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Lost, Worried, Scared. (35yo M)

DonnyInPain profile image
71 Replies

Hello,

I'm a 35yo male, I've been experiencing stomach pain for around 6 months now.

It started as a central pain just 'under' my belly flap (I'm overweight but have lost around 2st and losing more by the day) and it didn't affect my bowel movements at all, except an occasional bout of quickly resolved diarrhoea.

The pain moved around my belly area, and I also had chest pain and breathlessness.

I ended up going to hospital about it.

It was thought to be acid reflux. I got pills for that and it seemed to be fixed.

But I still had the tummy pain.

They eventually did an ultrasound scan and found a slightly enlarged spleen, a gallstone (not inflamed) and fatty changes in my liver.

They couldn't confirm or deny the existence of a hernia because the doctor performing the ultrasound said it's not the best procedure for that.

Anyway, symptoms came and went, again nothing really affecting my bowel habits beyond an occasional bout of diarrhoea and occasional constipation.

BUT THEN over the last few weeks I've been in agony. A discomfort that never ends. Stomach feels bloated to bursting, unhappy, unsettled and I've had sharp pains followed by diarrhoea mostly during the night (waking me and disturbing sleep) and also constipation (with tiny poops).

I went to the doctor and she ordered a blood test and a stool test.

Bloods were fine, but stool sample must've told them something as they diagnosed me with 'likely' IBS.

In an effort to combat the pain, I researched IBS and I've been eating only low FODMAP foods and drinking water - no alcohol or caffeine or fizzy pop (not that I drank a lot of these before).

I don't smoke.

I've been on FODMAP for around a week, eating less, eating healthy and getting exercise. I have lost weight.

I thought it made a big difference early on but now my bloating is back worse than ever. I know FODMAP takes a few weeks to really work so I'm sticking with it but at night, it's absolute agony. My stomach feels like it's going to burst. But nothing much happens when I go to the loo, there's not much there and what there is is loose.

I'm drinking peppermint tea and trying to relax but it's not easy.

I don't seem to be able to fart or burp as freely as before. I dare not fart now in case some fecal matter expels with the air.

I started taking buscopan to take the edge off the pain and I contacted my doctor again and they prescribed Mebeverine.

I started it today.

I'd never had any real trouble with my stomach or bowels before this year (2022) so this is very much a shock and I'm terrified, to be honest.

I have been very stressed with work (professional driver) and with personal family matters. I suffer from anxiety and panic (especially related to health issues) and my stress levels are very high.

My job is extremely difficult to do with a condition like this. It's almost impossible to feel relaxed and calm. I'm so afraid of soiling myself.

My bowel doesn't seem to alert me like it used to that I need to go to the toilet (it's like guess work) and I have to push quite a bit when I do go, so I'm worried my colon has become ineffective.

One thing, I started drinking kombucha drinks early on in the year and regularly throughout summer. I've stopped that since the discomfort started - should I go back to drinking them?

Am I doing the right things?

Any advice or help would be greatly appreciated. I'm a young(ish) guy with a wife to support, I can't afford to be ill.

I'm at my wits end.

Donny

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71 Replies
Viklou profile image
Viklou

You need to find out what they tested in your stool sample. Was it for blood or inflammation. Ideally you need both testing. The fact they've said likely IBS after results came back means they didn't see anything in the stool sample given.IBS can only be diagnosed once everything else has been excluded. Ideally you could do with a Colonoscopy to rule things out properly.

DonnyInPain profile image
DonnyInPain in reply toViklou

Thank you, trying to get hold of my doctor is an absolute nightmare. You have to get past the receptionist and then a surgery telephone consultation. It's got a lot harder to see or speak to my doctor in person.They said try dietary changes for 3 months and then they'll refer me to gastroenterology. They do not seem willing to send me before then.

Viklou profile image
Viklou in reply toDonnyInPain

Can you view your records on line. If you can get patient access that would be brilliant

DonnyInPain profile image
DonnyInPain in reply toViklou

I don't even know how I'd begin to get that access. How would it help?

KCRoyals profile image
KCRoyals in reply toDonnyInPain

It's really interesting and shows a lot of problem areas. Usually, tolerances for each condition are shown and you can then check them yourself on search engines.

Daz1113 profile image
Daz1113

Sorry to hear of your suffering. But you need to ask for a colonoscopy. Plus in the mean time. Try a low residue diet and lactose free. It’s a nightmare illness if it is IBS. The unpredictability is the worse. Good luck and I hope you find some answers

DonnyInPain profile image
DonnyInPain in reply toDaz1113

Thank you so much for your reply.I don't know how I'll cope with this. How do I earn a living with this condition?

They said try dietary changes for 3 months and then they'll refer me to gastroenterology. They do not seem willing to send me before then.

Daz1113 profile image
Daz1113 in reply toDonnyInPain

just go back to your doctors and tell them it’s effecting your mental health and tell them you want a colonoscopy. Also you can ask your doctor to fast track it and also for you to go private as a NHS cost.

I lost my job on the 17th December 2021. I was a crane driver for Jaguar Landrover. I have literally tried everything. Including numerous drugs. The main thing that has helped me. And I’m nearly at a stage where I can work again. Is the low residue diet and lactose free. And the consultant Dr Arthur is the person who told me to go on it. He’s also told me to go on a fodmap diet. But I’m not ready to try that at the moment. Both of them diets low residue and lactose free are easy to follow. I have only been on these diets for maybe 6 months and I have seen a massive improvement. Don’t get me wrong I still get flare ups. But a lot of the unpredictability and the horrible Tenesmus has gone. I would not wish these symptoms on anyone.

Hope this helps. Good luck.

DonnyInPain profile image
DonnyInPain in reply toDaz1113

Man. That sucks, losing your job. It's such a difficult situation. I'm glad things are improving for you. I hope you get your job back.I think mine is mostly stress-induced so I'm trying to get on top of that. Talking helps.

The Mebeverine seems to have calmed the painful bloating but I haven't had a bowel movement in days, although I am eating a lot less now.

I'm not very good at being forceful with doctors, but I've told them my mental health is affected but they just said keep trying the dietary changes and they'll refer me in 3 months.

Daz1113 profile image
Daz1113 in reply toDonnyInPain

You’ll learn with this illness you need to be forceful with the doctors and in the end. You’ll know more than them about this. If you’re uncomfortable phoning the doctor. Get your wife to do it. Say the worry and the family dynamic has changed completely. The stress is affecting all your mental healths. And you want to be put on the list for a colonoscopy.

Everyone’s experience is different. I’m extremely stressful and continually add to my chains of worry haha but av been like that my whole life. Stress definitely makes it worse.

I have a class one and two licence so can imagine your worry. I’d take a bucket in the lorry with you. And a few plastic bags. At least that might ease the worry of having an accident. Also carry Imodium with you. Deffo try them diets. As for exercise. When you’re bloated and the fatigue that this causes it makes it a struggle.

DonnyInPain profile image
DonnyInPain in reply toDaz1113

Thank you for your advice.I'm actually a bus driver so a bucket wouldn't be very good in front of the passengers! Haha

I've also been anxious my whole life and added more worries than I needed to. It's exhausting.

It's the worst thing knowing something is wrong and you can't fix it. I'm worried about my job, about my wife, about life.

DonnyInPain profile image
DonnyInPain in reply toDonnyInPain

It seems the low residue diet is completely opposite to low FODMAP diet.Which is both confusing and scary.

I guess if I have chosen FODMAP, I should stick with it until the reintroduction phase. I don't want to swap and change and confuse my gut further.

But I will certainly keep it in mind.

Daz1113 profile image
Daz1113 in reply toDonnyInPain

Have you got a dietician helping you with that diet? Good luck. I seriously hope you find some relief.

DonnyInPain profile image
DonnyInPain in reply toDaz1113

I haven't, no.I've done through self research.

I've also ordered a YorkTest, to see what I'm intolerant to and if I have any allergies to certain foods.

Angie11 profile image
Angie11

Hi Donny, sorry to hear how miserable you feel. I’ve had stomach issues for years now. Low Fodmap didn’t really help me much but I do stay away from processed etc etc. Buscopan can cause constipation as it slows the gut down. Have you thought you might be constipated? having overflow diarrhoea. Wish I could be more helpful.

DonnyInPain profile image
DonnyInPain in reply toAngie11

Thank you. I'm not sure - I do spend a lot of my day sat down and I know that's bad for constipation. Not enough exercise.I'm trying to change that.

Angie11 profile image
Angie11 in reply toDonnyInPain

sounds like you are doing all the right things for now. But you do need to have further investigations done. Exercise is hard to do when you feel bloated and in pain, so don’t push yourself too hard. There are lots of Facebook groups discussing this very subject. You might get more answers there. Good luck.

DonnyInPain profile image
DonnyInPain

The good news is that the Mebeverine seems to have calmed the painful bloating, which is a wonderful relief.

xjrs profile image
xjrs

Have you tried Alflorex probiotic, which has been scientifically studied for IBS? You may have a gut bacterial imbalance. I would try that as soon as you can since it may make you more tolerant to different foods, so that you don't need to eliminate so many. You can also try the Nerva gut directed hypnotherapy app available through your mobile app store.

The specific question for your GP is whether the calprotectin marker (a marker of inflammation) was low and that is why they are diagnosing IBS. Are you in the UK? If so, most surgeries now allow you to message them through their own websites. Some surgeries give a quicker response this way. If your calprotectin markers are low, then it is unlikely that they'll refer you for a colonoscopy.

If Alflorex doesn't work for you or not well enough, your GP should be referring you to a FODMAP trained dietitian. It isn't something that you should be doing on your own since it requires guidance.

DonnyInPain profile image
DonnyInPain in reply toxjrs

That's what I thought! But they just said it's up to me to try different diets. It seemed very irresponsible of them.Yes, in the UK. I'll try emailing them. That's a great idea!

I've heard of Alflorex and had considered taking it. Is Alflorex safe to take alongside Mebeverine?

I also didn't know whether to go back to drinking the kombucha tea drink again or not...

xjrs profile image
xjrs in reply toDonnyInPain

Alflorex is perfectly safe to take alongside mebeverine as far as I am aware. The 2 products are distinctly different from one another. If you are taking Alflorex, I wouldn't go back to the kombucha tea drink yet. Alflorex contains Bifidobacterium, which is one of the strongest probiotic strains. It is passed from mother to baby during a natural birth to prime the immune system. This is why it is so great at fighting infections. It is a single strain probiotic. When I researched it, the makers say that they don't mix it with other probiotics since sometimes different probiotics can compete with one another. Precision Biotics the makers have a help line in case you have any questions, or you can email them:

precisionbiotics.co.uk/cont...

One thing I've noticed that you've said is that you need to push to go. This probably means that you are a bit constipated. When you get diarrhea, it is possible that this is overflow diarrhea, with liquid food seeping past impacted stool. This will also come out without warning.

The mebeverine may be complicating things. It might help with the cramps, but it also slows things down. If you are constipated, this is the last thing that you need. What is your fibre intake like? Prior to taking Alflorex, some fibres, such as wholewheat bread may give you more pain. This is trial and error - you just need to try different things. You could try taking ground flaxseed with your breakfast. You could start with 1 teaspoon, increasing each day until you get a better formed stool. There are also chia seeds, which should be soaked in some liquid to form a gel. I mix mine with porridge and leave to stand for 15 mins. Again try 1 teaspoon per day increasing to a maximum of 2 tablespoons (6 teaspoons). Only try one new thing at a time and keep a diary of your symptoms and whether things are improving based on what you have taken, so you know what is working and what isn't. I normally know within 48 hours since that is how long food takes to pass through my system, but symptoms could show up to 4 days later.

Beyond all of this, if you are diagnosed with IBS-C - constipation dominant, there is a drug called Linaclotide which helps improve transit (so less water is extracted from your stool during transit - it is the dryness of the stools that can cause constipation) plus it calms intestinal nerves reducing pain. I have IBS-C with pain. Linaclotide reduced my pain by 50%-60%. When I added in Alflorex it reduced the pain to zero, which is why it is worth trying this first. I can eat more foods although there are some that still cause pain.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Thank you so much!

This is very helpful and informative.

I'm hopeful things will improve given time and effort.

I have been eating wholemeal bread, and avoiding white bread, white rice, etc.

I eat grapes, bananas, blueberries.

I've been eating porridge for breakfast. Fresh veg soup on a night.

I had 2 severe bouts of diarrhoea Monday night/Tuesday morning with sharp pain. I had one instance after this with small pellets (needing to push).

I haven't had a bowel movement since.

I had terrible bloating every night after until I started the Mebeverine, which I attribute the reduction of bloating pain to.

Still no bowel movement today but I am eating less and I assumed the diarrhoea cleared me out.

There's a little side pain but not as bad as before. It seems I can fart properly and safely now.

xjrs profile image
xjrs in reply toDonnyInPain

You got some good stuff going on there. It does take work. I was in your position. It took me a while to find out that my accidents were due to constipation. I was house bound with it at one point.

Further advice regarding constipation here:

These foods are high fibre:

8-9 Prunes

Shredded wheat (or if GF: Nutribrex)

60g Quinoa

75g Whole grain pastas such as Spelt pasta (if GF: Buckwheat pasta)

Potatoes with skins on

2 Hard pears

5 Dried apricots

90g Raspberries

1 orange (contain a natural laxative)

2 kiwi.

I find that I need to have 1 orange a day and then another high fibre fruit later in the day to help with BMs.

You could try Optifibre once all dietary options have been explored. You need to be careful with the amount since it can give you gas. It acts a prebiotic to improve the microbiome (why the gas) and bulks out stools. You need to follow the instructions on the tub about how to work up the dose.

Exercise can help with BMs. The government recommends 150 mins of moderate exercise (e.g. walking as if you are late for an appointment) or 75 of intense exercise (e.g. jogging) per week. I also have a bit of a walk around straight after breakfast to get things moving.

You need to ensure that you are drinking enough fluids (2 litres of fluid per day).

There is some good advice about constipation here:

theibsnetwork.org/constipat...

theibsnetwork.org/constipat...

Some people are more prone to constipation due to their intestinal anatomy. Through colonoscopies I have been told that I have a long loopy (redundant) colon. This means that food takes longer to pass through and in the meantime the intestines have more time to suck out water from the stool, drying them out and causing constipation. I have found that I need to consume much more fibre than other people to have regular BMs.

I have also found useful having most of my food at meal times, leaving 4-5 hours of not eating between meals, eating my fruit snack before a meal. This means that your digestive system has time to process each meal. It also allows something called the MMC (migrating motor complex) to run which sweeps food waste from your small intestine into your large intestine. This only happens when you have an empty stomach. When people snack regularly, it prevents the MMC from working properly. I also find the larger meals help to push things along better than drip feeding through snacking.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Hello,Thank you for all your messages and advice.

I started Alflorex today and a food diary.

Unfortunately I had a lot of pain tonight followed by D. The first half of the BM was normal (as my last couple of BMs have been - so I'd ruled out impaction) but 2nd half was terrible.

You mentioned this reaction could be due to foods eaten 48 hours ago.

I think it may have been sourdough bread or tomato.

I may not have been leaving enough room between meals.

It's very distressing as I thought I was making good progress.

I'll keep taking the Alflorex.

Any advice would be appreciated.

xjrs profile image
xjrs in reply toDonnyInPain

What do you mean by the second half being terrible? Do you mean diarrhea?

I've found that tomato still gives me pain and sourdough bread too, due to them both being acidic and a bit rough on the system.

You will find bumps in the road. This is why the diary is so important, since it will give you an idea of what might be bothering you and you can keep making slight adjustments.

Eventually those adjustments will get factored into your day to day life - some things OK, others not. I've always thought that I would need to come with a manual since to keep myself well, there are specific things that I tend to eat across a week to keep myself stable. When I have time and space I will try the odd new thing in future, knowing that it may disrupt me or may become part of my new routine. As always, work and trial and error, but worth it in the end.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Thank you.Tomato and sourdough bread are certainly the main suspects since I ate them 24-48 hours ago.

I was in a lot of abdominal pain.

At least the pain ended with the bowel movement.

Others in my household have also had unsettled stomachs (non-IBS) so I did wonder if there was a bug going around or something.

I meant the first of the BM was normal but the 2nd part was bad diarrhea. It changed.

Thank you for your quick response.

Flyonawall profile image
Flyonawall in reply toDonnyInPain

You're having a tough time of it. Your anxiety will be adding to the problem .The Monash university fodmap advice is the best available

You need to understand how to use it.The first few weeks are the elimination stage.

Whole meal bread is high fructan so it needs to go.

Grapes and bananas likewise.

The banana needs to be unripe .Blue berries are ok.So is citrus.

Quantities are important,several low fodmaps in larger servings can add up to a high fodmap.

Brown rice is ok,gluten free pasta probably ok.

Porridge is good with non dairy milk.

It's all a bit overwhelming if this represents a major shift in dietary habits.

Look at the fodmap lists and get plenty of variety.

Everyone is a bit different.

I find a useful snack is rice cakes(a bit like cardboard) with peanut butter...works for me.

DonnyInPain profile image
DonnyInPain in reply toFlyonawall

Thank you for the advice!It is overwhelming. I've found grapes and bananas on a lot of FODMAP 'allowed' diet lists so it's a shame they're not allowed!

There's a ton of conflicting information out there.

I think I'll invest in the app.

Flyonawall profile image
Flyonawall in reply toDonnyInPain

It's the level of ripeness with bananas. I found store bought grapes didn't work for me.If you have weight issue and fat build up in your liver then slimming down is really going to help you too.

Being a driver means sitting a lot.

Do you eat to try to quell your anxiety?

Relaxation techniques may help you.

You are embarking on a new way of living,your body is in crisis and asking for help.

Mind and body are connected.

DonnyInPain profile image
DonnyInPain in reply toFlyonawall

Yes, I am beginning to realise that my body and mind are not in a healthy place at all.My job has been a source of great anxiety, stress and inactivity.

This has led to unhealthy eating, fatigue and depression.

I need to take a look at every aspect of my life.

Flyonawall profile image
Flyonawall in reply toDonnyInPain

A big task,but you seem to have both the will, desire,and self awareness to take it on.Not easy,but if you don't have fairly good health then life isn't going to be much fun.A different job?

DonnyInPain profile image
DonnyInPain in reply toFlyonawall

Yes, I think a different job would be good. There'll always be driving jobs (and vacancies for them) so there's somewhat of a safety net there.But I could try something different.

Flyonawall profile image
Flyonawall in reply toDonnyInPain

I understand there's a high demand for drivers in the uk.Do you have other skills or interest to develop new ones.

in reply toDonnyInPain

Xjrs has some very good advice-obviously learned from their own experience! I was going to suggest the alflorex too. Buscopan slows the gut activity which can add to the constipated feeling too. On one trip to a and E for a separate reason a few years ago, a young man came in- there were 15 or so people waiting and he got to the desk and promptly collapsed. He was taken straight in with no waiting- it may have been genuine but it could equally have been a ploy to avoid the queue. What I’m saying is if you get to see you go, have a ‘violent’ attack of pain while you are there! I know it’s cheating but sometimes we need to be ‘ aggressive’ to get noticed!

DonnyInPain profile image
DonnyInPain in reply to

Very true! Not a bad tactic.

DonnyInPain profile image
DonnyInPain

I've emailed them through their site and asked the questions. Thank you for your advice.If the calprotectin marker was low, what does that mean? And why would that mean no colonoscopy referral?

xjrs profile image
xjrs in reply toDonnyInPain

Calprotectin is a marker of inflammation in the body. It is used as a guide as to whether further investigation is needed or whether IBS is diagnosed. If there is inflammation, it could point to inflammatory bowel diseases such as Chrohns and Colitis or even cancer. These can only be diagnosed with a colonoscopy. The chances of having these is much lower than the potential for IBS.

Even if inflammation markers are high, this doesn't mean that you have one of these diseases. You can have high inflammation markers, have a colonoscopy and still be diagnosed with IBS since the gut looks healthy - this is more likely to be the case.

Inflammation in the body can be caused by other things, such as your diet. High protein, low fibre diets can promote inflammation in the body. This is because they don't provide much feed for your good gut bacteria giving a healthy microbiome. It is having a healthy microbiome that guards against diseases in general, including IBS. This is why it is important to have as varied a diet as possible including fibre, providing lots of feed for the microbiome. When the diet is more varied, a greater variety of bacteria develops in the intestines. This is called bacterial diversity - another indicator of a healthy microbiome.

DonnyInPain profile image
DonnyInPain in reply toxjrs

The doctor called and said they couldn't refer me to a dietician as they only specialise in very serious conditions (anorexia, cancer) and they would refuse a referral for IBS.

They also said my calprotectin markers weren't indicative of anything more serious than IBS but didn't say if they were high or low.

They won't refer me for colonoscopy as there was no concern there but they would refer me to gastroenterology after 3 months of dietary changes.

Thank you for all your help and advice.

xjrs profile image
xjrs in reply toDonnyInPain

That's a shame. Maybe the funding has changed, since I was referred to a dietitian a few years back.

Hopefully with the Alflorex and dietary changes (increasing fibre), you will get back on track. Just be aware that low FODMAP foods tend to be lower in fibre and lower in feed for your microbiome, so may make constipation worse, though it is possible to have low FODMAP fibre sources such as Quinoa and Buckwheat. Note that the bulk of stools is actually made up of gut bacteria. Try the Alflorex and other changes before looking at a FODMAP elimination and reintroduction diet. Good luck.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Thank you!I already started the FODMAP diet (about a week in) and I don't want to confuse/upset my gut too much.

Do you think taking the Alflorex on a FODMAP diet would still work?

Thank you for all your help.

xjrs profile image
xjrs in reply toDonnyInPain

It would be OK take Alflorex at the same time. However, since it alters your gut microbiome and hopefully within 3 months improve things, you may find that some of the things that you'd previously eliminated from your diet become OK, but you won't know until you test that food again.

I would certainly take Alflorex as soon as you can, since you don't want to eliminate foods unnecessarily. I'm kind of in the mindset to stop FODMAP elimination and reintroduction until you see how Alflorex is working for you. Also being in the elimination phase, where you are cutting out all FODMAPs, this could make your constipation worse and increase chance of overflow diarrhea.

However, it is your choice.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Thank you, I am contacting a dietitian privately and I have an appointment to discuss IBS with my doctor in a couple weeks.I might get some Alflorex and see how it goes.

xjrs profile image
xjrs in reply toDonnyInPain

Well done for being so proactive and reaching out here. You will get yourself back on track again.

DonnyInPain profile image
DonnyInPain in reply toxjrs

Thank you so much. I really hope so.I guess I should be glad it's not anything more serious or life-threatening.

It's just so darn inconvenient but maybe it's my body's way of saying slow down/calm down.

in reply toDonnyInPain

my sister complained of similar symptoms and her gp put her on the ‘vague symptom pathway’ and had a quick response and blood tests and hers was unremarkable, but that option is open to doctors. Tell yours you can’t work because of the bowel issues and see another gp in the practice- don’t just take one gp’s word for it. A colonoscopy is not the dreadful thing many people believe either, it is a quick safe way to detect many issues. Good luck on your journey!

Xhouse profile image
Xhouse

Hi, I was also an HGV driver and was on the verge of giving up the job because of the fear of getting caught short. Had a lot of the same symptoms you mentioned and it all became too much when I started to have IBS D at least six times a day. I was prescribed Fybogel (the powder, not the tablets), and it all cleared up almost immediately. Two years now I've been free of the symptoms. You can also buy it over the counter. Worth a try. I'd tried everything until I tried this and it worked a dream.

DonnyInPain profile image
DonnyInPain in reply toXhouse

Thank you so much! This gives me hope.

SingC profile image
SingC

Hey, Donny! First of all, you’re not alone. You can always come on here for support and advice. Just thought that it is worth saying that it can help to treat your triggers. Anxiety is a huge contributor to IBS, so maybe you could consider taking steps to address that. CBT comes highly recommended and you can self refer for that. Google IAPT self referral. Alternatively, your gp could prescribe a low-dose anti-depressant to help with sleep and combat anxiety. Or you could try choosing to do things that help you relax. That could be a short walk in the park, or belting out an Iron Maiden number or Pilates, just talking to a non-judgemental friend or whatever does it for you. Have a think about activities that help you feel better/less stressed and incorporate them into your schedule regularly.

I’m glad the Mebeverine has helped. I found it helpful, too. You’ve also had lots of good advice on here of other things you can try. I would just be a little careful of certain fruits & veg. I just can’t cope with anything more than a sprinkling of blueberries, for example, and you said you were eating them regularly. I would invest in the Monash University fodmap diet app. It’s a one-off purchase of £6 or so, but there is lots of great advice on portion sizes of different foods that you should be able to tolerate, and guidance on how to follow the diet.

Eveybody’s IBS journey is slightly different although we have much in common, so I hope that you can identify your triggers and find a way to feel better. All the best!

DonnyInPain profile image
DonnyInPain

Thank you so much!What a lovely message. I've been so lost and stressed with this, I can hardly believe it has happened. But I'm slowly gaining knowledge and in time I hope to live comfortably with my condition.

You're right - I believe stress and anxiety are huge factors in my IBS and I have done CBT in the past and it helped a lot.

Last night I went over my notes from my CBT online course and it helped. I soon find my mind resurges the worries subconsciously and wakes me after around an hour of sleep. I'm so exhausted.

I have been prescribed Amitriptyline for anxiety and sleep but had stopped taking it regularly. I might start again.

I'm trying to stay positive and calm, finding solutions and progressing.

Ellie-Louise profile image
Ellie-Louise

I was interested in one reply to you when it mentioned Alflorex. I think it might help me atm with cramping etc. so I looked it up and Superdrug have a special offer on which betters Amazon’s lowest price.

£5 off making it only £19.99 for a box of 30. I am about to order some myself through Topcashback.

Best of luck sorting yours.

DonnyInPain profile image
DonnyInPain in reply toEllie-Louise

Thank you, yes, I did see that offer and got some. Hope it helps you also.

BoaterSteve profile image
BoaterSteve

It is scary when you first experience IBS and it took months for my gut to settle.

It did get better and apart from the occasional flare up I am able to drive trains.

You are not alone and while IBS affects people differently you will come through this.

DonnyInPain profile image
DonnyInPain in reply toBoaterSteve

Thank you so much.I'm hoping that with a few health changes, and given time, my condition won't control me, I'll control it.

angelwings52 profile image
angelwings52

I'd recommend asking to be referred to a gastroenterologist just to confirm a diagnosis. I had a lot of bloating and cutting down on foods made with white flour really helped (changed to brown bread etc) and eating natural yoghurt or a yoghurt drink every day is good. Try keeping a diary of everything you eat and drink as that'll help pick up on food triggers and avoid artificial sweeteners especially sorbitol. I can also highly recommend hypnotherapy (either with a hypnotherapist or there are several apps that you can download) to help with the stress, that's one of the best things that I've found to help. Please know that you're not alone going through this, hope you feel better soon.

DonnyInPain profile image
DonnyInPain in reply toangelwings52

Thank you so much. Your message really makes me feel more positive about my situation. There's such a lot of conflicting information, I guess you just have to figure out what works best for you.I did think drinking yakult every day was helping but FODMAP forbids milk.

I might try Alflorex in place of a probiotic yogurt drink, see if that helps.

How interesting. I hadn't thought about hypnotherapy. I'd thought of mindfulness and meditation but hypnotherapy is a new one to me. Do you have a favourite app you'd recommend?

I'm open to trying these things.

miriam661m profile image
miriam661m

first I'm really very sorry to hear how uncomfortable you are and how much it's affecting your life. I've been analyzing what you're writing here and I wonder if they have done a colonoscopy or endoscopy?

I used to live in Europe and I think you really have to push hard and socialize medicine to get more tests done. I often think they label IBS when they don't know after doing every possible test but it doesn't seem like you've done every possible test.

in the meantime, I really encourage you to do a pelvic massage quite often every day. I did a lot of pelvic floor physical therapy and it's the one thing that has helped greatly with my symptoms which are similar to yours only might've been going on since I was a child and your sound like the frequency and intensity came on suddenly which is why I'm encouraging you to do more testing. I'll see if I can embed a link for the pelvic massage over here.

I did find more relief with fennel tea than peppermint and I also started making my own bone broth which has glutamate that is supposed to help protect the lining of the stomach. Low FOD map is really helpful, but it should've worked by now honestly. Go with your gut literally and demand further testing even if you have to exaggerate it.

Wishing you answers and pain free days ahead.

DonnyInPain profile image
DonnyInPain in reply tomiriam661m

Thank you - I will definitely try pelvic floor physical therapy - I've been doing yoga.The docs seem to be basing everything on the one stool sample and they don't want to do anything until the 3 months of dietary experimentation is up.

Truth be told, I'm travelling to Asia at the end of the month and I'm planning to go see gut specialists there (they are cheaper, more interested in helping and available to see patients immediately) and I'll pay to have more tests and procedures done.

I've seen some people say low FODMAP might take up to 4 weeks to affect change.

I'm still feeling a little bloated (not as bad as before) and I haven't had a BM since a loose & painful experience on Tuesday morning (it's now Thursday evening) which is a bit worrying but I haven't been eating a lot and it's been healthy food.

miriam661m profile image
miriam661m in reply toDonnyInPain

i've been seen at Stanford I live about 30 minutes away and I think it's a good idea that you get seen in Asia. I would love to hear your experience there. It's actually quite normal to not have a bowel movement after quite a few days... especially after diarrhea so please don't be too concerned about that, as that can only cause more stress. I definitely know there is a mind-body somatic connection with me now that I've had every possible test done at Stanford.

I've actually been using the app called Curable and it significantly reduced 25 years of migraine and I know the theories behind pain science in this app (along with meditations etc. will also work for IBS.

Best to you!

DonnyInPain profile image
DonnyInPain in reply tomiriam661m

Thank you so much! It's too easy to worry about every little thing and ruminate on it.

miriam661m profile image
miriam661m

one last thing. This App called Nerva is specifically designed for IBS with the mind-body connection. I've plan to use Nerva to help manage my IBS symptoms now.

heartmatters1 profile image
heartmatters1

Sorry to hear you are suffering. I had something similar last year. Very painful cramping (mainly during the night). GP thought I may have an abscess & had me admitted to our hospital assessment unit. Scan showed nothing, however x-Ray revealed impaction. So even though I had been suffering with watery diahorrea for weeks I was still constipated. They call it overflow, when you are impacted & only liquid can pass through. Hence the pain. I was put on high doses of laxatives for a few days, which sorted me out. Have you tried taking laxatives, even if you think you are not constipated? Of course you would need to check with your GP to see if this could be the cause of your symptoms.

I hope you find a solution soon.

Best wishes Ally

DonnyInPain profile image
DonnyInPain in reply toheartmatters1

If someone is impacted, would Mebeverine dull the pain?Because I've been taking Mebeverine and it has taken my bloated pain away.

heartmatters1 profile image
heartmatters1 in reply toDonnyInPain

I would have thought so, as they help to relax the muscles of the gut. My GP has recently put me on Meberverine too, as I am still suffering with cramps/pain. They are usually prescribed for IBS symptoms, although I haven’t been diagnosed with IBS, but he thought they would help. Only been on them for a week, & so far they seem to have settled the pain down. Glad they seem to ease your symptoms a little.

DonnyInPain profile image
DonnyInPain in reply toheartmatters1

I really hope you find relief from the pain.

heartmatters1 profile image
heartmatters1 in reply toDonnyInPain

thanks.

DonnyInPain profile image
DonnyInPain

Thank you so much!I'm going to see specialists in Asia soon, as I can't seem to get any satisfaction from UK medical professionals. They just don't seem interested.

Thank you for the advice, I'll ask for an x-ray when I'm abroad.

Arkus profile image
Arkus

Hi Donny, I composed a reply yesterday which didn’t seem to post, which is quite annoying as it took me a while to create.

There are some great ideas and suggestions here, but here is my two bits worth. I have found a US product called IBsolution (tablets) a great help and worth looking into.

I wish you well managing this awful condition. Good luck!

DonnyInPain profile image
DonnyInPain in reply toArkus

I'm sorry your original message wasn't posted.I will look into IBSolution. Thank you!

Vvalerie profile image
Vvalerie

I’ve lived with IBS for 50 years just like you bowels have a mind of there own , personally I use hot water bottles for pain & a simple diet also on Meverbine 3 time daily with food the more stressed you are the more IBS seems to affect the beloved bowel , if you have the odd accident > well that’s how life is , I’ve had several issues over the years . Take change of clothes, gloves > wipes etc when your out , & go back see your GP I am sure if you explain how badly this is effecting you he will be able to help you. Good luck

DonnyInPain profile image
DonnyInPain

Thank you for your kind message!I'm 'lucky' in that before any sudden bowel movements I seem to get horrendous stomach pain so I'm pre-warned in a way - it gives me chance to rush to a loo.

Have you ever tried any of the following during your 50 years with IBS (and if so, did any help)? :

1. Hypnotherapy

2. Probiotics (pills and/or foods)

3. Exercises

4. Low FODMAP diet

Thank you!

Micro profile image
Micro

I haven't read many replies.Sorry you're suffering so.

I've had IBS C /IBS D for years. It seems to settle in its own time whatever I do or take. I've tried most meds etc.

The med (OTC) which helps my stomach stabs is SIMETICONE. It's in both types of WINDEZE tablets , capsules and chewable.

When eating is difficult, nausea, I sometimes take SILICOL GEL (O T C) which lines digestive system.

KOLCANTICON helped me loads but it seems to be off the market the past year. I found this in a back copy of the Nursing Times online. Doc did not know it. It's a mix of the usual stuff for indigestion, has SIMETICONE, which helps trapped wind stabs, a muscle relaxer similar to Buscopan, maybe something else. Google will show you the constituents.

Without KOLCANTICON I try put the same meds together with separate tabs I can buy. Chemist shop in my home !

So for me that mixture helps, may take a while tho.

My main trigger is stress...small things like conversation which goes wrong with my partner, all sorts. I feel my intestines contract with the small stresses, like butterflies in stomach, my colonoscopy showed 'sensitive stomach' - years ago now.

There is a newish app not sure I can say the name,- hypnotherapy for IBS. Guess there will be others similar. It seems useful . I didn't like the Tweety bird sounds so instead I take a few minutes several times daily, to be silent as poss, and tell my gut it needn't get so alarmed so quickly. Just turning off all input a while helps me a bit.

Docs told me to have more fibre. For me that can be worse.

Personally I've found that avoiding INSOLUBLE fibre, sticking more to Soluble fibre is helpful, but we're all different !

It is hideous for you especially at work but in my experience it WILL improve.. .may recur but you'll get to know some triggers to avoid.

Hope you feel better quickly.

.

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