Early in my journey, I was in a public toilet, the sign said “Please flush after use”. I tried my hardest but my face would not turn red. I then clicked what the sign meant! OK, that did not happen but it does make for a good intro to the blog title.
Over the years, I’ve read so many stories and answered so many questions about the quite natural act of using a toilet (…..some more repeatable than others). I think if there were a ‘Bachelor of Science degree in Toiletry’, I might pass with First Class Honours. I jest, clearly, but it’s strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso – the two main symptoms of the Carcinoid Syndrome associated with one of the most common types of Neuroendocrine Cancer.
I don’t suffer from ‘carcinoid syndrome induced diarrhea‘ but long flights are one of the few times I take Loperamide (Imodium). For long drives and trips to town, I’m simply reliant on toilet availability. Normally, I just wander into hotels and restaurants and help myself. Sometimes I find only the disabled toilet is available and when it’s urgent I have no qualms about using it. Some of them are locked and you have to get a key – again I have no qualms about asking for access despite my outwardly healthy look – nobody has argued yet! If sufficiently urgent, I’m even prepared to ask to use the staff toilets in shops etc. I have some ‘toilet cards’ I’ve not yet had to use them ‘in anger’. I also generated my own one given my worldwide footprint online which to most establishments would normally be acceptable evidence to gain access. If enough people ask, I’ll get a few hundred printed.
These issues are also heterogenous
When I read about some of the issues others deal with, I think I’m one of the luckier Neuroendocrine Cancer patients regarding these types of issues. I’m in reasonable condition considering the extent of my disease and my subsequent treatment. I put up with a number of irritants but I don’t seem to suffer as much as some appear to do. That said, I think I sometimes downplay my own issues though, I’m well known for ‘not frightening the horses‘.
One thing that does worry me is the occasional stomach cramp. Hopefully, I’m not tempting fate as they seem to be vastly reduced in the past 6 years, I can almost correlate that to commencing Pancreatic Enzymes. That said, other things can develop in parallel and so I don’t believe it’s safe to assume one thing makes all the change, perhaps my diet was evolving too. As I said, it rarely happens nowadays but when it does it can often be very painful and debilitating – normally resolved by going to the toilet (and hopefully one is close!). Handy if I’m in the house, not so handy if I’m on a plane, in town or anywhere where toilets are not in abundance. I did write a blog on this subject following a very painful episode on day 5 of my Hadrian’s Wall adventure – The blog is entitled ‘My stomach cramps my style’.
We’ve all been here, right?
As I’ve had intestinal surgery, Bowel obstructions are a potential worry. To date, pain and sluggishness have always been just a bout of constipation. Read my article here.
On the subject of urgent visits to the toilet. I wrote a blog about a lady with inflammatory bowel disease (IBD) and I suspect in a worse condition than most Neuroendocrine Cancer patients. She too looks outwardly healthy but this illness is clearly a major disability. I’d like to think this type of incident is not that common but her response to it was magnificent and it apparently went viral. Just goes to show that with invisible illnesses ‘Things are not always how they seem’. The letter is brilliant.
Thanks for reading
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I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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I appreciate all comments. I have Lung Nets. Flushing is beyond awful. I am so tired of teaching my doctors of our Flareups. Your information has been past on to them. Thank you. ? Has anyone dealt with gout with the flare-ups?
You really need to ask that in my private group but I have searched that before and there is no direct connection to Lung NETs, carcinoid syndrome and gout.
Cause of Gout
Gout happens when urate, a substance in your body, builds up and forms needle-shaped crystals in your joints. This leads to pain, swelling, redness, and changes in the movement and use of the affected joint. However, not everyone with high urate levels develops gout.
Urate comes from purines, which are found in your body’s tissues and many foods. When purines break down, they become urate. Normally, urate passes out of your body in urine. However, when too much is made or too little is removed, urate builds up in your blood and needle-shaped crystals form in your joints, causing inflammation that is experienced as gout flares that cause pain and swelling.
Researchers continue to study how genes and environmental factors contribute to a buildup of urate in your blood. However, certain factors may increase your chances of developing gout, including:
Having high urate levels.
Having a family history of gout.
Being male.
Having menopause.
Increasing age.
Drinking alcohol.
Drinking sugar-sweetened beverages, such as soda.
Having an unhealthy diet and eating foods that are rich in purines (usually from animal sources), a substance that breaks down into urate.
Some health conditions may increase your risk of developing gout, such as:
Overweight or obesity.
Metabolic syndrome, a name for a group of conditions that include high blood pressure, high blood sugar, abnormal cholesterol levels, and excess body fat around the waist.
Chronic kidney disease, a condition that develops when your kidneys are damaged and cannot filter blood the way they should.
High blood pressure.
Conditions that cause your cells to turn over rapidly, such as psoriasis or some cancers.
Rare genetic conditions (Kelley-Seegmiller syndrome or Lesch-Nyhan syndrome) that lead to increased urate.
Some medications can increase your risk of developing gout, such as:
Diuretics, which help your body eliminate excess fluid.
Low-dose aspirin.
Niacin, a vitamin, when taken in large amounts.
Cyclosporine, which is an immunosuppressant for people who have organ transplants and is approved to treat some autoimmune diseases.
I shall be getting both cards too. Imodium just doesn’t hit the spot, I’ve had to ask for a prescription med to get through the flight. 😀
Just in case. I had something called odonterontron I think thats how its spelt and it gave me serious headache. I thought it was my sinus problems. I suffered two weeks as I didnt know it could happen. Hope your pills work. I do fod map diet avoiding insoluble fibre it helped me. fod map edu will get you info. Good to hav er tje card back up. Christine
Thank you Christine. The tabs are Lomoil, I started them today. Fingers crossed. I did try the FODMAP diet and it didn’t help me.
Thanks for that info Ronny I have just requested both cards, need the toilet one. Christine
Thanks for that Ronny have just requested both cards.
Christine