Reply With QuoteA serious condition but treatable as you say Tony.
A nice curveball for life to throw at you as we get older.
Hope the treatment goes well.
Unfortunately I've had a pretty awful month with my tummy (read bowel), to the extent that I was so sure I had colon cancer that I was starting to draw up contingency plans for the worst kind of diagnosis. Anyway, I had a colonoscopy yesterday and it turns out that it's actually ulcerative colitis (something my father suffered from) and should be successfully treatable. I do have rather a lot of pills, some of which are a one-off treatment and others that I'll need to take for the rest of my life. I also have to go back for an outpatients appointment to talk about aftercare and disease management, but in the interim I wondered if any other TZers were living with this and, if so, how you are coping.
As an aside, just some words of encouragement for anyone facing a colonoscopy for the first time. The lead-up is a tad unpleasant (a change of diet for a couple of days, followed by a day's fasting whilst taking some industrial strength laxatives - and they really are industrial strength); however, the test itself was nowhere near as challenging as I was fearing. I fact, having been given some sedation I wasn't even aware of when my consultant swapped his finger for a probe (!) and he had to wake me up to tell me that he'd reached the end of my colon and was now on the way back. Even then - when I was properly awake - it was no more than very mildly uncomfortable.
My advice to anyone who has symptoms that are worrying them (changes to traditional movement habits, loose stools, blood in stools, etc) is to get on the NHS Bowel Screening Programme straight away. You'll receive a simple kit to submit a sample, and if they see anything they're worried about you'll be straight in for screening; thereafter, because you'll be on the screening programme any treatment required is fast-tracked, and is actually far quicker than going privately (should you even have that as an option).
A serious condition but treatable as you say Tony.
A nice curveball for life to throw at you as we get older.
Hope the treatment goes well.
My youngest (19 y/o) is diagnosed with the same last month.
Best wishes Tony. My father had this and it remained undiagnosed for so long that eventually it turned into Colon cancer which he fought off but which returned 10 years after and sadly took him 2nd time round.
My sister was diagnosed with UC a few years back and takes pills and restricts certain foods and seems to be getting on absolutely fine.
Once again best wishes with it all.
You will find your own methods of handling your disease and what works best for you. Not pleasant but manageable- good wishes.
Hope it all goes well Tony, I'm sure it will. Re the NHS Bowel Screening Programme, I'm pretty sure it kicks in automatically at 60, it did for me.
F.T.F.A.
Hi,
I was diagnosed with this at 50, although looking back i think it was there for quite a few years before.
I'm now 55 and it's pretty much in remission just now. I've had several hospital admissions for bad
flare ups over the last few years. It's trial and error for treatment. i've been on a few different biological
drugs which appeared to work initially but then for whatever reason my body started to reject.
i'm now on a self injection every 8 weeks of a drug named Stelara (don't ask me to spell it's real name)
and so far about 2 years in it appears to be still working. Various other issues can come along with the
condition and it can be very debilitating at times.
Feel free to fire any questions at me and good luck.
maseman
He’s currently on medication, but he told us that it’s not working brilliantly. Next steps are always with blood tests. And blood test + Asperger is a difficult mix, so to speak…Originally Posted by learningtofly
At his age, the long-term ‘forecasts’ (is that the correct phrase here?) are not nice. Crohn’s is around the corner and, up to a certain percentage - in the long run, cancer.
Let’s say that the lady who was telling him about living with UC in years to come was not taking prisoners, so to speak.
But development of treatments and medication are not halted. So who knows whats available in 20, 30, 40 yrs.
Good luck with the treatment Tony, at least it's been diagnosed now and it's not something malignant. With regards to the colonoscopy I can identify with the procedure, I had to have them annually for 5 years and to put it mildly it wasn't something I relished!
Sorry to hear about your dad, Ryan - I guess the way these risks are addressed now gives us all a much better chance of coming out the other end. Good news that your sister is managing it successfully, though.
Thank you.
Your right of course, Bob. I think one can request a kit as well, though (I might be wrong, so stand to be corrected).
That's provided some useful real-world perspective, thanks. How are you coping with the injections, and where do you inject?
Very best wishes Tony. Hopefully, as it's been diagnosed early (I assume) treatment should be very effective.
It's now starting to kick in at 58 and even 56 years of age. I was sent a screening kit in December having just turned 58.
In Scotland it starts at 50
I returned a positive bowel screening test last year. Had a colonoscopy on the 29th December. I went for the gas and air option and you could feel it winding its way through your colon. They removed 3 large polyps for testing.
Turned out they weren’t cancerous.
From getting a positive screening test to the all clear took 5 and a half months, not so good if it was cancer.
Mind over matter with the injections, i'm pretty used to it now.
I inject into the side of my tummy.
The worst things for me have been a drug called azathiorprine that
they tried me on which made me violently sick every morning, and
each time i've had a flare up the course of steroids following it -
wired to the moon, voracious appetite and weight gain.
Oh and a few accidents over the years if you know what i mean !!
Iain
Sorry to read this, Tony. Thanks for the tips though and good luck with managing the changes. I’m sure it’ll all seem very manageable in a few months time.
Sorry to hear that LTF.
I guess the good news is that you have a diagnosis and so you can be treated. Best of luck with it.
Very glad to hear there was no sinister outcome Tone.
You've a good few years in you yet and best of luck with your treatment.
Cheers,
Neil.
My best mate has suffered most of his adult life with this, at first they though the had IBS but after some more worrying symptoms he had a proper diagnosis. He's had all type of drugs including steroids which really messed him up, now 4 times a years he's having infusions which appear to be helping him immensely.
Hopefully they will manage your symptoms.
i found the laxatives they give you to take the worst part of the process when i had mine done around 12 months ago , i thought i'd had the shits before but those packets they give you to drink take it up to a nuclear level clearance- i literally felt hollow.
A work colleague has this and had a rough few months but is much better now.
Hope the treatment goes well.
Andy
Wanted - Damasko DC57
Well done Tony for seeking expert advice; many people do not because of their fears and the stigma surrounding bowel problems ... and the derision exhibited by ignoramuses with anything 'bowel / rectum / anus' associated. There is so much ignorance shown by so many people regarding bowel function and gut diseases. Current gastroenterological research suggests a strong link between bowel / digestive disorders and intestinal microbiota imbalance – but there are likely too many 'old school' gastroenterologists who fail to fully acknowledge the researchers' findings. Basically, evidence suggests that gut disorders (including ulcerative colitis and Crohn's) can be caused by e.g., (1) over-prescribed antibiotics and other medications, and (2) ultra-processed foods – both of which which can compromise the natural gut microbiota and thus the 'microbiome' which fuels the body's immune system - which prevents / fights infections and promotes healing. Ultra-processed foods contain unnatural additives, colourings, artificial flavourings and preservatives which can destroy healthy gut microbes. Antibiotics can be non-specific in their action and thus destroy not only disease causing microbes, but also our essential 'microbial good guys' (microbiota). Our natural gut microbiota, which are essential to a healthy microbiome and thus our wellbeing, have developed over millions of years - but during recent years have been hammered by all the mass produced foods on offer in the miles of supermarkets' shopping aisles – and also by some prescribed medications (especially antibiotics). Genetic factors are involved too and we do not all react to 'modern' foods and meds in the same ways. Tony there is a lot of information available online regarding improving diet, digestion and thus the microbiome – with resultant 'gut healing'. The microbiome is a vast subject but well worth studying.
I've experienced digestive problems over many years and at the last count have undergone at least 15 colonoscopies plus numerous sigmoidoscopies – but it was not until I was examined and treated by a 'new school' gastroenterologist who was prepared to offer surgery (the highly respected 'old school' gastroenterologist would not / could not offer surgery) that forty years of discomfort was remedied. I have also had numerous bowel polyps removed during routine colonoscopies – usually two or three are discovered and 'lassoed' / 'removed' during each colonoscopy (a painless procedure which I'm well used to and for which no anaesthetic is required - but a 'puff' of anaesthetic is provided if needed).
During the last 6 years I made the decision to change my diet with a view to improving my gut microbiome and general health – and I'm still researching and learning about same. Gastroenterologists and epidemiologists continue to research the gut microbiome and to offer and suggest, healthy / healthier diets to improve our health and remedy / prevent diseases. My digestion has improved by adopting a more diverse, more plant based, diet – but I still enjoy meats and fish too – and with no worries about weight gain. Most people are familiar with the '5 a day' veg and fruit target – but this is now outmoded. Latest research suggests and recommends we should be aiming for 30 (thirty) and more different plant based foods every week – which sounds a lot – but is very easily achievable – and it's not the quantity of each which is important – it's the diversity. Different and diverse gut microbiota require the different prebiotics (as distinct from probiotics) present in different types of plant foods. I make sure I eat e.g. some of the citrus fruits' skins (grated and added to my porridge) in addition to the fruit flesh ... and similarly also eat some diced organic banana skin (sometimes all of it ... delicious grilled with butter!).
BW, dunk
EDIT: One of the best prebiotic beverages is coffee – it's not the 'bad guy' so often portrayed by 'old school' dieticians and GPs https://mygutmatters.com/microbiota-...biotic-coffee/. ... paragraph 3 also mentions the '30 per week plant foods' target.
Last edited by sundial; 12th February 2023 at 00:10.
"Well they would say that ... wouldn't they!"
Sorry to hear. I got diagnosed with UC two years ago age 35. Family history of bowel issues of course.
I got diagnosed in the UK and was put on the Octasa pills with supplement foam applied “locally” (I’ll let the reader figure out!). Unfortunately my experience with NHS wasn’t the best, after the colonoscopy I got a doctors appointment 7 months later (!!!). Got the medication after making a fuss and pointing out that I had lost more than a stone in a month … (just to be clear the nurses were fantastic, so I guess more of a system error)
After moving back to Sweden I got a very bad flare up and ended up at the hospital for a week. I’ve never been admitted to hospital before and that was definitely a scary experience, again the staff were out of this world. Nurses are heroes everywhere!
I think gastro issues are more common here in the north and luckily the hospital is probably one of the best there is for IBD/UC. They put me on infusions and I’ve been fine since.
One important advice. You can have an active inflammation without symptoms so insist on checkups, don’t do like I did and assume it’s fine. I don’t particularly fancy it but here I’ve done them without the prep work at least, I think they go up just a bit. It’s important to get it fully under control.
Also look after your mental health. It was hard for me to realise I have a life long disease.
Last edited by jonasy; 11th February 2023 at 19:50.
Sent you a pm.
Best of luck - don’t lose heart - it can be managed.
^^^^^ #24:
" ... the derision exhibited by ignoramuses with anything 'bowel / rectum / anus' associated"
"Well they would say that ... wouldn't they!"
I have crohns, been diagnosed 10 years this year but I’d say it went 10 years undiagnosed prior to that. Once diagnosed I spent a couple of years trying various types and strengths of tablets and cutting out certain foods without much effect. Eventually I got put on injections (humira) and they have been life changing. I went from having a constant niggling pain to having pretty much no symptoms in about 8 weeks from taking the first injection.
My life is normal these days, I get an occasional flare up (can’t actually remember when I last had one) and there are occasions when I can feel one coming on but I can normally avoid it by changing my diet to more liquid based for a couple of days but apart from that I’ve been able to mostly eat what I like and live a normal life with it.
Antibiotic overuse is not only from that prescribed by medical practitioners – it's also due to antibiotics used to intensively rear livestock including farmed fish - which inevitably finds its way into the human food chain where it compromises the human microbiome and our immune system. This especially applied to Norwegian salmon farming but has in recent years been reduced – but antibiotics are still used by Scottish salmon farms.
Last edited by sundial; 11th February 2023 at 22:37.
"Well they would say that ... wouldn't they!"
Good luck Tony
Wishing you every success!
Jim
Close friends have found relief of their UC and Crohns disease from this man https://cy-smc.com/dr-dinos-xydas-profile/
Homeopathy, sure.
Thanks Duncan, and yes - I'm telling myself it could have been worse.
Yes, I hope so, although I suspect I've had this for a while now with very little by way of symptoms.
I guess non-cancerous polyps is about the best result you're going to get, so that must have been a relief.
Yeah, I know what you mean (which is why I've not left the house for a while, save for my hospital appointment). Sorry that t's been so challenging, Iain.
Sorry to read this, Tony. Thanks for the tips though and good luck with managing the changes. I’m sure it’ll all seem very manageable in a few months time.Thanks very much, guys.
I'm interested in these infusions, and will ask about them during my follow-up appointment. Thanks very much.
Yes, they really have to be experienced!
Thanks matey.
Lots of people are conned by snake oil practitioners and homoeopaths especially in Malta and Cyprus.
And regarding chelation therapies:
"The American College of Medical Toxicology and the American Academy of Clinical Toxicology warn the public that chelating drugs used in chelation therapy may have serious side effects, including liver and kidney damage, blood pressure changes, allergies and in some cases even death of the patient"
And I could write a book on the non-benefits of homoeopathy. I was once a long term out-patient patient at The Royal London Homoeopathic Hospital (funded by the NHS !!) where I witnessed medically qualified doctors actually believing in their quackery. Homoeopathy is nonsense but desperately ill people latch onto anything they think might offer a remedy / cure.
Homoeopathy is pure quackery and the qualified medical practitioners who drift into it need their bumps feeling. In brief, a highly diluted homoeopathic 'remedy' (allegedly containing a "shadow" of the original mixture) is akin to peeing in the Atlantic Ocean and claiming that after a storm, a "shadow" or "memory" of your pee is still present.
In addition to over-prescribed antibiotics, one of the main causes of my own health problems was smoking. When I managed to quit tobacco my health improved dramatically.
Last edited by sundial; 12th February 2023 at 12:54.
"Well they would say that ... wouldn't they!"
Really grateful for that, Dunk, and my wife is very much aligned with you on these issues. Lots to think about and look into.
I know what you mean about accepting that you have the condition and what it means going forward. Thanks very much for your response, and good luck coming to terms with, and managing it now (and again, the infusions sound like something I need to know more about).
Thank you - I'll reply imminently.
I'm so happy for you that it's now under control. Hope it stays that way.
Actually, Dunk, I recently had four consecutive courses of antibiotics to tackle a really stubborn infection. I fear that may have been the straw that broke the camel's back.
Thanks Jim!
I think my focus is going to be conventional medicine until it's completely under control. Thereafter I'm happy to consider less conventional approaches along with the permanent lifestyle changes I'll need to make.
Tony, During the late 60s and early 1970s my GPs were forever prescribing the antibiotic Oxytetracycline for very stubborn acne – in those days it was the recognised and very commonly used remedy. During one very prolonged course when I was taking 250mg oxytetracycline 3x daily for many weeks, I woke up one night feeling as though I was dying - the pain was so severe. Transpired that the long term use of the antibiotic had compromised / destroyed the mucus membrane of my gut. Remedying same took many weeks – requiring copious amounts of antacids. Thereafter I continued to suffer gut problems for years necessitating many hospital out-patient bowel examinations - when the consultants invariably advised, "You have a very thin mucus membrane ..." – which I was already aware of, but in those far off days they offered no real remedy. Remedies for same and preventative measures were not on their radars. The long term use (over years) of oxytetracycline was most likely the main cause of all my subsequent gut problems. Antibiotics can be life-savers – but all too often years ago medical practitioners failed to take into account their short term and long term side effects. The gut's mucus membrane comprises in part, our natural microbiota which collectively form the gut's microbiome, which protects our digestive system and thus prevents, e.g., ulcers. Thus very possible Tony that several courses of antibiotics exacerbated your symptoms by further eroding the mucus membrane. I hope you will soon be a lot better Tony.
EDIT: One alleged remedy for gut microbiota (microbiome) imbalance caused by antibiotics is to take specific types of probiotics, i.e., e.g., live yogurt including kefir type fermented products.
However, the latest research suggests that kefir, kombucha, live yogurts and other live fermented products , should not be taken after courses of antibiotics. To do so risks the surviving live microbes in those fermented drinks / yogurts becoming too dominant in the digestive system – at the expense of other beneficial (but now depleted by the antibiotics) microbiota being compromised / destroyed – thus creating an even worse microbiome imbalance which can further compromise the immune system. After a course of antibiotics, it's far better to achieve a normal microbiome balance by consuming as wide a variety of plant based foods as possible ... which means considering eating the now regularly recommended 30 plus plant foods every week. Those plant based foods all contain prebiotics in the form of e.g., different types of soluble fibres – on which gut microbes 'feed' and thrive. They also contain their own natural probiotics in the form of e.g., a raw fruit's natural microbiome (which is on the fruit's skin) - and which can 'naturally' boost the human body's own microbiome. Variety and diversity is the key and the greater the prebiotic diversity, the greater the resultant diversity of the body's actual microbiota – which form the microbiome and maintain a healthy immune system.
FURTHER EDIT: (because the subject is 'topical'). Visit most supermarkets and you'll see cold cabinets' shelves full of the latest fad foods which the manufacturers' sales and marketing experts and foodie journalists try and convince us are essential to our health and wellbeing. Amongst these are the so called healthy KEFIR fermented products (usually milk based) and whch are allegedly full of a vast range (compared to regular yogurts) of probiotics, i.e. live microbes. However, on inspecting the tubs' and cartons' labels, very few kefir products actually state which types of live microbes are included – but they usually mention something similar to "contains fifteen different live cultures to promote healthy ... " etc etc . Some mention 'thirty' live cultures. Kefir live fermented products appear to be unregulated as regards descriptions of actual ingredients and live cultures (probiotics) therein. Manufacturers are not obliged to mention their 'secrets'. Consumers are bamboozled with claims written by dieticians and foodie journalists regarding the alleged benefits of such products. What the manufacturers and writers and broadcasters do not mention, is that most of the flavoured kefir products (and flavoured yogurts) likely have very few and in many cases, ZERO live microbes present - because the SUGARS in the fruit flavourings destroy the live microbe probiotics. Thus we end up eating dead microbes ... not benefical live microbes / probiotics. Try making a yogurt culture from a 'live' fruit flavoured yogurt or kefir you'll likely not succeed because the original product's live culture has been killed by the sugar. But try making a live culture from a PLAIN live kefir or yogurt and you'll likely succeed – because there is usually no added sugar included in plain unflavoured fermented yogurts / kefirs. However, manufacturers coninue to try and tell us how 'healthy' their fruit flavoured 'live'? fermented products are ... and most consumers appear to believe their sales nonsense.
If you are considering eating any live kefir and yogurt products, the only types likey to contain the beneficial LIVE microbes are the PLAIN varieties.
Last edited by sundial; 12th February 2023 at 14:48.
"Well they would say that ... wouldn't they!"
All the best pal
[QUOTE=learningtofly;6158038]Any chance of you moving in for a while, Dunk?
Look forward to reading you're seeing some light at the end of the tunnel Tony & that you are well on the way to a full recovery
BW, dunk
"Well they would say that ... wouldn't they!"
I know we've been chatting for the last couple of weeks on PM Tony, but I just wanted to wish you publicly all the best, much strength and good management of this.
There'll be changes, but changes can be managed and often bring more strength than you'd ever imagine. You're a top bloke and I consider you a good friend, so stay on top of it mate and carry on "watch-ing". This place wouldn't be the same without you.
[QUOTE=sundial;6158041]Cheers Dunk.Any chance of you moving in for a while, Dunk?
Look forward to reading you're seeing some light at the end of the tunnel Tony & that you are well on the way to a full recovery
BW, dunk
That’s really kind of you, Rob. Thanks mate.
Just to add I was once advised that something called Bio Kult is beneficial to take. Especially after a course of antibiotics.
Hi
Would advise that you keep an eye on the new biomedicines. Already approved by the NICE institute there is a panel of monoclonal antibodies, and also JAK inhibitors and S1P interference small molecules.
Monoclonal antibodies are against several mediators of inflammatory response, and include anti-TNF antibodies, used historically for Rheumatoid Arthritis and Psoriasis.
Keep yourself informed and perhaps understand if there are National Reference Centers in your region, where they may have a different approach, particularly for early disease.
Best
Franco
While not having UC I have noticed that I cannot tolerate spicy or hot food as I used to and apart from sweet chilli sauce hardly ever eat anything hotter or spicier. Gone are the days of having Encona Hot Pepper sauce or even Tabasco. There just no point eating food which makes you feel worse. There are plenty of great herbs and spices which can be used, of course.
I wish you all the best, Tony - you'll adapt and be fine. Keep your body strong too with exercise - any advice or tips just PM me.
This sounds familiar what happened to me and changed my life forever. Antibiotics for years destroyed my micro biome and for me there is no way back.
After years of trying everything I’m now on a vegetable diet and plenty of oat bran that feeds to good bacteria. That’s made the best difference. Live yoghurt and kefir made me worse.
All the best to you Tony. I think it’s great that you’ve shared this experience.
I am also living with this for the last two years.
I have been told that my case is mild, at least currently, but it still changed my life, especially from a psychological point of view.
All the best Tony - glad it was not the prognosis you feared. Sounds like you have a good plan in place !
cheers
matt
Tony-first of all I wish you all the best. There are lots of treatment options now and it sounds like you are receiving good care.
I just want to highlight this issue though: if anybody has symptoms that are new to them as you have listed above, I would advise them to seek help from their GP initially.
The bowel screening programme is for "screening" people who do not have symptoms.
Patients WITH symptoms need investigation, and a different pathway will be used, which might include a stool sample kit and/or colonoscopy/CT scan etc. It might seem like semantics, but it's important. In our area, the stool test for "screening" is less sensitive than the stool test for investigation.
Obviously, I am talking as a GP here, and I don't really want to be slammed as "sitting on my arse avoiding seeing patients", and I understand that access to a GP can be a challenge in some areas....
The take home message though-DON'T IGNORE bowel symptoms.
All the best,
Richard
Thanks for the clarification, Richard.
As an aside, I had a call with the IBD unit this morning. There’s some concern that the steroids I’ve been given haven’t made more of an impact yet. Consequently, if there’s no change by Monday I’m going to be admitted for a week so that I can be put on an IV and given some additional care/drugs/infusions.
It really couldn’t have come at a worst time, as I’ve just kicked off a project that’s been two years in the planning.
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