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Fibromyalgia & IBS/IBD Going With Flow

Fibroguy66 profile image
27 Replies

Hello 🤗 Just a loose chat here but does anyone suffer with stomach issues 😞 etc.

After having a near death ☠️ experience with a stomach blockage and a twisted intestine last November & being rushed to hospital for a internal jet wash I mean stomach clearance due to the fact I had opoid poisoning through butec patches etc.

I suffer with the chocolate fountain & constipation regularly.

I've tried amodium & powdered cement & nothing works 😞

I've been & seen the nice stomach people & had the drain camera up my backside for a inspection & no issues were found.

It really is getting a downhill struggle.

One minute your bunked up & next minute it's like a melting chocolate 🍫 TV advertisement on making Easter bunnies etc.

Should you just go with the flow or what.

I did study a pictorial stool chart online to see if I could compare mine but nearly all of them had back rests & 4 legs,am I looking on the wrong site.

I'm afraid to experiment with different foods nowadays due to nasty explosions at the wrong time & place etc.

I do not have Crohn's as none look like pencils,so I'm drawing from this fact.

I don't eat chilli or curry 🍛 as I cannot stand spicy 🥵 food anyway.

All these issues are getting hard to swallow 😞

Your helpful views please 🙏🏻🙏🏻🙏🏻🔵

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27 Replies
Choco-holic37 profile image
Choco-holic37

very detailed post

Have you ever seen a stomach / digestive expert? A gastroenterologist? May be worth a referral and some tests

Fibroguy66 profile image
Fibroguy66 in reply toChoco-holic37

Just have tried them sadly 😞 camera to

Choco-holic37 profile image
Choco-holic37 in reply toFibroguy66

Maybe they have no answers. Sadly not all questions have answers

Wilson16 profile image
Wilson16

Can I ask what caused the opioid poisoning with the Butec patches please ?

Fibroguy66 profile image
Fibroguy66 in reply toWilson16

Yes you may.They started me on butec patches & I was being monitored on 5g then 10 then 15 then 20 then 25 the 30 mg.

Either figure being 5 or 30 mg or any number in-between is 100 times stronger than morphine.

This caused constipation and the stomach blockage, laxatives were no good to clear the stomach.

Stomach became so full that it twisted my intestine by 58 mm.

Body went into toxic shock & I suffered a near death experience last November

Was rushed into hospital as well.

Honestly this has changed my life for the worse as IBS n ibd has got worse

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toFibroguy66

That sounds more like side effects rather than poisoning. Poisoning, toxicity, or overdosing would be respiratory distress, unconsciousness, and pinpoint pupils. It's a semantic but important distinction.

Fibroguy66 profile image
Fibroguy66 in reply todesquinn

Yes toxic poisoning through opoids in the patches.Please stop lecturing me & correcting me.

As it's getting to the stage of being victimised etc.

I was there in hospital and not yourself.

Opoids are also found in OTC co codomol.

I literally was on the edge of dying

And yes I had what you mention (respiratory distress, unconsciousness, and pinpoint pupils also)

Also I'm not negative in anyway.

Strange how some others agree & relate to my medical issues.

I'm stating how I feel so I'm not brain washing anyone into negativity etc.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toFibroguy66

Sorry but what you were responding to the other person's direct question was incomplete or wrong. Hence why I replied and gave others that may read the right answer. I did not say you were negative in the post.

Bolognese2022 profile image
Bolognese2022

Hi there

I have fibromyalgia, IBS,, oesophageal hernia and lots of other issues not related to the digestive tract. I started with stomach pain in 2021. They tested for gallstones but nothing could be seen on the scan. The pain disappeared but lots of symptoms of GORD, after 15 months of various investigations from both ends the surgeon’s agreed to a stomach wrap. Great, then I mentioned the same pain had returned that I had in 2021. The stomach wrap operation was withdrawn. The consultant was lovely he explained everything and he needed more test in case it was the gallbladder.

Although he told me the scan I needed would not take long I had my doubts. The last test took 9 months to be completed. Well within the month I have been given an appointment. I hope this time it will inform the decision process and something can be done to ease the symptoms and pain.

missvenus profile image
missvenus

have tender and painful stomach with constipation followed by loose bowels loads of pain pretty sure all down to fibromyalgia, all i can do is treat the symptoms and hope it goes away

Fibroguy66 profile image
Fibroguy66 in reply tomissvenus

Fibromyalgia is linked to IBS/Ibd and digestive issues etc.With fibromyalgia food passes slower through the bowl hence constipation.

I find flare ups personally cause loose bowels etc.

Medications can also cause stomach issues to do please don't rule that out.

Don't over do it on diarrhea relief pills as the consequences can be dangerous and lead to bowel blockages etc.

Dizzytwo profile image
Dizzytwo in reply toFibroguy66

Hi there, you said " with fibromyalgia food passes slower through the bowel hence constipation" That's very interesting. Just curious which research study you found this in? I wouldnt mind taking a look at it . If possible could you give me a link please. I would be very grateful thanks.

Momo

Fibroguy66 profile image
Fibroguy66 in reply toDizzytwo

Hi was told this in hospital when I was rushed in and spoken to by the consultant surgeon 😷

Dizzytwo profile image
Dizzytwo in reply toFibroguy66

Interesting thanks.

Fibroguy66 profile image
Fibroguy66 in reply toDizzytwo

Not feeling brilliant today by far sorry 😔 IBS/Ibd day

missvenus profile image
missvenus

i feel as if i need to help things pass through me as you are right they move slower, so many things to deal with with fibro

MaggieSylvie profile image
MaggieSylvie in reply tomissvenus

I havent looked back since I installed bidet attachments to my two toilets. The one downstairs has much better water power and it's like having a colonic irrigation at home. I don't know whether it is entirely safe but I have become (fingers crossed) very regular! (as well as clean).

Fibroguy66 profile image
Fibroguy66 in reply toMaggieSylvie

Hello be very careful with this technique 🙏🏻 The lower bowel & colon is a very sensitive area indeed.

Slightest pressure increase can tear or puncture the bowel wall which is very thin in tissue membrane

MaggieSylvie profile image
MaggieSylvie in reply toFibroguy66

Thanks for that advice. I will be careful.

Fibroguy66 profile image
Fibroguy66 in reply toMaggieSylvie

Please honestly be careful.It's a complex area indeed.

To much will remove the protective mucus membrane & any good bacteria 🦠 there.

A perforated bowel is like being stabbed by a external instrument etc.

Very nasty and fatal

MaggieSylvie profile image
MaggieSylvie in reply toFibroguy66

I had wondered about all the good stuff in there, but so far, it is wonderful to empty my bowels every day, mostly with a smoooooth passage. When constipated, I call it the Mommacat method of getting you started. But yes, I will hold off on the pressure!

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toFibroguy66

Somebody else has asked that I comment on this post but I agree with their comment. It is better to say it can be fatal or more completely "A perforated bowel is a life-threatening condition with a high risk of death. The prognosis depends on a number of factors, including the severity of the perforation, the patient's age, and the timing of treatment."

I suspect you may not be receptive to this but your comments often state things as facts when there is nuance to almost all health subjects. However, I totally agree that bowel health should like other parts of your health be looked at with caution and ideally with a health professional as the guiding light so to speak.

Yankeecandle34 profile image
Yankeecandle34

I was taking naproxen and ended up I started being sick and couldn't keep anything down the pain was terrible I was sent to hospital for camera down to find out I had helicobacter I need like 4 lots of antibiotics and I could end up with hernia they said but I keep getting loads of pain and I sometimes can't do the toilet this is what I'm left and yet the hospital told me to never take naproxen again yet my doc still prescribes me it! It's mental......

2thebeach profile image
2thebeach

I have had IBS for over 40 years with all the usual tests along the way. I had a bad bout of diarrhoea last summer which led me to getting a microbiome stool test through a GP with an expertise in this area. She also suggested I saw a dietician and I have been following the FODMAPS programme since October last year. It's a slow progress and you have to be very strict with yourself and motivated but I have seen an improvement so it's definitely worth it. I've had to miss out so many foods I thought were OK. Over 70% of people see an improvement on this diet. I wasn't sure about doing it as it's a lot of effort but I'm glad I have. I'm the best I've been for years. Hope that helps and gives you some encouragement that things can improve.

Blearyeyed profile image
Blearyeyed

Have you been referred to a Dietitian. It's possible to ask for the referral on the NHS.Believe it or not , it's one of the best things you can do with digestives issues in the UK because the Dietitians can order stool tests , and request your GP to do other tests that they usually don't bother with because of expense.

They also do intolerance tests so you can know whether you actually have an allergy or intolerance to wheat , gluten , dairy , lactose, yeast etc. or just sensitivity which means that you then learn how much if these foods are healthy for you. Just trying " Free From" isn't always the answer, it's often quantity that is the problem.

They properly guide you through the Elimination Diet (FODMAP) over a number of months , bringing in separate food groups in the right order, this is important because it helps you to learn which foods bother you and by how much , so you learn how to " food stack" in a way that keeps lots of food groups on your menu so you can have a nutrient rich diet without the same amount of IBS or digestive flares.

They can also send you back to Gastro for more help after they get their results.

Often certain types of medications for diarrhea or constipation can have nasty affects on people with IBS , depending on which type they have and the underlying causes. Many cannot take Immodium or Lactulose. Many will be much worse with things like Magnesium if they include oxylate or citrate. Some , like me can use some of them. I have Gut Dysmotility and IBS - C.

Sometimes you can end up going from one extreme to the other because you can have days of constipation then the medications you've taken to clear it build up their effect and so the " flushing out" that finally happens after whatever blocked you moves is like an erupting volcano.

Fluctuating IBS , not caused by Medication use, as you seem to describe is quite hard to control.

It took years to mainly have my IBS in control , through much trial and error. I wasn't sent to a Dietitian early on , when I'd found out about it for my daughter I'd struggled to find my individual needs for more than a decade.

Some things I have learned in general.

Eat soluble fibre foods each day but avoid insoluble fibre , it's more likely to cause pain , blockages or diarrhea whichever IBS you have.

Drink the recommended amount of water or fluids each day it's necessary to cope with the internal dehydration that IBS causes and to keep things moving.

Eat smaller , lighter portions , have five small meals a day instead of three big ones , as digesting big meals often causes the system to slow down and get blocked or overloads it and causes undigested food to race through you.

Eat as varied a diet as you can , only exclude entirely foods that you have a definite intolerance or allergy to, work out how much of food groups you are only mildly sensitive too you can eat without symptoms , include fruit and vegetables. Increase foods containing B12 and Folate . If you are having a flare you usually need more foods with minerals too because you lose a lot from dehydration.

If you have IBS-C for example. a Carnivore Diet or extreme LC/ HF isn't appropriate, it helps to limit red meat and have smaller portions of meat or chicken but also take care with the amount of fats you eat and eat a varied amount of soluble fibre foods including fruit and veg.

If you have IBS- D , increasing protein foods and limiting certain foods with insoluble fibre are important so often a 100% vegan based diet isn't practical and can cause more symptoms because lower carbs are often helpful.

Avoid artificial sweeteners and reduce processed foods , even many so called healthy premade foods and limit processed sugar to rare treats. Artificial and Natural Sugars in high amounts are often a trigger.

Exercise , like Fibromyalgia, keeping moderately active each day and doing exercise within your comfort zone and slowly expanding that comfort zone helps control IBS if it is linked to slow movement of foods or muscle weakness.

Kegle exercises each day don't just help the bladder they train the lower bowel too. You can get a print out of Kegles that are specific for Men or Women from visiting the Bladder and Bowel Community website , search Kegle follow the links.

Exercises that help to improve your core and keep your moderately active help IBS like walking , resistance bands , tai chi and swimming or aqua exercises. Crunches , Sit Ups , Planks can make IBS pain far worse,

Deep Breathing , learning to breath through the nose and lift the diaphragm and expand the stomach help IBS. They also improve the muscle system of the stomach as well as helping to improve pain.

At home IBS massage technique. If you have IBS - C or gnawing pain , or feel blocked and bloated.

Lie down , relax your body toe to head, do five minutes of deep breathing , then using the base of the palm of the hand firmly but gently and slowly massage your stomach in anticlockwise circles from your belly button expanding outwards . Do this movement for 1-5 repetitions. Only start with one or two at first. Breath deeply as you do it. Practice it when you aren't constipated to get the technique .

This sort of Bowel Massage can help control bowel movements and pain in IBS which can be from blockages or pseudo blockages from nerve conditions.

There are a number of recommended websites that teach you recipes to help reduce IBS caused by food sensitivity which teach you to understand the FODMAP diet and food stacking to use long term after you've done supervised FODMAP with a dietitian. They have instructions and recipes.

These include Monash University ( the home of low FODMAP) this is medically recommended, a great site called A Little Bit Yummy does interesting recipes based on FODMAP.

Steer clear of sites and books that just suggest going "free from" for life without support they are often following theories and methods that can cause unnecessarily restricted, unbalanced eating behaviour that may appear helpful at first but can gradually cause more issues over time.

You will get there , but it does take time and commitment and a few sessions near the loo, take care , Bee

Fibroguy66 profile image
Fibroguy66 in reply toBlearyeyed

Hello Been there & tried it amongst other internal cameras etc.

Guess it's another cross to bare 😔

Blearyeyed profile image
Blearyeyed in reply toFibroguy66

I don't have the usual suspects like Crohn's or Coeliac etc.I've had numerous trips over the years to Aand E , Gastro , signed in and signed off, the trouble is if your IBS isn't active on the day you get a colonoscopy, they just say it's IBS with unknown cause as most Gaston Consultants, oddly. have little interest in IBS that may be caused by intolerance, and most know nothing about the Neuro gastroenterology issues.

That's when trying the Dietitian becomes more vital, doing the Elimination and FODMAP under supervision after ruling out the usual suspects for inflammation really does help you get the symptoms under control and helps you create a meal plan that works for you as an individual.

It takes time but it's worth it in the end.

Sometimes things work most of the time. Much like with Fibromyalgia, Self Care is very individual and takes consistent use, and pacing your daily activities and reducing stress are also key for keeping control.

Like Fibromyalgia sometimes over exertion , worry etc. can start a flare no matter what you eat or take because of the added fatigue and physical tension you experience.

Planning a Lifestyle with more balance between rest and activity throughout the day helps.

I have gastric and bowel Dysmotility which probably relates to my Ehlers Danlos Syndrome and Autonomic Dysfunction.

It also causes something called Pseudo Bowel Obstruction Syndrome, so my muscles just stop moving causing a sort of invisible obstruction to my bowel transit. It causes the IBS and pain.

Obviously, as you take medications to help transit while the bowel is not doing it's bit eventually when movement occurs you've got an eruption!

I also have other digestive issues including B12 and Folate Deficiency in my case they are Functional and I need injections and infusions , and Pancreatic Enzyme Insufficiency so I have prescribed enzyme therapy.

It doesn't matter what I eat and oral supplements digested in the stomach didn't work to keep my nutrient levels in range. So that nutrient deficiency adds to the causes of IBS and digestive Dysmotility .

As you get older , or if you take various essential medications , your stomach acid changes and it does gradually change his much of the nutrients you eat are absorbed. In time , if your nutrients levels become lower, in particular , Vitamin B12 and Folate, as they have a knock on effect on Iron and Vitamin D can cause more inflammation and effect various parts of digestion that trigger IBS. Sometimes liposomal supplement sprays or sublingual supplements absorbed via the mouth can improve these.

Getting my vitamin and mineral Insufficiencies managed also helped reduce the IBS symptoms and stop the need for Poo Watch.

Like I say , IBS and Fibro may not be cured but you can get to the point that you manage them whilst having a good quality of life even though it can put you through hell while you get there.

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