Frustrated with support for IBS issues

[Weetabixfan]

Hi I have been under a consultant for issues with bowls and stomach. Basically told me today probably got IBS and I should take over counter diahorrea medication. And washed his hands of me. Feel frustrated and lost to know what to do as my bowls and my stomach cause issues everyday . Any suggestions for other avenues

[Hidden]

Hi,

IBS is not a disease, it is what we get labelled with when nothing else can be diagnosed. In other words they don't have an answer.

I suggest you keep at them until they discover you won't go away quietly. You are your best advocate. Get referred to a dietitian, a good one can help you through the selective diet trail.

The obvious start is the Fodmap diet, gluten free, lactose free foods and no alcohol or fizzy drinks. Basically stick with bland foods and build from there. It can be one big frustration but until you find what the likely causes are there is little choice. Strenuous exercise/ physical work and stress can have a major influence on the stomach as well.

I take laxatives daily along with bran and canned fruit to combat constipation, then I tip over into a bout of diarrhea for good measure. Fortunately it only lasts a day each time and it usually isn't rampant.

A lot depends on just how severe your IBS is. But which ever, don't give up, keep fighting for a solution. Doing nothing aids the problem until it becomes unbearable. Of that I can attest.

Cheers

[Weetabixfan in reply to Hidden]

Thank you for your reply - I really appreciate your advice and will take it on board. Your reply has helped as the consultant made me feel like it was me who was the issue and I had to sort it on own.

[Hidden in reply to Weetabixfan]

Hi,

If your IBS is relatively severe don't rush in and take probiotics as this could make the situation far worse. The flora in the stomach needs to be in balance. What usually happens is the so called "good" enzymes are killed off and we are left with yeast based enzymes. In severe cases the enzymes are mostly yeast based, but can be of varying ratios depending on the severity of IBS we each have. Unfortunately we all believe we have severe IBS, no disrespect.

Most people have mild IBS and taking probiotics doesn't work negatively, but if you think your more to the serious end of the scale then don't try probiotics until you starve the yeast to weaken it. I can only tell you I managed 3 weeks of living on a cup of tea before introducing first a prebiotic for the probiotic to live on and then a probiotic, for 3 months. Take care to get a good probiotic as they are not all what they are portrayed to be.

I cannot give you any scientific proof and can only offer anecdotal evidence of what I did. But I can say I initially fixed the problem before another course of antibiotic set me back again. I was all set to try a third time when I was referred to a good dietitian and gastro specialist. Fourth dietitian and second gastro specialist. Combined with my new pro-active Doctor I have lucked out and for the meantime have stopped the starving to give them a chance.

You can try a hot lemon and honey drink with not too much lemon. I'm doing 6 tea spoons of lemon to 1 of honey in a coffee sized mug. It helps but is not the fix. Alternatively a teaspoon of honey sucked on can work just as well. If you are getting the reflux into the mouth then I chew on sugar free chewing gum which produces saliva and neutralises the mouth acid. Of course try to stop the worry. I can't remember the times I have been told that one. As yet I can't tell you where to find that switch but I keep getting assured it is possible, beats me!

At the end of the day think through anything you are told or read, without scientific evidence go with your gut feeling. Don't rely on anecdotal evidence, it is just an opinion that needs testing.

Cheers

[Weetabixfan in reply to Hidden]

Thank you , I won't rush into anything. I have to take esomeprazole for life as have Barratts oesophagus. So don't get reflux now. But I do wonder if this effects the balance in my stomach although the medical profession assures me it doesn't 🤔

[Hidden in reply to Weetabixfan]

Hi,

I'm on Omeprazole 20mg up to 4 per day if required and find it helps other than constipation, this is a similar med to Esomeprazole. I also take Laxsol to try and counter the constipation, two per day usually at night for obvious reasons. I can go to four per day but try to minimize the amount of meds I take. With other health issues also contributing to constipation it doesn't always work.

I have just been told to take my Omeprazole 30 to 45 minutes before eating. It has changed the effects, for the better. Previously only told to have it with meals or straight after. Got to the point it failed to work effectively enough.

Been down the Barrett's sometime ago, but nothing conclusive.

I'm guessing you have to have regular checks for the Barrett's. If not make sure you get yearly checks. I hope you have checked out Barrett's so you are informed. I have a sneaking suspicion like Omeprazole Esomeprazole promotes polyps. Likely both are the same thing by different manufacturers.

Nuts can also help with constipation. I usually get stuck into the peanuts and gorge myself silly. Boy does that help. Last time I resorted to them all hell broke loose, both ends, I developed anaphylaxis and struggled to breath. Not a lot of fun while trying to caress the porcelain and waiting for the Ambo's. Taught me a valuable lesson not to be suck a big pig!

Cheers

[Weetabixfan in reply to Hidden]

Thanks for advice !

[Pthom50]

Defo no wheetabix! I had the same from a consultant..they don't want to know! I would suggest low fodmap then come off it slowly to identify your triggers. Good luck

[Weetabixfan in reply to Pthom50]

Thank you 😊

[xjrs]

The first thing you could try is Alflorex probiotic, since many people's IBS is due to a gut bacterial imbalance and this probiotic has been scientifically studied for IBS.

The other thing you can try is the Nerva gut directed hypnotherapy app.

I would try both of these before considering the FODMAP elimination and reintroduction diet, since they may make you more tolerant to different foods anyway.

[Weetabixfan in reply to xjrs]

Thank you 😊

[b1b1b1 in reply to xjrs]

I have been looking at the Nerva method, but have not tried it. Have you done it? Has it helped significantly? Thanks!!!

[xjrs in reply to b1b1b1]

Hi b1b1b1, I did try Nerva, but it was when my pain/symptoms were more managed. I found that it made me highly relaxed, though, which can only benefit IBS. In fact, hypnotherapy or meditation should help. I've read that meditation for instance closes the pain gate:

physio-pedia.com/Gate_Contr...

The Gate Control Theory of Pain is a mechanism, in the spinal cord, in which pain signals can be sent up to the brain to be processed to accentuate the possible perceived pain, or attenuate it at the spinal cord itself. [1]

The 'gate' is the mechanism where pain signals can be let through or restricted. One of two things can happen, the gate can be 'open' or the gate can be 'closed': [1]

If the gate is open, pain signals can pass through and will be sent to the brain to perceive the pain. [1]

If the gate is closed, pain signals will be restricted from travelling up to the brain, and the sensation of pain won't be perceived. [1]

[b1b1b1 in reply to xjrs]

Thanks, xjrs. Feeling highly relaxed could be a good feeling just in and of itself, especially for me as I am a big worrier. I will maybe give it a try.

[Superzob]

Some consultants never seem to develop a good bedside manner! My GPs have always had a better understanding of chronic conditions (I have 6) but they too can’t do much about them; I sometimes think consultants are too proud to admit it.

IBS is frustrating for everyone because it is a dysfunction which seems to take on different forms in different individuals and, as in my case, is almost completely unpredictable. But, as others have said, there are various treatment options which, being outside mainstream medicine, are not very familiar to medical professionals; whereas mainstream medicine has a predictably statistical chance of working, IBS solutions are a bit more hit and miss, because of individual responses. But they are probably all worth a shot.

I would suggest trying the easy ones first: a good probiotic is a good start, but give it a couple of months to work as it takes time for the gut microbiome to adjust; fermented foods, like yoghurt, are also supposed to help in the same way. I have not tried the FODMAP diet because a dietician advised against it as I am underweight, but others swear by it (though it should be done under the supervision of a dietician). I am currently experimenting with the Zoe health plan, but that’s quite expensive so, for me, it’s a bit of a last resort. However, now that Precision Biotics have reintroduced the original Alflorex formulation (which seemed to help), I’m hopeful that the combination might produce a lasting improvement.

Hope you, too, find a solution.

[Weetabixfan in reply to Superzob]

So much useful information thank you so much

[jardinamour]

Exactly what the specialists have said to me.

You have to take control and try things like FODMAP and looking to your own gut health.

This guy is good (very American) as it's all based on the current science: youtube.com/@NutritionMadeS...

[Weetabixfan in reply to jardinamour]

Thank you

[E3178]

I have also found weetabix a problem!

[Weetabixfan in reply to E3178]

Ha just couldn't find a user name that wasn't taken and was in weetabix fan club as a child 🤣 😉 😀

[angelwings52]

Hi, nothing worse than being dismissed by a consultant, they seem to forget that they're dealing with people (had one consultant tell me there was nothing wrong with my left ankle without examining it and told me to lose weight, 3 weeks later I had a full ligament reconstruction!) I'd persist in making sure that you've been assessed properly - it took months of different tests before my consultant told me I had IBS and that there wasn't any specific treatment (but he did give me lots of information) You should have had ultrasound abdominal scans to check your gallbladder and liver, along with procedures to check your bowels. Did you get tested for Helicobacter Pylori and Bile Acid Malabsorption? A good Dietician can help, along with keeping a food diary so you can pinpoint any food triggers. Watch out for artificial sweeteners especially sorbitol, took me far too long to realise that was a trigger. I can recommend hypnotherapy, that's one of the best things that I've done as stress made my IBS worse.

And please don't do what I and my GP did - if you get regular painful cramps for a long time (years in my case!) that Buscopan doesn't really help, don't assume it's just IBS, ask for an abdominal ultrasound to check your ovaries etc - turned out that this pain was due to a 7 inch cystic mass on an ovary and chronically inflamed fallopian tubes and I ended up having a hysterectomy - this is very rare though, don't worry!

There's lots of information available and support if you look, don't feel alone with this.

[Boxroad]

I don’t know what there is to say, I think the nhs has lost the plot, I am a great lover of the nhs but yesterday I got a copy of the letter my gastroenterologist sent to my go saying she had seen me in her clinic and we had discussed my ibs diet and lifestyle, first it was a phone call, second we didn’t even talk about ibs we spoke about my constant diarrhoea and high calprotectin levels, she said it could me my ibs but she wanted to run more tests, nothing about lifestyle and diet, not even in her clinic just on the phone. I am now going to have to make an appointment with my GP and tell them the letter is lies.

[Weetabixfan in reply to Boxroad]

Sounds familiar- my appointment yesterday was a phonecall too which I hate as like to see the persons face . I have had the tests to see if anything physical wrong , but because there isn't that's it ! No advice then except take imodium when bad and need to go to work. So presume it ok to poo my pants and go to toilet constantly on my days off 🤣🤣. I completely can see why you are so frustrated with your letter

[Boxroad in reply to Weetabixfan]

I think the higher you go up the medical ladder the harder it is to get the correct treatment, the nursing assistants and nurses are great junior doctors ok and above that they become more self important and less patient oriented

[Evonne02]

That consultant is a disgrace and should be reported. S/he should investigate or refer you to another consultant, or back to your gp or another hospital. How are you to do this and make the correct purchase yourself? Ask for a 2nd decision via a 2nd consultant. Go back and complain to your gp. Ask to be referred to a Pain Clinic. Speak at length with a pharmacist. Join online groups on Facebook or Instagram to get more advice and support. Write a letter to the hospital department about what happened and how its made you feel. Send a copy to your gp too. Seek help from a charity or CAB. You can even contact your local MP fir help and advice. Please let us know how you get on. All the best 😍

[Gold22]

hi Really feel for you. I have had acid reflux and IBS for years. I have just found an amazing new supplement that is endorsed by an gastroenterologist, and so it is working for me and is game changing. It’s Called Juvia. Do take a look.

[LizzieAFib in reply to Gold22]

Hi Gold22. Hope you don’t mind me asking - What type of IBS did you have? Would love to try something that actually would work for me.

[Gold22 in reply to LizzieAFib]

hi I have many constipation but very sensitive to fructose and artificial sugars and can’t tolerate too much fibre. Also have gallstones

[LizzieAFib in reply to Gold22]

Thank you for your comprehensive reply. I have IBS D, also very sensitive to sugars and too much fibre is a problem too, so I’ll look at Juvia.

[Laxmik]

hi. Sorry to hear about your experience. IBS is different for everyone. Everyone has given very good suggestions. I would only like to add please get a food intolerance test also done as it helped me. I found out I was intolerant to egg and diary which are very big triggers for me. Cutting them out helped me. Hope you feel better soon.

[Boofers]

Hi. You have my sympathy with the frustration over most medical professional's dismissive attitudes to IBS. I was sent to a dietician and did the Fodmap diet, which helped as I now know which foods to avoid. I also discovered I'm badly triggered by xanthan gum, which I discovered by accident, as it's not included in the Fodmap list, but is used in a LOT of free-from foods, also face creams, shampoo, toothpaste etc. Weirdly. Apart from being a preservative and emulsifier, it's also a laxative...

As mentioned by others, you might need to keep nagging until they escalate the issue to someone who will actually listen to you - which is uncomfortable and embarrassing, but this is your life, and they shouldn't keep dismissing you with 'just take over the counter medicine' (particularly as you probably already have, as it's advertised on tv, recommended by anyone who knows about IBS - it's insulting to imply you haven't already tried EVERYTHING you can think of to help yourself!)

I've found amytriptiline helps me (it's prescription only). During all the years I've been complaining to my doctor about IBS, none of them mentioned it, although it's known to be used for IBS as it helps with pain and anxiety - first I heard about it was on this site. I know a lot of people have a bad reaction to it, but I've been lucky enough that it seems to help. I've only been on it for just over two months and I haven't had a big IBS attack so far (only very minor ones) - and normally they're at least once a month for at least a week, and I've had a couple of big things happen in the last month that would normally have triggered a bad attack. I know it's not a cure, and I know I'll have more attacks, but even a short reprieve, or anything that shortens the attack, is something I'm incredibly grateful for. Also probiotics help, although I don't take them regularly unless I'm on antibiotics. I do wish you all the best - keep fighting