Ibs has finally broke me!

[Lainy01]

Morning all. I have had ibs for the past 14 years. I have tried absolutely everything to get to the bottom of it. ive spent an absolute fortune on different supplements. I've tried every single diet going without much success.

Ive just been signed off work for 2 weeks with a stress related illness. I didnt realise how depressed I have become over the past 3 months. ive stopped doing a lot of the things that I normally do. Then all of a sudden I started to get really anxious and I know it is directly linked to food.

I've recently had a hydrogen breath test which showed I produced too much methane. This was through a private nutritionist. She said I had methane based sibo and recomended I follow the bi-phasic diet, which is a combination of the specific carbohydrate diet and the low fodmap diet. it really is quite a torturous diet and I think this depressed me even more. she also suggested that I take atrantil which is supposed to kill off methane.

I think the diet made me worse when I looked back over my food diary. it was mainly meat, fish, limited veg, eggs, nuts, herbs.

Anyway, Im not in the right headspacd to do it and im still feeling very anxious around food.

I dont know how to get out of this and feel really trapped.

Plus I cant afford to continue with the private nutritionist.

Just thought id share in here ti see if anybody else had methane based sibo?

Thanks

[patientj]

What is it about food that makes you feel anxious? Is it because you don't know what's going to make your symptoms worse or your scared of eating it because you feel it will make your symptoms worse?

Personally, I'm a little alarmed at the diet your nutritionist suggested for you. I've not heard of the biphasic diet, but I know that the SCD is very restrictive. It is also arguable that for people who have issues associated with food, forcing them to follow such a restrictive diet may increase their anxiety, which is may seem to be doing in your case. I would be more inclined to speak to a dietician about doing the low FODMAP diet on it's own, with plenty of support.

You talk about methane-based SIBO. I'm not sure this is a technical medical diagnosis, but I would argue that if you're suffering from constipation, there is evidence that methane can be a contributing factor, and this can be exacerbated if this prevents the proper functioning of the bowel causing bacteria to make their way into the small intestine causing SIBO. However, I'm not sure how much this is correlation rather than causation. Perhaps methane-producing bacteria may survive better in the constipated gut.

However, it seems to me that your biggest issue is psychological. IBS can be triggered by things like anxiety and depression, but you can also enter into a negative spiral which only exacerbates things further. I would speak to your doctor about anti-anxiety meds and if you can get any CBT on the NHS. Like you, I also hit rock bottom with my IBS, and dealing with the psychological side gave me the best improvements. If you'd like more info, I blogged about some of my experiences here:

patientj.wordpress.com/2016...

patientj.wordpress.com/2016...

patientj.wordpress.com/2016...

Let me know if you have any questions, but I might not be able to reply until the weekend.

[Lainy01 in reply to patientj]

Thanks ever so much for your reply.

I have recognised that my mood is directly linked to my symptoms.If my symptoms are bad my mood is low.

I have my symptoms 24/7 and have had no relief from them for some time.

My mood has got lower and lower over the past 3 months and I felt I was dragging myself to work.

I think the thing that triggered the anxiety was following the torturous diet for nearly 4 weeks without much relief. My energy levels were horrendous as was my mood. When I started taking the atrantil I noticed some improvement and was symptom free for about 4 days. Then I had too many treats too quickly and the symptoms came back.

That was breaking point for me. I couldn't bear the thought of going back on the diet and my mood was so low I couldn't bear the thought of eating foods that could make me worse. I felt as though I was trapped and both of my options around food seemed unbearable. This was when the anxiety kicked in. I felt for the first time in my life that I was unable to cope and this scared me. im usually a very strong resistant person and I hardly recognised myself.

I was so anxious at this stage that I struggled to function.

Due to my depression my motivation was probably running on 50/100 for the past few months but at this stage I felt like it was a 0.

This was when I got signed off work.

I've asked for a referral for some counselling as my relationship with food is horrendous.

Ive come off that diet now and I have been looking back over some of my food diaries where ive recorded symptoms as well and im going to create a diet from that.

Iver always looked for a cure and I am aware of my all or nothing thinking sometimes as my goal has always been to get symptom free.

Accepting that this is not possible is very hard for me.

Thank you very much for your advice.

Lainy.

[patientj in reply to Lainy01]

Fighting depression can be tortuous - I had a similar problem that helped to trigger my anxiety.

I was really struck by you saying that you're normally such a resistant person. Maybe you've been holding things back for too long. You don't have to be strong all the time. I hope you manage to see a therapist soon. I think they will really be able help you.

[kat28]

ive not heard of methane based sibo , but i know i produce some rotten smelling methane lol, i'm going to see a dietitian on the nhs in jan can you ask your doctor to refer you support will probably make a difference , ive asked them to support me doing the fodmap diet as never done it before x hope your feeling better you've been suffering a long time with it.

[denvajade]

Hi I just wanted to tell you my experience, I have had bowel issues most of my life but 5 years ago over night I developed a huge stomach, nine months pregnant with twins, I had trouble breathing due to my stomach pushing on my diaphragm. Every single thing I ate and drank caused my stomach to blow up. I went to numerous specialists some believing I had some form of cancer, I was soooo ill. But I did not have cancer and no one knew what was wrong, I went to emergency writhing in pain several times. Anyway four years down the track and still very ill we moved country and I went to a digestive disease clinic, within 24 hours I was diagnosed with Dysbiosis. I had never heard of it before. It is when the bad flora in your gut and bowel take over, causing terrible fermentation, hence bloating and pain. Also causing one to gain weight. The bad flora lives on carbs and fibre. This specialist has treated me with antibiotics designed for the gut only, very strong. It relieved my symptoms greatly and after 2 months I stopped and went on a 500. Billion probiotic. Unfortunately it just came back . I am now having a procedure which I am glad to share with you if interested.

Sorry about the huge post.

[Hiddenaway in reply to denvajade]

Is it not possible to just stay on the medication you were on if it was helping? I would certainly be interested in hearing more and the condition and treatment

[Zeldag in reply to denvajade]

Hello Denvajade,

Please can you tell me more about the procedure you mentioned you were having, as my lovely Mum is so so poorly. She's been in hospital now for 10 days and they have no idea what is wrong with her. She's 88 and although we all know her days are limited if she could have one that wasn't so darn uncomfortable it would be heaven for her. The bloating is so so bad at the moment and a new symptom since she was in hospital in June 2017. It's now almost the end of July 2017. I"m new to this site so I hope this message gets to you and I hope I am alerted somehow if there is a response. Thank you !!!

[denvajade in reply to Zeldag]

Hi Zeldag I am sooo sorry for your mum, try and take her off as many carbs as possible. She needs to g on a tablet called vancomycin to kill bad bacteria. Ask the doctors if they think she could hav Dysbiosis. Please keep I. Touch.

[Zeldag in reply to denvajade]

Oh Denvajade, (do you live in Denver by the way) : ?

Mum had a procedure done yesterday, they found a blockage so we're waiting now to see if that's shifted things at all. She's had a small amt of poo come out (better result than none) but it goes to show Mum was right, she knew something had changed from her last visit to hospital. I'm so proud of my Mum !!! so yes, once we're a little more well than now I will ask for sure about the Vancomycin. I've printed off all I could find on Dysbiosis too. You haven't said what the procedure was you had, if you don't mind would you tell me more please ? Thank you for responding so so quickly. Lots of love, xx

[bigbunbun3]

Hi Lainy01, I like you have had the breath test done ( along with stool tests all paid privately ) the test came back with methane Sibo. Also stool tests revealed high Candidia. My nutrionist also put me on the very low carb diet with a supplements regime. I have been doing this for 6 months now, it is so hard to keep to the diet especially if eating out.

Over the years I have tried so many supplements, dare not think of the amount of money spent trying to find a cure for the IBS-C.

I have now decided to finish the diet as my symptoms have not improved after all this effort and expenditure. I am going back to the low FODMAP diet, but just going to try introducing different foods slowly.

I have found some thing that helps my constipation, 15g Milled Chia seeds soaked over night in half mug water. It is not very nice to drink, but this is the only product that really helps my tummy.

Last night for the first time in ages I had a lovely supper, cheese, bread, pate etc,etc, tummy not happy this morning, but I enjoyed the naughty foods and now will try to be good again until Xmas eve.

Hope you feel better soon x