Desperate need for help and advice

[Millysacca]

I began to experience pain in my central back and left side in November 2020. I went to the GP and had my stool and bloods checked which were all found to be fine. The year of 2021 was fine for the first half and then in August 2021 I had COVID and was bed ridden for a number of days. After my recovery I noticed my central back pain and left side pain had returned and it’s never really gone away since then. I’ve experienced a number of different symptoms over the past 2 and a half years which has resulted in me having a colonoscopy, CT, MRI, Ultrasound and numerous blood tests. All thankfully have come back positive but I’ve really struggled during this time. It’s been suggested my symptoms are consistent with IBS. I’ve tried to follow a FODMAP diet. However, I continue to live with episodes of night sweats, severe pain in my left side, random stabbing/shooting pains, constipation, stools full of yellow/brown mucus, aches and fatigue. It’s had such a negative impact on my wellbeing and the wellbeing of others. I have a young family. We’ve recently moved abroad mainly because of it as it had been suggested that it could’ve been led from stress from my job. I’d appreciate any advice or feedback from others who may have a similar story.

[winfong]

Unfortunately, IBS is mainly diagnosed by a process of elimination. I guess the good news is that it's not something more serious. That said, IBS can be awful.

Except for the night sweats, all the things you describe are IBS symptoms. That would actually point to inflammation - Crohn's, IBD, etc. Those would have shown up on the tests you had though. Was there any talk of your having a stomach bug?

You rightly ascribe stress as one of the triggers. I'm wondering, though, if moving to a new country isn't stressful in itself.

Have you tried any meds for it? What type of IBS do you have - constipation, diarrhea, or mixed? Knowing that, I'm sure this group can have some recommendations.

[Millysacca in reply to winfong]

Thanks so much for the reply. My night sweats have been awful over the last week. I’m in severe pain on my left side and definitely constipated. It’s interesting you mention Crohn’s and IBD as I’ve always felt my symptoms were more in line with these but they should’ve been highlighted in either the colonoscopy or CT scan. My symptoms have been ongoing for over three years now and it’s had such a negative impact on my wellbeing.

[xjrs]

It sounds like you have IBS-C (constipation dominant IBS) with visceral hypersensitivity (IBS pain) - though discuss this with your GP or gastro to verify. I have this and experience it as lower back pain overnight/early hours of the morning. The thing that has helped me with the pain has been Alflorex probiotic and Linaclotide on prescription.

If you have a gut bacterial imbalance, dominating bad bugs can oversensitise intestinal nerves causing pain (which can be referred to other areas of the body such as the back) - stress will also amp up this effect. A good probiotic like Alflorex may help with this. Linaclotide also helps to calm intestinal nerves - this reduced my pain by 50%-60% - adding in Alflorex reduced my pain to zero (unless I am eating something that I know disagrees with me still, though Alflorex has made me tolerant to a wider range of foods including fibre). I would try Alflorex first in addition to the Nerva gut directed hypnotherapy app to help with the stress.

Also what is your fibre intake like? I manage the constipation with dietary measures. I can post those here if of interest?

[Millysacca in reply to xjrs]

Thank you so much for the reply. I’ve been really struggling over the past week with regular night sweats and pretty much agony on my lower left side that prevents me from being able to sleep on it. I’ve an appointment with my gastroenterologist tomorrow so will be sure to mention your suggestions.

[Millysacca in reply to xjrs]

Hi, so I'm currently in the middle of a pretty bad flare up. My understanding of my condition has greatly improved due to this page. I've since found out that I have IBS-C, I had a scan done of my stomach and the Gastroenterologist said I was severely constipated. This surprised me as I tend to go every day but I'm clearly not emptying my bowels. I'm currently living in Dubai but return to the UK in four weeks for the summer so I'm going to look to start taking Symprove and look to purchase Alflorex too. Would you say it's probably best to only try one of them? I use the NERVA app on the back of your post and have found this can help me at times.

I'm taking husk on the daily basis to help with fibre intake but wondered if it would be possible to share the dietary measures that you mentioned in your post.

Many thanks

[xjrs in reply to Millysacca]

Sorry to hear about the flare. Good you're understanding the condition more.

I would try Alflorex first on a 3 month trial. Precision Biotics, the makers of Alflorex, say not to mix and match probiotics, since it can only stand by their scientific study regarding IBS if taken alone. They also say that probiotics can end up competing with one another. If you end up trying the medication (Linaclotide), it takes 10 weeks to have full pain effects, but certainly try the probiotic first.

Here are my IBS-C dietary measures:

To improve constipation in the short term you can try ground flaxseed on your breakfast, starting at 1 teaspoon and increasing at 1 teaspoon every 2-3 days - you'll need to consume extra water with it.

These foods are also high fibre:

8-9 Prunes

2 tablespoon chia seeds (soaked for 10-15 mins in milk or non dairy milk with cereal or water)

Shredded wheat (or if GF: Nutribrex)

60g Quinoa

Wholewheat bread

75g Whole grain pastas (if GF: Buckwheat)

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 or 2 kiwi a day and then another high fibre fruit later in the day to help with BMs. Introduce new foods and any fibre increases slowly, starting with one new thing at a time, waiting for 2-3 days for a response and keep a food diary. You may not need to consume as much fibre as I do.

For breakfast I make a porridge of 4 tablespoon of oat bran and 4 tablespoon all bran (wheat bran), 2.5 small cups of water and microwave for 10 mins. I then mix in 2 tablespoon of chia seeds and 1 tablespoon ground flaxseed and leave to stand for 15-20 mins since the chia seeds need to form a gel. On top of that I place 8 prunes and eat. The best thing to do is to start with normal oats in similar quantities and, if needed, replace one of the tablespoons of oats with oat bran for a couple of days, carrying on doing this every couple of days until you get to 4 tablespoon of oat bran and 4 tablespoon of oats. Then start replacing with wheat bran in the same manner. You can then add the other ingredients one at a time. You might find you do not need the complete 'recipe' to have a BM. All these individual components are down to tolerance e.g. you may not tolerate wheat (see later about Alflorex), so it is best to keep a food diary (I do this on a spreadsheet) recording symptoms for up to 2-3 days after each change.

I also take 30 drops of ginger extract before bedtime to aid motility. You may need to work up the dose to say 7 drop increments each night.

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...

There are also medications that help IBS-C (constipation dominant IBS). I suffer from IBS-C and have been prescribed Linaclotide for it. I also take Alflorex probiotic which has made me more tolerant to taking in the extra fibre I need for a BM.

Failing dietary measures, you can try Optifibre, which needs to be worked up to a dose according to instructions. You may not need the full dose - watch out for gas and increment to a level that is acceptable for you.

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 mean time 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.

[Millysacca in reply to xjrs]

Thank you so, so much for this quick in depth reply. I will read through it all properly when I get home tonight. It's actually only been through this site that I've even become aware of the different types of IBS. I wasn't informed of this through my Gastroenterologist which is disappointing.

Can I ask, what are your symptoms when you're having a bad episode?

[xjrs in reply to Millysacca]

I experience this as visceral (referred from my bowels) pain into my mid to lower back overnight/early hours of the morning. However, some may feel this pain directly from the gut. With the measures I now take, this only happens if I am challenging with a new food which I am still intolerant to or I eat too much of a specific food.

The IBS-C is a constant thing, since I have a redundant (long loopy) colon managed through diet. The measures I mention help me go on a daily basis.

By the way, with the Alflorex, best to get the 'original' formula, rather than the one that contains calcium carbonate, since calcium carbonate can be constipating. Original formula here:

precisionbiotics.co.uk/alfl...

[Millysacca in reply to xjrs]

That's so interesting as it really sounds so similar to myself. It feels different to back pain I had experienced before any IBS symptoms. The only addition to that pain is a specific pain in my central back. However, my Gastroenterologist is adamant both this and the back pain are not linked to the IBS which I've never accepted. However, I am due to get an MRI in the coming weeks to have a look at my spine.

The constant IBS-C and back pains have really impacted me and I've felt lower than I had ever felt was possible over the past few years. This forum is amazing at providing that much needed support and I can't thank you enough for the communication we have had.

[xjrs in reply to Millysacca]

Your gastro is wrong unfortunately.

I was in the same situation as yourself. Initially I went to a chiropractor and after weeks of expensive manipulation, this did nothing for me.

At that point I noticed that it got triggered when I ate certain foods. This is when I realised it was related to IBS / food intolerances.

My GP kept telling me I had acid reflux / GERD (which I had experienced in the past) and kept trying to push PPIs on me. Instinctively I knew that this wasn't true since if it was acid reflux / GERD I would experience the pain between the shoulder blades and not lower down. I didn't take the PPIs.

The timing of the pain was interesting and I found out that the bowels are at their most active overnight/early hours of the morning preparing for a BM. Visceral pain is whereby the brain picks up normal activity of organs such as the bowel as pain. This can be due to wearing down of neurons in the brain due to highly stressful events or PTSD or poor childhood experiences. Normally the neurons would know that this is the bowel doing its job and ignore it. The standard treatment for this is low dose amitriptyline, but it is a generalised nerve pain agent (so can have side effects) including constipation. I did try one pill and got heart palpitations from it. This is when my gastro suggested Linaclotide which only acts locally in the gut. The pain relieving effects are maxed out at 10 weeks for this - it reduced my pain by 50%-60% - the Alforex reduced it to zero (except when I am eating challenging foods). Best to try the probiotic/natural approach first.

The pain is also exacerbated by any bad bugs dominating in the gut which over sensitise gut nerves. Not only do you have the brain falsely recognising nerve signals as pain, but the signals are amplified by the bad bugs - almost like sending out a heightened alarm. This is a double whammy effect.

The important thing is to try to get the bad bugs under control to calm their impact on nerves down. From the brain calming perspective, meditation, hypnotherapy (Nerva app) and mindfulness can help.

Linaclotide and Alflorex isn't a total fix for me. I still have a fair number of food intolerances, but I can eat a much wider diet and loads of fibre which is better for my gut. Alforex helps to digest complex carbs too. You might want to read my xjrs post which includes diet and IBS:

healthunlocked.com/theibsne...

[Millysacca in reply to xjrs]

Hi again,

I've had some bloods done recently along with another calprotectin test. The results for calprotectin gave me a score of 30. Now the GP suggested that he believed I didn't have IBS due to this low score. I wasn't sure what to make of it as I was diagnosed over two years ago and have never got on top of my symptoms. My gastroenterologist is currently on holiday and I'm due to see him again at the end of August. I am trying my best to stick to a low fodmap diet but find it quite difficult. I don't have regular BM and I know it's all linked. A recent MRI scan showed that I have protrusion in two discs which the GP believes is the root cause but I have to say, I'm very sceptical of this. I am due to start physiotherapy for my back but consistently wake up in pain and with an ill taste at the back of my mouth.

[xjrs in reply to Millysacca]

Hi, that figure for calprotectin seems quite low. I am not sure that your GP can say you don't have IBS from a low calprotectin score. The point of a calprotectin test is to see whether you need further tests or colonoscopy if it is high in case it isn't IBS. I've never seen anywhere in my research that a low calprotectin score means that you don't have IBS. I would challenge your GP on that one and ask for the scientific study that proves their point (I would be interested in seeing this too).

Regarding your disc issues, it is worth investigating this as your are doing. The ill taste in the back of your mouth could be acid reflux. If the pain is higher up getting nearer between the shoulder blades, then this could also be an indicator of acid reflux.

If acid reflux is found to be the cause then propping the head of your bed up by 20cm with bed risers might help. There is also DGL Liquorice which can be sucked 20 mins before meals and at bed time to help protect the throat. All of these possibilities need to be discussed with your GP.

[Millysacca in reply to xjrs]

I was confused my the comment too. I've just checked my calprotectin level from my last test in the UK and that was at 24 which is even lower. The GP last week said he wouldn't be recommending a colonoscopy on the basis of the level of 30 as well other blood results. I did have a colonoscopy in December 2021 and I'm 43 so I don't think there is the need. I will see the GP again and ask regarding his thinking that the low calprotectin score suggests I don't have IBS!

He was swaying towards the discs being the underlying issue which I hope he is right about but I'm really not sure. He's told me to the follow the low fodmap diet but I have already done it with not any real change. I'm currently in one of those bad periods where I've simply had enough. These symptoms have been going on for nearly 4 years and they really are debilitating. Along with the pain, I have regular waves of feeling unwell and lethargic.

I had an endoscopy this year that appeared to rule out acid reflux but still the constant bad taste at the back of my mouth. I have my first physiotherapy session tonight so I'm hoping that might help a little!!

[xjrs in reply to Millysacca]

You are doing everything you can and following up on each possibility. Good luck with the physiotherapy.

[CBRGirl]

I first just want to say thank you for being open to sharing your experience. I have been dealing with the same symptoms. I can especially relate to the back pain. I then spend a significant amount of time concerned about my health, no doubt, making everything a lot worse. It’s a terrible cycle. I just want to feel normal again. To not wake up with back pain and the constant concern that something more sinister is going on.

Like another poster had said, it’s good that your test results came back positive. I honestly am working to do what I can to eliminate inflammatory foods and find other foods and supplements that fight inflammation. I really think that and gut flora being way off really contribute to the issues I’m having.

I hope you find relief soon. But again, thank you for sharing. I know I’m not alone in my symptoms.

[Millysacca in reply to CBRGirl]

Thanks so much for the reply. It’s horrible to hear that someone else is suffering as I am but agree it’s reassuring. My brain is very quick to go down the road of thinking that something sinister is missed and it’s very much a vicious cycle. I’m having a particularly bad episode at the moment with daily night sweats and severe pain on my left side.

[Millysacca in reply to CBRGirl]

Hi, I am currently in the middle of yet another flare up and experiencing the same old symptoms. How have you been getting on? I'm looking to start taking Symprove very soon.

[Axial]

Wheat intolerance?

[Millysacca in reply to Axial]

Apparently not as I’ve been tested for that.

[KCIEM]

I've just been through what you had since the end of November, I am feeling better since having my CT results back and have been eating better having oats in the morning and taking Mebeverine. I do think that a large part is due to the stress and anxiety subsiding as a result of my tests coming back clear.I was having night sweats each night and even panic attacks, it's amazing what your mind can do to the rest of your body. These have also subsided so I hope they were too part of the anxiety, I'm looking into starting yoga and have downloaded an app for hypnotherapy to try and change my mindset and lifestyle.

I was diagnosed with IBS by my GP and have a constant ache in my stomach and lower back.

The past couple of weeks I've also been experiencing bone pain and joint pain, this has been worse at times but has also subsided as I type this.

I've not been given any information on IBS so have done all research myself.

I hope your symptoms ease.

[Millysacca in reply to KCIEM]

Thanks so much for the reply. It sounds like you have very similar symptoms to me. I’m reassured that my tests have continued to come back clear but then I’m still suffering. Do you have pain in a specific area? Mine is in the lower left area. I’ve had night sweats for the past few nights and wake up feeling dreadful. The pain on my lower left prevents me from sleeping on that side.

[KCIEM in reply to Millysacca]

My back pain is more on my lower right side which seems to spread to my lower left, I did a bit of painting in my daughter's room yesterday and after I finished I was wiped out with my joints aching and severe fatigue - I'm a 34yr old male who was going to the gym up to 4 times a week until the end of November when this started.Yesterday I took ibuprofen in the evening and had to get up at 3am and take more as the back pain was unbearable and I was shocked how well and how fast it worked.

Does your pain seem to be your bones/joints? If so try ibuprofen?

[Millysacca]

Update.... I've since had an Endoscopy and another CT scan. Again, these have come back to all clear. I actually got to the point that I was hoping they would find something as I feel I cannot continue in this way. Every day is a struggle. I either have sharp pains across my mid back area, severe bloating, constipation and the reoccurring pain in my lower left. I have regular episodes of tears and breakdowns and I'm happier when I'm asleep which is something I have felt for some time now. The gastroenterologist has advised me to start some psychiatry sessions as he says the pain is largely coming from my brain and I need to look to rewire it. This is equally difficult to accept and I'm feeling in a pretty bad place at the moment. Any advice would be greatly appreciated.