I am not sure what this reply is; an attempt at solidarity perhaps. It will be graphic. You may not wish to read it. If you are currently eating, or are planning to, then you definitely should not be reading it.
Many years ago I started getting very unusual and intense stomach pains. These were accompanied by small amounts of blood in my stool. Having given these unwelcome developments careful consideration, I decided that the most prudent course of action would be to ignore them until they went away. Seven months later, the spots of blood had become a biblical torrent. There was so much blood. It was horrifying, like the elevator scene in The Shining. The pain was occasionally so bad that I would suddenly find myself lying on the ground, utterly bewildered as to how I had got there. A split second later, whatever internal mechanism had temporarily disabled my pain receptors, after I had blacked-out, would disengage and I would be engulfed by an agony so exquisite that to describe it as pain would be like comparing the radiant face of God to a 40 watt lightbulb. The experience was so overwhelming, and so over the top, that the only response left at my disposal was hilarity. For a while I assumed that was how I would die: Unable to stand, laughing hysterically into the carpet.
My GP, who has the bedside manner of one of those giant stone heads on Easter Island, and who is not unusually a very empathetic or proactive man, listened to my symptoms and then immediately referred me to hospital. I went through a battery of tests. Initially I was diagnosed with ulcerative colitis. An anomaly in my liver, that showed up in a CT scan, and later in more detail on an MRI, was eventually diagnosed as Primary Sclerosing Cholangitis. The two conditions are linked in some way that is not well understood. My non-medical opinion is that the UC is a product of the PSC and that, where both conditions are present, UC should be treated as a symptom of bile duct disease, as opposed to a co-morbidity.
One thing that continues to amuse me, when discussing my ulcerative colitis with a nurse or a doctor who I haven't met before, is the etiquette of finding mutually-acceptable terminology for describing bowel movements. It is comparable to the opening of a game of chess against an unfamiliar opponent; a series of tentative preliminary moves, where neutral vocabulary such as 'yield' and 'consistency' – words that I would rather were kept out of the bathroom – are proffered.
A registrar, who I think was fairly new in the profession, presented me with a copy of the Bristol Stool Chart. I am sure you are familiar with it. It is a sheet of paper, or laminated card, with pictures of different types of stool on it. You are supposed to select the one that best represents your bowel movements. Far from being a scatological slur against the people of Bristol – the city that gave the world Banksy – the chart gets its name from the Bristol Royal Infirmary, where it was developed. I told the registrar that nothing on the chart compared to what I was dealing with and that it urgently needed an addendum. I have strong opinions regarding the limitations of this diagnostic tool.
When I was first told that I had ulcerative colitis, my mind immediately jumped a few years back in time to an occasion where, without any warning, I shat myself in the streets of Kolkata. I had been dealing with the kind of prolonged gastric illness that westerners visiting India will commonly experience. The previous evening, perhaps unwisely, I had sunk a couple of beers at Fairlawns – a throwback to the days of the Raj that had somehow survived the end of British colonialism.
I was living in a hotel with a Dutch girl, who I will call Margreet. She was nice but very naïve and a bit of a handful, always throwing out curveballs. Her first words, croaked to me one morning, while I still wasn't properly awake, were: “I need to see a gynaecologist.” She had come across the Nepalese border with her trainers stuffed full of pot. We lay on the bed and smoked her sock weed while she bemoaned my disinterest in discouraging her from purchasing and then eating large quantities of cake.
People often journey to India from the west seeking religious enlightenment. As I waddled the two miles back to my hotel in the early morning heat, with my underwear full of congealing diarrhoea, I discovered my mantra: “Please don't let Margreet be there”. As I passed the cricket ground, I remembered something else. The water for the entire street was turned off at midday. I had twenty minutes. I ran, leaving a trail of slurry behind me. Outside the hotel, I stuffed my trouser legs into my socks. My prayers had been answered. Margreet was out and never learned of my accident. I undressed while trying not to look too hard. What I saw was pretty bad. I rinsed both myself and my jeans thoroughly. I threw my socks and underwear out the window where they plummeted several storeys into an alleyway below.
I had a vision that my life with ulcerative colitis would be like that morning in Kolkata and so far it hasn't. Having lived with the disease for a while, certain patterns have become evident. I have gained an understanding of how my body functions and how I can minimise my risk of an accident, for example by timing my meals. This will be of absolutely no help to you, but the one thing that improved my colitis immeasurably was working with a kettlebell – I don't know if it's the motion or the bending of the body. All I know is that it works. I wonder, is there some kind of massage or rehab exercise that might promote bowel movements in someone of your condition?
I do have one piece of advice, as you prepare to re-enter the world: Learn to separate your sense of dignity from your condition. I have met people with chronic illness who conflate one with the other and they are not happy souls. Your dignity should come from those areas of your life that you do control. You will encounter members of the public who, thoughtlessly or cruelly, will regard you as undignified on the basis of your condition. You need to develop the mental fortitude to rise above that nonsense.
This is a very funny piece of writing. I agree about the Bristol Stool chart, I once cared for someone who produced what I can only describe as 'sticky glue' which, on attempting to clean it, stuck to absolutely everyone and everything. There was a brilliant comedy by Jo Brand called 'Getting On' about a geriatric ward where a lot of the humour was based on bodily functions, but I don't think you can get it on iPlayer or anywhere now, which is a shame as I found it comforting whilst in the middle of these things x
Sam, I love your writing but find it curious why I find it so hilarious to read of someone else's discomfort, especially when it involves basis bodily functions. Could be catharsis, haha not me shitting myself, or perhaps I'm just an arsehole. No pun intended.
It's funny because my day started with an edema followed by 2 hours in a shitty bed and then witty remarks about the "large amount produced by my small body". Even the head nurse was called in to admire it.
Is it actually funny for me? Not at all. But, given the circumstances, I cannot do otherwise. Depending on others is a pain, when it comes to things you would do behind closed doors it is pure humiliation.
But your focus, our focus, should be on other matters we may have a better chance to get some control upon. And I assure you that with the right diapers the smell is not an issue.
I wonder, reading about this issue that affects so many, why not put an ostomy bag into the stomach and reroute the bowels. No digging in your ass and it all goes into a bag whenever it wants to.
I am sure they have reasons not to subject people to such a surgery but it would take care of the problem. Meanwhile, i worry more about where you will go. That is a biggg concern. Do write us what your options are. I am writing from the US so cannot offer any concrete help about it. Otherwise i would.
I hope you are on strong antidepressants. Effexor is very good because it has a strong antianxiety component. I have been on it since 2002. Take care, you are in our thoughts.
It is, truly, a really shitty topic. I suppose so far as anyone thinks about loss of function through spinal injury they’re thinking of being less able to move around freely- maybe sex, sensation. But freedom in respect of these most basic of functions is in many ways a much, much bigger deal. I’m sure everyone here feels for you and very much hopes you’re able to make progress in this respect. There doesn’t seem to be any way to get to be ok about this except getting used to it through time. And trying to find the dark humour in it. You can’t continue to feel mortified by it forever, one would hope, anyway. I have a friend that shits himself or has shitting related incidents rather often, in pubic, in pubs... on public transport... shitting in flower beds... usually through being the worse from booze. He’s an extremely smart, articulate friend with a very serious job. The tales he tells are absolutely hilarious- the sort of tale that makes you laugh until your guts hurt and you’re gasping for breath. We all take the kids out of him for it- it’s kind of his USP. The thing about him is too that unlike practically anyone else I know, he’s completely unembarrassed by all this. He’s happy to recount the tales again and again, including showing the text conversations with his wife where she’s admonishing him for making the washing machine stink again. So... while your situations are nothing like alike, and I’m not making light of anything about your situation, I just wonder if eventually there might be a sliver of something like this other guy - just saying fuck it and glorying in all of the absurd grotesque details to the delight of your friends.
On the upside, I’m glad you’re enjoying the comments as much as others here enjoy reading your blog. I know you’ll get some joy back in your life in due course. You just will. Although the stress and anxiety of your current situation really does seem as near to intolerable as imaginable at present. Hang on there - it’s all any of us can do. Your friends and family will help get you through.
I LOVE your honesty. This is a really important conversation whether we likr it or not.
Shit is not something many people talk about let alone name. More often relegated to a designated description eg number two; poo; dirty; crap; bowel movement; good/bad result ir a raised eyebrow and sniff(!).
And when it your body and your carers it truly is SHIT.
As a long time carer it has been my experience that early on in my working life it became a matter of fact for me to efficiently assist but never for the person requiring assistance.
It's very difficult to be the one robbed of the privilege of independence.
Regularity is helpful for turning the situation into a matter of fact......grin and bear it or close your eyes and get through. However as a carer, i never was offended or surprised by 'accidents'. It's all part of the process of adaptation but i hear your horror in the situation.
Your consultant WILL have plans and options for you so you rightly trust his advice.
During the early stages of my brothers increased care needs I watched him shrink with embarrassment when being assisted. Gradually he found closing his eyes and putting the radio on helped.
I'm going on a bit here Paul but i did hear you say you enjoy replies to your post!!
Fortunately or unfortunately, shit has been a feature in my world of care since my early teens and that's a long time ago.
What i have seen is major improvements in bowel/bladder hygiene anf plenty of options available to support people with varying experiences of control/loss of control.
This is a very tough time for you Paul and I salute your capacity to take some control with your word.
Don't underestimate the value your writing will have for others now and into the future.
Got Oliver on (the musical) I know every single song in it because Mum a devotee of the musical, had the LP. My growing up was punctuated with music and film. Just so you know whilst I am replying, the artful dodger is at work, as is Fagin. (pick a pocket). Down to it then - and there is no way around it either - our bodily functions every so often, or in your case, all the time, make themselves a giant feature in our daily lives. There are charts you know, that describe poo and what is ok to a down scale of what isn't. And then there are people who have jobs to do with that too. I can't stand being touched anywhere really by professionals, so that's the starting point. If I can avoid an examination of any description - yes siree. So you are a complete captive to yours - it's hateful and abhorrent to you but the only saving grace to it, is the person who is experienced in all of this malarky, and who will try their damndest to find you a way out. You are fixed on problems that could occur too - in that future you're going to have. All I can say to that is, life is full of problems whatever your starting point. People are going to be far more forgiving, far more patient, and far more caring that you are! I had a funny flash of insight a few months back when feeling down. And really it was just about loving yourself - giving yourself a break - realising that people going to love you whatever so perhaps you could do that too. It was lovely to read your first bit too, - you are vulnerable and fragile now but that won't always be the case - I'm going to repeat myself - give yourself a break, go steady and who knows that in itself might work some magic. As for the weak stomach - Paul I used to go dizzy if someone started describing a physical ailment, I went dizzy in hospitals all of that, well got over it - just went through all the barriers bit by bit. And having animals well always clearing up after them. It's a labour of love it is. Oliver is still on, Nancy and Bill plus Bullseye are all introduced - what a story. I do love Dickens. Back to my life in the little village of Seamer in North Yorkshire I go - tonight glued to Strictly Come Dancing tis the Final - I do scribbles of the dancers and post them all on X - it motivates me to sketch which I love. Keep sane, and thank you for your writings -with lots of thoughts and care, Maddi
Sharp observations as always, Paul. You will get help. Students will take a teacher through a difficult situation with kindness and sensitivity and the pleasure of being able to do something important for someone in the world rather than just sitting there like part of the furniture. Personal experience from teaching in university for many years. Kxx
This is such an important topic and one that is absolutely at the heart of one’s wellbeing. Even a small improvement sounds like it would have massive benefits, so I hope you and your team will continue to try different things. There will be a regimen that works better for your body, you just have to find it.
People don't talk about bowel issues enough, either, and so this part of being cared for and caring for someone is often hidden. I think Bowel Babe did a great job of talking about bowel cancer symptoms. It is illuminating to shine a light on this, but I get that the cost to you of having these problems, and being so open about them, is high. Hannah x
Hi Paul, it's really difficult to know what to say, for mere good wishes turn pale at the circumstances you are enduring. I still often recall the time we last met in London, before Huahui and I went back to China. I remember I said to you that after this dinner it would be hard to predict when and where we'll see each other again, and your reply was that "the world is a small place". I really hope I could go back to the UK and meet with you and Robin again.
Your writing is, as always, insightful and incredibly heartfelt. You continue to write about things that most people prefer not to discuss and you are very open about your life. Please continue to challenge people's expectations despite the huge effort it must take.
The reality of shit is shit. I cannot disagree with that. I think the idea of having the radio on and singing along is probably a good one, but takes some chutzpah to carry off at this stage. Everything must seem uncertain right now- where you will live, how you will cope, even when you will next go to the loo. Your writing is great, though.
Hi, writing from Portugal to let you know that I admire the pragmatic way you share your anguish from the apparently trivial to the huge ones that cames ahead. I have a friend in the same situation and so for me what you write are not just words and ideas. Just keep going, keep moving, don't mind the speed. Looking forward to hear more from you.
I was full of shit as a child. Hirschsprung's disease is what I had. An operation saved me. Turns out 50% of kids who have that operation end up with fecal incontinence. What a joy to be in that 50%! Life is indeed shitter when you have problems with shit.
I am not sure what this reply is; an attempt at solidarity perhaps. It will be graphic. You may not wish to read it. If you are currently eating, or are planning to, then you definitely should not be reading it.
Many years ago I started getting very unusual and intense stomach pains. These were accompanied by small amounts of blood in my stool. Having given these unwelcome developments careful consideration, I decided that the most prudent course of action would be to ignore them until they went away. Seven months later, the spots of blood had become a biblical torrent. There was so much blood. It was horrifying, like the elevator scene in The Shining. The pain was occasionally so bad that I would suddenly find myself lying on the ground, utterly bewildered as to how I had got there. A split second later, whatever internal mechanism had temporarily disabled my pain receptors, after I had blacked-out, would disengage and I would be engulfed by an agony so exquisite that to describe it as pain would be like comparing the radiant face of God to a 40 watt lightbulb. The experience was so overwhelming, and so over the top, that the only response left at my disposal was hilarity. For a while I assumed that was how I would die: Unable to stand, laughing hysterically into the carpet.
My GP, who has the bedside manner of one of those giant stone heads on Easter Island, and who is not unusually a very empathetic or proactive man, listened to my symptoms and then immediately referred me to hospital. I went through a battery of tests. Initially I was diagnosed with ulcerative colitis. An anomaly in my liver, that showed up in a CT scan, and later in more detail on an MRI, was eventually diagnosed as Primary Sclerosing Cholangitis. The two conditions are linked in some way that is not well understood. My non-medical opinion is that the UC is a product of the PSC and that, where both conditions are present, UC should be treated as a symptom of bile duct disease, as opposed to a co-morbidity.
One thing that continues to amuse me, when discussing my ulcerative colitis with a nurse or a doctor who I haven't met before, is the etiquette of finding mutually-acceptable terminology for describing bowel movements. It is comparable to the opening of a game of chess against an unfamiliar opponent; a series of tentative preliminary moves, where neutral vocabulary such as 'yield' and 'consistency' – words that I would rather were kept out of the bathroom – are proffered.
A registrar, who I think was fairly new in the profession, presented me with a copy of the Bristol Stool Chart. I am sure you are familiar with it. It is a sheet of paper, or laminated card, with pictures of different types of stool on it. You are supposed to select the one that best represents your bowel movements. Far from being a scatological slur against the people of Bristol – the city that gave the world Banksy – the chart gets its name from the Bristol Royal Infirmary, where it was developed. I told the registrar that nothing on the chart compared to what I was dealing with and that it urgently needed an addendum. I have strong opinions regarding the limitations of this diagnostic tool.
When I was first told that I had ulcerative colitis, my mind immediately jumped a few years back in time to an occasion where, without any warning, I shat myself in the streets of Kolkata. I had been dealing with the kind of prolonged gastric illness that westerners visiting India will commonly experience. The previous evening, perhaps unwisely, I had sunk a couple of beers at Fairlawns – a throwback to the days of the Raj that had somehow survived the end of British colonialism.
I was living in a hotel with a Dutch girl, who I will call Margreet. She was nice but very naïve and a bit of a handful, always throwing out curveballs. Her first words, croaked to me one morning, while I still wasn't properly awake, were: “I need to see a gynaecologist.” She had come across the Nepalese border with her trainers stuffed full of pot. We lay on the bed and smoked her sock weed while she bemoaned my disinterest in discouraging her from purchasing and then eating large quantities of cake.
People often journey to India from the west seeking religious enlightenment. As I waddled the two miles back to my hotel in the early morning heat, with my underwear full of congealing diarrhoea, I discovered my mantra: “Please don't let Margreet be there”. As I passed the cricket ground, I remembered something else. The water for the entire street was turned off at midday. I had twenty minutes. I ran, leaving a trail of slurry behind me. Outside the hotel, I stuffed my trouser legs into my socks. My prayers had been answered. Margreet was out and never learned of my accident. I undressed while trying not to look too hard. What I saw was pretty bad. I rinsed both myself and my jeans thoroughly. I threw my socks and underwear out the window where they plummeted several storeys into an alleyway below.
I had a vision that my life with ulcerative colitis would be like that morning in Kolkata and so far it hasn't. Having lived with the disease for a while, certain patterns have become evident. I have gained an understanding of how my body functions and how I can minimise my risk of an accident, for example by timing my meals. This will be of absolutely no help to you, but the one thing that improved my colitis immeasurably was working with a kettlebell – I don't know if it's the motion or the bending of the body. All I know is that it works. I wonder, is there some kind of massage or rehab exercise that might promote bowel movements in someone of your condition?
I do have one piece of advice, as you prepare to re-enter the world: Learn to separate your sense of dignity from your condition. I have met people with chronic illness who conflate one with the other and they are not happy souls. Your dignity should come from those areas of your life that you do control. You will encounter members of the public who, thoughtlessly or cruelly, will regard you as undignified on the basis of your condition. You need to develop the mental fortitude to rise above that nonsense.
You write wonderfully well about terrible challenges met with great fortitude. What a life! Admiration.
This is a very funny piece of writing. I agree about the Bristol Stool chart, I once cared for someone who produced what I can only describe as 'sticky glue' which, on attempting to clean it, stuck to absolutely everyone and everything. There was a brilliant comedy by Jo Brand called 'Getting On' about a geriatric ward where a lot of the humour was based on bodily functions, but I don't think you can get it on iPlayer or anywhere now, which is a shame as I found it comforting whilst in the middle of these things x
Sam, I love your writing but find it curious why I find it so hilarious to read of someone else's discomfort, especially when it involves basis bodily functions. Could be catharsis, haha not me shitting myself, or perhaps I'm just an arsehole. No pun intended.
It's funny because my day started with an edema followed by 2 hours in a shitty bed and then witty remarks about the "large amount produced by my small body". Even the head nurse was called in to admire it.
Is it actually funny for me? Not at all. But, given the circumstances, I cannot do otherwise. Depending on others is a pain, when it comes to things you would do behind closed doors it is pure humiliation.
But your focus, our focus, should be on other matters we may have a better chance to get some control upon. And I assure you that with the right diapers the smell is not an issue.
Stay strong!
I wonder, reading about this issue that affects so many, why not put an ostomy bag into the stomach and reroute the bowels. No digging in your ass and it all goes into a bag whenever it wants to.
I am sure they have reasons not to subject people to such a surgery but it would take care of the problem. Meanwhile, i worry more about where you will go. That is a biggg concern. Do write us what your options are. I am writing from the US so cannot offer any concrete help about it. Otherwise i would.
I hope you are on strong antidepressants. Effexor is very good because it has a strong antianxiety component. I have been on it since 2002. Take care, you are in our thoughts.
I really enjoy your writing. 🙂
It is, truly, a really shitty topic. I suppose so far as anyone thinks about loss of function through spinal injury they’re thinking of being less able to move around freely- maybe sex, sensation. But freedom in respect of these most basic of functions is in many ways a much, much bigger deal. I’m sure everyone here feels for you and very much hopes you’re able to make progress in this respect. There doesn’t seem to be any way to get to be ok about this except getting used to it through time. And trying to find the dark humour in it. You can’t continue to feel mortified by it forever, one would hope, anyway. I have a friend that shits himself or has shitting related incidents rather often, in pubic, in pubs... on public transport... shitting in flower beds... usually through being the worse from booze. He’s an extremely smart, articulate friend with a very serious job. The tales he tells are absolutely hilarious- the sort of tale that makes you laugh until your guts hurt and you’re gasping for breath. We all take the kids out of him for it- it’s kind of his USP. The thing about him is too that unlike practically anyone else I know, he’s completely unembarrassed by all this. He’s happy to recount the tales again and again, including showing the text conversations with his wife where she’s admonishing him for making the washing machine stink again. So... while your situations are nothing like alike, and I’m not making light of anything about your situation, I just wonder if eventually there might be a sliver of something like this other guy - just saying fuck it and glorying in all of the absurd grotesque details to the delight of your friends.
On the upside, I’m glad you’re enjoying the comments as much as others here enjoy reading your blog. I know you’ll get some joy back in your life in due course. You just will. Although the stress and anxiety of your current situation really does seem as near to intolerable as imaginable at present. Hang on there - it’s all any of us can do. Your friends and family will help get you through.
Some typos there - wish I could edit!
Hi Paul.
I LOVE your honesty. This is a really important conversation whether we likr it or not.
Shit is not something many people talk about let alone name. More often relegated to a designated description eg number two; poo; dirty; crap; bowel movement; good/bad result ir a raised eyebrow and sniff(!).
And when it your body and your carers it truly is SHIT.
As a long time carer it has been my experience that early on in my working life it became a matter of fact for me to efficiently assist but never for the person requiring assistance.
It's very difficult to be the one robbed of the privilege of independence.
Regularity is helpful for turning the situation into a matter of fact......grin and bear it or close your eyes and get through. However as a carer, i never was offended or surprised by 'accidents'. It's all part of the process of adaptation but i hear your horror in the situation.
Your consultant WILL have plans and options for you so you rightly trust his advice.
During the early stages of my brothers increased care needs I watched him shrink with embarrassment when being assisted. Gradually he found closing his eyes and putting the radio on helped.
I'm going on a bit here Paul but i did hear you say you enjoy replies to your post!!
Fortunately or unfortunately, shit has been a feature in my world of care since my early teens and that's a long time ago.
What i have seen is major improvements in bowel/bladder hygiene anf plenty of options available to support people with varying experiences of control/loss of control.
This is a very tough time for you Paul and I salute your capacity to take some control with your word.
Don't underestimate the value your writing will have for others now and into the future.
Sending best wishes to you.💚
Got Oliver on (the musical) I know every single song in it because Mum a devotee of the musical, had the LP. My growing up was punctuated with music and film. Just so you know whilst I am replying, the artful dodger is at work, as is Fagin. (pick a pocket). Down to it then - and there is no way around it either - our bodily functions every so often, or in your case, all the time, make themselves a giant feature in our daily lives. There are charts you know, that describe poo and what is ok to a down scale of what isn't. And then there are people who have jobs to do with that too. I can't stand being touched anywhere really by professionals, so that's the starting point. If I can avoid an examination of any description - yes siree. So you are a complete captive to yours - it's hateful and abhorrent to you but the only saving grace to it, is the person who is experienced in all of this malarky, and who will try their damndest to find you a way out. You are fixed on problems that could occur too - in that future you're going to have. All I can say to that is, life is full of problems whatever your starting point. People are going to be far more forgiving, far more patient, and far more caring that you are! I had a funny flash of insight a few months back when feeling down. And really it was just about loving yourself - giving yourself a break - realising that people going to love you whatever so perhaps you could do that too. It was lovely to read your first bit too, - you are vulnerable and fragile now but that won't always be the case - I'm going to repeat myself - give yourself a break, go steady and who knows that in itself might work some magic. As for the weak stomach - Paul I used to go dizzy if someone started describing a physical ailment, I went dizzy in hospitals all of that, well got over it - just went through all the barriers bit by bit. And having animals well always clearing up after them. It's a labour of love it is. Oliver is still on, Nancy and Bill plus Bullseye are all introduced - what a story. I do love Dickens. Back to my life in the little village of Seamer in North Yorkshire I go - tonight glued to Strictly Come Dancing tis the Final - I do scribbles of the dancers and post them all on X - it motivates me to sketch which I love. Keep sane, and thank you for your writings -with lots of thoughts and care, Maddi
I love your replies Maddi - just wanted to wish you well
In the little
Village of Seamer.
Sharp observations as always, Paul. You will get help. Students will take a teacher through a difficult situation with kindness and sensitivity and the pleasure of being able to do something important for someone in the world rather than just sitting there like part of the furniture. Personal experience from teaching in university for many years. Kxx
Maybe you could consider a colostomy, if you continue to have difficulties in bowel management. It usually improves quality of life.
There are many youngsters waiting for you in the University classes, I hope you get there soon and as comfortably as possible.
This is such an important topic and one that is absolutely at the heart of one’s wellbeing. Even a small improvement sounds like it would have massive benefits, so I hope you and your team will continue to try different things. There will be a regimen that works better for your body, you just have to find it.
(You might be able to manage some aspects for yourself. If not now, later. The necessary aids are all available in the uk: https://youtu.be/4BkdGF0DB8M?si=undWckGihT_7jiYM)
People don't talk about bowel issues enough, either, and so this part of being cared for and caring for someone is often hidden. I think Bowel Babe did a great job of talking about bowel cancer symptoms. It is illuminating to shine a light on this, but I get that the cost to you of having these problems, and being so open about them, is high. Hannah x
Hi Paul, it's really difficult to know what to say, for mere good wishes turn pale at the circumstances you are enduring. I still often recall the time we last met in London, before Huahui and I went back to China. I remember I said to you that after this dinner it would be hard to predict when and where we'll see each other again, and your reply was that "the world is a small place". I really hope I could go back to the UK and meet with you and Robin again.
Paul,
Your writing is, as always, insightful and incredibly heartfelt. You continue to write about things that most people prefer not to discuss and you are very open about your life. Please continue to challenge people's expectations despite the huge effort it must take.
David.
The reality of shit is shit. I cannot disagree with that. I think the idea of having the radio on and singing along is probably a good one, but takes some chutzpah to carry off at this stage. Everything must seem uncertain right now- where you will live, how you will cope, even when you will next go to the loo. Your writing is great, though.
Hi, writing from Portugal to let you know that I admire the pragmatic way you share your anguish from the apparently trivial to the huge ones that cames ahead. I have a friend in the same situation and so for me what you write are not just words and ideas. Just keep going, keep moving, don't mind the speed. Looking forward to hear more from you.
I was full of shit as a child. Hirschsprung's disease is what I had. An operation saved me. Turns out 50% of kids who have that operation end up with fecal incontinence. What a joy to be in that 50%! Life is indeed shitter when you have problems with shit.