My journey with IBS ( irritable bowel syndrome) and the rest of it

[exxos]

While this is somewhat of a personal topic, because of the hell its put me through I thought I would document it in case it helps some other poor soul out there on the inter-webs.

it may be a little bit descriptive in places. So if you are squeamish in the slightest or not really interested in such medical conditions then please turn away :)

How it started.. About two years ago I started with was slightly upset stomach. It was so slight I was half wondering if I was just imagining it or not. This went on for a few months.

Later I seemed to always have a slightly worse upset stomach when I was at my girlfriends. Eventually I wondered if it was because I was drinking more cups of tea at hers and I would ordinarily do when I was at home. this went on for I think a couple of weeks until I decided to have a milkshake to finish off the rest of the milk. So it was a rather big glass! a few hours later my gut was in extreme agony. It felt like my whole insides was going to explode. The pain was indescribable to the point I was considering ringing for a ambulance, a decision I definitely do not take lightly believe me! but I battled it out and I was ending up with extremely bad trapped wind very loud rumbles from my gut which was extremely painful but a few seconds later the majority of the pain lessened. Over the next few hours the pain got less and less. It did not really take long to figure out I was lactose intolerant all of a sudden. Even a slight bit of regular milk in a cup of tea was enough to cause me upset. So I cut out drinking milk and having cups of tea for the time being. But I was still having that slight gut ache still.indeed a lot of foodstuffs have milk in them. So I had to rule all that out as well which took a lot of time. And is still actually ongoing.

I think it was the summer time where the pain was worse but I could not understand why. The only thing I possibly linked it to was that I was undoubtedly drinking a lot more because of the hot weather but I could not really understand how that would be a factor. I was intermittently getting gut pain in the mix of all this as well.

It was not until about a year ago that I purchased two tins of sweets from the local petrol station. I picked up two different flavours. Unknowingly one was a sugar-free 10 and the other one was normal sugar. The normal sugar one I quite happily munch through without seemingly any side-effects. However the sugar-free one, the first one I was sucking seem to make my stomach churn and grumble which I never really thought much of it. Could have just be " one of those things" this does happen anyway. So I sucked the second one and then the rumbling and stomach pain started getting worse. I then started sucking a third one and thought this is not right there must be something in these sweets which is upsetting me. Looking on the tin it was just basically contain sucralose sweetener.

After much looking around the Internet it seems to be a common problem as a evident for people with IBS. though that particular sweetener did not seem to be actually listed in any of the sites, or at least the majority of them which I could find. so I started looking through all the foodstuffs I was consuming to see if anything had this sweetener in them. To my amazement the dilute squash drinks all have it in! so finally the link was made from previously why I suspected drinking a lot more cause the problems to be worse in the summertime. while all these sites generally say sweet there is safe, a lot of sites also say it is a irritant. clearly it is, at least for me! I remember reading a study saying they was giving sweetener to rats and it cause them to become lactose intolerant if I remember rightly. When I think back to how long I had been drinking squash, basically way back into my school life and drinking it daily. I really do wonder about the "safety" of long-term consumption of sweetener. Considering it now has been linked to killing the gut bacteria which is responsible for breaking down the lactose sugars in milk etc.

Aspartame sweetener does not seem to affect me. I have not really consumed a great deal of that yet. I do drink Pepsi Max which has that sweetener in it. But I generally only drink one or two a week if that anyway. But in any case effect or not, it is not giving me masses of agony like sucralose sweetener does. Apparently Aspartame is actually a very old chemical concoction which has had the most testing done with it over the years. I assume all the other sweeteners are basically just cheaper knock offs of it. I have not really researched this by any great amount. I am somewhat reluctant to consume any products with sweetener in them now. Which is rather difficult when you start reading the ingredients of drinks etc!

During all this time I was doing the " elimination diet". it is a lot harder to do than you think when you consume multiple different items daily. The general consensus is that people who are lactose intolerant can " stomach" it in small amounts. I may be able to consume a small piece of shortbread a week but I definitely cannot eat it everyday because the stomach pains start coming back. It is a very long ordeal which I think has been ongoing near enough daily for the past couple of years. That time I've had a poorly gut but at least I found two things which definitely upset me and I can avoid them like the plague.

Fast forward to basically these past few weeks and I have noticed while I do not really have much gut problems now. my bladder seems to be getting upset for no apparent reason. After much googling it then becomes clear that it is overactive bladder (OAB). annoyingly like many things nobody really knows what causes this condition all really how to solve it. However at the time I thought it was just another symptom of lactose intolerance or sweetener intolerance. But this was something different. Ironically I was linking this back to drinking tea again even though I had been drinking lactose-free milk for over a year now without issue.

For those who do not know what overactive bladder is. it is basically a condition where you need to go for a wee, but it suddenly comes on like someone flicking a switch and it is like the worst possible feeling you have ever had that you need to go wee. Only the problem is, he cannot actually go half the time :( you get this feeling where you really really want to go and you feel like you are going to literally wee yourself, only nothing happens and that feeling intensifies as literally the minutes pass. if you do actually managed to wee, the feeling does generally subsides but only for a short time. Basically within a hour that feeling comes back again. As people know I have difficulty sleeping a lot of the time as it is. So getting up every half an hour to go to the toilet because of this really takes its toll on you after a while.

Because I have been eliminating food and drink items for a while now. I was pretty much living on water and toast for the past few weeks because I just wanted to "reset" my gut before I started trialling other foods.I was basically okay for the past few weeks without much trouble. Until Christmas Day that is..

So I had Christmas dinner on Christmas Day of course. I was not really eating anything out of the ordinary. Just the usual stuffs. So I decided to trial a cup of tea. A couple hours later I went to my girlfriends and a couple hours later I went home. Only the urgency to wee came back with avengeance. I was only a few miles away from home so I (hypothetically) floored it on the way home going as fast as possible. Only to get home to wee and nothing happens. I really can't emphasise how urgent you feel you want to go and you just literally cannot go. So I was basically going to and from the bathroom for the next several hours until finally I did go a little bit now and then then the pains slowly faded away. So WTF now I thought ?

Again more looking on the Internet and there was various theories of why cups of tea can upset people. One was the acidity level in the tea can affect people with sensitive bladders. Though this did not really seem to be the case because I basically have a small orange every day with no ill consequences and even drink fruit juices more often with no consequences. It is also then you realise that tea actually has caffeine in it which I never knew! so few days have now passed and I have got some caffeine free tea which I have had 2 cups of tea so far today without consequence.

so after two years I have finally figured this out :

1) lactose intolerance - milk related items.
2) IBS - sucralose sweetener.
3) OAB - Caffeine.

Unfortunately a lot of foodstuffs have one of those things in general :( it is why it has taken such a incredible long time of trial and error over the past two years. And having these issue for such a long time is certainly not pleasant.

In terms of lactose intolerance, I do seem to be able to stomach the occasional pizza. But indeed no more than one per week. It seems the high the fat cheese in items are less lactose it has in it. A few weeks back I was eating normal grated cheddar cheese with some crackers without issue. But there was a span of having cheese and pizza and cookies and basically various items which would contain milk (lactose) and I ended up with a bit of gut problems again. The only reason I was really trialling this was because lactose-free cheese is more expensive. But indeed I will have to stick with this and lactose-free milk. I did manage to stomach some rice pudding for a few weeks. But all of a sudden those upset me again. So I don't know if I was just having too much lactose related stuff for their change the supplier of the rice pudding. I have got a tin of Ambrosia rice pudding in the cupboard because it is basically the highest fat content which I may be able to eat. Certainly not looking forward to trying that one out.

one last thing I have found a bit of a coincidence relating to OAB. Is some study I was reading claimed that people with OAB had a zinc deficiency. Ironically I was taking zinc tablets because I thought they were good for IBS. though I suspected they were causing me upset as well so had not taken any for a long time. so I took a zinc tablet last week and coincidentally the days after I did not have any bladder troubles. They did seem to trigger off my IBS symptoms. But apparently zinc can be a irritant to the gut. so I make sure I always take them after I have had something to eat and a good drink (of water) and seem to be okay doing that. While tablets are generally said to take weeks or months to "kick in" I don't really think that is the case unless it is extreme coincidence. But I don't think it is..

Because going back probably 10+ years ago I was having shooting pains down my left leg which were rather painful. This progressed into my feet and even my hands. Though I cannot remember exactly what vitamin it was, I think it was vitamin E. but literally the day after taking them the pains went away and I have never had them since. After having these pains for months on end for all the sudden just to suddenly stop I don't believe is just a coincidence when I started taking vitamin E. Again vitamin E is from memory. but the vitamin deficiency had been linked to such pains as I described so the link is there. But this was also a bit of trial and error because I basically went through all the vitamins one by one to start with. While A,B vitamins could have been a factor I had not really been taking them that long anyway. And vitamin E being linked exactly to my symptoms as well..

It is also rather problematic that I take antihistamine tablets and other tablets which all seem to have the bulking agent made out of.. you guessed it.. lactose! so indeed I have stopped taking the majority of tablets for the time being. I generally look for the paracetamol and Ibroprofen in capsules. they are a lot more expensive than the tablets but needs must as they say..

But on the subject of vitamins I don't profoundly subscribe to them either. But what I did find interesting, is that while I could have a zinc deficiency, the reverse of that is having too much copper in your blood. Which can give the appearance of zinc deficiency. I also now think taking multivitamins is basically pointless. Because if you have too much copper in your blood, and you take a multivitamin to counteract the apparent zinc deficiency, then you just up the levels of all vitamins and accomplish basically nothing. The imbalance between the zinc and copper would still be there.

Also ironically folic acid seems to be in the mix along with zinc. The irony being the majority of the items with those vitamins in them we stopped actually having a while ago. Things like red kidney beans and chickpeas. It seems we stopped having them because we could never eat the full tin, so we ended up chucking away a lot of them. also similar related foodstuffs we stopped having because of similar wastages. Indeed am trying to reintroduce these into my diet has a more regular thing again.

Of course this vitamin stuff is a highly debatable subject and it is just my opinions based on my own personal experiences. I personally would not recommend anyone taking multivitamins unless you have a specific need to. If anything, if you have any sort of health issues then just literally go through them one at a time A-Z. or battle it out with your doctor to get a blood test.

As a side note of OAB. I did buy the test strips which test multiple things to do with your your urine. Things like infections and PH levels , blood mass etc etc. Basically I had a clean bill of health across the board quite literally. I don't expect them to be 100% reliable. But as a quick indication it was good enough.

So at this point in time I think I have concluded all my gut related problems. Hopefully I will not jinx it! also hopefully I don't end up with any other related problems as diagnosing foodstuffs one at a time takes a incredible long time to do.

Now if I could only solve my sinus related issues...... :lol: :roll:

I hope this will be of useful to someone else who is suffering out there. There does not really seem to be many personal people's accounts of experiences and diagnosing these issues. so indeed if you are a sufferer, you're not alone and maybe my trials and tribulations will help some other poor soul one day.

[stephen_usher]

I was diagnosed with Crohn’s Disease in 2014 and it seems anything in the onion family will trigger it and cause me to be ill for a couple on months. (I spent a couple weeks in hospital before I was fully diagnosed and my GP at the time wouldn’t believe I was ill until a locum got me rushed in hospital.)

I’ve had on and off stomach pains since the mid-80s and thought nothing of them. Looking back I may have had some symptoms back into childhood too.

As long as I stay away from onion/garlic etc. I’m generally OK, though recently anything which can take sugars down into the small intestine, such as currants, raisins and sultanas can cause me to have a long of gas production and later annoying trips to the loo, which suggests a yeast infection in the gut.

IBS etc. isn’t uncommon these days, I know quite a few people with it to one degree or another.

[exxos]

I was diagnosed with Crohn’s Disease in 2014 and it seems anything in the onion family will trigger it and cause me to be ill for a couple on months.

That sux :( I did consider Crohn's as well. The symptoms did not really fit ( at least currently) . One of our neighbours actually had the same thing as well and I know she had to pack in work because of it.

IBS etc. isn’t uncommon these days, I know quite a few people with it to one degree or another.

Lactose intolerant is a lot more common than people think as well.

[Steve]

There is a third condition you may not be aware of, like chrones and IBS, Ulcerative Colitis:
https://www.nhs.uk/conditions/ulcerativ ... ving-with/

My Dad recently started getting this and he literally can't control his bowls (ie you don't even have time to get to a toilet) Ironically the advice is a low-fibre diet, quite the opposite of today's nutrition advice. All my Dad's life he's eaten a poor diet of junk food, sweets, take aways - not sure if that is a cause, but now he can't eat a healthy diet even if he wanted to, because it just goes through him.

[sporniket]

About lactose intolerance, I am wondering whether products like yoghourt (the one without aroma nor sweetener of course), full of lactobacillus that breakdown the lactose, would be allowed by your guts ?

[exxos]

About lactose intolerance, I am wondering whether products like yoghourt (the one without aroma nor sweetener of course), full of lactobacillus that breakdown the lactose, would be allowed by your guts ?

I assume that is the bacteria which is put into lactose-free milk which breaks down the lactose ? Not sure I have specifically seen those sorts of yoghurts though...

I have been wondering if I drank milk and then ate cheese or something, if the bacteria continues to work on lactose. But I have not been able to find any information about how long the bacteria lives for or anything. I know you can get stuff you mix and supposed to drink a cup of before eating anything dairy. I have not tried looked into that either.

I stopped having yoghurt's basically.. But I started having the SOY based ones and fine with those.

[exxos]

There is a third condition you may not be aware of, like chrones and IBS, Ulcerative Colitis:
https://www.nhs.uk/conditions/ulcerativ ... ving-with/

I had not heard of that one.

I think for anyone reading this thread in the future. I should point out I have had no other symptoms like uncontrollable diarrhoea ( aside from if I drink milk etc) no blood in the stool or anything strange or out of the ordinary coming out.

[russellnash]

Many illnesses are caused by diet but it is difficult to know what causes what and many people are programmed to go to a doctor to get a a tablet to fix it. It often doesn't work. I had similar symptoms 20 years ago but luckily it stopped after about 6 months. I was never able to find a logical explanation as to why, but I was glad. I now have Rheumatoid arthritis, which messes up your soldering skills, among other things. According to a specialist doctor, it is incurable. It is now under control, the culprit seems to have been decades of overdosing on wheat products. I now eat spelt instead. If you can't buy, it it is easy to bake spelt bread, it is just a matter of following written instructions, like many things. Wheat is also responsible for other common illnesses.
Most of what I learned about diet I learned when I lived in Germany by coincidentally getting to know certain people. There is a group of doctors that specialise in trying to cure just about everything through diet, and it works very well. They have written various books and one is specifically about digestion problems. I don't know anything about eBooks but maybe it is very easy to do a copy and paste and to translate it in minutes. Here is a link in case anyone is interested in this subject.

Diet Doctors

[rubber_jonnie]

I suffered for many years with sinus issues, and even had an operation to open up the nasal passages, but it wasn't until I moved to a different base (I was in the RAF at the time) that the doctor there suggested I stop having normal milk.

At the time alternatives like soya, almond, rice milk etc weren't generally available, so I cut down and it helped hugely. These days I use soya milk and it really helps, otherwise my nose gets very snotty and uncomfortable.

Also, I have recently had my ears cleared of wax, which has had the side effect of improving my sinusitis. I also think that there are environmental factors since where we live they are still building houses, so I think there is more dust in the air than most places, including things like cement dust which is very fine, so I also have to take a daily antihistamine tablet to keep things under control.

I can tolerate cows milk in tea/coffee/cereal for short periods if necessary, but I know I've had it and have to revert back to soya as soon as practical. While not diagnosed, I do believe I'm mildly lactose intolerant.

I did try Lactofree milk, but the flavour was horrible. I also found that some Soya brands also have all sorts of things added, to the point where they just don't taste nice either, so I have the basic unsweetened soya from Asda, and it's even quite nice as just a cold drink.

I've never really liked the 'normal' sugary carbonated drinks, I always found them too sweet, so for years I drank diet Coke before moving on to the like of diet Pepsi, Pepsi Max, Coke Zero etc

I also use sweeteners in tea, but the trouble is, aspartame, saccharin, sucralose, acesulfame-K, cyclamate are recognised as bad for diabetics (I have been diagnosed for 11 years) and I am sure these compounds are all likely to cause problems elsewhere, so I do try and limit my intake of them. Stevia is supposedly a good alternative, but I found it didn't sweeten things for me, so I guess it's not for everyone.

Good luck in your battles, it is really difficult to understand what's in everything we eat and drink and I think there are probably a lot of people suffering because of that.

[exxos]

I can tolerate cows milk in tea/coffee/cereal for short periods if necessary, but I know I've had it and have to revert back to soya as soon as practical. While not diagnosed, I do believe I'm mildly lactose intolerant.

Just drink 500ml of regular milk. If you end up with severe stomach pains a few hours later than then you know ;)

I did try Lactofree milk, but the flavour was horrible.

My girlfriend's mother said exactly the same. But it does not any real difference to me :shrug:

I also found that some Soya brands also have all sorts of things added, to the point where they just don't taste nice either,

When I first starting having the soy bloggers they had a really nasty chemical type of "tang". I kept on eating them ( did not really have any alternative) but after a short while I cannot seem to taste that tang any more and actually quite like them now.

I've never really liked the 'normal' sugary carbonated drinks, I always found them too sweet, so for years I drank diet Coke before moving on to the like of diet Pepsi, Pepsi Max, Coke Zero etc

I rarely drink any pop. Tend to more in the summer when it's hot though.

But thinking back like 20 years ago now. When it was really hot in my old workshop I used to grab a can of Coke out of the vending machine because it had been chilled. Only I could never drink more than one a week because it would give me stomach upset. I thought it was really just down to the carbonated aspect but now I think about it maybe it was caffeine.. I could have been intolerant to it for a long time and just never knew it.

I also use sweeteners in tea, but the trouble is, aspartame, saccharin, sucralose, acesulfame-K, cyclamate are recognised as bad for diabetics (I have been diagnosed for 11 years) and I am sure these compounds are all likely to cause problems elsewhere, so I do try and limit my intake of them. Stevia is supposedly a good alternative, but I found it didn't sweeten things for me, so I guess it's not for everyone.

I'm going to try a larger dose of aspartame with some sports drinks I got a few weeks ago, next week. I think the problem is with all these chemical concoctions, while they have been "proven safe" what about all the other chemical concoctions and everything else in our foods we eat, in the stuff we drink, have showers in chemicals, do the washing up in chemicals, wash the car in chemicals. I really would like to know if any research has been done for all these chemicals bombard in our bodies for over 30 years what effect all that has.

Good luck in your battles, it is really difficult to understand what's in everything we eat and drink and I think there are probably a lot of people suffering because of that.

Indeed, I am still puzzling over when things say "flavouring" on boxes. It does not seem to really specify what it actually is a lot of the time. I did email Aldi a while back asking them to clarify what flavouring means. But as usual questions are met with silence. Similar when I emailed Arla because some of their milk has a pink tint to it and wanted to know why and report it. Just end up getting nowhere as usual. So I just stopped buying it and bought it from Aldi instead.

As a side note. I have been drinking the decaffeinated tea the past few days. A side note that is it seems it is decaffeinated with.. you guessed it, chemicals. I seem to have been okay with it. But I have ended up with a bit of upset past couple of days but I drank a full carton of pineapple juice an tube of Aldi crisps over the weekend as well. Which I do not generally do. So waiting for everything to settle down and I shall just try the tea on its own again next week. I have read that capacity type of things can upset people with OAB issues. So I'm basically pinning my theory on drinking a whole carton of that over the weekend. My symptoms were not anywhere near as bad as when I drank a cup of normal tea though. So seems I have a little bit more research left to do yet :roll: