This is a kind of IBS Diary on behalf of my mum, whom I look after, who has suffered with this terrible affliction for over 7 years now. In truth, she has never been 'diagnosed' with IBS (Irritable Bowel Syndrome) as such, but the symptoms will be recognisable to many who have been I'm sure. It is my intention to record daily life, the treatments we sometime try, the help we do (and don't get) and to show any useful information that may help other people in the same position.
I would also really appreciate feedback from others on any aspect of this blog as well as questions or suggestions from those out there who know what it's like to live with this condition. Any professional medical people out there? I would love to hear from you too on how you see this condition and those who suffer with it...
Please also be aware i am not a Doctor or medical professional and if you have a medical problem or need treatment then seek a professionals advice (if you think they can help). What is contained on this blog is just my own experience in dealing with my mums health problems and is not medical advice to follow. Please use your own judgement.
Any website i link to or mention is not a recommendation or endorsement for that site but merely one of many that i may visit. I have not checked the authenticity or professionalism of any external web site.
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Some Background History:
Mum was diagnosed with Cervical Cancer in 99/2000. She was bleeding and went to the Male Dr who told her not to be concerned as it was
Thanks North Devon Hospital for not treating her there.. instead she had to travel in the community car on 120 mile round trip to Exeter Hospital for the Cancer treatment! Mum didn't rate Exeter Hospital highly.. in fact the part she stayed in was dirty and not all the nurses were very caring or understanding. Enough said.
She received Radiotherapy and Chemotherapy. She used to be a nurse and so when the giggling young girls who were administering the Radiotherapy one day said:
She got through the Cancer and has been clear now for 8-9 years. About a year after her treatment ended and while having some chicken soup she started to be physically sick and having diarrhea. This lasted on and off for about 6 weeks. I was up til 4am many nights and didn't know what was happening. The Doctors that we called out, sometimes at 3am did the usual thing: Gave her an injection and left. Usually walking right past me as i stood at the bottom of the stairs.. and out the door they went.
I called the late night Dr on the emergency line and told how every time she swallowed a little water she would bring it back up again and just couldn't keep anything down. As if she had a blockage somewhere. The very help advice was that she should
After an emergency operation where she died twice on the operating table she spent a couple of days in ICU (Intensive Care Unit) followed by two weeks on the ward at Torbay Hospital. On the whole mum thought Torbay treated her well, apart from one uncaring member of staff but there is always one rotten apple.
Because it had taken so long to get her treated she had lost a lot of weight. Down to around or below 6 stone and she is only 5' 3". The bones were sticking out from her spine and when she tried to smile she couldn't, as there was just no meat left on her face to smile with.
She told the nurses and Doctors while she was in hospital that she wanted to get to America to see her grandson and the answer was that she would be able to in a couple of months....
....7 years later the furthest she has been is the supermarket.. 5 miles away.
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"just part of getting old."Mum, being a former nurse knew differently and when her own female Dr got back from Holiday she went to see her, who was most annoyed at the previous response and so soon after diagnosed mum with Cancer.
Thanks North Devon Hospital for not treating her there.. instead she had to travel in the community car on 120 mile round trip to Exeter Hospital for the Cancer treatment! Mum didn't rate Exeter Hospital highly.. in fact the part she stayed in was dirty and not all the nurses were very caring or understanding. Enough said.
She received Radiotherapy and Chemotherapy. She used to be a nurse and so when the giggling young girls who were administering the Radiotherapy one day said:
"oh dear Mrs J, better get it in the right place this time hadn't we?"mums heart sank as she knew that could have serious consequences later on.
She got through the Cancer and has been clear now for 8-9 years. About a year after her treatment ended and while having some chicken soup she started to be physically sick and having diarrhea. This lasted on and off for about 6 weeks. I was up til 4am many nights and didn't know what was happening. The Doctors that we called out, sometimes at 3am did the usual thing: Gave her an injection and left. Usually walking right past me as i stood at the bottom of the stairs.. and out the door they went.
I called the late night Dr on the emergency line and told how every time she swallowed a little water she would bring it back up again and just couldn't keep anything down. As if she had a blockage somewhere. The very help advice was that she should
"take two paracetamol every four hours?!"She did go into hospital briefly although the nurse seemed to think that an Xray was good enough and an Ultrasound wasn't needed?! That would have shown the problem of course but in the end, and after coming home to suffer a little more, a Dr eventually called an ambulance from our place and when it arrived, 2.5hrs later (the drivers were having a tea break or so we were told) she left and i thought that would be the last time i would see her alive.
After an emergency operation where she died twice on the operating table she spent a couple of days in ICU (Intensive Care Unit) followed by two weeks on the ward at Torbay Hospital. On the whole mum thought Torbay treated her well, apart from one uncaring member of staff but there is always one rotten apple.
Because it had taken so long to get her treated she had lost a lot of weight. Down to around or below 6 stone and she is only 5' 3". The bones were sticking out from her spine and when she tried to smile she couldn't, as there was just no meat left on her face to smile with.
She told the nurses and Doctors while she was in hospital that she wanted to get to America to see her grandson and the answer was that she would be able to in a couple of months....
....7 years later the furthest she has been is the supermarket.. 5 miles away.
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Cause and Treatment
She couldn't look after herself for the first year or two. I did everything for her. It took a long time for her weight to return and the first months she was visiting the toilet 25 times within every 24 hr period.
The 'remedy' for this was antibiotics.. various different kinds. They almost always made matters much worse and the only response from Consultants was more antibiotics and to be told by one Consultant rather curtly
Here is what Medicine Online has to say about it:
http://www.medicineonline.com/articles/R/2/Radiation-Enteritis.html
Basically it means the damaging of the healthy tissue in the bowel that can happen when Radiotherapy is used. A unwanted side effect!
We have tried various diets and methods. Nothing seem to work. I wrote 2-3 years ago to Jan de vries, a practitioner of alternative healthcare and although he kindly wrote back and tried to help the herbal remedies didn't have any beneficial effects. Having said that, they had no bad side effects either which isn't something you can say about pills and potions from a GP usually!
I have started more recently in compiling a chart of daily trips to the toilet. We discuss bowel movements every day anyway so i thought i might as well document them to see if there is a pattern or something helpful that can be gleaned from the information collected.
Here is the chart for the later half of May 2008 when i started:
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The 'remedy' for this was antibiotics.. various different kinds. They almost always made matters much worse and the only response from Consultants was more antibiotics and to be told by one Consultant rather curtly
"well, I have taken them and they work for me"After 3 years she finally had an answer to why this had happened to a certain extent, but not what to do about it or make it all go away. It's called 'Radiation Enteritus' apparently.
Here is what Medicine Online has to say about it:
http://www.medicineonline.com/articles/R/2/Radiation-Enteritis.html
Basically it means the damaging of the healthy tissue in the bowel that can happen when Radiotherapy is used. A unwanted side effect!
We have tried various diets and methods. Nothing seem to work. I wrote 2-3 years ago to Jan de vries, a practitioner of alternative healthcare and although he kindly wrote back and tried to help the herbal remedies didn't have any beneficial effects. Having said that, they had no bad side effects either which isn't something you can say about pills and potions from a GP usually!
I have started more recently in compiling a chart of daily trips to the toilet. We discuss bowel movements every day anyway so i thought i might as well document them to see if there is a pattern or something helpful that can be gleaned from the information collected.
Here is the chart for the later half of May 2008 when i started:
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More Charts
Here are the charts for the months of June and July and as you can see things are not doing too well. We are currently trying an aloe vera drink but so far there have been no positive effects.
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Probiotics?
We try these some time ago although not for very long. They didn't have a great effect tho. Recently after browsing the net i can across some thing called 'Align' which is a newer strain of probiotic that many on the net think helps with their IBS symptoms.
I ordered some from America (the only place it seem available) but mum hasn't really felt well enough to try it properly. She took one tablet (the daily dose is just one) and then next day was quite well but.. thats the problem with IBS and related conditions. Was it the tablet that helped or was she just having a 'good day'.?
Once she is feeling well again (she is going through a rough patch at the moment as can be seen by the above charts) then she will take Align again. I'll report back when she starts taking it and hopefully the results will show on the next chart i publish!
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I ordered some from America (the only place it seem available) but mum hasn't really felt well enough to try it properly. She took one tablet (the daily dose is just one) and then next day was quite well but.. thats the problem with IBS and related conditions. Was it the tablet that helped or was she just having a 'good day'.?
Once she is feeling well again (she is going through a rough patch at the moment as can be seen by the above charts) then she will take Align again. I'll report back when she starts taking it and hopefully the results will show on the next chart i publish!
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May - August 2008
The year so far and it just looks like matters are getting worse. There are and have been good periods but they just don't last and so far i can't see why there occur or how to get them to come back again. I'm hoping these records may point us in the right direction. The chart below is a record of trips to the toilet from mid May to mid August 2008.
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A letter to the Surgeon
A couple of years ago I wrote the following letter to the surgeon that operated on mum. I didn't expect a reply but i did get one and although I can't find the reply right now the basis of it was that she could go into hospital to be monitored to find out what the problem was and a suggestion to see a Consultant again. He did seem sympathetic that she hadn't fully recovered as well. Nice to get a reply but after the last Consultant told her that "I don't know what the problem is and I don't know how to fix it", it seemed pointless to go down that route again. Also mum has a fear of catching something nasty whilst staying in an NHS hospital and so won't go into one unless she is at deaths door!
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Dear Sir,
I wonder if you recall a patient you operated on 5 yrs ago last March/April? I am sure you wouldn’t but perhaps you would indulge me in reminding you of Mrs J, my now 70 year old mother, who needed an emergency operation at Torbay Hospital for a blockage in the bowel.
I remember the nurses at the time saying she would be able to get to America to see her Son and Grandson by July of that year and how she was most likely to make a good recovery.
I’m certain as an operation where the patient didn’t die you consider it another ‘successful’ outcome but perhaps you are not familiar enough with the term ‘quality of life’ to put another tick in that box?
It’s certainly not as bad for her as it once was with uncontrollable episodes of diarrhoea 20-30 times within a 24 hour period (now the uncontrollable episodes are ‘only’ 4-10 times a day on average) but when on days it does become as bad or she again messes herself in the high street outside Woolworths or in Tescos car park she certainly has thoughts that perhaps it would have better not to survive the original operation 5/6 years ago.
We have tried to help ourselves. I have taken her to the Dr, the incontinence clinic, consultants, the dietician and have even written to Jan De Vries for herbal advice of which although didn’t have any benefits certainly didn’t cause the horrendous side effects that antibiotics have had (the usual ‘remedy’.)
She wears a nappy wherever she goes and stays close to home to reach the toilet sooner rather than later although many is a time i have washed excrement from the drive, car seat and the hallway and on such days i do everything as it drains and shatters her physically and mentally.
My life is on hold until she is cured or dies as it’s my job to stick by her as she has done for me all my life and my very pretty ex girlfriend will certainly confirm that a man with a sick and needy mum in the background is no great catch. She is now living in New Zealand next to a lake and forests as she couldn’t wait any longer for my ‘personal circumstance to improve’. I guess she did the right thing as they haven’t.. and probably never will.
I apportion no blame although how can you when consultants tell you “I don’t know what causes this or how to help it go away” but thought it right you should know the results that perhaps you never see or hear of once a patient has been “sent home to ‘get on with it”.
Yours sincerely,
David
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The Gut Trust (IBS Network)
The other week i looked up 'IBS' online and found The Gut Trust. Formally known as the IBS Network. Why they have to dumb down the names of places to make them seem friendly is beyond me though. This is their site:
http://www.theguttrust.org/
In their 'About us' section they state:
What the Gut Trust could do for her though was to have cards printed out to let people know that she sometimes needs to urgently use the public toilets and so the 'advice' was that, on having an emergency and finding a que at the public conveniences she could present this card to people waiting so that she could jump the que?!
That IS helpful isn't it! Perhaps the woman on the other end of the line was having a bad day and many other people have found this site to be useful and helpful to them. Do let me know if you have had a good experience after phoning the 'helpline'. All i can say is that, after that, mum won't be ringing them again.
http://www.theguttrust.org/
In their 'About us' section they state:
The Gut Trust is the only charity in the UK dedicated to supporting people with Irritable Bowel Syndrome.
We run a free telephone helpline, staffed by specialist nurses, to give advice and support. This helpline is available to anybody, whoever they are.Well, mum rang the number and the help and advice was that 'we are not medical professional and we don't give advice'. They gave her the number of a nurse to ring who suggested Red Bush tea (which mum is trying).
What the Gut Trust could do for her though was to have cards printed out to let people know that she sometimes needs to urgently use the public toilets and so the 'advice' was that, on having an emergency and finding a que at the public conveniences she could present this card to people waiting so that she could jump the que?!
That IS helpful isn't it! Perhaps the woman on the other end of the line was having a bad day and many other people have found this site to be useful and helpful to them. Do let me know if you have had a good experience after phoning the 'helpline'. All i can say is that, after that, mum won't be ringing them again.
August
August wasn't a great month. 13 trips in one day.. the worst day since i started recording. The results for trips to the loo for the second half of May were a total of 65 times.
Compared with 117 June.. 137 July and Augusts total: 181
Some Imodium taken at the end of the month and things settled down a little. Normally that stuff doesn't work so it's anyone's guess is that helped this time or not.
Compared with 117 June.. 137 July and Augusts total: 181
Some Imodium taken at the end of the month and things settled down a little. Normally that stuff doesn't work so it's anyone's guess is that helped this time or not.
A Fresh September
Well, September so far seems to look a little better. We think, at least for the moment, that using Lactose Free milk has helped. She has also had lamb which has known to be beneficial (having lamb again tonight in fact).
Could it be as simply as a severe lactose intolerance? Here's what we are using:
http://www.lactofree.co.uk/
Only one trip to the loo for each day of the 5th and 6th of Sep! wow. The last time that happened was 8 weeks ago. One trip so far today as well (the 7th) but this was early this morning so wouldn't be surprised if that changes before the day is out. Certainly an improvement on the last few weeks.
Here is a link to a BBC page that talks about Lactose:
http://www.bbc.co.uk/health/conditions/foodintolerance1.shtml
The site states that:
Anyway, here's the start of the month where she started using the Lactose Free milk on the evening of the 4th day.. looking promising but not getting our hopes up yet. It's a beginning!
Could it be as simply as a severe lactose intolerance? Here's what we are using:
http://www.lactofree.co.uk/
Only one trip to the loo for each day of the 5th and 6th of Sep! wow. The last time that happened was 8 weeks ago. One trip so far today as well (the 7th) but this was early this morning so wouldn't be surprised if that changes before the day is out. Certainly an improvement on the last few weeks.
Here is a link to a BBC page that talks about Lactose:
http://www.bbc.co.uk/health/conditions/foodintolerance1.shtml
The site states that:
"Lactose intolerance can be tested for more thoroughly using a lactose tolerance test, a hydrogen breath test and a stool acidity test."That's interesting and worth finding more about. We were not sure as the last consultant that mum specifically asked regarding a Lactose test told her there were no tests at all for Lactose intolerance?! Another helpful answer to add to the other helpful answers from the medical profession.
Anyway, here's the start of the month where she started using the Lactose Free milk on the evening of the 4th day.. looking promising but not getting our hopes up yet. It's a beginning!
September Improvements
September was a better month. I can only put this down to the decrease in Lactose as nothing else has been changed for the most part. The total trips to the loo were 88! Remember that August was 181 and the average seems to be around 130 since records began in May.
Mum wants to wait until she sees the continence nurse towards the end of this month to ask about a Lactose Intolerance test as well as advise on taking the Lactase Enzyme tablets.
There was a spike in last months graph and there are still improvements to be made. I have stopped her having ordinary margarine for the moment and she is using Soya spread instead which doesn't taste any different really. Also, she is no longer having processed cheese slices but converted to Edam slices instead (apparently better in regards to lactose content according to a couple of books i have read.)
One book i am referring to at the moment is The Everyday Dairy-Free Cookbook - Recipes for Lactose Intolerants by Miller Rogers and Emily White. The Lamb hotpot was a success as well as last nights dish, the Spinach Soup!
Here's hoping this month of October will continue to show improvements as i will try to reduce the Lactose intake as much as possible for her.
October
Well, October was a better month. This was even more of a surprise because of mums decision to come off the lactose free milk and to go back to the oily margarine (no longer using the soya spread). She did this against my advise as she sometimes felt sick. This didn't have great benefit but she still didn't want to go back on to the soya spread etc.
Also, and something i was very annoyed about and powerless to control was that the trip to the Continence Nurse that i thought would end with a Lactose Test ended up with no test because mum 'forgot' to ask. She didn't forget.. she just doesn't like hospitals and the word 'test' even though it's harmless. I was very disappointed but what can i do?! I can't force her to take more positive action.
In the meantime i have continued to make her foods which she likes and that have little or no lactose in them.
Last months total beat the previous. 81 for October! Pretty pleased with that at least!
Also, and something i was very annoyed about and powerless to control was that the trip to the Continence Nurse that i thought would end with a Lactose Test ended up with no test because mum 'forgot' to ask. She didn't forget.. she just doesn't like hospitals and the word 'test' even though it's harmless. I was very disappointed but what can i do?! I can't force her to take more positive action.
In the meantime i have continued to make her foods which she likes and that have little or no lactose in them.
Last months total beat the previous. 81 for October! Pretty pleased with that at least!
A better November
November was a really good month. The total was an amazing 63 which beat the previous month by 18! There were even two "Zero" days as we now call them which meant mum din't go to the loo at all on those days. That is unheard of and hasn't happen since her operation and all this started 8 years ago. So, something must be working..
Lactose free milk and soya spread is used sometimes but not very much for reasons previously stated. If i had my way she would have those all the time but it doesn't work that way I'm afraid.
Still making better meals for her but only 30% of her intake is made from 'good' foods. Having said that, even a greasy burger and cheese didn't effect her unduly.
Although there are still peaks in Novembers chart there were a much better consistency and more controllable than we have ever seen in the past. Trips to the shops were not dominated by 'where is the toilet if i need one'. Far from it. We have been out and the thought of bowel movements hasn't even crossed our minds and we have just shopped like normal people.
It's far from perfect and there is still plenty more to do: More 'better meals' and hopefully back on the lactose free milk (although i struggle to get her to agree). Onwards and upwards for December. The last couple of christmases have been really poor so lets hope that months shows similar results.
I should mention that she insists on taking imodium capsules sometimes against my advice (they contain lactose and do not stop the problem occuring).
It's far from perfect and there is still plenty more to do: More 'better meals' and hopefully back on the lactose free milk (although i struggle to get her to agree). Onwards and upwards for December. The last couple of christmases have been really poor so lets hope that that month shows similar results as for November.
Lactose free milk and soya spread is used sometimes but not very much for reasons previously stated. If i had my way she would have those all the time but it doesn't work that way I'm afraid.
Still making better meals for her but only 30% of her intake is made from 'good' foods. Having said that, even a greasy burger and cheese didn't effect her unduly.
Although there are still peaks in Novembers chart there were a much better consistency and more controllable than we have ever seen in the past. Trips to the shops were not dominated by 'where is the toilet if i need one'. Far from it. We have been out and the thought of bowel movements hasn't even crossed our minds and we have just shopped like normal people.
It's far from perfect and there is still plenty more to do: More 'better meals' and hopefully back on the lactose free milk (although i struggle to get her to agree). Onwards and upwards for December. The last couple of christmases have been really poor so lets hope that months shows similar results.
I should mention that she insists on taking imodium capsules sometimes against my advice (they contain lactose and do not stop the problem occuring).
It's far from perfect and there is still plenty more to do: More 'better meals' and hopefully back on the lactose free milk (although i struggle to get her to agree). Onwards and upwards for December. The last couple of christmases have been really poor so lets hope that that month shows similar results as for November.
Overdue Update
After not writing for a while it's time to update. No improvement to note though. Unfortunately the progress made in the November 2008 was short lived and although my efforts to help with mum's diet were not long lasting (i think mum is beginning to be afraid to eat anything let alone new foods) we did try to keep the momentum going.
As you can see from the following few months charts she has had average months and bad months but nothing the matches Novembers excellent results and in feb 2009 she had to have antibiotics because of a bladder infection (which cleared up that) but which made the underlying problem worse again and took some time to get over.
As you can see from the following few months charts she has had average months and bad months but nothing the matches Novembers excellent results and in feb 2009 she had to have antibiotics because of a bladder infection (which cleared up that) but which made the underlying problem worse again and took some time to get over.
Full year May 08 - May 09
Here is the chart for the first complete year out of interest. May to May.
SBS not IBS?
SBS (Short Bowel Syndrome) is only something i have come across recently. The symptons and causes seem to match mum's problem much more closely than the self diagnosed IBS tag ever did although i am in the early stages of finding out more about this condition.
From what i have read the surgery and procedure certainly relates closely to what mum remembers being told about her operation many years ago. Although if that is the case the question is why the surgeon, Doctors and Consultants have never mentioned SBS is anyone's guess.
Here are a couple of links to information i found on the net regarding SBS although i will post up more as and when i find it out:
http://emedicine.medscape.com/article/193391-overview
http://www.patient.co.uk/showdoc/40025321/
If anyone knows more about this specific area (SBS) or has had some experience of dealing with it i would be pleased to hear from you.
From what i have read the surgery and procedure certainly relates closely to what mum remembers being told about her operation many years ago. Although if that is the case the question is why the surgeon, Doctors and Consultants have never mentioned SBS is anyone's guess.
Here are a couple of links to information i found on the net regarding SBS although i will post up more as and when i find it out:
http://emedicine.medscape.com/article/193391-overview
http://www.patient.co.uk/showdoc/40025321/
If anyone knows more about this specific area (SBS) or has had some experience of dealing with it i would be pleased to hear from you.
Progress
Looking back over the different stages in particular the charts for the last few months it seems clear that beneficial progress can be made with a little effort. Unfortunately, someone whose ailments are linked to what food they consume (from experience) seem to become almost afraid of eating 'normal' foods. Let alone trying anything new or untested and food itself becomes the enemy.
The chart for last November, for instance, was 63. Instead of a bad august number of 181 and the average of 117. That November month was heavy with discipline, home cooked foods and experimentation.
Sadly, someone of poor health and worried, tends to leap at anything that could be 'the' cause of the ailment in the vain hope of finding a reason for the problem and therefore even a meal that has previously been beneficial (for the most part) is suddenly turned upon as the 'cause' of the problem. 5,6,7 times in a row of positive results from eating.. say hotpot, followed by an 8th meal of hotpot which, for some reason, didn't have a positive result, is targeted as the main culprit for the entire illness (even if hotpot had never been eaten in the previous years).
Therefore, the hotpot is 'bad' and never touched again. The fact that the previous 7 meals of hotpot didn't have bad effects are completely wiped from the unhealthy and worried persons memory and hotpot is never touched after that single bad episode.
This makes persuading the sufferer to try new things very difficult and after a while that person, through fear of food itself, sticks to what they know like egg on toast or a sandwich of fatty ham.. day in day out with no alternative and alteration. Despite the fact that those meals offer no relief as did previous experimental meals, those familiar foods are 'safe' and reassuring.
I can't say that i have found a way to combat this 'fear of food' yet although the only possible route could be a professional medical person (whose authority is listened to) stating that new foods or 'this diet plan' will (could) help. The only problem there is finding a professional medical person that A: knows what they are talking about. And B: cares enough to even bother trying.
The chart for last November, for instance, was 63. Instead of a bad august number of 181 and the average of 117. That November month was heavy with discipline, home cooked foods and experimentation.
Sadly, someone of poor health and worried, tends to leap at anything that could be 'the' cause of the ailment in the vain hope of finding a reason for the problem and therefore even a meal that has previously been beneficial (for the most part) is suddenly turned upon as the 'cause' of the problem. 5,6,7 times in a row of positive results from eating.. say hotpot, followed by an 8th meal of hotpot which, for some reason, didn't have a positive result, is targeted as the main culprit for the entire illness (even if hotpot had never been eaten in the previous years).
Therefore, the hotpot is 'bad' and never touched again. The fact that the previous 7 meals of hotpot didn't have bad effects are completely wiped from the unhealthy and worried persons memory and hotpot is never touched after that single bad episode.
This makes persuading the sufferer to try new things very difficult and after a while that person, through fear of food itself, sticks to what they know like egg on toast or a sandwich of fatty ham.. day in day out with no alternative and alteration. Despite the fact that those meals offer no relief as did previous experimental meals, those familiar foods are 'safe' and reassuring.
I can't say that i have found a way to combat this 'fear of food' yet although the only possible route could be a professional medical person (whose authority is listened to) stating that new foods or 'this diet plan' will (could) help. The only problem there is finding a professional medical person that A: knows what they are talking about. And B: cares enough to even bother trying.
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