My 2 Pence - Maybe this can help you? Maybe you can help me?

[BowsAdHearts]

Hi all,

I just want to tell my story. I hope it might help some and I hope someone might help me. Maybe, just ranting will help. This is going to be a long post.

I was first diagnosed with IBS in college, around 12 years ago. No tests were ever completed. Basically I was having really bad constipation and stomach aches with it (so bad, at one point they thought I have appendicitis). The stomachs got so bad, one day my mum took me to hospital. At which point, with no tests, they diagnosed IBS.

I was put on a loads of drugs and it took around 6 months for me to find something that worked, and it calmed down for years. Occasionally flaring up when I was stressed. Annoying, but it was only once or twice a year, so was manageable. At this time Buscapan worked for me.

However, recently my stomach pains have got worse and by worse I mean, waking up with crippling stomach pain every day, trying to manage it every day, while working and running a household.

I was getting desperate. I can't live like this! So, after a chance conversation with a paramedic at a course I was taking - they suggested I get tested for a Thyroid condition. She noticed I was constantly cold and found it difficult losing weight. I went to my docs and they did the test - surprise, surprise, it was negative. I thought that the Thyriod test was going to be the answer to everything, upon hearing that my bloods were normal, I burst into tears. I am desperate, frustrated and just want an answer. The docs then proceeded to tell me "it was all in my head and I was suffering from anxiety". I DO NOT HAVE ANXIETY. It was like she was telling me I was making it all up!

So, I have swiftly put a complaint in and moved to another doctor. I begged for this new doctor to run some tests. My stomach pains are getting worse. Some days I can't even stand up without collapsing on the floor. This wonderful doctor has run tests. I have had so many blood tests I have nicknamed the nurse "The Vampire". They found some inflammation in my body - they can't tell me where but they know it's there. This test was repeated to see if it would disappear by itself. It didn't. So they tested me for arthritis - now I know I don't have arthritis, but if they want to test me for it, that's fine. That came back negative.

So, I have been tested for gluten intolerance, negative, arthritis, negative and they took a stool sample (worst experience ever for someone that can't poop on cue!) for Inflammatory Bowel Disorder, which was negative. They have referred me for an ultrasound scan, which is on Friday. I am hoping and praying they will find something (which I know sounds odd), so they can finally tell me whats wrong. IBS just doesn't seem to cut it anymore.

I am following the low Fod-Map diet, there are so much conflicting information out there about this diet, but cutting out onions and garlic did ease some pain. I have also found out that Busapan can cause constipation, so have been taken off these. I have been given Medeverine, which helped with me going to the loo, but then gave me painful bloating. I bloat from right under my boobs and I look around 8 months pregnant. It's painful and feels like you need pass gas - but you can't. So, I spoke to my doctor and have stopped taking these.

Past few days have been bad, very bad. I have pains all up both sides, but mainly on my left side and around the bottom of my tummy. I have been to the loo loads and it is not reliving it. It's a sharp pain on my sides and a dull uncomfortable cramp in my tummy. It makes me wince in pain.

I have tried hot water bottles, paracetamols, hot baths, peppermint tea and nothing is working - any ideas anyone?

I am off work, which is not ideal as I am not getting paid! But, I cannot cope with this anymore.

I have heard of this detox tea - Teami, its a UK based company or Florida based depending who you ask. Lots of people do the 30 day detox to lose weight, but it comes with a "Colon Cleanse" tea - sounds delicious doesn't it. I have talked it through with the doc and he says it worth a go and doesn't contain anything he is worried about. I have seen a few people say it got rid of their IBS, so we'll see what happens. Apparently though - it can be quiet harsh on the system in the first week - so I will have to book some annual leave so I am near a comfortable loo at all times. If anyone is interested, I'll keep you posted.

Thanks for reading

[Lisahelen]

Uk based people could try holland and barretts aloe vera colon cleanse. One tablet a day, kept me regular no adverse effects as far as i remember.

[slm1307]

Very similar to what I am currently going through. Please keep me updated, I have just been given Medeverine by my ever-so-not helpful doctor, and everything I have read just doesn't seem too good... I am very interested to see what comes back with your tests.

I have had an MRI, colonoscopy and ultrasound and all have come back with nothing even though my blood levels pointed toward Chrone's but nothing showed in the tests. I am really struggling with everything, I have just had 4 days off work because of pain and becoming best friends with the toilet.

The hardest part I am dealing with is the bloating. I am looking into the FODMAP diet and getting some hard facts on what is good what is not, along with cutting out the fizzy and caffeine. I really am not the most body confident person in the world so dealing with excessive bloating just really brings my mood down and I get very very low. Stress is a massive factor, my life is one big stress ball with the only alternative being to move to an island miles away and leaving everything and everyone behind, but this is just not do able!!!

good luck!

[grahamrupertrules in reply to slm1307]

sorry your having a rotten time. i know how rubbish it can be.

yry fodmap for at least 2 weeks. iv gone wheat free this last month and been better for that.take normacol to stop constipation as on low fibre diet as most fibe foods give me bloating or groin spasms.gas in colon.

lots of water gentle exercise,waliking can all help.

too much suga and artifical sweetners a no no.

i love chocolate so not easy to keep sugar level down.

been better for less tea.no coffee.

onions like a poison to me as is cauli/cabbage/greens.

hope something here helps.

hope you soon improve.

gfff

[BowsAdHearts in reply to slm1307]

Hi Hun, Slm1307.

I would def recommend cutting out onions, garlic and fizzy drinks.

Black tea has never been a problem for me, but I can't drink coffee anymore.

The the pills def didn't help with the bloat - id have a word with your doc before you stop taking them. But I know they did me no good. It's a really painful bloating too. You feel like something is gonna pop out - like that film Alien.

Look after yourself and try not to get stress. I know, easier said than do. Make time for you. I enjoy adult colouring in when I'm stressed.

I'll let you know how it goes.

[bburzycki]

Trust me - they make stuff that will make you go, and by go I mean like install grab handles in your bathroom and hang on kind of go... you just might not have found the right stuff yet.

That said diet is huge in IBS or any gut issues and just purging is not ever a great answer as your body does not like an empty "cleansed colon and there are studies that say that doing these things can cause gut microbiota to be thrown way out of whack and you need those guys to do what they do.

There are some very interesting Functional Medicine Dr's out there.. some are garbage others are interesting to hear what they have to say and why, but in the end I have found a mix of Specialists (conventional dr's) and non traditional Functional med dr's make for a more balanced approach to the issue.

This could be all sorts of things and without testing you will not know.

The question is if a purge makes you feel better or worse.

[Lindylou2016]

Hi I hope you get some answers very soon , I have ibs but a friend of mine was diagnosed with it without much testing , she too had it for a good few years , but the last flare up she had lasted weeks , we were all worried about her as she wouldn't eat and was losing weight , but one weekend she was in so much pain she was admitted to hospital and was in for 4 days having tests and it turned out that she had a infection deep in the intestines that had kept returning , I have never heard that this could happen , but she was on antibiotics for a few weeks and now is perfect no more trouble at all , but if this was the case , I wonder how come the infection didn't show up in the first place ,

[BowsAdHearts]

Thanks guys - some interesting posts. I will defiantly take everything on board.

My tea has arrived! I understand why someone would have concerns over this cleanse, but I am going to give it a go. I can always stop taking it if it's bad. You never know, it might be my miracle cure.

I have my scan today - it is hard getting up in the morning and not being allowed a brew/peppermint tea. Hot water is boring. Can't even have lemon in it!

And surprise, surprise, I can't poop. So, I am in for an uncomfortable day. Can't wait this is over! Finger crossed, I'll have some answers today.

I feel like I am starting to lose weight too. My clothes are starting to feel loose me. I don't have any working scales in my house, but might have to fish some out today. I am not actively dieting, but the bloating is putting me off food. Not like me - I'm 5"3 and 14 stone and have always loved my food! Plus, I still haven't got my head round this low Fod-map thing, I find I open the fridge and have nothing to eat. Fruit and veg goes so quick, so I am living off brown rice and quinoa.

I'll let you all know how today goes! Not looking forward to going to this drop in center to get an ultrasound scan. There are gonna be loads of pregnant couples there and the bloat will make me look pregnant - I wonder how many people ask how far gone I am! Cringe!

[BowsAdHearts]

Well, the scan was horrible. The nurse was rude and the doctor pressed so hard with the scanner I was in tears. And to top it off, he said everything looked normal.

Now I don't know how an ultrasound works - I'm not a doctor - but they only scanned one side, my right. My left has always been the most painful. I don't know if this makes a difference, but I'll mention it to my doctor.

I don't want to sound like I'm clutching at straws, but I would really like them to scan my whole abdomen. We'll see what my doctor says.

Had a bit of an uncomfortable night. You know them, up all night with stomach cramps only to rush to the toilet for a fart to appear and nothing else. Up seen 4am and have a long day ahead. No idea what caused it. I had a low Fod-Map day - perhaps apart from 2 glasses of wine and a can of Coke Zero. Could well of been that. Ah well - least I'm not in pain today.

I just admit - posting on here is helping a lot. Feels like I have an outlet. I would encourage everyone to give their 2p.

Thanks!

[Hidden in reply to BowsAdHearts]

I really feel for you and hope that it gets sorted very soon. I am lucky in that although I do suffer with something most days, mostly pain and bloating, it’s nothing as bad as what you are going through. It disgusts me the way doctors just fob someone with IBS off, even though some are diagnosed and haven’t even had a test!

Best of luck and I really do hope you get some relief some time very soon.

[Lamloum]

Hi everyone.

I would go into details and explain that what I went through is quiet similar but I don't have much time now to explain and write it all.

From my experience and what I think I have (awaiting confirmation ) is a condition called fructose malabsorption.

Caused by food poisoning, wrong diet, gastroenteritis and too many antibiotics .

Was told its IBS for years and tried everything but at the end it turned out to be H pylori + lactose intolerance + fructose malabsorption . I had tons of blood tests. A CT scan, an MRI and a gastroscopy, + stool tests to check for parasites etc...

No treatments available but low FODMAP diet + avoiding FOS is the way I feel bette.

Gut can heal with supplements and avoiding trigger foods ( fructose, fructans, gluten, lactose etc... )

I will write more when I can but its worth looking into it if you have tried everything else . There is a fructose malabsorption test but not widely available yet . Just read more about it and see for yourself if symptoms match. Best way is to limit the diet and try for a couple of weeks and decide if u feel better. Low FODMAP alone is not good enough as it still contains foods high in FOS which make u think it's not working .

Probiotic like Symprove ( original flavour ) helped me too as normal probiotics contain prebiotic and FOS which don't help.

If this is useful to anyone let me know and I can try and explain more .

Best of luck

[BowsAdHearts in reply to Lamloum]

Thanks. I will ask for this.

My pain has been really bad these past few days. I have getting a sharp pain in my left side.

I've been back to the doctor. He is now saying it's not IBS, but could be acid. Told me to take pills for acid reflux and take codeine. Both are doing nothing.

I'm very fed up and emotional. Although today my mood has improved.

Again the doctor tired to fob me off with stress. I had to have the same conversation. It's not stress.

He wants to do yet more tests.

Further to this. They haven't received my ultrasound scan results!! 2 weeks on!

What if that shows something else?

I'm just at a loss.

[Egnig in reply to Lamloum]

Can u pls advise what FOS is?

[Lamloum in reply to Egnig]

Hi Egnig .

Here is a link to explain what FOS are but old read the whole article and the different subtitles . 

en.m.wikipedia.org/wiki/Fru...

FOS is extracted from the blue Agave plant as well as fruits and vegetables such as bananas, onions, chicory root, garlic, asparagus, jícama, and leeks. Some grains and cereals, such as wheat and barley, also contain FOS.[4] The Jerusalem artichoke and its relative yacón together with the Blue Agave plant have been found to have the highest concentrations of FOS of cultured plants.[5]

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Sometimes avoiding these foods help . In my case it definitely did . Any pre or probiotics or food containing them I avoid . 

 I am really sorry you are still feeling bad and doctors are not helping I am not really surprised though . But keep persisting . The doctors just want to diagnose with IBS sometimes and give the usual fiber and antispasmodic medication which done irk for everyone in my case it made things worse . 

 As for th scab results yes they take time to get back which is insane as I think all the waiting makes things worse but pls don't give up and keep trying to get answers . 

[246bindy]

My 2p worth to you.  Taking linseeds really helped with me- a tablespoon twice a day with a glass of water.  also take a glass of water before bed and as soon as you wake up.  Good luck.  I've been through very similar to you - not 100% yet but so much better.

[hathi999]

Maybe a long shot, but thought I would reply just in case, stomach aches, bloating, feeling cold and difficulty losing weight can all be symptoms of a vitamin B12 deficiency, see list of symptoms here on my blog difficulty-swallowing.com/s... , I know you have had a myriad of blood tests, but B12 deficiency doesn't always show up in a blood serum test (or even if your blood serum test is 'normal' you can still have a serious deficiency (the scale used in the UK isn't anywhere close to ideal.  What is your blood serum level?  The best test to have is a methylmalonic acid test.  The blood serum result just gives you the amount in your blood (but not in your cells which is where your body needs it).   Personally I think that the Japanese use of 500 as their lower threshold for normal blood serum for Vit B12 is a better measure and since B12 is water soluble you can't overdose on it anyway.  I have had miraculous results using methyl B12 and since my doctors weren't able to give me a solution to my own health issues and any gut issues but you at far greater risk of a B12 deficiency (I am a coeliac), I went down this route and have never looked back.  All the best.