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Activating after Urostomy

Hi All,

Just a random thought but are there any active activators out there living with a urostomy? I’m just recovering from surgery but already hankering to get back on the hills :slight_smile: There’s quite a bit of contradictory stuff online so real-life experiences would be very valuable.

I realise it might be a sensitive subject so quite happy to take it to PMs via the reflector or via my QRZ e-mail address if you prefer greater privacy.

Thanks in advance to any fellow ostomates :slight_smile:

73 Paul G4MD

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It’s a sensitive subject but far too many men ignore health issues until it is too late. We try to be “proper hard men” and struggle on. If talking about this on here prompts a few of my SOTA colleagues to get themselves checked out sooner than later then it’s well worth doing.

And if you don’t want to know or you’re squeamish then you can mute the topic.

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If it goes via the reflector then isn’t it public?

Not so far as I know if you use the private messaging facility. I am however willing to be re-educated…

Private messages can only be viewed by the sender and recipients. Reflector moderators have the ability to see everything. But private messages are essentially private. Messages posted in the thread are public to anyone, not just people logged in.

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Hi Paul. I had surgery for colorectal cancer in 2018 and had an iliostomy for 3 months. After 5 or 6 weeks healing I was able to return to work and did pretty much what I wanted to do, just nothing very strenuous. You do need to be careful not to fall, or bump the stoma. I think less strenuous hikes and activations would be fine after giving healing the recommended period of time. Of course, you should consult your doctor and get his thoughts. Good luck with your journey.

Ken,
W4KAC

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Hi Ken, many thanks for your input and your kind good wishes :slight_smile: I’ll certainly discuss the issues with my surgeon at my next appointment. A common thread seems to be avoiding lifting, but recommendations vary from no heavier than half a kettle full of water to 10lb… I’ll certainly have to radically rethink what equipment I take and how I carry it! Still, where there’s a will… And I am extremely fortunate to have the support of my good friend and long-time activation partner Gerald, G4OIG. Now if I can swap out his Lucky Anvil for my kit everything will be fine :rofl:

73 and the best of luck for your own journey,

Paul G4MD

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Paul,
Check your QRZ email address inbox. I sent the question about mail using the mail button so it was public. Maybe there is another button.

73
Ron
VK3AFW

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Click on the callsign, select “Message”. That’s as private as it gets (as per Andy’s comment)

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Many thanks Ron, response sent by e-mail

73 P

Not my initial intention for this thread, but Andy’s right the subject is worthy of attention so in case it helps jangle a bell with someone and gets them to act here’s my back story…

I had suffered from (benign) prostate symptoms (urgency, frequency, painful urination) for many years so when around the start of lockdowns in 2020 they started getting worse I barely noticed. For several reasons this was a very stressful time in my life, so as they got worse it was too easy to ignore them and prioritise everything else that was going on. So it was only in September 2021 when the symptoms had become more or less unbearable that I went to my GP, thinking I’d got a urinary tract infection. When the test results came back negative for infection but positive for red and white blood cells I was referred to the local urology clinic, where after further tests and scans it was identified that I had an aggressive muscle-invasive cancer of the bladder. Surgery (trans-urethral resection of bladder tumour, TURBT) followed, then four months of chemotherapy to prepare me for the major surgery to remove bladder, prostate and other assorted pelvic bits and pieces. I’m now awaiting results of the histological examination of the grisly bits removed to confirm that all traces of the tumour have been eradicated.

My doctors tell me I have been very lucky - the tumour was on the verge of breaking out into my abdominal cavity, which would have been a whole different ball game. So as long as there’s been no as-yet undetected spread I should have got away with it. Here’s hoping…

I have to say despite all you hear about the NHS being on it’s knees, from that first consultation with my GP it’s been like being on a speeding train, with no let-up in tests and treatments right up to the present moment and excellent care from the stoma nurses is continuing. I owe the whole organisation a huge debt of gratitude.

So the moral is pretty obvious - if you note ANY change even a slight one in your peeing habits or experience - get down to your GP and get it checked out while any sinister causation can hopefully be treated without the effects being life-changing.

Apologies if the above is “too much information” but if it persuades one person to act quickly and avoid what I’m going through it will be worth it.

73 Paul G4MD

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This might be the most important thing Andy @MM0FMF has ever done in his life by raising this subject :rofl: :clap:

I had been suffering with some discomfort follow SOTA activations and long hikes, it felt like a pressure on my perineum (yes blokes have those too). Knowing that my BUPA cover will run out at the end of June I took the opportunity to see a specialist.

Diagnostics included measuring flow into a jug (it nearly overflowed!) - apparently I have a large bladder at around 1.2 litres full, finger up the bum (I was impressed how much could be ascertained by such a ‘crude’ diagnostic technique) to check prostate size and firmness, an ultrasound of my bladder and then a comprehensive set of blood tests.

Having ruled out any issues with prostate (I suspect I was getting very sensitive skin following long walks which appeared as a pressure - Bepanthen is a good ointment for that condition) the discussion turned to ED which I’ve suffered from for the past few years, and more recently a reduced ability to ‘squeeze’ when weeing. Sildenafil solves the problem for me, but I was interested if anything in the blood works could be a contributory factor.

Everything came back normal apart from Cholesterol which has been slowly creeping up over the past few years as I’ve put weight back on. I’m trying 2 days in 7 fasting together with calorie controlled intake, and as much as possible 10,000 steps a day. I’ve used this before and it works fine, and my cholesterol level is closely linked to being overweight.

One thing that did come out of the diagnosis is that the blood vessels ‘down there’ are smaller than those in the heart region, but ED and other control issues can be an indicator of future heart disease - 1 in 3 will go on to have issues, so again getting the weight under control should have a positive impact on my heart too. I suffer from visceral (internal) fat so I’m probably in that risk bracket.

Thankfully the answer to my issues is more SOTA (with cream)!

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Never! Thanl you for sharing this Paul. I lost a friend to bowel cancer a couple of years ago. He suspected something wasn’t right when blood appeared in his poop, but just put it to the back of his mind. He also didn’t bother returning his stool samples to the NHS when they sent them out. An early intervention could have had a much different outcome for him.

Glad to hear you’re coming out the other side. As for SOTA, stick to a QRP radio and a small mast and you’ll be fine!

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I meant to add, for those that haven’t heard and are concerned, you can get ‘blood in urine’ tests via https://www.icletest.co.uk looks to be a good way of checking yourself periodically.

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Indeed, hindsight is a wonderful thing. I now see clearly what happened to me was “on the cards”. There were many pointers along the way. Even the regular stops for “photographic opportunities” on ascents should have been a warning sign of an impeding heart attack. Thankfully my level of fitness achieved through activating stood me in good stead and there is minimal harm done, but it could so easily have been a different story.

I sincerely hope that Paul gets some answers to his questions. From my experience, clinicians will only be able to provide a certain level of advice. They are used to dealing with the average person. Those of us that are more active and keen to continue a very active life can put them outside their comfort zone. There is therefore no substitute for the feedback that those who have gone through the experience can give.

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With modern telemedicine consultation is actually quite easy for this tech-savvy group. Needs smart phone or laptop with camera. Some health care plans actually offer this service.

73, Jaakko ac1bb/oh7bf

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From my own experience I would strongly recommend screening for blood in urine from time to time as bladder cancers and some other conditions can be detected well before more obvious symptoms occur.
When I reached the age of 65 I asked my GP if it would be a good idea to have some sort of medical check-up like the annual medical I used to have when I worked (my work involved checking that I was fit to climb tall TV/Radio masts.)
He recommended that I should have blood and urine samples tested as this can pick up most age related problems.
As a result blood was detected in my urine of which I was totally unaware.
Further examination showed that I had a bladder tumor.
My scheduled hernia operation was put on hold and instead I had an operation to remove the tumor.
I had annual checks for the following 5 years before being given the all clear.
I was so lucky that my tumor was detected at an early stage and dealt with.
That was now 12 years ago.
Had I not taken the urine sample test the outcome might have been quite different.

Paul , I hope your recovery continues and you can safely venture out onto them there hills again.

David , G3RDQ

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A very good friend has had some bad new regarding his prostate and he suggested I should have a test as I am now “of that age”. I had one a few years back due to having prostate symptoms but it was OK and blamed on my diabetes. With this news I asked my quack if I could have a test and I said “maybe I am just being a hypochondriac after my friend’s news.” The surgery’s view was “good idea”. Result came back today, my PSA level was normal. Whilst there they put in for the whole range of tests they do in my annual Diabetes MOT. Liver, kidney function, thyroid. The only one which was worse was my Hb1AC. Hmm… working from home means too many pieces of toast with a cup of tea when working. So a bit of more stricter dieting needed.

Mrs FMF (retired 3 weeks now) has been doing some spring cleaning. She found a litre of Tequila she bought me for my birthday but mislaid. Oh dear, the dieting starts tomorrow. Happy days :cactus:

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Hi David,

I’m so glad you caught your bladder cancer early and it was successfully treated. As you found you can have blood in your urine that is completely invisible to the naked eye (microhaematuria) so getting that test is so important.

I’m doing well thanks, walked 500m today and increasing all the time :slight_smile: Looking forward to catching you from a hill soon!

73 Paul G4MD

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