:( advice please

[Hilly247]

Hi im new to this group and just really looking for how other people manage. I have had IBS-D for years now, i have been back and forth from my gp due to having severe anxiety about going anywhere, out of fear of urgently needing a toilet and one not being available, all they suggest is lopermide and tried me on antidepressants and several other medications to try and help the anxiety which nothing has really helped, i want to be able to enjoy things with my children and look forward to days out with my husband and family but i just cant because as soon as we plan anything my mind goes into overdrive about planning where the toilets are etc. My husband is very understanding but at times even he gets frustrated with me and says things like why can't you just look forward to things without putting a downer on it by saying things like we cant go there as theres no toilets etc. I just feel like i will never be able to do anything without this worry and its ruining my relationships with people as alot just dont understand fully and think I am over exaggerating or using it as an excuse to get out of doing things 😭😭 any advice on anything that will help me??? I just feel like this is never going to get better 😭

[asbayford]

Hi! I totally related to this. I'm so sorry youre going through this!

I'll tell you what stopped my ibs-D

1) the low fodmap diet - ask your gp to refer you to a dietian, also download the Monash University app to look at safe and unsafe foods. This diet helps up to 70% of ibs-D cases! I was one of them

2) Get a good probiotic, I use Symprove original flavour. Used it since last Nov and its a God send.

3) Enterosgel - a dose x3 a day starting a day or two before a big event and carry it on until youre home. Its natural, no side effects and was even recommended at my GP practice.

I really hope this helps 🙏 x

[Hilly247 in reply to asbayford]

Thankyou for all your advice i will definitely look into these different things x

[Whitesugar]

I had this for over 40 years and sympathise with you totally. You must get your life back. Have a look at bad-uk.org and see if you think your symptoms match and discuss with your GP. All the best to you and your family.

[Hilly247 in reply to Whitesugar]

Its an awful thing to have and causes so many other issues too. Thanks for your advice x

[Jazzybean1]

I can totally relate to this too! Some days are good & some are bad! Anxiety kicks in the minute we start talking about going out & then I instantly feel like my tummy is going to play up! I suffer with awful diarrhoea & the urgency to need the toilet. I panic about being stuck in a queue of traffic just in case or a queue to a toilet. I just recently bought a radar key from amazon which is a god send, but I will only use the disabled toilet as a last resort. I take loperamide & have done do for years now, it works very well for me. I usually take some the day before we make plans & then a couple before going out & I'm generally all good. Just plan your trips as best you can & know where the toilets are to keep your mind at ease. All the best 🙂

[Hilly247 in reply to Jazzybean1]

Im exactly the same the thought of getting stuck in traffic etc terrifies me, its awful. I wish there was something we could take that would just stop it completely 😭. Thankyou for your advice x

[xjrs]

Sorry to hear you've been struggling. There is much that can be done to help your situation, so that you can get to the point that your symptoms are under control and you can feel confident about going out.

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-...

In the meantime theibsnetwork.org have a shop and you can purchase a

radar key from them, which will allow you access to disabled toilets that are normally locked to the general public. If you join theibsnetwork.org they also provide you with a 'Can't wait' card that you can show to people in a toilet queue or to shop owners to ask to use their facilities. You will also be able to have Alflorex on a free 2 month trial from them. Good luck.

[Hilly247 in reply to xjrs]

Thankyou for all your advice x

[Cat33 in reply to xjrs]

Thanks from me too for all this fantastic information

[Cat33]

Ooh I know exactly how you are feeling everything you are saying I sympathise with its a really horrible thing isn't it

I had CBT and it really has helped me I don't know if you have tried it ? You can have telephone appointments

I had the most loveliest young girl as my therapist who said it's one if the most common problems she deals with It was just so lovely to talk as no one understands do they

You will find lots of people to chat to on here

I'd be more than happy to chat and "swap notes" if you need anyone to talk to it can feel very lonely at times and like you are the only one with it

Take care 💕

[Hilly247 in reply to Cat33]

Thankyou, I have trued CBT once before but unfortunately felt no different afterwards, I also signed up to mindfulness courses and have tried many different meditation techniques etc but I just cant shake the feeling off. X

[Cat33 in reply to Hilly247]

I'm really sorry to hear that you didn't feel any better from trying things The feelings are so overwhelming aren't they

I'm sorry not to be of much help you are not alone and I hope that you will find something that will help you

Please take lots of care of yourself x

[jeans]

I was diagnosed as irritable bowel- d for many years I struggled as you are doing Eventually after many years many trips to doctor and many tests it turns out I have bad/bam.