. I written on here lost of times and got good advice , I’m sick and tired fighting this illness and the pain . Doctors are doing phone calls and I’ve been seen a few times . Waiting to see a specialist . That’s all I get from doctor . But for the las5 few months I’ve had enough of it all . Lost the will to fight it anymore . Pain everyday . Tried foodmap tried dairy free and gluten nothing . I just give up yestarday I had constant big D and today my bowel is tight and dore . I’m a sorry sight got 2hot water bottles down my trousers and a tens machine on my back . I’m 66 and can honestly say I’ve had enough of it . Crying and just have had enough . Can’t keep on upsetting my family moaning so just moaning on here sorry folks but just had to say it . Hope everyone is ok , Jay 😩
How do people cope with this illness - IBS Network
How do people cope with this illness
Do you know what your triggers are? First step would be to find out what they are by keeping a wellness diary this will help to identify what your triggers are and learning what works for you have a read about the dairy here theibsnetwork.org/blog/how-...
There may be other factors that are linked to your symptoms that have nothing to do with food, ie stress, anxiety life style factors, work. Taking medications, may well not be the answer.
Taking medications and diet, lifestyle changes ect will help but once you have discovered your triggers, there may be something causing them that you are not aware of and then you can start to look at what works for you diet or medication and self-management. A healthy diet isn’t always the solution some parts of that healthy diet may be a trigger food for you.
Have a look at this factsheet here IBS (bda.uk.com)
Have you downloaded our take control booklet? theibsnetwork.org/blog/down...
Have a look at the range of details factsheets one our website log in with your member details theibsnetwork.org/fact-sheets/ to access them all
Have you looked at and worked through the self care programme? There is a huge amount of information on there re symptoms and medications theibsnetwork.org/the-self-...
I’ve had lots of tests before lockdown .been referred to pain clinic who told me because I have adhesions and scar tissue that had narrowed parts of my bowel I will always suffer from pain . I’ve had dietitian advice and have a health diet of fresh fruit and veg . But no garlic onions and leeks . Have been on liquid diets and build up drinks but nothing helps .seen specialist and was told I had to learn to live with it . As if the operate and remove scar tissue it will come back . Since lockdown nothing been referred to gastro and was told it can take months if not longer . Got 3full books of what I eat and don’t eat and still no joy . So today I’ve had enough and crying was the onl6 thing left for me so tired and writing g it down saves me screaming out loud . Jay
Hi Jay, Just wanted to say I know how you feel. After 35 years I am totally fed up with it. I try to treat it as a challenge but sometimes you just have to have a cry and let it all out. I am alway here and if you want a chat anytime, feel free to message me. Maureen.
Please don’t cry I know it’s hard when your living with pain . What I’ve found has helped me deal with it all is to listen to healing music on YouTube you will find different healing sound frequencies to listen to , it does take your mind off the pain which in turn relaxes the whole body . Trying to think positive helps too always think tomorrow will be a better day I will be pain free. Please keep your chin up x
Thanks for the reply and music sounds good idea but Catty. I lost my hearing 11years ago so can’t hear music or voices any more . But I can read and do subtitles . I can feel vibration and I can hear noises butno music apart from high pitches . So any video has to come with subtitles . Doctors appointment are hard as need someone with me to help . But if I can see people’s mouth I can lip read . So it gets hard as being a heating person to a deaf person is hard .trying to explain second hand from doctor to husband to me .but I just needed to rant still want to just give up but I can’t . My husband is great but even he gets fed up speaking to doctors for me . 😊
So sorry I didn’t realise, you can dismiss that advice then . If you need to have a rant then this is a good forum to do it on , I hope your situation improves and you find some relief stay strong sending big hugs x
It’s fine I’m use to being deaf just wish this bowel was as easy to live with but it’s not . I do read and although I can’t hear anymore if I no the song I canhear it in my mind . Ido miss music and singing , I loved musical theatre and going to shows .but now just would like a few days pain free . But I’m ok just need to rant some times 😊
How are you feeling today had the pain gone ? X
Hi pain still there as always but I m travelling down to visit my grandchildren and dreading it . No more big D now it’s the constipation . But need to go as I won’t see them to after Christmas . But it’s 5 hours in car .but try my best x
You will be fine have more faith in yourself , have a great time and take care x😃
Hi I don’t know how long you have been an IBS suffer but I ve only been like this since April 2021. Before then I was one of them people who could eat and drink anything and it would be ok and now we’ll I don’t know if food is my trigger.
All this trigger talk is very draining too and trying to work out what the triggers are is stressful which then results in stress related, going round in circles.
My recent flare up is 3 weeks now and really down too, my husband does not understand I just say to my kids I have a bad stomach. I ve been off work sick with the pain which I ve never done before, I don’t like taking time off work.
I don’t have an motivation at all, I am ment to be wrapping presents and I just can’t bring my self to do it.
I went to the doctors yesterday but there is never a positive response, due to my trapped wind I have been straining so bad that I feel I have a goal ball lump in my back passage. GP says nothing feels untoward in my rectum.
I think this is a good platform to let off steam as everyone understands what you going through and I hope you get the support.
I just wish we could eat, drink and poo like everyone else.
Where is your pain ? And where is it more ?
Em x
Thank you for your reply I’m 66 and so glad my children are grown so I take my hat of to you for coping with a young family . But it’s hard I’ve done everything and to be honest I’m the same strain so hard I thought my bowel was coming out .doctor says inflamed piles . Any I’ve been referred to gastro but that was in June . And was told im not a priority as nothing sinister there . But the nothing sinister is causing me pain and . Fed up of it all . Like you I’ve been sitting here 2days trying to write Christmas cards but only done 3 . So feel free to vent as I want to stand at the back door and scream . But can’t frighten the neighbours . 💕stay strong as best you can Jay 😢
You have my support and sympathy. I have young kids and run a business and hate taking time off, so I can relate - also my partner doesn’t really understand. Not that I blame her, she has enough on her plate. It’s tough when you don’t understand what’s causing it, and you just want to feel normal! I’ve struggled to find which foods cause my flare ups, but I’ve found that lack of sleep almost always does.
I'm sorry to hear your suffering so bad this illness really is a living nightmare sometimes 😔
It is every as my life is on hold all the time . But sometimes it just get to much fo4 anyone to bare . . But people understand on here when it just gets to much . .I hope you are well .
I’m so sorry to read your posts. I have had severe debilitating IBS predominately pain related since 2006. For years it completely ruined my life I tried every diet, fodmap, diaries, medications & nothing helped.I don’t know if this will be of any help to you as you’re deaf but I used self hypnosis, admittedly some was on a CD which wouldn’t be much use. It may be useful to look on YouTube & see if there’s videos with subtitles you can follow?
Then try the self hypnosis techniques or maybe see if there’s anyone in your area that you could see. Gut/brain is well documented so there should be something you can read.
It really helped me so worth a try. I do hope you can find something to help you, often a good cry helps! Sending a big virtual hug xx
Many of us here can relate to your pain Jay and if you’ve suffered for a day, a week or years it gets you down. My own story is very similar to yours, I am 62 suffered for years, I have abdominal adhesions/scaring after a bad car accident and I’m partially deaf even with hearing aids which add to the frustration. Finding that “trigger” is illusive and it may be a combination of things. My last allergy/patch test (and I have had many over the years) showed a sensitivity to Cinnamon. I’ve known for years there was a spice I reacted to but never knew which one. Now I do and that is helping me along with reduced lactose but why has it never shown up before. Please keep trying to find out what is going into your body that is causing your pain to worsen. I have found that not eating until lunch time helps me although I do drink room temperature water or home made bone broth (which is technically eating). The bone broth has helped immensely but is time consuming to make. I use a pressure cooker to speed things up a little, organic chicken and a dash of active apple cider vinegar which helps release collagen from the chicken which helps heal the gut. When my condition is at it’s worse bone broth may be all I have to eat until it settles down. As others have said stress and other factors are also probably making it all worse. Be kind to yourself. Jane
Thank you for your reply it’s had going I’m usually constipated but had a upset tummy and . I just tired I didn’t eat anything apart from clear chicken soup and yougurts was afraid to eat . But ive only cook from home small portions and drink plenty . But had tests for dairy and gluten but came back clear . Peanuts and raisins onions garlic leeks and broccoli I can’t eat so carrots and turnip I can eat
I’ve never tried apple cider vinegar . I do take yacult . And yougurts sometimes I do eat health but . Last bloods showed I had low salts and kidney. Function is low .but again waiting to hear from gastro . Being deaf does get to you when doctor is explaining something and your partner had to tell you . But i trying my best to stay positive . But sometimes it’s hard xx
I understand exactly how you feel and how desperate you are to sort this out…I had the same for 24 years and 6 weeks ago, after extensive research, started taking 3.6g of Sodium Butyrate every day, 2 tablets with each meal and I am completely back to normal, it’s like a miracle. Perhaps you could try this?
Tell us more, where do you get this from, how much is it etc!!!
Hello! So pleased you’re interested, it’s completely changed my life! I get mine from Body Bio so you can check out their website as prices vary on size of tub you buy. I cannot recommend it enough! If you search Sodium Butyrate on line you’ll find lots of info about it. I recently had a consultation with my gastroenterologist and he was impressed and all for me taking it, there have been several studies in USA done with excellent results for IBD’s. People with IBS could benefit greatly too and it also can help with weight loss, diabetes and prevent colon cancer as it can kill pre cancer cells. Sodium Butyrate is the chosen food of the cells that line the colon and can assist mucosal healing. Be warned tho….cut right back on sugar 😩 but if you are as ill as I was, I’m very happy to have done this. I still have a couple of chocs a day! Hope this helps you.
Thanks for this but why do you have to cut back on sugar?
You’re welcome, I have had such outstanding results I just want the whole world to know about it! I don’t have any scientific back up but I just remember reading that sugar can inhibit sodium butyrate performance so I suggest like I did, trying a little sugar and seeing how you get on as everyone’s different with their tolerances but I found in the early days that eating 100% cocoa dipped in maple syrup was an awesome sugar hit replacement. For me I was desperate and so cutting out almost all sugar, although tough at first, made sense as it is a major cause of gut issues. I had done LO Fodmap which was quite helpful but it always had hit and miss results which was frustrating so it’s incredible now to have found a solution. I hope it works for you if you do decide to go down this path. I’d love to hear you get on x
Will do, and thanks.
Read with interest obviously so googled sodium butyrate and sent for said tablets I will give them a try and I have found that Regucol has helped me immensely it as lessened the pain but still having IBS D but it as calmed down a lot as I was out of control, hopefully we will all find a way out of this nightmare life that we seemed to have entered thank you everyone on here for sharing your life stories x
Hope they work for you, stick with it as it can take a couple of weeks to kick in, also build up the dosage gradually, I started with 2 tablets a day morning and night and built up to 6 from there. I’m keeping my fingers crossed for you x
Hi Christine, can you let me (us) know how you get on with these please.
Certainly will fingers crossed that they will work they had a good write up so I will give it a go maybe a miracle is on its way, well it is Christmas the season of miracles 🙏🎄👏 x
Okay thanks, but I won't hold my breath! 😊
I'm so sorry you're having such an awful time. I know so well that feeling that you can't go on. I lost count of the times that I lay awake thinking that all I needed to do was make it to my daughter's 18th birthday. I've never actually thought too hard about what I planned after that but I suspect it wasn't good.
I know how hard it is to believe but it can and will get better. You just need to hold out to see your specialist. You should also be asking to see a dietician. I know you say you've tried the fodmap etc but expert help can make a big difference.
Finally, moan away. We're happy to listen x
Hi I’ve tried dietician but not since lockdown . Hopefully I will hear from gastro but to be honest this virus and lockdowns have caused havoc with nhs . I even went private and was told the same . If I have a op then scar tissue would come back . So don’t no what else to do . Just will try my best . 😊
I am also in my sixties also and have also used hot water bottles stuffed down my trousers too!! It is a vicious cycle as everyone when in a 'flare' of IBS gets so down it causes anxiety - in turn that makes everything worse (well, for most it seems).... As someone who has had to endure over 20 years of IBS (mainly D) and at times was at my wits end not knowing what to do or which way to turn, I realised that trying to distract myself did help. I tried listening to audio books (comedy ones) more recently as these were light hearted and found it did put a smile on my face.... a temporary measure I know but sometimes we just need some relief in whatever form that maybe and for me this did help. Being referred in these times means a long wait; a gastro person I saw about 9 years ago more or less told me that asides reducing stress (easier said than done) it will be a condition that has 'its moments.'
Perhaps try some of the things being suggested; we all know how awful it is and I do hope that you get some relief soon...
I tried a dietian but then lockdown came and had to do video chats. But being deaf need someone with me . I don’t sign just lip read . Any way mine is more costipation and like you was told because I’ve got scar tissue and adhesion they nothing much they can do . So vicious circle . Last time I was in hospital for 8 days the doctor was only concerned about my blood sodium as it was low . I asked to see a gastro specialist and have a mri . But was told I had to go through my doctor so came out no further forward . But sometime you can’t help but moan . I lost 2 and a1/2 stone in 6months but nothing found but scar tissue and narrowing in my bowel . So to be honest I just give up . Will just try and stay positive . I hope something works for you 😊
That is a lot of weight loss in just 6 months. It is really hard to stay positive but just doing something (however small) that gives you some pleasure is the way forward I think. Meds work for some people and lessening pain is the one thing all of us want as we cope better without being constantly being in pain. Your GP could help you on the pain front if you feel you need something stronger to get through the day...
Good luck with it all and maybe in your case you can watch some light hearted films/videos that do have subtitles to pass the time and stop you thinking about the pain etc..
Seeing my go after Christmas to talk about my health . And pain relief but they want bloods and urine to test before . . If I keep moving and having baths it helps . Just tired of it all really ,I do watch lots of stuff with subtitles and do a lot of reading . But every now and then I just want to scream .😁
I'm so sorry you are going through this. My heart goes out to you. I suffer as well for the last 1 and half year since getting food poisoning. I don't k ow you. But I do care and giving you an e-hug in my spirit and pray that tomorrow will be a better day😘
Thank you it’s hard but we have to stay strong and maybe one day it will just disappear . Thank you for the hug . 💕
Oh I'm so sorry that you're really suffering, I know how you feel, it's awful, and I feel so guilty complaining to my family all the time. Hypnotherapy can really help with IBS, it was one of the best things that I tried, I can really recommend it. I hope you feel better soon.
My husband suggested hypnotherapy . So will look into it after Christmas as everything is on holiday . I’m just tired all the time of pain and meds and everthing . But need to keep going . Hope you are well and have a nice Christmas 😊
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