I dont know what to do with myself... this is just a bit of a rant as i don't know where else to put this. i feel like not many people understand the intensity of ibs (unless you have it).
I bounce from doctor to doctor to try and get help with my iBS and they never seem to grasp on my symptoms, it makes me feel crazy!
i can't eat without feeling nauseous, I can't sleep because of how bloated and sick I get at night, i can't exercise which is suggested for bloating as I just bloat and feel sick... it feels like a never-ending cycle.
I'm feeling so low and depressed now it's all getting too much and I feel so lost and suicidal. I'm in constant pain, im a uni student I struggle with my work, I'm dreading what will happen when i actually need to get a job. I don't know where to turn, I don't know who to talk to.. it feels like i live in a living hell!!!!!!!
Unfortunately, none of my family seem to get it... (i think because they lack understanding due to not experiencing it). i feel so alone its such a horrible condition it really is...
i dont know what im asking for here, but just wondering how people deal with severe ibs. am i the only one being unrecognised?😭
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Bamboopanda
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Well, I'm really glad that you checked in here! Because every single one of us here understands !
There is so much info and support going back and forth on this forum, and I'm sure you will find lots that will help you.
Many GPs haven't really got a clue with IBS. A decent GP will refer you to a gastrointestinal specialist but that can be a bit of a wait of course.
But you do need to get other stuff ruled out before anyone can say it's IBS. There are many other things it could be, many of them curable so you need to know.
Then unfortunately if the diagnosis IS IBS, some doctors are a bit stumped, and it's a bit of an old story I keep hearing that people's doctors can sometimes be a bit lazy with IBS.
You're right, it is no fun whatsoever and many people don't understand how it affects quality of life very very badly.
A functional Medicine doctor would be your best bet. Where to find one? I don't know, but you could research that.
There are medications that can help but I'm no expert as I only take herbs and homeopathy. But there will be umpteen posts on here about helpful meds.
Then there's the Low FODMAP diet which helps some people.
And some do get great improvement with their IBS management so don't give up hope. Wishing you better days to come.
they pretty much did a ton of tests and concluded it was ibs and now just left it with me! Imma have to just research and research… just sometimes feeling like i get no where but thanks so much for the support!! Just not a fan of taking medication after medication i prefer more natural remedies but ill have a look and hopefully one day there will be something
That's pretty typical. A nutritionist might be of some help.
And you've always got this group. I would suggest just searching around the posts here and trying to come up with some things to try on your own. That can be medications, diets, exercise, therapy, meditation ... It's whatever works for you, as IBS - and any treatment for it - is very individualized.
I see you've been treated for depression and anxiety. How is all that going? There is a definite connection (vicious circle, I might say) between those two and IBS.
I'm much older than you, but got my first bout of IBS in much the same circumstances. If nothing else, I can tell you that it does get better.
Yes, doctors are inclined to "leave it with us"when we are diagnosed with IBS. My doctor gave me a very good booklet about the Low Fodmap diet and kind of "left that with me" too. That was in lockdown when it was hard enough to actually see a doctor (I was blessed bt the most incredible luck that day I went for a face-to-face consultation to discuss my 2 stool and blood test results!) I thank my doctor as he was obviously trying to do his best for patients. But there was no mention of a dietician. So I did the hard slog myself.
I have not yet found an absolute cure, no. But I take herbal remedies to help manage an IBS flare up or a mini flare up bad day. What helps me are Meadowsweet, Ginger, peppermint (sometimes)Nettle (which I eat as a vegetable. So kind to my tummy!) and Tormentil (which can help quite a lot with D flares)
I am also working with a homeopathic practitioner and looking back, I can see I am MUCH better than I was when I started. Some remedies can work literally like magic in some very bad painful gut cramps with trapped wind(such as Carbo. Veg.) but not a long lasting kind of cure effect unfortunately. But handy to have when needed.
I was so interested when you said you'd used nettle as a vegetable, I've never tried it. I have lots growing at the bottom of my garden. I imagine they are full of iron so you wouldn't need too much of it. Normally, I can't tolerate real green leafy vegetables like Kale, Cabbage, Broccoli etc.
I find steamed nettle tops to be quite gentle on my gut. I can't eat cabbage, but I can eat kale and broccoli but small amounts. If you fancy trying them then I would say start with a tiny amount. They shrink down (as spinach does) when they are cooked, so you could start with -say -a teacupful, and that should cook down to about a dessertspoonful. Wash them well of course first to make sure there's no tiny insects on them etc. I sprinkle a bit of salt on them while cooking.
Pre-IBS I used to make nettle and potato soup with fried onions and lovely organic stock cubes, black pepper. It is so tasty. I will probably never again be able to eat that for the rest of my life.
Thanks very much, I will give it a try. The soup also sounds nice, I love black pepper and onions, but my guts say different 😞 so that's also a no no for me.
I am going through exactly the sane thing, even as I write this I'm laud on my left side in agony after yet another sleepless night.I've been made to feel crazy too abd have no answers and I'm no further forwatd. Anything I eat seems to set it off and even some drinks do too.
It's horrible and frustrating, not being avle to do anything or go anywhere because of it.
Spent Sunday night in hospital only to be sent home yet again with no answers. Exhaustion ruins my days having no energy to go anywhere and here I am adrer another terrible sleepless night just trying to get some sleep at 7.30am.
Have you had any luck eith meds? I've been a little hit xnd miss some seem to work buy cause other problems.
I can really relate and sympathise, what you're going through is horrible yet help seems to come from nowhere, even friends and family seem to become numb to it.
I hope you get some answers soon, as do I.
Best people like us can do I'm finding is to try and work through it our own way, and there's no easy way.
Hi John-so sorry you are having such a daily struggle with this My ibs is more anxiety driven than food, although a number of foods I must avoid or only eat a small amount to avoid a bad reaction- i am on generic Zoloft 50 mg a day and .could feel a difference in a few weeks it takes about 6-8 weeks to get the full benefit but it really is working for me. I could not sleep at night and was totally exhausted and miserable until I got to my internist this past March and he started me on this med- I know this does not work for everyone but has allowed me to have a normal life again Good luck to you in finding some relief-oh BTW-I was totally healthy with no ibs or anxiety issues until I got COVID last October-that's when the trouble started
I am sorry you are feeling so terrible. IBS can be so very nasty. I hope you did manage to get a little bit of sleep earlier? I really feel for what you must be going through and hope the pain eases up. I guess you have tried everything you can think of to ease it?
My IBS started in 2017, unfortunately for me I also had piles, when I went to my doctor, I was more concentrated on my piles symptoms because I didn't know what IBS was then. All treatment I was given for the pile proved useless because the main trigger was the IBS, it took another 2 years to be diagnosed with IBS. During that space, I had GERD due to the massive antibiotics I was treated with. I was heavily depressed at a point and was constantly having suicidal thoughts. This forum really helped me to get back on my feet, I was exposed to all sort of information about the monster IBS. I strongly believe who isn't affected by IBS can never understand how terrible it is. Well, today, I've been able to hack my IBS I now fully know what gives me a flare up, the food that doesn't go well with me, the lifestyles I had before that doesn't go well with the idiot IBS ( forgive my language 😃) etcHerbs has been working wonders for me, I take Tumeric coupled with cloves, ginger and caraway tea every morning, it calms my guts. Pls brace up yourself, don't give IBS a f**k because giving it a fu**k only strengthens it, you need to do some homework yourself, cut out some food like diary, beans and other difficult to digest food, one thing with food tolerance with IBS is that it's unique to each individuals, what might go well with you might not go well with me. Wishing you a quick recovery.
Sorry to hear this. I've been through so many tests and tried lots of different meds.I had a recent colonoscopy and endoscopy. Dr saw inflammation and stomach ulcers and thought it was either Diverticulitis or IBD....ulcerative colitis. Took 26 biopsies. Received a diagnosis of Heliocobacter Plyori from the biopsies. Like you I was had chronic bloating,fatigue, blood in stools and suppressed appetite for many years. I hope you get some relief and the support you need ASAP.
I agree with Winfong and Luisa22, and my advice would be this, however bad you're feeling, you really must try to calm your anxiety because this is most definitely making your problem worse and probably makes up a good percentage of it. The brain and gut are linked and the more you work yourself up, the worse your IBS is going to be. You feel that you have no control over it, but when you really think about it, you are the only one in control. I don't bother with doctors now and haven't for years, it's best to deal with it yourself unless you think there's something else that it could be. I won't take prescription medications and I only use natural / herbal remedies.
There's no short answer to this lot as everyone on here knows, it's like Winfong says, whatever suits you and it might take some to find out what suits you best. You're young and have plenty of time and things do get better in the sense that you'll learn how to handle it. Try to do something you enjoy , exercise in a way you enjoy and do anything to take your mind off it, get out in the fresh air, eat small meals, don't overload your stomach. It's amazing how many ideas, tips and tricks you can pick up on when reading on here how people deal with it.
There's a lot of older people on here and we're all still alive and kicking 😉
Have you tried Alflorex probiotic, which has been scientifically studied for IBS? Many people's IBS is due to a gut bacterial imbalance. Alflorex has been a game changer for me. I used to be in your shoes - I could barely eat anything without getting symptoms. I now have a much more varied diet and symptoms mostly under control.
Alflorex contains Bifdobacterium which is passed from mother to baby during a natural birth to prime the gut's defences. If you have picked up a bug that is dominating or things are a bit out of balance, it can kick to touch the bad bugs, reduce their numbers and help good bugs to grow. The bad bugs trigger symptoms. Bifdobacterium also helps to break down complex carbohydrates and produces acetate, which acts as feed for your good bugs helping them to flourish.
If that doesn't work or doesn't work enough, ask your GP for a dietitian referral for the FODMAP elimination and reintroduction diet.
Keep trying different things until you find something that suits you. There is hope - you can get better, it just takes a bit of work.
And your experience is similar to mine and probably many many others - suffering and struggling to get any help and advise😳
I’ve not read all the replies but I would suggest that potential ‘Amitriptyline’ or ‘Nortripyline’ might be of use to you in this situation.
From my experience, the medication just changed the cycle and reduced inflammation- all in all it acted to just calm everything down, including my anxiety.
Best of luck, keep the faith - brighter days do come🙏🏻🙏🏻
sorry your going through all this, I have had IBS for over 30 years and find stress is a big trigger, trigger is the word you need to look at, you can get some pills from the chemist called Buscopan they are for IBS and work for me a little. Going back to the word trigger, everyone has different triggers, and they can come and go, when mine gets really bad I go back to basics, I eat only boiled rice with nothing in it, after my IBS calms down I start to add other foods one at a time leaving 3 days in between if I feel ok after three days I add another if I feel unwell I stop the one that I added stay on what I was on before for three days and on it goes. You are the best person to sort your IBS out as you know how you feel, if you have had the tests done and they say it’s IBS then you and you alone can sort it out best for you, you say you don’t want meds? I say why if they give you back your life? One thing I will advise on food and drink is the liquid, I can’t drink alcohol that was the first thing to go back in the day fizzy drinks are a no no as is milk, I drink decaf tea or coffee as caffeinated drinks affect me but here is the big one, I live in Essex and I can’t tolerate the water that come out the tap, yes tap water has lots of chemicals in it to kill the bugs, we have had a special filter put in to take out all chemicals so I can manage on it now, I was living on bottled water for the past ten years, I also found certain bottled waters would affect me, some bottled water is just tap water, you need to look for spring water and try different ones as they are all different depending where they come from and what they have been filtered through like rock sand chalk clay etc as all these will add different minerals and you could find some don’t agree with you. I have just came out of my worst flare up ever it lasted over 18 months with the diarrhoea at least 5 days a week I was living on plain mashed potato and boiled rice for most of it anything else went right through me, I had all the test done, I am off tomorrow to give bloods as I have finally spoken to a gastroenterologist and she had ordered more tests. So calm down look at yourself in the mirror and tell yourself your are going to take control of this and do everything you can to feel better, no alcohol no greasy foods as both are a students main diet lol
FODMAP diet helps for many of us. Plus I listen to some youtube meditation stuff before sleeping, and get out into the trees & garden to destress. Stress can be a major factor and it can be a vicious cycle: IBS = stress = more IBS = more stress etc.
You're certainly not the only one unrecognised. I just got off the phone with my GP and honestly not sure why I bothered.
All I would say is if you're so low that your thoughts are becoming suicidal then you must reach out and get help, from GP, Samaritans, whatever works. Don't let it get to that stage, life is worth living still and you'll get through it.
I've just had a quick look back at your posts and I see you have been diagnosed with SIBO in the past and prescribed strong antibiotics for it. I would suggest you Google Rifaxamin and SIBO. It's an expensive medication and I'm not sure GPs would be willing to try it for you, in the UK. That's is your problem is indeed SIBO related.
My main issue is attacks of diverticulitis for many years and I'm sure my attacks are linked to anxiety and stress. I'm also convinced I have IBS and the last 6 months have been dreadful. My husband and I not only moved house, we moved countries. We left all our possessions and flew to the UK with just a couple of suitcases of clothes and no idea where we were going to live. (Long story that I won't bore you with). We have got a home now, life is calming down and I have noticed a huge difference in my symptoms, thank goodness.
So the first thing I would say is get a handle on your stress and anxiety if you can. I've been considering an app called Nerva which (apparently) has a new method of dealing with anxiety related IBS. As I'm improving, I'm keeping that on the 'back burner' for now, maybe I'll try it in the future.
The other thing,apart from stress reducing that I'm pretty sure has helped is totally overhauling my diet with an amazing group on Facebook called Diverticulitis Rescue. Even if you don't have diverticular disease, I would recommend the Admins suggestions and follow her 4 stages (very slowly) . I'm looking at what I eat in a completely different way now.
Something else to try would be a Google of Healthpath. My 24 year old granddaughter was really struggling with IBS and their suggestions and supplements worked wonders, so that's another suggestion for you but it is expensive, unfortunately. I take Optiback probiotics and grapefruit seed extract. I was on 1 week in every 4 on Rifaxamin in Spain but my UK doctor has taken me off them (I believe they're an expensive medication) . Touch wood, I'm better than I've been for a long time but I have been through this period where I didn't feel life was worth living, so I do understand. I really wish you well, you're young, this is horrible for you but there is a way through it.
Hi I have so much sympathy for you. I am having a severe flare up at the moment with terrible pain when the only thing that eases it is emptying my bowels but the pain makes me sweat and I feel faint. It is getting worse and I don't know how to deal with it!! Nothing seems to help, diets, medication etc. I also feel nauseous. Let me know if you find sth that gives relief. Best of luck!
Dear Bamboo panda,First stop join the IBS network. They have all sorts of resources and videos etc. Those with healthy guts don't ever understand. Just keep trawling this site which is full of caring sufferers. My my positive regards to you .....there is help for all of us. You will find a way. Best advice see your GP for an urgent appointment and don't be fobbed off you need help urgently. Take care and make that phone call
Hi Bamboopanda. I’d recommend a read of Dr William Davis’s book ‘Super Gut’. I think he talks a lot of sense, and has practical suggestions that put you more in control of your gut. I have made his super gut yoghurt with his recommended bacteria, eaten it for the four weeks he suggests, and found it has helped a lot. The yoghurt making is a bit of a learning curve, but well worth it.
I know how you feel, I was very lucky as my GP referred me to a Gastroenterologist after a few months. You need to speak with a doctor, take notes with you of your symptoms and be firm, as many doctors don't seem to understand how overwhelming IBS can be. Ask your doctor to test you for Bile Acid Malabsorption too. I would recommend that you start keeping a diary of everything you eat and drink for about 6 weeks as this will help to pinpoint anything that triggers your symptoms. Try to keep hydrated as the warm weather doesn't help, and maybe try a gentle walk if you're bloated. Unfortunately IBS testing is a process of elimination of other health conditions so it can be frustrating, but you're not alone. Try to avoid artificial sweeteners especially sorbitol, took me a long time to realise that was a trigger! Peppermint oil capsules or tablets can help, or peppermint tea, some people recommend probiotics too. I can't recommend hypnotherapy enough, it really helped with the stress and IBS and there are several apps you can use at home. My family didn't understand how difficult IBS is to live with but after seeing me experiencing a flare up they finally realised the effect that it can have, maybe sit down and talk to them, having family who don't understand just makes you feel worse. I hope you feel better soon.
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but thanks so much for the support!! Just not a fan of taking medication after medication i prefer more natural remedies but ill have a look and hopefully one day there will be something 
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