Update

[Daisy2191]

Been on a strict low fodmap diet since September. Got an appointment through to see a dietitian on 20th December. Anyone got and insightful questions to ask? I'm going to the appointment but I'm not helpless have has low fodmap cook books ect already. Eat9out is a pain in the arse (or at least is likely to cause one).

Found out I don't have Sibo, which I was sort of disappointed about as I was hoping for something treatable I could get relief of my symptoms from.

Had 2 flares since 28th November. I'm in so much pain until I am able to have a BM. It's like I'm just sat waiting for the next load that I know is coming but until it comes I'm sweating with pain. It's strange though I'm in pain but I cant cry while it's happening, I'm sort of sat there grunting and groaning while I'm punching my arm or tapping my temples and rocking back and forth to dristact me from the stomach pain.

I can deal with the different type of BM and I'm well passed embarrassment ( fortunately never had a public accident though) but this pain when I'm in flare is unbearable. It last around 1 to 2 hours then when I have finally finished BM I'm normally knackered and cold. End up needed to go to bed for around 4 hours. Obviously this is not ideal with work.

I feel like I can say I have been better since I first came to this group in Feb. Bit now I dont know if I actually have physically been better or if my mental outlook improved but is now deteriorating again.

Like this morning, I had a terrible night sleep. Couldn't drop off, then felt all my belly digesting or so it seemed, and up 4 times for a wee. Kept me up all night. But in my head I want to go to the gym. Try to get some symptom relief from exercise. But instead I'm still in bed overthinking even little movement and noise in my stomach/bowel as a reason not to go. Putting my anxiety into over drive. I'm so analytical and I can talk through what I should do ect but I cant seem to bring my self to do it. Feel like I know how to help myself but there is a big brick wall in the way.

Also does anyone know now I had the sibo test with negative results will the GI consultant make me another appointment or will I have to chase something up?

Thanks

[grufjones]

Hi Daisy

Sounds like you are having a tough ride right now.

For me there are two things there that resonate with my experience of IBS D. Firstly the dietitian consultation is key. They are able to support IBS in a variety of ways. For me fodmap worked and I got a good deal better and navigating the fodmap diet once I had my dietitian consultations. Ideally keep a food and symptom diary for a few weeks beforehand, the Tummi Fodmap app is good for that, or just go with paper and pen.

Then the second thing is the stress/anxiety side. For sure IBS flare-ups trigger anxiety and anxiety triggers IBS. I think we all need to find our stress management processes regardless of IBS. For me exercise works really well, even if I am exhausted. Or just a walk in fresh air with a podcast or music on. Other people have success with meditation etc...

Hope you make good progress. Fodmap works for 70% I believe, so make sure you are quite strict and see if you can see a pattern of improvement

[xjrs]

So sorry to hear you've been having such a hard time. Have you spoken to your gastro or GP about the pain? Have you been prescribed anything e.g. 10mg amitriptyline or Linaclotide for IBS-C with pain? It can be quite normal for your tummy to gurgle and make noises overnight whilst the colon is preparing for a BM. I can understand you getting attached the the idea of SIBO - it seems to be the 'in' thing' - a lot of nutritional therapists are diagnosing this when people actually have IBS (large intestine) symptoms. The SIBO breath tests aren't accurate. My gastro said that real SIBO cases are rare. I went through a whole load of testing for this and attacked my microbiome with antibiotics and antibacterial agents unnecessarily and this made me quite ill. The NHS diagnosed me with visceral hypersensitivity (intestinal nerve pain) and IBS-C which in the end made perfect sense for my symptoms. I am now taking Linaclotide which is helping a bit with the pain. I've also heard enteric coated peppermint can help with IBS and pain. The fodmap diet, once you get into it should help too. There is a way out of this. You can lead a better life and have a better state of mind. It is understandable to get upset though when you have relapses.

[IBSNetwork Partner IBS Network]

Hi,

Are you doing the low FODMAP diet under the supervision of a registered dietitian? It's important to work with a dietitian as foods need to be reintroduced.

[Daisy2191 in reply to IBSNetwork]

Hello. I was given it to follow in September but my appointment with a dietitian is not until 20th dec.

[IBSNetwork Partner IBS Network in reply to Daisy2191]

Hi Daisy,

More info on FODMAPs here theibsnetwork.org/diet/fodm...

A dietitian will be able to help and advise you. In the meantime, if you'd like our help and support here's how we can help. theibsnetwork.org/member-be...