IBS C

[Rungsted]

Hi

Have been suffering for a number of years, following surgery for bowel cancer it has got so much worse

I have exhausted the support at NHS and found a supposedly leading Gastroenterologist impossible to deal with due to dismissive attitude

Spent a fortune on private treatment but again little success lots of advice from people who do not understand the pain and anguish

Mental health is bad due to feeling of isolation and loss of hope

But some how I keep going

Pain is due a lot to gas which I produce loads whatever I eat

It gets trapped, and this gives terrible pain, meds like sertraline and laxido I think make things worse but somehow scared to come off them as I do manage a BM most days although it is hard work which doesn’t help my sciatica

I am determined to keep finding but just wanted to share how I feel

I do worry that because the pain is all consuming my mind works overtime making symptoms worse but it is that not knowing if there will ever be a solution is the most scary

Just smile and wave

[MyStar86]

All I can say is that I feel your pain and I totally relate to you I feel lost and hopeless being let down by doctors and suffering all consuming pain 24/7 no one understands and it’s killing me!! You have to keep fighting to find the right gastro try to research ones that specialise in motility disorders because then they should understand your condition better. What tests have you had? Any treatment except otc laxatives?

[Rungsted in reply to MyStar86]

Very little else to be honest, just made to feel I am wasting their time

Told I may have SIBO ?

But anti B treatment just made things worse and nothing improved, but much of the consultation is done over the phone !!

There is so little recognition, it’s all in your head scenario!!

[MyStar86 in reply to Rungsted]

Did you have an SIBO breath test to diagnose it? They shouldn’t prescribe the antibiotics unless you definitely have it or they will make you worse so I’m sorry to hear that. Maybe talk to the doctor about motility tests…..I’ve never had a private consultation over the phone even during covid my private appointments have been in person. Where are you in the country?

[Rungsted in reply to MyStar86]

Nottingham, use the dreaded QMC

[Rungsted in reply to Rungsted]

The Gastroenterologist is a very strange and unhelpful person, not sure why they are in the caring profession

[MyStar86 in reply to Rungsted]

I had that with my nhs one I’m down in Bournemouth and my gastro made me cry in my appointments multiple times. However I have had better people since going private and travelling to London.

If you research some good gastros and are willing to travel it is worth it vs letting yourself suffer with rubbish people via nhs x

[Chouchou1234 in reply to MyStar86]

Hi I struggled so many years.

Sibo can be methane positive which won’t show on the usual breathe test. You need to get methane tested too.

Also prucalpride- it’s for motility can help.

It’s a specialist motility medication

I see a colon hydrotherapist in London who helps a lot - she’s also a nutrition and supplements help.

She will also open place in Eastbourne where she lives Anne Lisa miller - I’ve seen her for years and really helps.

Also if you see a private one I see Dr Millar he see clients in a a private in BMI Enfield .

He’s brilliant.

[MyStar86 in reply to Chouchou1234]

I’ve just been on a trial of prucalpride and it actually made my symptoms worse which I was shocked about but it made it impossible to go as it made it very loose but I was unable to go it was awful I felt so sick and unwell with it I’m still left with the pounding head ache since stopping them. It’s scared me how they have affected my system I had thought they either just wouldn’t work not cause more problems. I was doubled over whilst taking them constant cramps but no relief from it. I know they are meant to help but they don’t help everyone.

Hydrotherapy can be very bad for some people I’ve had it in the past but I’m latter years I’ve had inflammation in the colon and small intestine so unable to go near hydrotherapy now but again I do know that this helps some people and I’m glad you have found the benefits of both the medication and hydrotherapy 😊.

[xjrs]

Sorry to hear what you have been going through. I am not sure if my answer to this post regarding constipation helps at all. You may only need minor tweaks to your diet to soften up stools and make them easier to pass, rather than going the whole hog:

healthunlocked.com/theibsne...

Perhaps if you manage to have more complete evacuations, this might help the gas to reduce.

For trapped gas Rennie Deflation works best for me.

[Beezwax]

Hello,

I just wanted to say I am with you re the mental health issues including feeling isolated and hopeless. A consultant I haven’t seen much of and quite frankly have little respect for suggested I had counselling. I told her it’s my stomach / bowel issues I need fixing not my head. If my physical problems were sorted my head would be just fine. Her empathy was zero.

We have to put up with so many issues, we certainly don’t need gaslighting from either the NHS or the private sector.

Good luck with trying to find a solution.

With best wishes.

[XDjames]

Yep, I get the taking over life thing. You've also been through cancer, is there any comparison? Doesn't that blow IBS out of the water?