I thought this would be a good place to have a rant about my IBS. I am completely fed up of this horrendous condition completely taking control over my life. I have not slept in days due to constant nausea and pain and not being able to get in any sort of comfortable position so I can sleep. I find lack of sleep makes my symptoms much worse but I canāt sleep due to the debilitating symptoms. It becomes a vicious cycle which I canāt seem to break.
I am concerned because I start a new job in September (I had to leave my previous job as I had a headteacher who couldnāt understand IBS and why I had to have so much time off for ātummy acheā she made my life hell and forced me out of the job I love) I am now grateful I have a new job and a fresh start to look forward to but I am concerned I am not going to be able to start until I get my symptoms under control.
I am currently being prescribed Ondansetron for the nausea but I feel like itās not having much of an effect. I am also taking over the counter Codine which will not be prescribed to me by my GP as itāll make my constipation worse but I will take that over the pain which is unbearable. It I am also taking 40mg of Nortriptyline every night and 40-50ml of Sodium Picosulfate every night alongside the highest dose of Buscapan you can take. I am constantly batting with my doctors as they are reluctant to prescribe all this medication and do not take my condition seriously. This is just adding to my symptoms and making my anxiety worse. I am also trying the Fodmap diet with little improvement.
I feel like I am jealous of people who do not have this (or any other chronic condition) and can go about their daily life and get daily tasks done with ease. The most frustrating thing is I can have a day every now and again when I feel ok and I feel like I have a new lease of life but then Iām back to normal the day after š„ when Iāve not changed anything. Itās so frustrating. I canāt go out and do normal things and if I do Iām struggling again with pain and nausea and unable to sleep.
I feel like people do not understand this condition and also Professionals as people who suffer with IBS are not entitled to get any financial support such as PIP which is so frustrating.
Sorry for the long post but I feel that this was the best place to get it out of my system to people who understand what we are having to live with xxx
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Floss-12
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I fully understand. When this "something" as it was then started in 2018 I went literally from feeling fine and my normal self one day to ill the next and thought it had to be a virus of some kind. 3 weeks later I went to the doctor who ran blood tests & and examination and found nothing wrong. One week after that my gut was upset for 9 days.
I still didn't know what it was.
Suddenly I would have some hours, which led to a whole day sometimes, and then 2 days etc, when I felt perfectly my normal self again! That went on for 2 years, and at times I got to the point when I would have a week or so of feeling normal before the symptoms came back.
My symptoms were: nausea, a strange psychological thing where I felt a sense of ominous doom (for want of better words!), shakiness like deep utter exhaustion, sleep disturbance, tiredness, heart palpitations, strange appetite, from loss of to huge ravenous appetite with cravings for fats and anything salty, weakness in muscles, and odd tics or twitches and a droopy right eyelid.
Then in 2020 the gut thing really set in and the other things took a back seat, and that year I was diagnosed with IBS D.
For the first 2 years I felt so weird and ill I literally thought I had a terminal illness and was even sent for a head CT scan (negative) and further blood tests which showed nothing.
Then when the IBS set in more clearly the other symptoms subsided. I think it probably was IBS all along but so strange as my gut and bowel movements seemed normal until 2020.
I felt so ill with it all, and definitely that no one understood. People said I looked well and that was the weirdest thing as I felt so ill I even wrote my Will. I had been super fit and well just before it all.
I feel I can manage it better now and don't feel as bad generally, just got a gut like a rebellious teenager inside my body! lol I have some extended times of feeling relatively ok. But do still get flare ups.
Thank you so much. I just want to get to the point where I can manage it a lot better and get back to some sort of normality.
Yes, it does make you feel that itās something more serious when youāre constantly ill all the time. I also get some of the strange symptoms similar to you like the feeling of ominous doom and you think youāre going mad! Although, having anxiety on top of the symptoms doesnāt help at all x
Yes Iāve also had some of the strange symptoms you mentioned, like feeling of doom and erratic feelings of hunger an then not feeling hungry at all! I think itās a lot to do with the vagus nerve and this can also make you feel nauseous..
I really feel your pain & frustration. I am relatively new to this condition. I have not been officially diagnosed with IBS but have diverticulosis, found following colonoscopy. I have days when I feel I can conquer the world & then days like you when I feel I have a terminal illness with symptoms just as you describe, usually on days when my bowels are in a flare up. There seems no rhyme or reason on why this happens. I just worry about any plans I have made & whether I will be ok on that day š«£. I am fortunate that I am now retired & this wasnāt happening when I was working .
I do hope your new job goes well & you have a more understanding boss this time. Obviously stress & anxiety doesnāt help. I do try meditation & relaxation techniques, but when Iām in a flare up I canāt even concentrate on that. Itās a such a debilitating condition & as you say you look well on the outside.
Thank you so much. I donāt know Iām going to feel from one day to the next so itās hard to make plans to do anything. I do meditation and yoga and find it does ease some of the symptoms but I agree, I canāt concentrate on anything when Iām having a bad flare up x
I think Diverticular, is a bit more serious than IBS and when you have a flare up itās the pockets are infected,which then turns to Diverticulitis. And I couldnāt agree more itās painful. Itās also a problem trying to regulate your bowels properly. Iāve lived with IBS for 10-12yrs and still havenāt got a grip on it,Iāve only recently after a CT scan been diagnosed with Diverticulitis.
Thatās what I keep getting told but I only take it when Iām at breaking point where the pain is so unbearable I canāt stand up. I would rather not be taking it though but I find other painkillers like paracetamol do nothing for me.
Since Iāve recently been diagnosed with Diverticlar,and recently had Diverticulitis,apart from antibiotics,I believe being constipated is a problem,Iām still learning about it,because I can then help myself. So if you have any advice it would be welcome.
I have had this bloody Diverticular Disease and IBS 4 the last 3/4 years had 2 colonoscopies 2021 then another colon scan this year after 2 colonoscopies and 6/7 polyps removed thought I was going to be ok the Hospital just gave me a low FODMAP leaflet shoved out the door and more or to just get on with it!!!! I am still taking cocodamol mebervine albervine buscapans colomint every day and anything to make it go away but some days it feels like being killed from the inside out or tortured bloated and so scared of doing anything in my pants (poop) and that's putting it mildly and constipation I would rather have that than it 2 go the other way I hardly go out missed my own Mum's Funeral last month as I am scared of pooping myself and the pain I feel as if I am a hostage/prisoner 2 the house/toilet every moment of the day now it is 365 days a tear and even going Doctor's feels like mission impossible fed up with it all now
Wow thereās a saying for what we all feel,walk a mile in my shoes.
I seen a cancer specialist about 4months ago,he wrote out a blood test form,ask to examine me,told me I needed a colonoscopy,which I refused with no bedside manner whatsoever he ripped up the blood test shoved a paper on the fodmap diet in my hand opened the door and said have a nice life. In other words do as I say Iām the expert. He wouldnāt discus it with me at all.
Iām sorry to hear about your experience..I have shared similar experiences unfortunately. The most recent was from a consultant Gastroenterologist when I was hospitalised due to severe constipation and an infection in my stomach..itās a long story but she basically told me it was just a virus and Iād get over it in a couple of weeks and Iām not going to get my bowels moving just lying here.
She discharged me without being treated (even though I hadnāt passed a bowel movement in over 14 days) when I questioned her she said I was being aggressive and said if I came into A&E again I wouldnāt be treated š” unfortunately, this is the type of experience I have quite a lot of the time and Iāve to learn to not react to it (which is difficult) so I completely understand your situation and yes I wish that some people could just spend a day in our shoes and they might have a bit more sympathy.
Iāve had one or two bad experiences,and I just think if they donāt like the job why do it. If your in any CARE system I think the answer is in the name CARE,that goes for Nurses Consultants,GP,or whatever your dealing with sick people,so wish they had just a bit of empathy.
I also donāt think your there because your worried,frightened Ect,so a bit of empathy goes a long way.
I feel for you. I've been living with the same as you describe for fifteen years, Diverticular disease and IBS. It's wrecked my life. Worst part is the uncontrollable diarrhea which hits at any moment. Hours in the loo. Can't plan, and like you say even making it to the doctors is a challenge. I've been caught out with sudden diarrhea when out a couple of times recently, a nightmare and I feel so ill and so much pain with it as well. On good days I feel I can do anything and then it hits. I feel less alone when I read experiences of others on this site as no one in my circle ever mentions it. Doctor/hospital just leave you to get on with it. I take prochlorperazine for the nausea which helps a bit.
Good to have a rant sometimes. It is extremely frustrating. Have you tried any probiotics? IBS can be due to a gut bacterial imbalance. Alflorex worked best for me and it has been scientifically studied for IBS.
I can only speak personally as everyone seems to suffer differently with IBS. I found it to be an extremely long process to try and find things that worked and so many that didn't. Mine is by no means perfect and I suppose you get to the point where feeling like your stomach is 80-90% is acceptable. I have found the pro biotic Alflorex to be very good. It takes a while and you need to persevere for a month or 2 but I couldn't be without it now.
If like me you suffer with constipation I found Fybogel to be really at increasing that fibre intake and settling my stomach. I've also got mebeverine from the doctor but try to only take that when I know I may be have a couple of drinks or on holiday.
Other things to consider is excercise (it really helps with stress levels as well) and meditation .... I try and excercise everyday even if it's just a walk .... get those 10k steps in and that will do you the world of good.
I also use a CBD oil which has really helped with the sleep .... Supreme CBD are your go to for this.
With perseverance you can get on top of it .... Just takes time. Good luck with the new job.
Thanks so much. I am going to try Alflorex as Iāve heard good things about it. I do meditation and yoga which I do find eases some of the symptoms and I also used to love walking but I find it hard to get out these days as I find that when I get myself into a comfortable position I donāt want to move because the pain and nausea will just start again.
Itās hard because I know not moving around is not helping the constipation either. Itās so difficult to find the right balance.
Seriously try Fybogel for the constipation it worked wonders for me.... Drink plenty of water as well. I get the reluctance to move but with time walking will make a huge difference as well.... Good luck
Thanks for your help. Yes, Iāve asked my GP but I find they are not very understanding and itās so difficult to even get an appointment. I have tried acupuncture in the past and whereas itās definitely not a cure it did ease some of the symptoms. Good luck!
IBS can be so debilitating and the medical world doesn't have a magic wand for it. Unfortunately we all have to endure the trials and errors of what works for us.
Your anger will not help your symptoms, it will fire your guts up. So as hard as it is, try to draw a line on what is past and make a plan to go forward.
The mixture of medications are not helping you, they all add to Constipation which will make transit so much more painful and slower š
I totally understand that you take Codeine to ease the pain but it is really bad for constipation, all pain medication will add to constipation and all medication will have side effects of sorts.
My suggestion would be to talk to a professional at the IBS network or your GP to review, and try to make a new workable plan.
I contracted IBS C after an Hysterectomy 10 years ago. It took me a long time to get in control and I was coping well, following Low Fodmap Healthy Nutrition, and minimising medication, only taking it when I had a flare up, but learning my cycle of waste transit to know when to take Laxido to facilitate more comfortable BM and expediate backed up transit.
I had major surgery at the end of last year which has triggered it all off again as nerves and the immune system have memory, so will replay the Trauma of the body.
At least I have the experience of what and why to work on getting it under control again.
Sadly as many of us sufferers here know, oftentimes medical professionals are at a loss to have any answers. It also comes down to Ā£Ā£Ā£Ā£ on the NHS, so tests/scans Consultant appointments are limited.
I have no doubt that your work environment played a huge part on firing up your body. Working with a toxic culture even in one person is a huge trigger.
So, you have a new work environment and options to calm your condition and get it under control. Nutrition, simplified medication so your body is not beng bombarded from all sides, Positive Mindset, Breathing Exercises, Walking, Meditation/Gong Sound Bath/ Yoga/Pilates - FINDING THINGS THAT WORK FOR YOU plus interacting not isolating yourself.
Keep talking on here for support, we are your Tribe!
It will not happen overnight but IT WILL HAPPEN...
Daily mantras by Mahakatha- You Can sign up to receive these emails daily, I find listening to them helps create a calm atomosphere Floss -12 š
Finding Your Center in Chaos
When life feels chaotic and uncertain, inner peace can seem out of reach. Here are some ways to reconnect with your calm center during turbulent times:
Take refuge in nature. A walk among trees and fresh air stills the mind. Breathe deeply and observe the steadfast beauty around you.
Release emotions creatively. Paint, draw, dance, or sing out your feelings. Creating channels difficult energies into art.
Do a grounding meditation. Sit comfortably with your eyes closed. Visualize roots extending from you into the earth. Feel supported and anchored.
Chant the mantra "Om Aapadaamapa" meaning "remove my obstacles". Let the vibration soothe your spirit. Return again and again to the sound.
Reach out to loved ones. Sharing your struggles with trusted ears lightens the burden. Allow others to comfort you.
Repeat positive affirmations. Remind yourself "This too shall pass" and "I have the strength to overcome." Speak truths that counter the chaos.
As one teacher shared:
"In the depths of the storm, the lotus flower blooms."
Have faith your inner light still shines, even in darkness.
You will make it through the storm.
Wishing you peace and perseverance.
Here is a quick 3-point summary on finding your center in chaos:
What to do:
Take refuge in nature, creative expression, and grounding rituals
Chant the mantra "Om Aapadaamapa" to soothe your spirit
Reach out to loved ones and affirm your inner strengths
What to hear: Breathe deeply and listen to the steadfast beauty of nature
What to say: "My inner light shines brightly, even in the darkness. I have the strength to overcome."
If only.....there was a cure for IBS, there was a miracle medication for all, a magic wand to make it go away......
Sadly we know this is a condition we can only learn to manage and educate ourselves about anything and everything that could go in our tool kit to brighten each day.
As I said, it's findg things that work for you, and like anything in life you have to put in the work to reap the rewards. So it means incorporating various elements of the Self Help List into daily Life REGULARLY, you have to make them a habit like brushing your teeth every day.
I still suffer debilitating attacks, but I work hard to get through them, rebalance and go forward again. It's a continuous treadmill but I use my own specific tool kit to control the pace and minimise the frequency.
I do hope you are able to manage whatever your condition is, and believe in yourself that you are in control.
Hi there, I'm new around here so forgive my post if it's not the "right way to post" etc.
I was diagnosed with IBS when I was 20 (I'm 30 now) and it was hell on earth trying to get the diagnosis in the first place and also trying everything under the sun to help alleviate symptoms as I was reminded time and time again by GPs "well there's no cure, so yeah".
All of those meds I was on really messed up my stomach worse and I ended up coming off of all of them when I was 28. The ONE thing that has helped above all else, was dietary changes. I introduced more fibre in my diet (start out slow or it'll actually make the pains and bloating worse) and fermented foods.
Starting out I could only stomach a tablespoon of chia seeds a day in some kefir (I'm lactose intolerant too but I can eat kefir and hard cheese like parmesan in small amounts). Now I'm at the point where I have a routine down- this may not work for everyone but it's what's helped me (and yes I still have rough days when stress gets to me and fibromyalgia flares up which then wrecks everything I have in place for my IBS but I digress).
1. I drink chia seeds in kefir + drizzle of honey with cashew milk - I just blend cashews in water. (I order cashews and chia seeds in bulk on amazon and kefir & honey from the supermarket.
2. I eat one large meal a day- I use mindful chef so I don't have waste in my fridge and it takes the stress out (Link: mindfulchef.com)
4. I take a multivitamin- I have tried many and the best for what I need is covered by a company called "get nourished" (Link: get-nourished.com) I took blood tests (from my GP) to see what I was deficient in and curated my nourished stack to those ingredients of what I needed. For me vitamin D, B vitamins and Omega 3 are what I tend to run low on and I noticed in my IBS and fibromyalgia symptoms when I am low in those.
Sticking to this has helped me so much, no-one has to sign up to these websites by the way I'm just sharing the links incase you want to check them out.
I've tried many things like Keto, vegetarian etc. Now the meals I have throughout the week a different type of protein for each day (turkey,beef,chicken,pork,duck etc), and I always try to have at the very least, one fish meal per week. A cheaper way of getting fish into your diet is buying things like tinned mackerel- it keeps really well and is a great omega booster.
This may all sound excessive but I actually pool all of my "spending money" into my nutrition. I made a promise to myself that food was something I would not cut corners on and it has made a massive difference to the quality of my life. I can actually sleep now and have the energy to exercise. Stress is the main thing I haven't been able to complete remove but I think that's the case for most of us. Just have to control what you can and do your best <3
Have you actually seen a Consultant Gastroenterologist to help manage your IBS, or is it just through the GP? I agree with Lifebalance that your mix of medication is probably not helping as Codeine and Buscopan can cause constipation and Codeine is never a good medication to take regularly as it can cause addiction. You say that you take Sodium picosulfate and this can cause cramps in itself. I feel you do need to get some professional advice in the form of a Gastroenterologist if you have not seen one, to make sure your medications are not working against each other and could even be causing your nausea which is a side effect of some of the medications you are taking. A Pharmacist ought to be able to give some advice regarding this as well.
I am under the care of a Gastroenterologist and had a consultation with them recently. He said I was in the āPremier League of IBSā I would rather be in league 3! š they have been very supportive which is more than I can say for my GP. Thanks for your help!
I'm sorry to hear about your struggle with this awful condition. I know your feelings on codeine despite it causing constipation, but did you realise that Buscopan also causes constipation? One tablet and my digestive system dies, I can't take the things.
3 x tbsp Chia seeds and 2 x tbsp flaxseeds soaked in hot water (for an hour) in a mug, twice a day, plus 2 x 1000mg doses of magnesium citrate capsules twice per day; that's my regimen for dealing this condition - plus as much fruit (apples, tomatoes, peppers) and veg (rocket, onions) as I can handle.
Even so, I still end up constipated, due to being on Duloxetine. Its a complete nightmare
I hope you find some relief soon xx
P. s. Nortriptyline also made my constipation worse, but not as badly as Amitriptyline did.
Thank you for your help. I am aware that Buscapan can cause constipation aswel but it does ease the stomach cramps to some degree and Iām taking it alongside laxatives to counter balance it. Iāve also started taking Chia seeds as someone else suggested it so Iāll see how that goes. Youāre right itās a complete nightmare I feel like weāre in a no win situation. Iāve found that Fruit and veg (apart from carrots) makes my condition much worse so Iāve cut that out completely which I donāt like as I really miss it. Itās strange how this condition varies so much from person to person. Hope you find some relief too x
Hi, I have IBS too and itās awful. This year in particular the bloating has been dreadful. To the point of now having to size up in Jeans. Does anyone take anything to help with bloatingā¦.my stomach goes rock hard. I think I could be gluten intolerant. Have a nice day to all.
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