Mygroove

[Mygroove]

Hi. Years of IBS-D. Not much support from doctors. Lactose and fodmap intolerence. Take 2 tablespoons of phylum husks with 500ml water daily. Recently my newish (9months) family doctor is not helping at all and took away the two Rx that were helping. When asked why he doesn't recommend fiber my doctor said "People don't listen." Used up all of my sick days, holidays and extra days off work. On unemployment for 3 months now. Still no support from doctor. Started taking imodium and peppermint oil last couple days. They slow things down a bit. Really looking for help so I can live a full life.

[angelwings52]

I'm so sorry that you're not being supported by doctors. Were you diagnosed with IBS by a GP or a Gastroenterologist, and did you have your gallbladder checked? I'd also recommend asking to be checked for Bile Acid Malabsorption as that can be mistaken for IBS-D. On a personal note, hypnotherapy can really help with IBS, there are good self guided apps available.

[Mygroove in reply to angelwings52]

Thank you 🤗 I will look into hypnosis apps. Thank you for letting me know there is such a thing. As for more tests... today I start looking for a new doctor.

[SuzyQ2 in reply to Mygroove]

I had one hypnotherapy session enabling me to go cold turkey and stop smoking - it was hard going - but been 11 years now. My sister is also a qualified hypnotherapist and she's brilliant - certainly helped me on an unrelated issue

[BabsyWabsy]

Hi and welcome Mygroove, this sounds so familiar. It is a common experience that doctors are dismissive of your gut symptoms. One locum GP told me that he 'didn't know much about guts'. This lack of knowledge, I suspect, is widespread. So, the line of least resistance is to ignore it. Infuriating for we patients. However, because of his admitted lack of knowledge, he referred me to a gastroenterologist, who was very reassuring. You can ask for a referral and /or a second opinion. The outcome for me was that I was diagnosed with microscopic colitis which was successfully 'damped down' with a course of specialist steroids. (Initial 'diagnosis' was 'Just IBS'!) However, Angelwings makes a very good point about BAM, and the test for this is quite simple, but will also need a referral. On a general note, it is easy to dismiss life impacting symptoms as 'Just IBS', a catch all term when they really haven't a clue. However, before that diagnosis, other possibilities should be eliminated. If the medication that you were on was helpful, can you ask for it to be reinstated? If the lack of it is worsening your symptoms, it should give you reasonable grounds to ask for this. If you are anxious about talking to the GP, can you take someone with you, or even ask for one of the practice nurses to go in with you? If your GP practice has a medic with a particular interest in guts, you could ask to see them. Their areas of interest are usually mentioned on the practice website.

[Mygroove in reply to BabsyWabsy]

Thank you 🤗 Today I start looking for a new doctor. I reported the doctor who said, "People don't listen." I think I have a right to be informed about treatment options regardless if someone else didn't listen to that doctor in the past or if the treatment options are simple. I talked to a prescribing pharmacist on the weekend who gave me what I hope is great advice: buscopan for cramps, pepermint oil for nausea and imodium for diahrea plus fiber, lactose free, Fodmaps and exercise. Will see how these changes go. Hope to find a better doctor that I can make requests of and get information from. Honestly believe that if a doctor pooped his pants on the way to work once because it was too forceful to hold for 5 minutes that they would learn everything about the gut.

[BabsyWabsy in reply to Mygroove]

Hey, good for you! In all honesty, I think some of them get away with doing the minimum. How judgemental was he as well?

If you are going to follow he pharmacist's sound advice. Can I add a few of caveats?

1. Try one new thing at a time, otherwise you won't know which has worked.

2. Some people have a problem with lactose, not everyone, and if it is an issue, lactose free products are widely available, such as Lactofree milk from Arla. Mature cheese or yogurt will have very little to no lactose because it has been used up by the cultures used.

3. Did the pharmacist suggest a source of information on FODMAPS? Info on here if not.

4. If you are not already eating plenty of fibre, introduce it very slowly as it can cause bloating, diarrhoea etc if you go from very little to a lot. Just what you are trying to avoid.

5. Gentle exercise is great, such as a daily walk.

6. Loperamide is very useful, but it can take a little while to take effect. Too much will have the opposite effect as it slows your gut down.

[Mygroove in reply to BabsyWabsy]

You are the best! Thank you very much for your recommendations. 🤗

[BabsyWabsy in reply to Mygroove]

No problem. Been there done that. Happy to share.

[Whynotthis in reply to Mygroove]

I understand totally what you are going through. Good luck with finding what may work for you. You are not alone, as is evident and this forum is an excellent place to find suggestions and experiences.

[Lolomac]

So sorry you’re having such an awful time and getting no support from your doctor. I have ibs-c and take peppermint tablets daily but the biggest thing that helped was changing to decaffeinated tea and coffee.

I hope you find something that helps.

[Mygroove in reply to Lolomac]

Thank you 🤗

[xjrs]

Sorry to hear about what you are going through.

You may want to work through the information on this website to help you get back on track:

ibsresearcher.com/

[Mygroove in reply to xjrs]

Thank you 🤗 I will.

[Starfush]

Defiency in essential minerals, magnesium, calcium etc. also low vitamin D what helps too.

[Mygroove in reply to Starfush]

Thank you 🤗

[Mosey1702]

So sorry to hear how you have been treated.I also had IBS-D for 10 years until I did the FODMAP diet and discovered it was any food that contained fructose that was my problem. If you are intolerant to lactose, you are most likely the same. If you can go dairy free for a while you may be might be able to see.

In my case, by excluding fructose from my diet, I no longer suffered from diarrhoea at all. Needless to say I had to arrive at this diagnosis by myself because my GP was either ignorant, or more likely, as you say, not interested.

If you can get a gastroentrologist referral, they recognise the condition and also will make sure it is not something else.

[Mygroove in reply to Mosey1702]

Thank you 🤗

[Popps21]

Hi, sorry you’re not getting much support for your GP. It’s seems to get minimised. Some don’t realise how much it affects your daily life!

I drink peppermint tea to help with cramps. It’s meant to be anti spasmodic & peppermint oil capsules too. I’ve drunk decaf for years now that helps me.

I try not eat too much high fibre. I’ve tried Fodmap too. Onions I can’t eat. Sometimes I eat a low residue diet (white bread, rice, eggs) to help slow things down.

At the moment I don’t eat after 8pm until 8am to give my gut a rest to see if that helps.

Keep a food diary & try one change at a time.

I hope you get some help soon.

[Mygroove in reply to Popps21]

Thank you🤗 IBS should not be minimized. We might not die from it but we do need to know how to live with it. I see a new doctor this week who I plan on interviewing so we can both decide if we want to work together. How do you support your patients with IBS-D? will be one of the questions I will be asking. I hope the interview goes well.

[Popps21 in reply to Mygroove]

That’s good, will be interesting to see what they say. Wish you the best of luck.

[Letsfixit1]

Hi, I don't know why my IBS has vastly improved over the past few months because I've made a few changes at the same time. One of the main changes was to try and eat as many small amounts of as many different kinds of healthy food as possible, and reduce the amount of sugar. After over a year of the FODMAP diet, restricting so many foods with absolutely no improvement, I have reversed the process because I suspect I was lacking in many vital vitamins. I have also reduced my fibre intake - it was definitely the case that the more fibre I ate the softer the stools became. Many years ago a consultant recommended a tablespoon of bran with every meal - the results were awful, and more recently a different consultant said that was the worst thing to do!

I have also increased my vitamin D supplements, and added magnesium. I tried the NERVAPP for anxiety - it was brilliant at improving my sleep and teaching me how to breathe, but unfortunately didn't cure the IBS.

So sorry your doctor is unsympathetic - I was in tears a few years ago in the doctor's surgery after an accident on a walk home. She organised a colonscopy just to be sure there was nothing sinister. You need a good doctor to see you through this. Good luck

[Mygroove in reply to Letsfixit1]

Yesterday, I found on the internet, the care pathway recommended and provided to physicians in my region by the health authority. The recommendations for treatment options and care practices regarding IBS are listed on a easy to follow flow chart written in plain language that I am able to understand with out a medical degree. My doctor did not communicate any of that information with me and did not recommend one of any of the several treatments options. My trust is crushed. Its been months of seeking help. This has negativity affected my health, career, finances and self-esteem. It has left me isolated and humiliated. WOW! Just WOW! I'm not sure what my next steps should be. I am already booked into interview a new doctor this week. Should I contact the clinic I was at? How many people with IBS are sharing my experience needlessly? I am in shock.

[Zantecat]

Hi, not sure why you would take extra fibre when you have IBS d (?phylisum fibre) , if you listen to starfush, then you must be short of magnesium etc, but in my experience that’ll make things worse.

If you’ve had all the Checks ( colonoscopy etc), then look at diet and stress. Many things aside from lactose etc can be triggers, Fodmap diet might work in short term, but you need to find what upsets YOU, not an easy task I’m afraid x