An Evening in the Life

Digestive health
1

This the first time I have started a discussion and laid out this level of detail so please be gentle. Here goes an evening in the life of IBS:

My illness is more intermittent now but when the illness does strike it is severe hence why I have been discussing with you because it not only affects my ability to work but also my mental wellbeing.

I have tried tracking my illness a few times and here is the most recent:

On the day of illness I had a 20 minute walk in the morning and a further 20 minute walk in the afternoon.  I am not working at the current time so not particularly stressed.  On the day of illness I ate porridge with a small banana, a salad and in the evening 2 pieces of wholemeal toast with scrambled egg and half an apple, a few grapes and a yoghurt and I checked and the eggs were in date up to the 6th Feb.  The previous day I ate the same except my evening meal was a baked potato and a small tin of baked beans. I eat baked beans a lot and I am not ill. Three hours later after the scrambled egg at 11pm: 

1.       Sudden abdominal pain below my ribs on my right hand side.  This pain lasted approx. 10 mins then it would subside and 10 mins later the pattern would repeat.

2.       After one hour, midnight, I could stand no more so decided to go to bed but trying to sleep in this cycle is difficult, so lay in bed waiting for the cramp to strike again.

3.       After a further hour, 1am, I get the feeling that maybe I need to use the loo.  I spring out of the bed, such is the urgency, and do so.  At this point everything is normal ish and apart from the rush to get there.

4.       Now the cramp cycle is replaced with another cycle of going to the loo and feeling better for 10 or so mins and then needing to use the loo again and repeat. 

5.        After about 30 mins my throat feels like it is contracting, my mouth fills with saliva and my forehead is perspiring.  On this occasion there is no sickness but it is at this point I normally would be sick, about 2 and a half hours from the first cramp.

6.       At this point my body takes over and I lose control of it as my body starts convulsing and the result is quite violent.  Without being too graphic think cow pat. It is now at the truly horrible stage.   

7.       Now my body goes into a cold sweat.  I am very tired and the bed is beckoning and then yet again my body takes over and I rush back to the loo one more time.

8.       Finally at 2.20am I believe I am comfortable enough to fall asleep 3 hours and 20 mins from the first cramp.

The following day I arise late have no appetite and manage dry toast and soup all day.

Has anyone had anything similar and found a way to cure this as I used to get this 2 – 3 times a week so it is no wonder my g/f had enough of me but now it is more intermittent maybe bi-monthly.  I have introduced exercise, eliminated stress at the moment and eat much better with salads and fruit salad but yet it still happens.

I am thinking of returning to work hence why I need to try and find solutions because in a working environment I will only get worse.

All ideas will be gratefully received. 

Please help

2

Whole meal bread, apples, baked beans and yoghurt, and indeed many fruits are some of the major trigger foods for IBS. Your symptoms certainly sound similar to mine, particularly the hot and cold sweats and pain in my right side. If it's any consolation, the Low FODMAP diet has been brilliant in enabling me to control and manage the condition. Might be worth a try if you haven't already - and I'm guessing you haven't if you're eating wholemeal bread and lots of fruit and salads. Good luck and I hope things improve soon. 

Jan

3

Hello Jan I tend to eat the same foods regularly so in other words last week I will have eaten baked beans and bread and I eat yoghurt every day and apple and grapes but this is the first time I have been ill for about 3 weeks so I would not say I have trigger foods. I have trigger periods, as in periods of time not anything else.

I only get those when I am in the IBS cycle.  I do not get them sitting down reading for example.  I have noticed most have pain in their left side.  I think you are the first person to say right side but yes it is like an electric shock.  I find myself standing up pacing and then when it happens I just freeze and contort myself repeatedly for 10 mins until it goes away but then it returns 10 mins later and so on.

I will have to look at Low Foodmap as I have never heard of it but I do not eat much.  A dietician said if you eat bread for 3 weeks and you are fine and on the fourth week become violently ill it is not likely to be the food.  I do not know if accurate but that is what I was told. The idea behind those foods coupled with exercise was to regulate my body because if I visit the loo regularly my body is less likely to convulse.  The theory is sound and it was worked as I used to be ill like this for 2 - 3 times a week and miss days from work etc but with the change in diet it is now every 3 to 4 weeks but when it happens it wipes me out for a few days. 

This may sound silly but I was regularly 8 - 10 miles and 3 hours of an IBS attack and I am as tired as after a walk.  I have told a few close friends who laughed their head off and thought I was being hilarious but honestly it is true and also I have never lay down on the bathroom floor for 5 mins sleep which turned into 2 hours after a walk.

I am not sure if anyone thinks this but an IBS attack is not only horrible but damn well exhausting.

 

4

I'm no expert but  could it be a gradual build of the foods you regularly eat, rather than an immediate impact? I say this because in the months building up to my diagnosis I found it almost impossible to detect a "trigger" pattern. It seemed that I could eat the same foods frequently with no negative effect, then out of the blue I'd have a major flare up even though I hadn't eaten any different foods. I know I'm in danger of sounding evangelical, but the Low Fopmap diet has given me life back. My GP recommended it - he says it is the only scientifically researched eating plan for controlling IBS. There's a load of high and low FODMAP food lists on the Internet, but again my GP recommended those put together by Sue Shepherd, the person who did the research into the relationship between Fodmaps and IBS. 

5

Don't worry no one appears to be an actual expert even the hospital staff. 

How long in your non expert opinion could the gradual build up be do you think it would be as long as 3 weeks?

I have no trigger pattern either.

Same here I eat the same foods with no impact and then bang.

I have not had time but I will look into the Low Foodmap thingy as you praise it so highly.  I thought I would follow the evengelical theme.

I need my life back too. My GP recommended water and exercise and that was it. Sue Shepherd got it. 

I am a very fussy eater though like most people with ASD so I will first and take it from there.

Thank you

6

Good luck. Having ASD may even be an advantage for the Low FODMAP diet because you do have to quite meticulous , at least initially, but remember you also need to make sure you're having a good nutritional balance. 

Yes, I do think the gradual build up could be as long as 3 weeks, sometimes longer. The "trigger" foods can, I think, slowly begin to irritate the bowel ... After all it took about a year of gradually getting worse before I saw my GP, followed by a couple of months of various tests and investigations before IBS was diagnosed. I discovered that for me one of the biggest culprits was onion and garlic, which I ate on a pretty regular basis with little or no effect - then I'd have a packet of cheese and onion crisps with explosive results within an hour of eating them. I now avoid everything with onion although I can happily the get same flavour from the green part of leeks, or the green part of spring onions and by using garlic infused oil. 

As  for soup, there are very few ready made soups I can eat because they either contain onion or gluten, or are high in fructans. I now make my own - parsnip and potato with feta is delicious. And it is simple and quick to make - even my non-IBS friends love it. 

I do hope things improve for you. I had reached the point where, if I was going out, I simply didn't eat. If I was driving somewhere, I was constantly thinking where the next loo was just in case I needed one urgently. There were countless times when I pulled out of going somewhere with my husband because I thought I would have to dash to the loo. I was definitely in danger of becoming a recluse. So when I say I've got my life back, I really mean it!!

 

7

I can be meticulous but my tastebuds are very basic so I don't like onion, feta or parsnip. I do like potato though.

If it is a build up I need to understand nutrition better maybe as what is a nutritional balance.  I thought by introducing fruit and veg that would do it for me but not so..

In that case then that looks like that is what it could be.  I always put it down to stress previously but as not working I do not think that is the case now.

I have been analysing my food for 5 years now and definitely do not have any triggers.  There is not one food I eat and one or two hours later makes me ill for example I will be having scrambled egg this evening which is what I had the night I was ill but guarantee I will not be ill this evening.

I don't like leek or garlic either.  Just checked my soup and says 89% Tomato, water, cornflour, sugar, rapeseed oil, dried skimmed milk and cream.

I hope so too. Indeed I do not eat if I go out.  Indeed I have done the same. I know all the locations of my local loos and supermarkets for the same reason.  I did the same and in the end my g/f got fed up of it and I do not blame her. She either missed so many magic moments or she had to go alone and had no one to share them with as I was stuck in the loo.  Having only been out once this week I can say I am now a recluse.

I will look into your FodMap thingy.  I did go to YouTube but then ended up getting in a row discussing music instead

 

8

What has already been said is so true- your diet is horrible for ibs. Salad, grapes,wholemeal bread are too high in insoluble fibre and it is very likely that this build up could be causing your diarrhoea. Dairy is also not well tolerated by many.

And yes you can get a build up of trigger foods. For example if i eat one chocolate i am fine, but if i were to eat one chocolate every day, then after about a week i would be terrible and the effects could last up to 2 weeks after i stop eating it.

The pain you are experiencing is because your large intestine is going into spasm and shoving everything along- hence normal stool then diarrhoea as everything has moved along too fast.

Walking is great exercise though and porridge is full of soluble fibre which is great!

Try peppermint tea and anti spasmodic drugs, cut out the insoluble fibre and up the soluble fibre.

9

Hello Leenie Pie

I did not realise.  Salad was meant to be the healthy option. 

Don't say that I have only just switched from toast to porridge as more healthy apparently.

OK so like Jan said you also think there could be a delay in my trigger foods hence why I can not spot them so easily.

Thank you for the science as I did not realise that and no one has told me that despite many visits to my doc. Is it dangerous having these spasms in the long run?  In other words am I doing harm to my body?

I am doing at least an hour a day.  I try to do 3 hours at the weekend but I have a few problems stopping me at the mo so just sticking to 40 mins to an hour a day or local walking at the mo. If I start work again I will be driving again.

Excellent thumbs up on the porridge

I have just bought peppermint tea.  What are anti spasmodic drugs do they have a name? 

Firstly I will need to look up what insoluble fibre is compared to soluble fibre.  I thought fibre was fibre.  Adverts say high in fibre they do not distinguish between the two.

More research required but glad I posted now as at least I know more about the large intestine.  Do you get this or did you used to get this?

10

Don't worry, it is hard to know what to eat for IBS there is such a lot of rubbish out there, plus everyone reacts differently. Unfortunately a lot of 'healthy' things are not good for ibs. Whole grains, nuts, seeds, pulses, dairy, fibrous veg can all have bad effects on the gut of someone with ibs, yet it is what you are told to eat for a 'healthy' diet ( not healthy if it leaves you in agony and stuck in the toilet!)

Soluble fibre turns to a kind of jelly in your intestines helping to move stool along smoothly and promote regular contractions. Insoluble fibre (think bran, whole grains etc ) bulks up the stool and can make it harder to push along, hence more spasms.

Try including more rice, oats, peeled root vegetables (well cooked) peeled fruits ( apple pear and banana have lots of soluble fibre), lean meats and fish (especially oily fish), boiler or baked potato.

I'm not sure where you live but in the UK anti spasmodic drugs include buscopan and mebeverane. Some people find peppermint oil capsules helpful too.

The intestine spasm will not damage your body.its just horrible to experience. Food and medication can help regulate it though. Yes I get bad spasms at times, particularly right before a diarrhoea episode like you.

11

Despite sufferering with this for a while now I am only just coming to realise how difficult. I have gone down the healthy option porridge, salad etc and has worked well but I am still, just not as much. Whether this is down to the food or weight loss I don't know. Your list includes many things I have switched to, typical. I must say though I have very weird ideas around food so a small adjustment to normal people is massive for me. Indeed healthy

for one person may not be healthy for another. I am not stuck as often as I used to be but not cured either.

Soluble fibre is what I need then. I have been taking oats in the form of porridge. I am sure my doc said bulking up was a good thing.

I don't like rice. When you say oats is that like porridge? If so good on that one. When you say root vegetables do you mean carrots etc. I tend to steam for 7 mins with broccoli on for 5 at the same time as I was told steaming was good for you.

I eat apple and banana most days with grapes as nicer than pear. Do you think pear is better than grapes then?  I have cut meat out altogether as doc said when I was ill 2-3 times a week that would be meat so cut that out and added salmon in. I like baked potato and tend to have one a week.

Yes I have seen buscopan advertised. I have just finished a mug of peppermint tea .

That is good. It is one of the most painful things I have experienced and I have done a lot of stupid things as a teenager so for a while I became used to pain but definitely not this pain.

I am trying to regulate with food. I am very wary with medication. A lot of medication can have side effects. I was prescribed SSRI's for my mental health but I would not take any.

Yes that sounds very familiar. I am sorry to hear that but at the same plan good not to be alone.

 

12

Wow Astrozombie!

You are meticulous in your writing also!😄

What is ASD?

The symptoms you have described I have suffered for over 15 years non stop as it started when I was a teen. Sadly its become part of my life now! The feeling of cramps I mean.

Everyone here has given you great well thought out advice. I love Jan 😊 her advice always perks me up.. i think cis she has lots more experience than we do.

Don't worry my entire family laughs at my last min running antics to the loo... i don't mind as laughter is a good mefication for me rather than getting depressed and moping around.

After joining this forum my attitude towards my feelings of IBS has improved so much abd I don't feel overwhelmed anymore.

I have also the same pattern as you. But as Leenipie and Jan mentioned rightly so patterns in IBS can change and alter through build up in time. My body has at times become intolerant and tolerant towards the same food at different times!

During my 1st pregnancy i was IBS free and ate whatever I wanted although it was healthy. But during my 2nd pregnancy I was having episodes and attacks every week😢 the entire 9 months.

Even now... I do react to Fodmaps and its such a great help and mostly enlightening to help us understanding.. it doesnt mean your symptoms have to be the same as fodmaps pattern etc..

So theyre right.. through the years your intestines can change their reaction to foods.

For eg. IBS sufferers are to stayvaway from white bread but wholemeal bread is high in fibre and over works my bowels and it doesnt help but white bread doesnt. Trial and error my friend.

Medication.

Like you i do not particularly like to rely on them. But Buscopan is my best friend😆

And i only take it on severe cases. I usually like to endure it if i can.

All the best!

13

Hello Swtz

That may explain ASD in itself.  It is Autism Spectrum Disorder.

I should be grateful then as I was a later starter but I find it hard to be and instead I am jealous of those who start in their 60's and even more jealous of those in their 80's who have never heard of IBS.  I wish I had not.  Teens, that sounds awful.

5 years for me and I still do no accept cramps as part of my life but I do know what you mean and yes I am in denial but at the same time obviously trying to embrace anything which may help.

I have not had time to implement yet as only a few days since I heard of Fodmap. 

In the end this became too much for me so I am on my own now.  It is good that you can share this but I can not. I probably do more of the latter of what you mention.

My attitude is still one of anger and frustration towards it. I do not seem to have a trigger and accept what one person said about a build up which I did not realise was possible but it does seem to be more the case compared to eating the same foods and week apart and being ill on both occasions.  This never happens to me.  I have kept diary and after diary and analysed the results in spreadsheet form and there is definitely no trigger so build up can be the only explanation.  I say that like I knew but I did not.

I can not imagine what that must have been like.  Mine has just caused me problems in relationships and work which is mild by comparison but major to me as last straw for one partner which is fully understandable.

I need to look at fodmaps but think I switched off when someone said apples is on the bad list and I eat an apple every day.  If there is one area, other than poor communication, where ASD takes over it is food.  I only eat certain foods so changing any part of my diet is a huge thing to me.  For normal people it will be simple but for me it is not the same.

I therefore need to try and work out what I can change in a minor way.

That is one change I have already managed.  White bread has been out for 5 years although at the time I became very upset and thought brown bread was rubbish but now I eat it.  I tried gluton free once but almost made me ill it was so horrible so stick with Hovis Wholemeal. I had two slices last night and not ill yet.

That is another problem I go through periods when I drink water, eat good salad like spinach, scrambled egg etc etc and not go to the loo at all and this makes me much worse later.  I do not know how this can happen as I am eating fruits and yoghurts and lots of good stuff.

I will have to look into that but there is a thread on Buscopan in here and there were some negative comments.  I will have to recheck that thread.

So far I have just endured and at the end I am a tired sweaty mess who can hardly walk to the bed but I have endured. 

Thank you and I might start some threads on food as my knowledge is so basic it is unbelievable but I have always stuck to the same pattern, ASD in action, so never needed to know much until now. 

 

14

yes oats= porridge or oatcakes, root vegetables eg carrot, parsnip. be careful with steaming, some people find cooking more thoroughly eg boiling makes food easier to tollerate, but you will have to see how you go, it may make no difference.

it is up to you what fruit you eat. grapes are low FODMAP but i only recently found out they are high in insoluble fibre, again i guess it just depends on the individual. they never gave me issues but then i have never eaten them every day.

all meat is FODMAP free so should technically be ok to eat, though some people find fattier meat eg lamb to be upsetting. i really doubt it was ,eat making you ill though.

the buscopan really do help, and i have never had side effects. it may be worth trying them for a bit? of course this is up to you.

i know what you mean - you would never wish this illness on anyone but it is also nice to have support from others

15

I had porridge this morning. I left out the banana just in case it was a possible issue. I have been told by people here that banana is good but I still have my list from the nutritionist about foods which can cause constipation and bananas were on that list along with red meat. 

I have started having a carrot for a snack in the afternoon rather than a biscuit. 

When I have carrots with a meal I will boil in future. 

Grapes are a diffiicult one as I know they have a lot of sugar. I have friends with diabetes and it is one of the fruits they had to cut out hence my initial uncertainty. I like to use them to top off my fruit salad. Whilst I am on that point there is a statement an apple a day keeps the dentist away as apples are good for you. If that is the case why are they viewed as bad here, any ideas?

If my issue is build up rather than a specific food I am now working on foods more likely to have the effect of going to the loo in the hope this stops the main illness cramps etc.

For me I think meat is an issue because I used to eat a lot of meat and at this time I was ill 2-3 days a week. Admittedly I was working so stress may also have been an issue but as soon as I gave up meat I lost a stone very quickly and the gap between illnesses grew. Now I do not know if cutting out meat led to this as no meat meant no wine so there could be a few things going on but either way I have decided meat is not essential for me. I will eat it when I am out as I like to know what my food will taste like before it is served and steak is the same wherever I go. I know this is weird to some but not to me.

You could be right and could be wine I don't know for certain. 

Do you take buscopan daily or just when you feel an attack coming on. 

Well there is one person but yes it is definitely nice to have the support.

 

16

I love carrot sticks as a snack and they have never given me trouble so hopefully you will be fine too. If they are fine for you raw then it won't matter if you boil or steam for dinner.

I've no idea why apples would be bad. They are a good source of soluble fibre. They do have FODMAP s but if you don't react then carry on with them.

Fair enough about the meat. Wine could have been a trigger as alcohol often causes big problems for ibs.

Going more regularly will definitely help as then the gut gets into a pattern and the whole thing calms down.

I only take buscopan when I need them, but if I'm having a rough time I will take them 4 times a day for a few days as they do work better when you take them regularly.

17

Excellent. I had a carrot yesterday and another today with little impact so that is good.

I eat one daily but still not kickstarting my body. I also have a plum and a handful of grapes.

I have cut wine out except for special occasions Christmas with the family sort of thing and I will eat meat too but other than that it is out.

That is my plan too just struggling to implement at present.

That is good re: based on need. I could have done with something like that when I was ill last week so good there is the option not to take religiously as my memory is not great.  I forget things easily but other ASD sufferers have left doors open when going out so it could be worse.