Pain & bloating

[Sl4876]

I was diagnosed with IBS early 20s, now 36. Does anyone else suffer with extreme bloating and pain/discomfort but not cramping pain more like dull uncomfortable pain as if my stomach may explode pain. Hormones play a part for me along with stress. I take colpermin and buscopan. I don’t know what else to do. I can go months with nothing and then have an extreme flare sometimes lasting up to 3 weeks. Can anyone relate?

[Hidden]

Hi there

I'm so sorry for your pain. I used to get pain a lot when I had IBS C but then I had food poisoning and it changed to IBS D with acute nausea.

I used to take Buscupan and it never worked for me and it was costing a lot of money as I was taking so many and this is when my hubby suggested I take paracetamol and that worked. If you've not tried that it's worth a try.

Also, I started the Low Fodmap diet in January this year and feel so much better, now I just have odd days.

Take care

Alicia

[Judy2105 in reply to Hidden]

Hiya which FODMAP link you follow pls.There r so many links on the internet and some of them can be quite confusing as they say the opposite.thank you J

[Hidden in reply to Judy2105]

Hi Judy2105 , the ones you need to look at are the Kings College London and Monash University. The diet was created by Monash University and they also have a low fodmap app which is brilliant.

If you type into the search engine on the internet 'Monash University Low Fodmap' you'll go straight to the link, same for Kings College London.

Very best of luck.

[Judy2105 in reply to Hidden]

Thank you

[Anxious01]

HI I have the same . I can go weeks without a flare up and then am really suffering with the kind of pain you describe. I have been taking Buscopan for ages and they do ease the feeling of bloated ness slightly. I have recently tried

[xjrs]

My IBS was pain dominant and I also suffered from bloating.

Here is some information about IBS that I have shared with others in this group in case any of these tips are of interest to you:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excess gas, pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/....

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app and Kings College fodmap apps, they will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

iffgd.org/lower-gi-disorder...

It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.

You can find some info on self management here:

theibsnetwork.org/the-self-...

[ling in reply to xjrs]

Thank you. This is do well written and informative.

Where do u buy Alflorex and Symprove from?

Were u more prone to passing motion with your IBS?

Thank you

[xjrs]

I buy Alflorex from the manufacturer Precision Biotics:

shop.precisionbiotics.com/u...

It's not cheap, but it has been worth it for me.

The Symprove website is here:

symprove.com/pages/learn-mi...

I would try Alflorex first though.

My IBS has changed over the years. I used to be diarrhea dominant. I then went low Fodmap but had to take in extra cereal fibre to have a BM (since the diet tends to reduce the amount of fibre reaching your colon). I am now classified as IBS-C (constipation dominant). However, I think that was caused by the treatments I went through with nutritional therapists last year. They diagnosed me with SIBO (which I didn't have) and spent months putting me on antibiotics and antimicrobials which killed off my microbiome. The fact that your gut bacteria makes up the bulk of stools probably explains the IBS-C problems I am having now. I would definitely not recommend nutritional therapists (which are different to dietitians under the NHS).

[ling in reply to xjrs]

Thank you!

You mentioned being able to eat only white rice and protein. What was the situation then that necessitated that?

[xjrs]

I was experiencing night time and early morning mid to lower back pain which was gradually getting worse. It took me some time to realise that this was linked to many foods that I was eating. Doctors kept telling me I had acid reflux (which I had experienced in the past), but intuitively I thought that I would feel the pain between the shoulder blades rather than lower down if it were due to reflux. I'd given up on doctors at that point and sought out help from nutritional therapists and sorely regretted it, since I became quite seriously ill from their treatments and lost a stone in weight (as well as wasting a substantial amount of money). Even though I had previously been on a low fodmap diet for years, the pain began to get worse despite the diet. I had to eat really basically (rice, protein, limited veg) to reduce the pain - this meant that little residue was ending up in my colon which then gave me severe constipation. I needed to use Magnesium Oxide to help me have a BM. Eventually I had some blood samples taken by the NHS and it showed my inflammation markers were sky high (more than likely from the nutritional therapy treatments since my health was in a really poor state at that point). I then had a colonoscopy and was diagnosed with IBS-C and visceral hypersensitivity (described in my previous post). I was prescribed Linaclotide (which calms intestinal nerves to reduce pain and is also meant to help with motility, but it didn't help with my BMs). The Linaclotide reduced my pain by 50%-60%. It was only when I started taking Alflorex probiotic that the pain reduced to zero, which enabled me to start to consume more foods again. I now only get the pain when going through new food introductions until my body gets used to the food or I have to decide to still give up on it. This meant the pain for me had a gut bacterial imbalance as a factor. Some bad gut bugs produce hydrogen sulfide as a by-product which can induce intestinal pain.

[ling in reply to xjrs]

Just noticed the reply didn't get to u. The board's acting up again.

------------------------

Thank you so much for sharing your experience!

What led u to the Alflorex probiotic?

Have u by any chance heard of cases where probiotics, instead of helping, end up making matters worse?

Thank you

[xjrs in reply to ling]

No worries ling. I had tried other probiotics in the past such as lactobacillus acidophilus and lactobacillus & rhamnosus. These helped to a small degree. I looked for a good probiotic last year. I found one that had a huge range of bacteria in it and 20+ billion CFU. I thought the more different strains of bacteria and the higher the dosage the better. I also looked for brands that didn't have unnecessary additives. The one I tried actually made me vomit. I was trying to reintroduce a food into my diet at the same time so thought it might be that, so I tried it again and got severe heart palpitations from it. I think my system felt like it was under attack from this large quantity of different bacteria. I found some scientific papers that IBS sufferers tend to get on better with lower doses of probiotics. I also read that when you have many different strains of bacteria they can end up competing with one another. This meant that I started looking for probiotics with lower doses of one strong strain. I found a study on Alflorex which fitted this profile, had also been researched and found to help IBS sufferers specifically. This was about the same time that I subscribed to theibsnetwork.org and I saw that they offered a free 2 month trial of Alflorex on joining the network at the time. This seemed serendipitous, so I went ahead with the trail. Within a week my pain was gone and I had no side effects (by the way I'd had this pain for years). I was absolutely amazed at how effective it was. The strain it contains is a very strong strain passed from the mother to a baby during a natural birth to help prime the baby's immune system. It must have kicked to touch the bad bug I'd had in my system (I'd had a gut test which showed I had an overgrowth of Citrobacter Freundii - I wouldn't advocate getting these tests - all you need to do is try specific probiotics to see if they help you - much cheaper plus you avoid going down a rabbit hole with therapists who don't really know what they are doing). By the way, I told my gastroenterlogist about what Alflorex had achieved. He seemed pretty excited and wrote it down to presumably look into it himself.

[ling in reply to xjrs]

Thank you so much!It's fascinating how u figure out how to resolve your problems.

For how long did u have ibs pain?

Did u some times have diarrhoea with the pain and bloating?

Are u lactose intolerant?

Thank you.

[xjrs in reply to ling]

I am a self-confessed geek :-).

I have had IBS for 33 years in total. For the first 10 years I was diarrhea dominant with bouts only lasting for a couple of weeks at a time and I managed to control it with mebeverine (Colofac).

For the next 7 years or so after that the diarrhea would come in batches of 6 months at a time due to work stress and I got that under control with a low fodmap diet. In the mean time I had to take imodium to enable me to go to work.

For the following 6 or so years I became pain dominant with the pain gradually getting worse as time went on.

Last year I had treatments for SIBO which I really regret since I didn't actually have it. The treatments involved killing off my microbiome. Since the bulk of stools is made of gut bacteria I became chronically constipated. Right now I am having to consume a huge amount of fibre to have daily BMs.

When I had a colonoscopy, the gastro said that I had a long loopy (redundant) colon which is typical of IBS-C sufferers.

I have always suffered from bloating to a degree. Although I am relatively slim I always buy dresses that don't hug around the middle since my belly tends to stick out. It is worse after I have just eaten. However, it is really hard to say whether I am bloated at times or not. Everyone's stomach sticks out to a degree when they have eaten - the food needs to go somewhere! I've have seen pictures of models with flat stomachs taking photos of themselves after they've eaten and there is a big difference. To some extent this is normal. Having a totally flat stomach at all times, I think is abnormal :-).

The above time lines are a rough guide from memory.

It is interesting that my IBS started from a bout of food poisoning from a trip to Mexico. The fact that Alflorex has helped me suggests my issues have been caused to a great degree by a gut bacterial imbalance caused by this food poisoning.

[ling in reply to xjrs]

Thank you so much for taking the time to share so much!

When u went on to become pain dominant, was there a trigger for the shift?

Was there less diarrhoea during the pain dominant phase?

Is it ok to ask if u have other medical conditions aside from the ibs?

Can u explain a little more why u don't drink milk any more?

Ps. In our experience, we've noted that too much probiotics can cause constipation.

[xjrs in reply to ling]

I believe that work stress caused my pain to get worse and become dominant - although I have another theory (see below).

I had no diarrhea during the pain dominant phase - I was low fodmap at this point which controlled the diarrhea. Thinking about it, a low fodmap diet reduces feed for the microbiome - one could also argue that by not feeding my mircobiome properly for years, perhaps my good gut bacteria became less, allowing the bad bugs to come to the fore. These bad bugs can induce pain. Since Alflorex probiotic helped me so much with the pain, this supports this theory. I have been trying to incorporate more fodmaps into my diet since being on the Aflorex.

I have not been diagnosed with any other medical conditions other than IBS.

I didn't find that Alflorex made my constipation any worse.

When you say 'in our experience', are you a researcher?

There is a long explanation as to why I don't drink milk based on my research:

2019 - academic.oup.com/cdn/articl...

61,000 women

studied

- dairy milk consumption associated with risk of breast cancer - steeper rises in breast cancer risk at intakes of dairy milk up to ¾ cup/day

- due to sex hormones in milk particularity since 70% dairy cows are pregnant

- no associations were seen with cheese or yogurt

2018 - sciencedirect.com/science/a...

184 women

studied

- same as above - fresh cheese had a protective effect

2020 - academic.oup.com/ije/advanc...

52,795 women

studied

- same as above - including full & reduced fat milks

healthline.com/health-news/...

- We found that at relatively low doses of dairy milk, less than a cup a day, there was a steep rise in the risk of breast cancer” said Gary E. Fraser, MBChB, PhD,

a professor in the School of Public Health and Medicine at Loma Linda University and the study’s lead author.

“At a cup a day, we were seeing more than a 50 percent increase in risk,” Fraser told Healthline. “At 2 to 3 cups per day, the risk increased 70 percent to 80 percent.”

- related to the 52,795 study

- The scientists said they found no association with breast cancer and soy milk, but they did find a higher risk with dairy milk, regardless of its fat content.

- They didn’t find the same risk factors with cheese or yogurt.

- a different piece of research:

- “Contrary to the results of the IJE paper, we found a weak, not statistically significant, 15 percent reduction in breast cancer risk with total dairy intake,” she told Healthline.

- “Higher intakes of yogurt were associated with statistically significant lower breast cancer risk. Higher intakes of American, cheddar, and cream cheeses were associated with a

borderline significant increased risk,” she added.

Yogurt may reduce breast cancer risk:

medicalnewstoday.com/articl...

Low fat yogurt for breast cancer in moderation

foodforbreastcancer.com/foo...

While yogurt appears to have some ability to protect against breast cancer, kefir (a fermented milk drink popular in the middle east, parts of the Mediterranean, eastern Europe and Russia)

has been shown to have stronger effects at lower concentrations. Kefir is made using kefir grains, which consist of a complex living culture of yeasts and bacteria, whereas yogurt typically is made using only lactobacillus strains.

Yogurt with added probiotics (microbial cells that are intended to have a beneficial effect on health) is designed to improve intestinal functioning. Probiotics appear to act by reinforcing

the intestinal mucosal barrier against deleterious agents. Preliminary evidence suggests that they might also have anti-cancer activities.

100% grass fed organic yogurt is preferable to non-organic yogurt because the milk used to produce it contains fewer hormones and it has higher CLA and omega-3 fatty acid contents.

Low-fat yogurt is preferable to nonfat yogurt because it has a higher CLA content without the relatively high saturated fat content of full-fat yogurt.

[ling in reply to xjrs]

Apologies, no not a researcher. I meant our family's experience with probiotics. It was surprising to learn that probiotics could cause constipation, and that not all probiotics are suitable, and that the amount of cultures in a probiotic also mattered.

It's always an amazing experience reading your replies. There is so much to unpack!

Re milk. Whilst it felt like a startling revelation, it wasn't altogether surprising. Imagine all those hormones sloshing around in milk! U really are amazing! Why do u think it is, that this is not more well known given high breast cancer rates?

I cannot express enough, my thanks to you, for sharing so much over these several posts. THANK YOU!! Someone like u, makes forums like these, places of hope for others. Thank you so much and God bless u : )

[xjrs in reply to ling]

Aw. That's a lovely reply. I appreciate it.

Regarding milk and a lot of things that MAY be bad for you, it's a case of health authorities catching up with all this information and advising the public. However, whenever industries are concerned, there can be ulterior (financial) motives for keeping things going. There will be many dietitians out there who say that milk is packed full of nutrients, which of course it is. It's all about an individual's approach to risk. If you are risk averse and the numbers stack up, you may want to avoid certain things, but there are also nutrients that you may be missing out on (like calcium and iodine - the other main source of iodine is fish). I supplement with calcium, but supplementing with too much calcium can be bad for you so I stick with 400mg calcium citrate with Vit D split between lunch & bedtime) and I take 150 mcg potassium iodide on days I don't eat fish. Everything is a trade off.

From the studies low fat (preferably organic) probiotic yoghurts are fine and may have a protective effect. These would also provide calcium and iodine. However, unfortunately they made me constipated, which is a shame 🙁.

[ling in reply to xjrs]

Well said.

Could the yogurt on top of the Alflorex, be too much probiotics, hence the constipation?

[xjrs in reply to ling]

I more suspected the cow's milk proteins. I just googled it and came up with this:

Recently it is agreed that constipation seems to be the result of hypersensitivity to cow's milk proteins

ncbi.nlm.nih.gov/pmc/articl...

jwatch.org/pa20100721000000...

[ling in reply to xjrs]

Thank you and noted.

[xjrs in reply to ling]

Regarding lactose intolerance, when I did fodmap testing some time ago I used to get symptoms with milk products so eliminated them from my diet. Since being on Alflorex recently I tried probiotic yoghurts again. I found that they made me even more constipated, so I had to stop eating them. I haven't tried milk on its own. However I don't drink milk now more as a lifestyle choice (particularly in regards to question marks over whether this has an impact on long term health, especially in females).

[ling in reply to xjrs]

xjrs, what was your alflorex dosing like?

Thank you

[xjrs in reply to ling]

Hi ling, I take 1 capsule daily before eating breakfast. Probiotics are best taken on an empty stomach before a meal. I've read a study that probiotics are more effective if consumed on an empty stomach within half an hour of a fat containing meal, though there isn't any specific advice with Alflorex to do this and it has been clinically studied to reach the gut anyway.

[ling in reply to xjrs]

Didn't know that! Always thought probiotics were meant to be taken after meals.

Happy new year!

[xjrs in reply to ling]

Here is the article to be more specific:nutritionfacts.org/2014/01/...

probiotic bacterial survival was best when provided within 30 minutes before or simultaneously with a meal or beverage that contained some fat content.

Also this article:

intelligentlabs.org/when-is...

A 2011 study showed that probiotics taken within 30 minutes of a meal survived in significantly higher numbers than probiotics given more than 30 minutes after a meal. The study also showed that more bacteria survived when taken with food than when they were taken with water or apple juice.

So they can also be taken with a meal to increase efficacy. I just find it more convenient to take it just before a meal than during a meal.

Happy New Year too!

[ling in reply to xjrs]

Many thanks!

Does alflorex lists the probiotic sub strains?

Do u think the listing of the sub strains is really that important?

[xjrs in reply to ling]

There is only one strain in Alflorex: Bifidobacterium infantis 35624. This is the strain that has been clinically tested for IBS.

I'm not sure what you mean by your second question.

[ling in reply to xjrs]

Thank you.

The intelligentlabs piece claims that it is very important to list all probiotic sub strains.

"Just listing a strain should be a big warning sign as to the quality of the probiotic."

What's your view of this?

[xjrs in reply to ling]

Intelligentlabs sell products, so their view is not independent. There is no one answer since research is still ongoing. However, I have also read that different strains in the same probiotic product can compete with one another. Bifidobacterium infantis 35624 is a particularly strong strain. I went to a talk once with researchers from the Quadrum Institute who are one of the leading microbiome research bodies in the UK. They talked about how pathogens (bad bacteria) can be pretty strong and dominate the gut in some people. Commensal (good) bacteria can be weaker. However, one of the strongest good bacterias is Bifidobacterium. If anything has the best chance of kicking bad bugs into touch, it is this one. It is to be remembered that different bacteria have different functions. Researchers are still working on this. If you take a probiotic with lots of different strains, you could be paying for strains that are not really doing anything for your IBS. Bifidobacterium infantis 35624 has been specifically studied for IBS. Also I took a probiotic with a high CFU with lots of different strains and had a reaction (heart palpitations and vomiting). I've also taken Lactabilus strains in the past which helped a little, but no where near as much as Bifidobacterium infantis 35624 (Alflorex).

[ling in reply to xjrs]

Thank you!

Bifidobacterium infantis 35624 - this is just one strain of Bifidobacterium infantis?

Lactabilus - did u mean lactobacillus?

[xjrs in reply to ling]

Bifidobacterium infantis 35624 is one strain. If you are weighing up whether or not to go with Alflorex or another product since some people say you need lots of strains, all I can say is that of all the products I have ever tried Alflorex has had a massive positive impact on my symptoms compared to other products.

I used to take Lactobacillus acidophilus years ago and Lactobacillus rhamnosus & acidophilus over more recent years. Plus I only took 2 days - 1 pill each day - of the high strength multi-strain one which I had a reaction to and had to throw them out - the reaction would have been caused by the probiotic itself and not any additives since I was very careful to pick one that had minimal / non-reactive additives.

[ling in reply to xjrs]

Thanks for sharing.

I think we're all different and our health circumstances vary.

So just as alflorex has worked great for u, (lucky u I am really envious hearing your amazing story!), there are people on the forum for whom it didn't work and even caused side effects, as did that one probiotic u tried which caused palpitations and vomiting.

I'm still thinking through what might work for me, because honestly, after a year of intestinal pain and finally largely getting it under control, I have zero desire to be back in pain. It is pretty agonising.

[ling]

Thank you so much for sharing your experience!

What led u to the Alflorex probiotic?

Have u by any chance heard of cases where probiotics, instead of helping, end up making matters worse?

Thank you