I don’t know what else to do please help!

[Atalose]

So I have bowel incon and I’ve had an colonoscopy and tested for wheat intolerance I’ve tried all sorts of tablets for ibs etc I’m house bound I don’t know I need to go until it’s at the exit then I have two mins to get to the toilet I don’t always make it I started a new job yesterday and I’ve already had to be off I can’t go out with my family. My doctor told me he doesn’t know what to do with me and that it’s ibs it’s not I spend most days crying I’m 38 it’s so humiliating does anyone know what it could be or any specialist that you can recommend? I don’t know what else to do

[Hidden]

There are such things as incontinence pads and panties, not going to solve it but should get you a little more time for the journey. Anxiety is likely a big part of the problem and diet can also play it's part. Most would suggest starting the Fodmap diet, but I never found it helped me. My IBS has coincidentally improved after going on a diabetes and kidney based diet. It is not fool proof and I'm still susceptible to anxiety, but generally feeling better in myself.

I couldn't accept being told I had to live with it. No way, I took control back and have been able to find a better way for me. Life is bearable these days although not likely to ever get back to 100%.

If I had not have been told I was CKD I would not have changed the diet and would not have realised the difference. I was on an IBS diet but it didn't make the difference that the diabetes and kidney diet did. Essentially I believe it has been the move away from processed man made food to natural foods that is the difference form an IBS diet.

No salt, No sugar, no herbs other than Garlic, no spices, very little red meat and most definitely no man made substitutes, no alcohol or fizzy drinks. Sugar or salt is probably not something you need to worry about as it is more for my diabetes and kidneys. There is both sugar and salt in what I eat but as much as possible I eliminate it all. I use a natural food sugar substitute, if at all, which I can't remember the name of at the moment, sorry. That's how little I use it.

Some would say there is not a lot of fun in my diet and I would agree, but I do what I have to do to be comfortable.

Right now I could murder a big mac, trouble is it would likely try murdering me! That is what stops me eating what I shouldn't.

Try one change at a time until you find what works for you.

Cheers

[asbayford]

Get your GP to refer you to a dietitian to start the low fodmap diet. Download monash University fodmap app. Honestly, this diet is a life saver for IBS D

[xjrs]

Please note that there is no scientific evidence behind food intolerance tests.

bda.uk.com/resource/food-al...

The only way to find out is a elimination & reintroduction diet.

Here is some information about IBS that I have shared with others in this group:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce your anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/....

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app it will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also 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 have helped me with this intestinal pain.

You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.

You can find some info on self management here:

theibsnetwork.org/the-self-...

Please avoid any practitioners outside of your normal healthcare system. They are not trained doctors, but they say that they can diagnose and treat you. They are not qualified to do this. I got sucked in, spent loads of money and ended up in a far worse position than when I started. Good luck.

[Sandylane]

You ever try going to a kinesiologist I used to be awful and started going and I have never looked back that was 5 years ago