GP advises nothing they can do : The last few... - IBS Network

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GP advises nothing they can do

pinky75
pinky75

The last few months I’ve been really struggling, I’ve had loose stool (toilet trips 3-8 times a day), stomach pain, wind, bloating and a pain in my bottom. I have lost over 1 1/2 stone since the start of July, which the gp has said is not a concern as I have been eating less on the lowfodmap diet.

The gp prescribed mebeverine which has helped stomach pain however I still have all these symptoms. When I contacted the gp last week to ask for any help with symptoms they asked me what my expectations were from them and that I did not have cancer and their was nothing else they could do for me.

Is this right that there’s no other help? I get these symptoms everyday and even by the afternoon when the bowel movements tend to have finished I then have the pain in my bottom which is constant.

58 Replies
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Hi, has anyone mentioned Bile Acid Malabsorption (BAM)? I don't want to get your hopes up but it might be worth googling it to see if it fits your symptoms. But what you describe is very similar to me. I tested for BAM nearly three years ago but didn't meet the criteria.

pinky75
pinky75 in reply to Maureen1958

Thanks for the reply. No all the gp advised was ibs nothing else and that I had to find my triggers. I’ll have a look into that thank you.

ST65
ST65 in reply to pinky75

I have bile acid malabsorption, and your condition sounds very similar. Ask for the test, if they say no change your doctor. It’s not curable, but it is treatable, and it’s wonderful not to be welded to the loo!

pinky75
pinky75 in reply to ST65

Thank you. I think I may have to change dr to ask for this as mine says there is no more they can do.

Have you had any tests

pinky75
pinky75 in reply to Viklou

They did a cealiac test and other blood tests and they did a stool test for hpylori

Viklou
Viklou in reply to pinky75

What about stool or faecal calprotectin test. It's an indicator for inflammation in your gut. Ask your GP to do one. They're relatively cheap to do compared to more invasive Colonoscopy or endoscopy. If normal great its definitely IBS and there isn't much much they can do. It's down to lifestyle, stress and diet unfortunately.

pinky75
pinky75 in reply to Viklou

Was told by the nurse at the gp that they couldn’t do that stool test due to covid. I’m not sure if this is still the case (I was told this at the start of July)

I have paid for a private dietitian and have been following the lowfodmap diet since July but without much improvement on symptoms. With them I have also tracked exercise, stress etc and these do not really make any difference to my symptoms so not sure what else I can do.

Viklou
Viklou in reply to pinky75

Change GP, I would ask again for a calprotectin test. It will go to the same place as the h-pylori test you had done so not sure why they won't do it

pinky75
pinky75 in reply to Viklou

Thank you

BabsyWabsy
BabsyWabsy in reply to pinky75

In my area they will not do calprotectin if you are over 60. The thinking is that by that age you have chronic inflammation anyway. I had to see at least three GP's in my practice to be taken seriously and was referred to a gastroenterologist by a locum who admitted lack of knowledge, had a colonoscopy and was diagnosed with microscopic colitis. I am now trying to get tested for BAM as I have all the symptoms. You might need to be assertive and you have a right to ask for a second opinion and/or a referral. The medical profession is generally quite dismissive of 'Just IBS'. Some have very little knowledge of gut issues. They have no idea what it is like to spend half your life in the bathroom.

Do you get night symptoms? If yes, it might even be IBD but you need to do that test.

pinky75
pinky75 in reply to Dalph87

No once i am asleep I am fine until the morning when my gurgling stomach wakes me up.

Dalph87
Dalph87 in reply to pinky75

Very good chance it's just IBS, when we sleep the colon is asleep as well, if it was something organic you most likely wouldn't have been able to sleep well at all (Chron's Disease, Ulcerative Colitis and Bowel Cancer don't sleep with us).

Mebeverine for me is hit and miss, sometimes it calms it sometimes it doesn't, I also have to deal with almost constant daily symptoms so night time is a huge relief.

If you sleep well there's a very high chance you just have IBS so stop worrying.

Did you do a blood test? If the calprotectin value is within normal range or only slightly higher it hints you have IBS, if it's high it's most likely IBD.

It's a frustrating and long term condition and for many people there isn't much that can be done, it's functional.

You have to stick with the low fodmap diet and identify trigger foods, avoid stress, take probiotics when needed and be sure to drink enough.

pinky75
pinky75 in reply to Dalph87

Thank you for the advice.

Ask to be reffered to a Gastroentrolygist

pinky75
pinky75 in reply to KWEls

GP has said there is no reason to refer.

Lithop99
Lithop99 in reply to pinky75

Change your GP. I found that some will be more helpful with this sort of thing than others. I have managed to get this referral from an IBS diagnosis. You have to be firm and persistent to be listened to unfortunately.

Eliana5
Eliana5 in reply to pinky75

I know my answer a bit late. But just had this problem again. This makes the 6th Gastro I have been "dismissed by". It's very frustrating. Why can they do so much for Ulcerative colitis, etc..but nothing for IBS, IBS-C, IBS-D. It's very frustrating. I recently had an upper and lower Barium follow through. No nearly as bad as I thought still waiting for some reply to test. I usually ask my Doctor for a referral..but now I am googling "Colon and rectal specialists" maybe they will be more helpful. But I agree. Google some reputable gastro's or even better Colon and rectal specialists or ask your Doctor (not the gastro but your primary care) for a referral or Google. Try to look at reviews a 4 star rating and above. Don't lose hope or give up. You deserve better. 😊

I've had that response from a GP before too... "what do you want from us?". It's a disgusting way to treat people with a chronic condition. Get a different doctor and/or demand to see a specialist.

pinky75
pinky75 in reply to RickyW

Thank you. It took me by surprise when they said it as it’s obvious you just want help to manage condition.

I didn't have the test for BAM (bile acid malabsorbtion) as not all hospitals do the test and apparently it is rather expensive to do and with Covid the waiting lists are long. The other way to test for it is through a trial of the medication. I Would suggest asking your GP for a 3 week trial of colestyramine sachets, if it is BAM it will help your symptoms and if it isn't it won't make a difference. I started on 1 sachet a day for first week, then 2 sachets a day for second week and third week was 3 sachets a day and it was literally life changing. I was going to the toilet up to 14 times a day with loose stool, had really bad stomach pain and bloating and all the bathroom trips and loose stool created pain and ended up with hemorrhoids and blood in stool and all of that has gotten better since I started the sachets.

Also my GP did about 3 stool samples during lockdown so its not true that they can't do them.

pinky75
pinky75 in reply to Nifflerluck

Thank you for the advice.

Nifflerluck
Nifflerluck in reply to pinky75

Good luck i hope you manage to get sorted. Its no way to live and GP should be listening not just fobbing you off.

Doctors are there to help and support patients who are poorly!

I agree.

Definitely worth changing doctors or make a formal complaint. Are you in the UK? In the UK, you shouldn't need to get a private dietitian, your GP should be referring you to a NHS dietitian for free. Did you do the FODMAP diet for 2 weeks to the letter i.e. not have any FODMAPs at all for those 2 weeks? At the end of those 2 weeks did you still have diarrhea?

If that is the case push for the BAM test - they can't say you don't have BAM unless they run the test. If you need help with assertiveness ask a friend or family member for help. I have had to help my elderly mother to get the health treatments she deserves and I won't take no for an answer.

pinky75
pinky75 in reply to xjrs

Yes I’m in the uk. GP hasn’t offered a dietitian at all. I have already asked my husband to call the gp for me but since he called they now seem to offer no help so I think I’m going to have to change gp as I find it’s not even worth contacting them now as I know what they will say.

I have followed the lowfodmap diet strictly since July and have not yet reintroduced food as no relief from symptoms.

xjrs
xjrs in reply to pinky75

You definitely need another doctor and could make a complaint to PALS and try to get some help from them:

nhs.uk/common-health-questi...).

No one should be left with diarrhea and made to deal with it on their own. You need to be under NHS care until it is resolved and it is up to them to find a solution. My NHS gastro kept me under his care and kept making follow up appointments until my situation was resolved to my satisfaction. Even in my last appointment he said he wouldn't close my case - he would leave it open in case I still needed support from him.

The fact you are getting no relief from the low fodmap diet means that they MUST carry out further investigation. I would go as far to say that your GP is behaving negligently.

Breathless76
Breathless76 in reply to xjrs

Can I ask you where you live in the UK,and the name of your Gastro??

xjrs
xjrs in reply to Breathless76

I live in East Anglia and my gastro is Dr Tighe.

Breathless76
Breathless76 in reply to xjrs

Thank you. It’s just that I’m in a lot of extreme pain,like most folk on here. I’ve travelled all over and seen a lot of Gastros,but got no where,the last one was about 65mile away,but I was getting nowhere so I decided to give it up with him. And since I’ve had no one,and same as Pinky my GPS useless. But I think that’s a bit to far.

But thank you all the same.

xjrs
xjrs in reply to Breathless76

If you are suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

iffgd.org/lower-gi-disorder...

It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex probiotic have helped me with this intestinal pain.

Breathless76
Breathless76 in reply to xjrs

I read about Alflorex Probiotic a few months ago,and I asked my Pharmacist about it,and she said she had never heard of it. So I will ask again. I am and have been on Pregablin and Mirtazapine for about 8 yrs,I’ve repeatedly ask for help to be weaned off both,but I get nowhere. Obviously I feel neither do any good.

But thanks once again I will look into that probiotic. And I do believe that is my problem Dysfunctional bowel.

xjrs
xjrs in reply to Breathless76

I buy Alflorex online direct from the manufacturer:

shop.precisionbiotics.com/u...

It probably isn't widely available in shops.

Eliana5
Eliana5 in reply to Breathless76

Have you tried a "Colon and Rectal specialist". They don't seem as dismissive. And much more helpful and knowledgeable.

Breathless76
Breathless76 in reply to Eliana5

I’ve never heard of a colon and Rectal specialist,I thought they were just Gastroenterologist?

Eliana5
Eliana5 in reply to Breathless76

No..not really. The colon and rectal specialists have more experience and education in colon, etc than a gastro. They also are able to put people in experiments or experimental medication that may be beneficial for them. I have had better luck with them.

Sadly, there seems to be nothing they can do for us IBS sufferers. I have tried everything over the years but now take 2 Aloe Pura Complex probiotic pills each night before bed. It's helped a lot. It's not gone away, but the pain is minimal compared with previously. Others recommend Alflorex probiotics. Anything is worth a try. Good luck.

pinky75
pinky75 in reply to Hdr2712

Thank you. I tried alflorex but this gave me even worse diarreah and I have been scared to try any others since.

Hdr2712
Hdr2712 in reply to pinky75

I haven't tried it yet but seem to be ok on the Aloe Pura. I hope you get reluef soon. X

Eliana5
Eliana5 in reply to Hdr2712

Have you tried a "Colon and Rectal specialist". They don't seem as dismissive. And much more helpful and knowledgeable.

Change your GP. Ive had similar treatment from some GPs. One just shrugged and said "its IBS, just one of those things im afraid, was there anything else?" In the UK, GPs have taken covid as an opportunity to do even less now theyve had a pay rise. They can put a "protect the NHS" sticker on their door and take the rest of the year off leaving the work to lower paid nurses to triage every illness and ailment. Its easy to change GPs in the UK. Even try a different GP in your surgery. After a lot of trial and error I did manage to find a decent GP in my surgery who even calls me out of the blue to see how I am. Just keep on at them. Best of luck

pinky75
pinky75 in reply to gurgleguts

Wow you have found a good gp there.

I have spoken to more than 1 gp at my practice and they all say the same it’s ibs and that I don’t need a referral. I did also go in one time as I was struggling with possibly piles but I wasn’t sure so the triage dr gave me an appointment but when I went to it before I even sat down I was advised that due to covid I should not be going to see them for something like that and it made me feel very uncomfortable.

I'm very interested to read this thread as I'm suffering in a similar way. Since taking Fybogel, my stools are better, but still loose one minute, hard the next. Follow up phone call from my GP yesterday in which he said that in some people bowels just don't work properly and all I can do is try different meds. I have only had blood tests, no stool tests. I'm due to see an NHS Dietician on Friday. having waited since January. and I'm expecting to be put on a FODMAP diet. Just hope this agrees with my diabetes and helps with my bloating, pain and wind.

pinky75
pinky75 in reply to learning2me

Good luck with your appointment on Friday

Eliana5
Eliana5 in reply to learning2me

Have you tried a "Colon and Rectal specialist". They don't seem as dismissive. And much more helpful and knowledgeable.

Thank you - I'm compiling a list of questions to ask.

Ah Bless you. I have lost the same weight and never have had a Doctor 's appointment yet. Had tests and they showed inflammation. Took cider vinegar to help that and discovered I had a parasite infection. I must say I was given a referral to see a Gastro. Waiting list here is 3 yrs. When I rang for medication for parasites, the Doc was astounded. I am thinking of registering with a Vet. At least they are kind and care for their patients!

pinky75
pinky75 in reply to Quiet2020

I can’t believe the waiting list for gastro is 3 years. Are you in the uk?

Your right it would be nice to deal with a doctor who seemed to care.

Quiet2020
Quiet2020 in reply to pinky75

Yes, N. Ireland. Was speaking to a chemist today and he is disgusted with what is going on at GP surgeries. They are a closed shop. Dear me if an animal is feeding and failing the first suspect is a parasite. My hubby is a from a farming background!!!😊. I have been infested with round worms. They cause all sorts. When I said to the GP, the answer was I don't know. Well once upon a time Doctors were scientists not pen pushers for the pharmaceuticals!! By the way I was mortified. I am very particular about food and obeyed lockdown. There is only one place I bought baked ham, in a butcher's shop, and I suspect it may have been contaminated. I have cut out gluten and dairy and I now don't know if this is right or wrong. Paying to see a Gastro. Stomach is better but still hit the floor running to the bathroom in the morning. Never was like this until 6-8 weeks ago. Issues kinda started Feb / March. Never had an appointment. Just shoved a referral to get rid of me! I think it is time they were called to task. Think I will contact my MP and Boris!! 😊

Eliana5
Eliana5 in reply to Quiet2020

Have you tried a "Colon and Rectal specialist". They don't seem as dismissive. And much more helpful and knowledgeable.

Hi. Sorry to hear your problems especially with your GP. I agree you should change your GP and ask to be referred to a gastroenterologist. I suffered with pain on and off for many years top right hand stomach eradicating to the back. My GP kept me on Ranitadine for 16 yrs was told if I stopped taking them I could get esophageal cancer. I continued taking them then was changed end of last year to Lansaprazole which in May 2020 decided to stop taking because of pain on and off. I have had endoscopy and colonoscopy with everything normal. I saw another GP who told I have suffered too long and referred me for a ultra scan, that came back saying I had a hernia and swollen gallbladder. With those results my GP sent me on a 2 weeks wait to gastroenterologist who sent me straight away for a MRCP this has shown that I do not have a hernia I have a gall bladder cyst and calculous Cholecystitis not any perforation. This will need to be removed at some point. My GP has now sent me for certain blood tests which the hospital have asked for. Waiting results. I dont want to worry anyone as everyone is different and some pains are the same as others but they do not have the same problems. I just say please ask to be referred to gastroenterologist. Let them sort you out. Will let you know the outcome of mine. Keep safe everyone x

Have you been checked for a tear? It can cause pain in your bottom, especially after BM...normally a burning type pain. Frequent, loose BM can cause this.

If you are ok with an exam I'd ask to have this checked. I use rectogesic and it gives relief but can cause headaches...for me the headache was preferable to the alternative

Good luck

The dr has checked and said they could only feel a possible small pile.

It sounds like your body is detoxing. I had awful ibs and sugar addiction. But they put sugar in everything these days. Hidden sugars. That is what caused my ibs. I take fivelac and take Candisolv. It's helping me, but do your research.

pinky75
pinky75 in reply to swarke22

Thanks I will look into this.

swarke22
swarke22 in reply to pinky75

And if you choose this regime follow the guidelines. I tried to rush it and ended up with the hertzimer reaction which was one of the worst case of flu I've ever had. The candida needs to die off but not rushed, staged increments.

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