Nine years since the above photo, nine years since my life changed. Nine years sice emergency total colectomy with ileostomy. Nine years since I was in hospital for 10 weeks at deaths door.
This photo haunts me a bit because I was so poorly, my eyes are dead. I was only just over the initial surgery when I had a rectal stump blowout which lead to pelvic sepsis, then an awful complication of an ongoing ( nine years to be exact) pelvic collection leading to a fistula connecting from the collection to my perineal area, then causing a hole in the back wall of my vagina. I couldn’t eat so needed an NG tube for feeding, and to stop the sepsis I had to have a rectal catheter inserted into my rectal stump to my pelvic area.
Nine years of constant leakage and intermittent pain. Surgeries, some very big surgeries, taking muscle from my thigh/buttocks and creating a flap. All failed.
As you can probably tell, I am not doing so well, I am usually very upbeat and an attitude of just getting on with it. But that attitude gets me nowhere, everyone thinks I am doing ok because that is what I choose to show the world, I am not ok. I go out and enjoy my evenings, but can leak through my clothes, My friends have had to ( and want to ) help. If I sit for any length of time at work or stand for any length of time ( you can see where it gets awkward even considering telling them because nothing can be done) I get discomfort/ pain. It can travel across both buttocks and weirdly down my flap scar. I need and love my job so will just carry on.
Medical professionals leave you to get on with it until things get very bad, and even then most don’t understand the impact. GP’s will do what they can, but it’s not their area so to speak, so they try and help but can’t make big decisions.
I google and join groups just to get some idea of how little is being done for people with colorectal/gynae fistulas or perianal Crohns disease. Since my last surgery about 6 weeks ago where they lay open the fistula and debride it, and repair the hole in the vagina, it has left me with discomfort bordering on pain at times, a lot of leakage and a feeling that the gynae repair has failed. I have had antibiotics three times and my GP thinks I have a low grade infection which may benefit from long term antibiotics.
I emailed my surgeon’s secretary nearly a week ago with her saying she will pass on my message, nothing has happened except I now have this low grade infection issue.
If i’m honest, the stoma has been the least of my problems and has generally behaved apart from a few blips and the stomal fistula ( yes another one there)
So this year my stomaversary is a reminder that I am still unwell after nine years, so won’t be celebrating.
This is just awful. You are being failed and it’s not at all fair. I’m so sorry đŸ’•
Thanks Sandra, it’s so long winded, you don’t realise how long you’ve actually been in this way
Bless you, from one stoma warrior to another, surgery really isn’t the cure we thought was it. I am there with you still fighting years after the first cut. Hang in there you are an inspiration and a great person fighting a horrendous fight. Take care . Big hugs Andrea aka stoma warrior xx
Thank you Andrea, it’s nice to know we are not alone ( although I don’t like to know others are struggling there is a bond only we know )
I’m nine years in from complications that led to a enterocutaneous fistula. It’s been awful and I think sometimes we have to say that. It is an awful thing to live with. Like you I probably have good days but more bd. Plus it’s affected my eyes.
I can completely understand why you aren’t celebrating , it’s a constant battle.
I just try and have the happiest life that I can within the restrictions these surgeries and infections cause.
I completely get everything you say x
Thanks Lauraine, it can be so hard
Hello Claire,
Thank You for continuing to host Thomas the Stoma.
I hope that you never feel it is not something to be continued …. For those of us whom are somewhat ‘old fashioned’ in that we do not engagae regularly in Multi MEdia – a site such as this blog is great to visit and to be emailed from for period updates.
I know there are many folk such as myself who are likewise not regular users of social sites but none the less do wish to support others and exchange with those of likeminds, who are personally aufait with our various stoma conditions.
However, ALL of us generally do not allow our stomas to define us and so often put forward a brave and steadfst appearance to the outside world – even to Family Members – no matter how supportive our friends and family may be.
Clair, you are a case in point – and this statement of what actually is an emotional challenege – and an ongoing one does not go unheard.
HUG-HUG
May I encourage youo to cross blog and perhaps visit such sites as ‘Meetanosotomate.org’ – which, although what many may feel is an American Patient resource / Dating Site – it is in fact one of the most far reaching and international Forums I know …. and many Members from the world over contribute and have maintained their Membership over time – The UK probably being the second largest Member Country of individuals.
I feel for your situation Clair, and personally have found many really caring and positive folk with whom I share commanality and a wide exchange – One can be as private or as open as one wishes.
I send Easter Wishes and hope that in the midst of your discomfort, you continue to share much love and support with your fellow Ostomates and the Wider World in general.
Very Best Wishes
Jayne
Hi Jayne
Thankyou for your continued support with my blog posts and taking the time to comment. It is very much appreciatied. Clare