The mental side of physical illness

sullivlo

I've a long term illness. It's embarrassing. I suffer from chronic constipation which can lead to obstructions in my bowel. I've been in and out of hospital for years with it. There is no cure. I must simply live with my symptoms and control them via medication.

This week I'm bad. I haven't had a poo in three weeks. We're being aggressive with medication but it's not working quickly enough. I feel like crap (pardon the pun). I'll spare the details. I'm under medical supervision by the way, not just deciding what to do myself.

Anyway. These bad flare ups happen every few months. During a flare I can go maybe a month without going. General day to day, I take laxatives daily and poo once a week. Each time I get a flare up, it drains me. Physically. Emotionally. I find it hard to accept that my body simply gives up and can't perform a basic function. I feel like I'm wasting my doctors time by going to her when it's bad. I equally feel that when I'm in hospital having been admitted that I'm taking up space and wasting a bed space where a sick person could be.

How do people deal with their body not functioning properly? I'm finding it increasingly tough.

R.D. aka MR.D

Have you gone to the very ends of investigation with the problem? Recently?
There are always new developments in the medical field.

Turtwig

Just because there's no cure doesn't mean they are no supportive treatments. You're still the very same person you were before you got sick. Only now you have a condition for which there is no known cure. That doesn't mean there are no management techniques and supports for you. Medicine isn't about cures, it's about quality of life. Your quality of life is significantly suffering. So you deserve support every bit as much as those who you feel deserve it more. Illness can affect a person's sense of self worth. Have you considered getting counseling? What you need is a strong support structure to help manage your condition. That includes family, friends, and competent and empathetic, GPs, consultants, counselors or whatever else you may need. Managing a lifelong condition isn't easy, especially when you think you're on your own and undeserving of assistance. There is absolutely nothing you should feel embarrassed about. But the important thing is that currently you do and you work on getting support towards managing that feeling so it doesn't deteriorate your quality of life even further.

sullivlo

R.D. aka MR.D wrote: »

Have you gone to the very ends of investigation with the problem? Recently?
There are always new developments in the medical field.

Yeah, I've had all of the tests repeated within the past 3 months.

gugleguy

mmm. my instinct says that facebook/twitter is not your scene, as it is not mine. but you are on boards.ie, for all it's 'Trivial flaws' that annoy the likes of me. (Did I steal that 'Trivial' phrase from another thread title somewhere in Afterhours :P)

Are you into music for instance? Or models? Other boardsies in these forums n need not know about your condition.
I suffer from Irritable Bowel myself about twice a week that prolongs time in the bathroom. My social life outside is in bits. But well...life goes on...I'm fairly introverted in any case

Merkin

You poor thing. I've been constipated a couple of times in my life of about three days in duration and I genuinely felt toxic, I simply can't begin to imagine how having a basic bodily function compromised to such an extent would take its toll on you both mentally and physically over a prolonged period of time.

Have you paid a visit to the Long Term Illness forum? It seems to be a busy and supportive place and Im sure if you pop your head in there you could find people who have been through similar. Illness can be very isolating and frightening and it might help to talk to people with the same condition who could give you some help and advice on what treatments have worked well for them etc?

Here is the link
http://www.boards.ie/vbulletin/forumdisplay.php?f=862

sullivlo

Merkin wrote: »

You poor thing. I've been constipated a couple of times in my life of about three days in duration and I genuinely felt toxic, I simply can't begin to imagine how having a basic bodily function compromised to such an extent would take its toll on you both mentally and physically over a prolonged period of time.

Have you paid a visit to the Long Term Illness forum? It seems to be a busy and supportive place and Im sure if you pop your head in there you could find people who have been through similar. Illness can be very isolating and frightening and it might help to talk to people with the same condition who could give you some help and advice on what treatments have worked well for them etc?

Here is the link
http://www.boards.ie/vbulletin/forumdisplay.php?f=862

Yeah, I've posted in LTI before. I have tried every treatment in the book at this stage.

I guess I'm just looking for advice on what people with illness do to maintain positivity because right now I feel like starting to cry and never stopping!

Semele

Can you get a referral to a psychologist specialising in health conditions? A lot of people are reluctant to do this as it feels like being fobbed off by medical professionals, but as you've said yourself, physical health conditions and mental wellbeing have such a knock on effect on each other. I'm working in the UK, but here a lot of the larger hospitals have a health psychology service and I've worked with people referred for issues similar to yours. A lot can be done to help you manage the impact of your condition on your life. Ask your GP or specialist about being referred for extra support- sometimes group programmes might be available in the third sector too for long term health issues and these are also beneficial to a lot of people.

You poor thing though, you must feel awful:(

sullivlo

Semele wrote: »

Can you get a referral to a psychologist specialising in health conditions? A lot of people are reluctant to do this as it feels like being fobbed off by medical professionals, but as you've said yourself, physical health conditions and mental wellbeing have such a knock on effect on each other. I'm working in the UK, but here a lot of the larger hospitals have a health psychology service and I've worked with people referred for issues similar to yours. A lot can be done to help you manage the impact of your condition on your life. Ask your GP or specialist about being referred for extra support- sometimes group programmes might be available in the third sector too for long term health issues and these are also beneficial to a lot of people.

You poor thing though, you must feel awful:(

I'll ask my gp the next time I go to see her. I probably should go back to her given that there is no change. But she referred me on to a&e so I guess I shouldn't go back to her with the same problem unless I've been to a&e.

I probably come across as being whiney. Sorry

CathyMoran

My husband and I both have serious long term illnesses. I have found that having someone in my life that understands has helped me in so many ways - he even helped me when I developed an illness in adulthood, the results of which I have some of the same symptoms as him.

I do not know of there are support groups but certainly having someone who has been through it or something similar helps.

Curry Addict

i think you are way too hard on yourself. you have a fairly serious illness that has a significant physical and mental impact on your life. if modern medicine is failing you maybe look at alternative medicine.

Veganisim is very good for your body and might be a healing option worth checking out. Ayahuasca might be worth some research.

sullivlo

Curry Addict wrote: »

i think you are way too hard on yourself. you have a fairly serious illness that has a significant physical and mental impact on your life. if modern medicine is failing you maybe look at alternative medicine.

Veganisim is very good for your body and might be a healing option worth checking out. Ayahuasca might be worth some research.

I, unfortunately, have an intolerance to fibre. So while a high fibre diet is usually recommended for someone with constipation, too much fibre has a really adverse effect on my gut so veganism is out as I can't solely rely on vegetables / beans / pulses as there can be too much fibre

I see a dietician to get nutritionally balanced meals etc and I've recently started using juices as a way to increase my vegetable intake without adding too much fibre to my diet.

I guess when things settle down with the current bout I could go back to my GP and get an idea for what LTI supports are potentially available, and some recommendations for alternatives to the current meds I take.

Axiomatic

I would swing over to www.naturalnews.com or www.earthclinic.com and investigate futher.

Clearly the drugs are not working

ash23

sullivlo wrote: »

Yeah, I've posted in LTI before. I have tried every treatment in the book at this stage.

I guess I'm just looking for advice on what people with illness do to maintain positivity because right now I feel like starting to cry and never stopping!

I have a LTI and I just go with how I feel on a given day. If I feel like crying I'll cry. If I'm angry I'll curse the world. If I'm down I'll wallow. I think it's pretty normal to feel various strong emotions about a LTI to be honest once it's not taking over your life. I mean if every day was a crying day then I'd be heading to the gp for a chat.
I also feel a lot of guilt about being eternally in the GPs or missing work and letting people down. But I know if the roles were reversed I'd understand so I try not to let it bother me.

The flare ups are frustrating and just when you feel things are good, bam, the rug is pulled from under you. I know I can't control my relapses so I try to control the other parts of my life so I can manage better when I do relapse. My condition is aggravated by stress so I try not to stress out. And my neurologist has told me that talking through my fears and feelings are the best way to deal with them.

So when it's bad OP, have the pity party. Embrace it. Get angry and sad and peed off with the fact that your body is letting you down. But on the flip side, embrace the good days and think how amazing your body is to enable you to do all the things you do. On good days relish the feeling of being well because that's what will get you through the bad days. It's just balance.

CathyMoran

I allow my diagnosis day as a day that I allow my self to feel self pity - it has helped me a lot. You will have off days, we all do, accept them and then move on.

sullivlo

ash23 wrote: »

I have a LTI and I just go with how I feel on a given day. If I feel like crying I'll cry. If I'm angry I'll curse the world. If I'm down I'll wallow. I think it's pretty normal to feel various strong emotions about a LTI to be honest once it's not taking over your life. I mean if every day was a crying day then I'd be heading to the gp for a chat.
I also feel a lot of guilt about being eternally in the GPs or missing work and letting people down. But I know if the roles were reversed I'd understand so I try not to let it bother me.

The flare ups are frustrating and just when you feel things are good, bam, the rug is pulled from under you. I know I can't control my relapses so I try to control the other parts of my life so I can manage better when I do relapse. My condition is aggravated by stress so I try not to stress out. And my neurologist has told me that talking through my fears and feelings are the best way to deal with them.

So when it's bad OP, have the pity party. Embrace it. Get angry and sad and peed off with the fact that your body is letting you down. But on the flip side, embrace the good days and think how amazing your body is to enable you to do all the things you do. On good days relish the feeling of being well because that's what will get you through the bad days. It's just balance.

Oh no, every day isn't a crying day. Far from it. It's just a low time currently because at the moment I can't actually see a way out of this flare without a visit to hospital. I'm going to phone my GI tomorrow and see what they say!

Glad I'm not the only one who feels guilty over doctors visits.

Hoochiemama

I'd like to suggest a MBSR Mindfulness course? While you seem to be battling the illness with medication, I think what you are looking for is a way to help you deal with it mentally???

If so I think an MBSR course would be a massive massive benefit to you. It is a great way to gain coping mechinisms with obstacles in life.
http://www.mindfullivingprograms.com/whatMBSR.php

This website lists MBSR courses in Ireland.
http://www.mindfulness.ie/courses/


Best of luck

IvyTheTerrible

My OH has a similar problem, for him it is stress related (as well as chronic constipation he gets unexplained pains in his head back etc). He's had the tests but they show up nothing. So basically he has to manage his stress and make sure to get enough sleep. Diet control works to some extent, but the stress management is more effective. I know a big problem for him is not finding it easy to talk about what is stressing him out. Do you have someone you can talk to?

sullivlo

IvyTheTerrible wrote: »

My OH has a similar problem, for him it is stress related (as well as chronic constipation he gets unexplained pains in his head back etc). He's had the tests but they show up nothing. So basically he has to manage his stress and make sure to get enough sleep. Diet control works to some extent, but the stress management is more effective. I know a big problem for him is not finding it easy to talk about what is stressing him out. Do you have someone you can talk to?

I have people I talk to but I feel like a burden on them (or something) and that they have better things to be doing than listening to my moaning.

Emme

Have you tried a gluten free diet? Even if you aren't diagnosed coeliac you might benefit from this.

BlueFairy

I would also recommend trying gluten free for a while, to see if it makes any difference to you. Since your diet is already so restricted you might want to check it out with your dietician first. I'm not coeliac yet I have problems with wheat products, it really slows down my whole system and makes me feel bad, sometimes constipated, limiting it in my diet makes everything work better. It could be worth a try.

It's also worth a try investigating the stress side of things, a holistic look at your life and health rather than just this one particular illness. Another poster mentioned Mindfulness which would be especially beneficial for you coping with the stress of this as well as any other stress in your life.

A good counsellor to guide you through things would be a gift to yourself that you'll never regret. Reading a bit about stress and learning how to deal with it a bit better would also be helpful, I'd recommend reading Flagging Stress by Dr Harry Barry or even Control Stress by Paul McKenna which comes with an excellent relaxation CD.

Cognitive Behavioural Therapy can also help you look at how to manage your illness better. Here's an online course that my own GP recommended, to give you an idea of what CBT can help you do: https://moodgym.anu.edu.au/welcome

Since you've tried everything on the physical side of things, you might try looking at some of the mental side of things and how our minds and the way we think can affect our physical health and mood. There are many books on the topic, I'd recommend reading Conscious Medicine by Gillian Edwards - be warned that some of this book is fluff, but the basics of looking at how mind and body are linked are very interesting. There are other books around the topic.

sullivlo

BlueFairy wrote: »

I would also recommend trying gluten free for a while, to see if it makes any difference to you. Since your diet is already so restricted you might want to check it out with your dietician first. I'm not coeliac yet I have problems with wheat products, it really slows down my whole system and makes me feel bad, sometimes constipated, limiting it in my diet makes everything work better. It could be worth a try.

It's also worth a try investigating the stress side of things, a holistic look at your life and health rather than just this one particular illness. Another poster mentioned Mindfulness which would be especially beneficial for you coping with the stress of this as well as any other stress in your life.

A good counsellor to guide you through things would be a gift to yourself that you'll never regret. Reading a bit about stress and learning how to deal with it a bit better would also be helpful, I'd recommend reading Flagging Stress by Dr Harry Barry or even Control Stress by Paul McKenna which comes with an excellent relaxation CD.

Cognitive Behavioural Therapy can also help you look at how to manage your illness better. Here's an online course that my own GP recommended, to give you an idea of what CBT can help you do: https://moodgym.anu.edu.au/welcome

Since you've tried everything on the physical side of things, you might try looking at some of the mental side of things and how our minds and the way we think can affect our physical health and mood. There are many books on the topic, I'd recommend reading Conscious Medicine by Gillian Edwards - be warned that some of this book is fluff, but the basics of looking at how mind and body are linked are very interesting. There are other books around the topic.

I have tried GF for a while and it had no change. Structurally I guess there are a few things wrong but aside from whipping out the bad parts in my gut, it's managing the symptoms rather than treating the cause.

I will investigate the mindfulness courses. Believe it or not I do practice mindfulness (in terms of relaxation / meditation) and certain aspects of DBT. But I've never thought to use it for dealing with mental fatigue due to physical illness.

tinkerbell

OP, for illnesses with no known cure unfortunately there's not much else a medical professional can do for you other than give you regular check ups, prescribe medications and treat you when things are bad. There is one thing you can do though to help you. It's all about diet. Unfortunately, unless you're a coeliac, the medical professionals of this world don't seem to accept that diet is the route that should be explored also rather than only just pushing loads of medications into you, which for an incurable disease, may just mask the issue rather than start to heal it.

You say a GF diet didn't work, however that's only one diet. There are lots of digestive diseases and no one diet fits all. I suggest you read up about all the various diets there are which help sufferers of digestive diseases. A person suffering from IBS will have different dietary requirements to one who suffers from Chron's or Colitis, for example.

I'd be a bit skeptical on paying money to go see a psychologist / those courses you mentioned for how to deal with it rather than first going the dietary route. Whatever goes into your mouth must pass through your digestive tract - it's not your brain that's the issue here, it's your digestive tract. So start researching all the various diets that have worked for those with digestive diseases and see which one may suit you. Try to eat whole foods - cut out all the processed stuff in your diet. Keep a food diary so you can see what foods are making your symptoms worse, eg it might be a vegetable or fruit that is upsetting the balance or it might be milk or wheat or sugars or certain preservatives, etc. There's so much crap in foods these days that it could be anything irritating your digestion which is why making your own food is better as you know what's going into it. Good luck - hope you can find a solution.

JuliusCaesar

If you stopped feeling guilty for going to the GP, stopped feeling guilty about taking up a hospital bed, and stopped feeling a burden on family and friends when you sound off - would you feel better?

Perhaps talking with others in the same position, maybe not exactly the same condition, would help. There are Health Psychologists, and CBT might well be of use.

Maybe you need to ask your friends and family if they feel you are a burden, or whether they wish they could help more. Most people would like to help if they could, and if they thought listening helped would be glad to be a sounding board.


Also, please remember that most health professionals a. feel glad when somebody comes before a problem gets out of hand b. feel sad when they can't help a person as much as they'd like.

sullivlo

tinkerbell wrote: »

OP, for illnesses with no known cure unfortunately there's not much else a medical professional can do for you other than give you regular check ups, prescribe medications and treat you when things are bad. There is one thing you can do though to help you. It's all about diet. Unfortunately, unless you're a coeliac, the medical professionals of this world don't seem to accept that diet is the route that should be explored also rather than only just pushing loads of medications into you, which for an incurable disease, may just mask the issue rather than start to heal it.

You say a GF diet didn't work, however that's only one diet. There are lots of digestive diseases and no one diet fits all. I suggest you read up about all the various diets there are which help sufferers of digestive diseases. A person suffering from IBS will have different dietary requirements to one who suffers from Chron's or Colitis, for example.

I'd be a bit skeptical on paying money to go see a psychologist / those courses you mentioned for how to deal with it rather than first going the dietary route. Whatever goes into your mouth must pass through your digestive tract - it's not your brain that's the issue here, it's your digestive tract. So start researching all the various diets that have worked for those with digestive diseases and see which one may suit you. Try to eat whole foods - cut out all the processed stuff in your diet. Keep a food diary so you can see what foods are making your symptoms worse, eg it might be a vegetable or fruit that is upsetting the balance or it might be milk or wheat or sugars or certain preservatives, etc. There's so much crap in foods these days that it could be anything irritating your digestion which is why making your own food is better as you know what's going into it. Good luck - hope you can find a solution.

I initially went down the food route. I have months of food diaries and symptoms and have tried the exclusion diets for 3 months and slowly reintroducing foods. I discovered things that have an impact on my bowel and have eliminated these from my diet.

I have extensively researched all of the foods that I eat. I cook everything from scratch and am careful with my food intake. And I don't mean dr google or whatever - I have a phd in food digestion (ironic perhaps) and digestive illness, so I have a fair idea of what goes on in my tum.

I'm getting food intolerance tests done but I need to wait until I can eat a full range of foods so that I have the antigens present to have a reaction if there is an intolerance.

I know it's not my brain that's the issue. It's more just my attitude to how I deal with my illness and how I deal with others about it and how I perceive how others think of my tummy. Maybe I'm not explaining it properly.

blatantrereg

The rarer type of IBS causes constipation rather than diarrhea. The literature shows that Colpermin is very effective for this. It is just peppermint with a coating that allows it to get deeper into your system before it is absorbed.

The low fodmap diet was recommended for the same condition to my partner by the dietician. This is beneficial in reducing bloating. The food that seems to be the worst for aggitating her symptoms is onions.

Psychiatrists' view of IBS is that it is psychosomatic. The mental state influences what hormones are released etc, which in turn causes physical symptoms. This is consistent with research indicating that it is typical for a patient with IBS to also be diagnosed with a psychiatric conidtion - usually anxiety related.

So Colpermin and a low fodmap diet would be worth trying to deal with the symptoms, while reducing/dealing with stress and anxiety would be likely to tackle the root of the problem.