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On 18/10/19, my colon will be officially retiring and passing on the baton to the bag! It’s tried it’s best to function over my entire adult life to not much avail. Millions of people suffer from gut disorders and diseases and there is still a long way to go in fully understanding how an ‘out of sync gut’ effects our general health. I’m hosting a chocolate tea at mine on the afternoon of Wednesday, 16/10 (please DM me for details if you would like to come along) to raise money for Guts UK.
This proactive, amazing charity allocates the vast majority of its financial resources to funding pioneering research into conditions of the gut, liver and pancreas. Furthermore, Guts UK raises awareness of gut health and provides expert information. As many of you will know, I lost my mum/best friend from pancreatic cancer, her diagnosis sadly, as is all too often, came too late. Guts UK have been working hard to improve earlier diagnosis of less survivable gut related cancers. Guts UK is a founding charity member of The Less Survivable Cancers Taskforce which was set up to improve survival rates of these cancers, 4 of which are digestive.
The health of our guts and functioning of our immune systems are very strongly linked and the latter has a strong influence over the former. This is a research area that is in much need of funding. It is of little surprise then that I have developed a whole host of debilitating, life changing ailments over the years; auto immune diseases, arthritis, chronic fatigue, hemiplegic migraines, hiatus hernia, dyspepsia, gut bacterial and yeast infections amongst them. In fact, the majority of people I speak to in my various ailment support groups have digestive problems.
Slow transit and evacuation dysfunction runs in my family and seems to get worse with each generation. My grandfather died of bowel cancer, my dad has had (and still has) hernia’s from this. I heartbreakingly see my daughter, Bella, suffer daily with this disorder and I really hope medical advances will help alleviate this for her. My geneticist consultant has said our disorder is hereditary but there is currently no genetic testing available.
Living with a neurogenic, malfunctioning bowel that just wants to snooze is pretty horrendous, frustrating, uncomfortable and painful with constant nausea, regular brain fog and the odd bit of vertigo. Since my early 20s, I have been invasively prodded and poked more times than I care to remember in hospitals the length and breadth of the country. I’ve had 2 types of neurostimulator implants attached to nerves in my lower spine, a mini stoma in my tummy button, varied my diet, tried every laxative on the market (most ineffective, yes that is how stubborn my colon is!). ‘Too posh too poo’ 🤪, I’ve spent thousands of £s over the years on regular colonic irrigation treatment without which my health would undoubtably be much worse. Though the treatment was recommended, it is not covered by the NHS.
Life with my dysfunctional colon has been an emotional roller coaster and it has had a significant impact on my mental health - most of you tend to see me smiling a lot, well this is my defence mechanism. My amazing Bella, and loyal support network keeps me going - I love and appreciate you all! In my early 30s, a GP in London sent me for counselling which helped transform the pure hatred and anger I felt towards my colon to acceptance of it. This was a breakthrough and sanity was restored (almost 🤪). I had actually barged into his surgery screaming ‘cut my bowel out or I will cut the f**king thing out myself’ seemed to prompt that referral funnily enough.
Getting medical people to believe me and understand my bowel has been a massively frustrating battle, a diseased bowel they get, a malfunctioning one with healthy tissue they often don’t though I am coming across more awareness. This is as a result of invaluable research. Have been told in the past to eat prunes, eat more fibre (makes it worse) , exercise (already had a gym membership) even been accused of Munchausen’s syndrome (that consultant was immediately dropped with the help of an amazing medical team - had functioning test results been referred to rather than just looking at healthy tissue then am sure words would have more wisely chosen!). For years this malfunction was put down to a spinal injury, it’s only recently that some consultants have acknowledged the role my joint hypermobility plays in this malfunction.
It’s been a long and difficult journey physically and emotionally. I am enthusiastically ready to welcome my ileostomy and be rid of toxin overload and feeling so yukky. It won’t be the easiest thing to manage and be rather unsightly, however, the health benefits will outweigh the current status quo. I am incredibly lucky to have the invaluable support of Dr Collins, my patient and caring GP, Emma and Madi (RHCH) my amazing stoma nurses who are yet again hand holding me through this next step, Miss Goulder (RHCH) my lovely, talented surgeon. I am also very grateful to Dr Zarate-Lopez, at The National Hospital of Neurology and Neurosurgery, she has reviewed my case and previous investigative tests I have had over the years and advised RHCH accordingly. I cannot thank this amazing team enough as well as many other members of the medical profession who have been involved over the years.
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