ostomy patients, resources and tools to provide to their patients, as well as answering any questions they may have. I am always very honest and extremely open, even with the most intimate details of my life- because the reality is, having ostomy surgery is a very intimate thing. Because of this, not everyone likes to share; which is another reason why I do- so that hopefully, one day, less and less people living with an ostomy are silenced by the stigma.

-because the reality is, having ostomy surgery is a very intimate thing.

Sharing about my passion to raise awareness for other ostomy patients, like myself.
Sharing about my passion of raising awareness for ostomy patients.

After every one of these courses in which I have shared my story, I am encouraged not only by the WOCN’s who arrange the class, but also by the nurses attending. “It is a breath of fresh air to hear from a patient”, one nurse told me. Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well. It is an incredible opportunity to influence and encourage these nurses, and to remind them to approach ostomy patients with a little more compassion and patience. But most of all, it is motivating to continue to raise awareness on behalf of ostomy patients, to promote life for the better because of ostomy surgery, and continue my passion of sharing my story in the effort to change lives.

Providing insight into positive patient perspective, allows nurses’ perspective and approach towards ostomy patients to be changed as well.

Sarah Squire Embraces Life with a Stoma

I had colostomy surgery in 2007, aged 34 due to a rectovaginal fistula. Colostomies were for old people, not for a young(ish) mum with a full time job. How would I go to work? Would I smell? Would people be able to tell? Would I every wear jeans again? Can I go on holiday? So many questions but also an absolute terror.

I knew I needed the stoma as the fistula symptoms were horrendous – a connection between rectum and vagina meant I was passing stool uncontrollably the wrong way and it was completely mortifying. But I still wasn’t sure I could cope with a colostomy and also live a normal life.

My brilliant stoma nurse Simon managed to calm me down and explain that it really wasn’t the end of life as I knew it, and when he said “Sarah, children do this” it was a turning point for me. I had to get a grip and get on with it. I still didn’t like it and the early days were a struggle – psychologically as much as physically and although it felt like a long road I found great support, initially from the Ostomyland forum online and then also the Colostomy Association (CA). I went back to work full time, began managing my stoma by colostomy irrigation and you know what, life was OK. I didn’t smell, nobody could tell I had a stoma, I could wear jeans and we had an amazing family holiday in Florida a few months post op.

I began volunteering with CA and the more I did the more I loved it. I am now a Trustee and heavily involved in many areas of the charity. I absolutely love it and have met so many friends for life along the way.

As for the fistula, I had seven repairs in total and although the final one was a success, the multiple surgeries had damaged my sphincter muscle. Reversal would lead to incontinence so the stoma is staying. I am happy with my lot as there is no point in dwelling on what could’ve been and although I will never love my stoma, in a funny way I am grateful as it has indirectly resulted in a new lease of life for me in my work with CA. Life with a stoma is great.

My second Blog about life with and without a stoma

Some six months have passed since I last wrote up a blog.

It’s been a busy time and I am delighted to say that in October 2015 I got an all clear CT scan. So what next I wondered?  I was quite used to the colostomy and all involved with maintaining the stoma. So I wasn’t in any hurry to take the next step.

In fact when I saw my surgeon in November I was quite casual about it all. “If you cannot reverse “I said “that is fine I can live with this situation” But he gave me good advice as to why it should be reversed, if it can, mainly to do with my age.

At seventy five I may well get ill with something completely unrelated, like a fall, or a stroke, or God help me, dementia. In that event I would not be able to look after the stoma myself and would have to immediately consider a Care Home.

The date for the reversal operation was set for after Christmas. My surgeon was looking, hopefully, to the second week of January 2016. In the meantime I was to have a series of dilations to the bowel under sedation. The colon had narrowed at the point where the join had been made after a large section of bowel had been removed. It was not uncommon for this to happen; it is mostly due to scar tissue.

So another set of appointments, another uncomfortable procedure and they managed to stretch the colon from 9cm to 18cm But would it hold was the next anxiety, well for me at least!  The surgeon initially wanted to get to 20cm but he felt all would work again as the scar tissue would sort its self once the bowel was acting naturally again.

I was ready for the 29th January as the Theatre admission date. All tests had been done. A couple of days at outpatients for, blood tests, ECG, s etc. In fact I just got into the car and said ‘Hospital’ and it went under its own steam!! For nearly three years we had not been to many other places.

On the day before the operation the phone rang. Guess what? Operation cancelled; reason given lack of beds. I was annoyed and for the first time I felt that this was different. You see I wasn’t a cancer patient anymore, which is wonderful of course don’t get me wrong. All the treatment I had had over the last three years had gone like clockwork and always with a certain background of urgency. Now I was in the mainstream of surgical patients.

After many phone calls to and fro it was plain to see that they wanted to put me with another surgical team. I stuck out for the man who had brought me this far.  I gathered later that he was furious and personally set a new date for the op on the 26th Feb 2016. This was an odd day as it was my 75th birthday!!! But hey I’ve had 74 birthdays already and you know what; they are all very much the same. So led by the Anaesthetist, the entire theatre staff sang” Happy Birthday” as she applied the needle and off to sleep I went.

It is worth mentioning at this point that I had nearly cancelled my Colostomy bags in January, thinking I would not need them ever again! Although we are constantly advised to always have some spares, I certainly did not have a month’s supply. This time I only contacted the provider after the op. One never knows!

The stoma reversal has been a success as far as its main objective was concerned. This is a great relief to me and my surgeon, as blockages can occur.  I am now retraining my brain not to think every time I break wind I will need to run to the loo. But one has to err on the side of caution sometimes!  The bowel system will, I am reliably informed, start to settle into a pattern of normal behaviour but not immediately, and it can take up to six months.

The one thing I did not expect was an open wound where the stoma had been replaced into the abdominal cavity wall. When I say open it is of course covered in a dressing but a hole measuring 2cm deep by 3,65cm wide sits on my stomach.  It is now the one thing that is taking its time to heal. I have it repacked and dress every two days by the practice nurses, who tell me it is shrinking and they are pleased with its progress. They check the wound not just by looking at it but also by photography, which is a new tool in their medical bag.  What a selfie!!!!!

A nasty chest infection inflicted on me during my stay as an inpatient, thanks to everyone in the hospital wards coughing, has now gone. It definitely delayed my recovery and made the inpatient experience quite appalling. Still that was four weeks ago and all is good.

I see my surgeon in May and with luck and a following wind, excuse the pun!! I should be making my farewells to this part of the NHS hospital system. I still have a colorectal specialist nurse who I can call on anytime I have worries and she will organize my CT scan every year for the next four years.

I can truly say that all departments of the NHS have looked after me with care and consideration. It’s a marvellous organization, but on its knees now.  Who knows for how much longer can we proudly boast,” Free at the point of delivery from Cradle to Grave”

NB.( I caught Polio at aged nine in 1950, two years after the birth of the NHS. I was hospitalized for four years with a lot of spinal surgery being done. I know for certain no other generation will have the ongoing medical care that I have been lucky enough to count on over the past sixty years.)

 

Angela Wheelwright. Hayling Island, Hampshire.

March 2016