IBS Network
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I don’t know what to do

I’ve had what the doctors suspect to be either severe IBS or something else like it for eight years. Things are honestly starting to get worse. I’m in agony 24/7 I can’t eat anything (apart from cereal and even then if I have too much I end up with stomach pain) I can no longer go to the toilet without a suppository and even then I have a hard time - mainly because my bowel gives up and I get shooting pains in my stomach when “pushing.” The pains in my bowels now set off my vertigo and I puke in my mouth a hell of a lot. I don’t even wanna wake up in the morning. I’ve tried a lot of IBS tablets and nothing has helped me - makes me think I don’t even have IBS at this point. I’m on painkillers but they’ve stopped working as well as they used to. I honestly don’t know what to do and I’ve been to my GPS many times but they turn me away I’ve tried moving my appointment forward with my new specialist but absolutely no luck. I have nowhere to turn. I don’t want to live like this anymore.

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Oh lilrose my heart thoughts and prayers go out for you that something can be done to help you . I really don't have any advice to give apart from to present yourself at a@e department of local hospital and refuse to move till they investigate what's causing your health to suffer like this . I pray that something can be done that will bring healing for you . God bless. Take care . Please don't give up hope x

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Thank you I appreciate the kind words. I’ve been to the hospital and they literally said there’s nothing they can do I have to see my specialist but I’ve been waiting over THREE MONTHS for an appointment. I’m honestly at my wits end.

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I don't think people, especially doctors how painful and debilitating ibs is . I think it is absolutely shocking you have been reduced to a diet of cereal and the medical proffesion can't do anything. More money needs to be spent on research for IBS .

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I’ve told them many times that all I can eat is cereal and they don’t bat an eye at it! You’re right more money and time does need to be focused on IBS because we’re all left suffering

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Sorry to hear how bad things are for you. It is hard to get help with ibs but your gp shouldn't be turning you away. Have you had tests to rule out others things such as inflammation, coeliac disease etc? Maybe it is worth changing doctors? I'm not a nutritionist, but only being able to eat cereal is possibly part of the problem. You wont be getting all the nutrients you need and this may be contributing to your symptoms. It might be worth trying a very small ammount of something that is low FODMAP - see monashfodmap.com/i-have-ibs... to see if you can vary your diet a bit.

I hope you can get help soon

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Thank you for the reply. I’ve had tests done but that was eight years ago and honestly I’m much worse now. I know cereal isn’t good but it’s the only thing that doesn’t make me throw up and feel in pain so I’m stuck. I have tried the FODMAP but there’s a lot of things my stomach doesn’t tolerate anymore so it’s extremely hard. I can’t switch my doctor as they’re the only ones in my village. I appreciate the help x

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Thats shame about the doctor being ot only local one. I do think you need further tests though - 8 years is a long time and you can't carry on the way you are now. How are you with drinks? I found peppermint tea is soothing, so that could be something to try if you haven't already.

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Thank you for the advice. I actually can’t stomach peppermint tea - any tea for that matter lol

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Try nutritional drinks. Cereal is just not enough. You also may have to travel a little further to get more sophisticated medical care as well as tests.

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Thanks for the reply, I can’t travel as I’m in too much pain I can barely last a ten minute drive. I’m waiting to get an appointment to see a specialist in my area

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My heart goes out to you. You said you’ve been to the hospital ..... therefore I guess they’ve ruled out ‘sinister’ things. Have you had an Endoscopy ? Assuming that rare sinister conditions have been ruled out ...IBS still can turn your life into a hell like you seem to have. As I’ve been so ill for years and felt like you and therefore I did some serious medical research on this.... One thing is for sure : Eating Cereal will make you so much worse ..... it’s the worst thing to do .... I discovered this by coincidence as I constantly started vomiting after eating Cereal. We all have been brain washed by Cereal Companies for decades to believe that this is healthy but the opposite is the case. In your condition you must really go very low on fiber especially in the state you’re in. You may think it helps with constipation but that’s an illusion. It will make you terribly bloated as well and would be the main cause of bloating. To be avoided at any cost are whole grains....The worst Cereal to eat is things like ‘All Bran’. If you’re really feel that you MUST eat any cereal at all then Rice Crispies is the least damaging one (even though not ideal). Are you able to read any books ? I could recommend one or two books which will give an idea why whole grain and indigestible fibres are to be avoided?

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Hi,

Thanks for the reply. To be quite honest my blood results have been all over the place - one thing is for sure that my white blood cell count is low.

I know cereal isn’t the best I really do but it’s the only thing that doesn’t hurt my stomach to the point I’m puking in my mouth. I would love to hear about the books you have - honestly anything will help me at this point

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Forgot to add I’ve also had colonoscopy and endoscopy but that was eight years ago and I’m worse now

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Lilrose92

Oh my, sounds like things are very glum for you. I am so sorry you are suffering.

I started a probiotic 17 days ago, after speaking with the pharmacist I chose “colon guard”. It’s an over the counter, all natural product. Because I refuse to take any drugs I decided to try it on my own. It says “helps diarrhea, gas, bloating and constipation”. I have IBS D and C but usually D. My days were so challenging because I would have urgent episodes of getting to the toilet in time and then the rare occasion of not going for two to three days. The worst is not knowing when it may unexpectedly hit! Wearing depends when going out, not eating before leaving the house, etc....

The pain is tolerable when you know what the reason is and wrap your head around the fact that this is it, this is my one and only life. So, back to my probiotic! I have had ONLY normal Bowel movements for 17 straight days, NORMAL! I swear I forgot what normal meant but I can honestly say no diarrhea, boy even once ( until yesterday). I had a bout yesterday but was actually relieved. Wasn’t bad and wasn’t till evening but I ate ALOT! I will continue for the 45 days worth of pills and hope it’s not a fluke but I am ecstatic that I’ve been given 17 days of normalcy. I will keep you posted and maybe a probiotic could be of benefit to you. The painkillers are known to cause constipation, that may be a place to start? I only take Ibuprofen and only when I really, really need them. I can deal with pain, its part of IBS so I distract myself ( I know, I know, everyone says that) but what can ya do?

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Thank you I really appreciate it. Please keep me updated.

I know the painkillers aren’t good but I’m in agony and when I don’t take them I can’t even get out of bed because the pain is so bad. I’ve tried a lot of IBS tablets and none work sadly so I don’t know what’s going on part of me isn’t even sure I have IBS

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Hi ! may i ask what strains of bacteria does this probiotic include ??

some strains are thought to be better for constipation ..others are more beneficial for Diahrrea ..so in my search for the good probiotic ..i would like to choose the right one that works mainly on the D ..and please keep us updated on how it progresses with you during the next month ..hope it continues to give you the relief and normalcy that will improve the quality of life 💐

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This is called Colon Guard, the pharmacist suggested it over the others. I checked the bottle but it simply says “relieves diarrhea, gas, bloating and constipation”. Due to being all natural this particular probiotic did not list all ingredients. I have had 16 great days, 2 loose stool days, a really bad day and back to two great days so? Not sure I can say that it is helping everything yet as I have always had unpredictable weeks/months? I will stay posted!

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Thank you for your feedback ..as i see it , having at least good days more than bad days is a step forward for an illness that is considered and characterised as "chronic" among medical community and in most ibs websites that i have visited for research ! and relatively to me , to have good days alternating with bad days is much better than suffering in a daily basis with varied symptoms around the clock ..like now for example i'm writing to you with hot water bag on my belly trying to resist the cramps ..got used to it actually ..doing homework with my children in bed " which became our multi task desk 🤗

Anyways ..Thank you for updating your probiotic experience ..i'll also stay in touch👍

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Sorry to hear that you have chronic pain. I am lucky in that aspect, not too much pain, if any. My biggest problem is with the diarrhea. Strange, everyone’s symptoms are so across the board and such a broad range.

I have suffered with anxiety induced diarrhea since I was in my twenties. It was not until last year that I was actually diagnosed with IBS. The worst for me is that I will have two or three great weeks, no D, no pain, normal Bowel movements and then out of the blue I will be sitting there and have an instant spasm that just hits, no warning, nothing. I can’t even stand up to run from my kitchen to my bathroom? It’s as if I have no rectal muscles, it just starts pouring out? This has happened about 7 times in maybe four years but is most distressing as I have no idea when or why it might happen. I carry extra clothes in my car, wipes in a baggie a pad and a depends in my purse at all times and hope for the best? I refuse to give in to this so I go shopping, trips, casino, family events and live with it. I don’t let what other people might think bother me any more, they are most likely fighting their own demons and I am going to enjoy life. Believe me, I have about 6 days a month that I know I’m not going too far from home, no biggie cause the other 24 days I’m making up for it👍

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I think they use IBS as an excuse when they can’t readily find anything they are trained to identify. I know first hand that chronic pain can be manifested phsycologically as well as physically. It’s a hard pill to swallow but needs to be addressed to give you quality of life.

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Sorry for what you are going through but you are not alone in this! Continue to be your own advocate! I was first diagnosed with IBS-D after a colonoscopy four years ago, during which they removed a polyp the size of a golf ball. I also had an endoscopy that year too. Last year I went back in for a followup colonoscopy and luckily they did not find anything but my IBS journey continues. I rarely have constipation so I can't really say what works for that, but I agree with the comments above that cereal is probably not the best option for you. I'm in the US, guessing you're in the UK so healthcare systems are much different. Would it be possible for you to have a colonoscopy? My guess is they will find some cause that explains your symptoms. Perhaps you could try to see an endocrinologist who might be able to rule out any autoimmune disorders. As mentioned above, IBS isn't a real diagnosis. Basically it's doctor speak for "your symptoms could be a lot of things but since we can't figure out the root cause we'll just give it a name and throw pills at you." Have the doctors tried giving you any antispasmodics? I was given Librax and Bentyl in the past, both of which made my IBS worse but I think they are more useful to people with severe constipation. The Librax also had a small amount of benzos in it which are supposed to help with anxiety. I definitely recommend continuing to post in these forums, I have found more useful information from other IBS sufferers than from any doctors or nutritionists I've seen!

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Hi,

Thanks for the reply. I had colonoscopy and endoscopy done eight years ago but I’m honestly worse now so I do feel I sadly need them again - even though I hated colonoscopy and had a traumatic event that has caused me agony in my left side ever since, thanks to the doctor lol. I’m sorry you had to and are going through this.

I know cereal isn’t good but it’s literally the only thing that doesn’t give me stomach ache or bad pains so I’m sticking to that. I’ve tried to include many different things in my diet but the pains were making me miserable.

I have tried many tablets for spasms and IBS and none have given me any relief so at this point I’m not even convinced I have IBS.

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Hi I know how you feel I live Day in day out with the condition I have to use protein shakes to get me through my day I hope to get some shakes from the doctor on Monday or at least some advice as my weight is uncontrollable with this condition it is causing me anxiety Gail

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Hi,

I’m so sorry you’re going through this I hope things get better for you 💖

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Thank you Gail

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Have the York test done it will tell you what is making you like this

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What is the York test?

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It's a blood test its more or less 100% accurate to find out what is causing you to have these problems as I did and also my son it's a online test which you get through the post and is really easy to do once your result is done if it comes back positive then you are told what intolerances you have, it's life changing, don't get me wrong I still have problems if I cheat and eat something in not supposed to but at least you know what it is. You get lots of help and advice on what you can eat and what to avoid. It's not cheap but in the long run it is well worth it . If you need anymore information just let me know but if you Google www.York intolerance test it will explain it all.

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I’ll have to wait until I get money 😂 but thank you x

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yes please ..me too would like to know what is the york test ??

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You say you are in a lot of pain and have to take pain killers. What is the cause of the pain? Is this related to the IBS? I am wondering if you could get a more compressive diagnosis at a major medical center. I especially think this as you say your white blood cell count is low. xx

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I am on painkillers yes and the pains are in my stomach, bowels, bottom left side of my stomach, my bum (tmi I know sorry) and the middle of my back. How would I go about getting a more compressive diagnosis?

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A local doctor does not have the ability to diagnose a complicated set of symptoms. It sounds to me like you are not getting good medical care. Your situation sounds serious to me and worrying. I would do whatever you have to do to see a gastroenterologist and possibly a rheumatologist in a major medical center to have the tests necessary to get to the bottom of your problems, including your low white cell count. The tests you had 8 years ago are no longer relevant. You now need a thorough work up and comprehensive tests based on your current situation.

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Hi lilrose ! are you on any other meds " other than the painkilkers " ??

a colonoscopy might be a bit invasive procedure now since you are in severe pain .. So is it possible to at least have an Abdominal CT scan done to rule out any blockage or adhesions in your bowels that is causing this painful constipation and inability to eat ??

pain radiating to your back and vomiting could it be something else like "Appendicitis " not just IBS ??

Hope you mention these issues to your doctor on your next visit so that you can receive further , more specific investigations to your case ...keep us updated and take care 💝

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Hey,

Thank you for the reply.

I’m on medication for my epilepsy, anxiety, depression, overactive bladder and vertigo (yes I’m a defect human 😂)

I had a colonoscopy eight years ago and it showed some signs of inflammation but now I’m so much worse. Like you said it probably wouldn’t be a good idea because even putting numbing cream up there causes a hell of a lot of pain - I also bleed a lot so it’s probably not best to shove a camera up there lol. I will ask about a scan. It’s hard because I’m waiting for a specialist appointment but I’ve been waiting for three months so idk what to do.

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Hi lilrose ! Wow that's a lot of meds !

There could be some drug interactions or worsening of side effects if taken together ..i think you better take all your meds and show them to your doctor on your next visit and try to sort out some replacements or dosage adjustments of some meds in order to alleviate the symptoms of drug interactions .

just a simple example that i have encountered earlier this week is that i took my Amitriptyline with Buscopan and Librax in a desperate method to reduce my bathroom trips " as i'm mostly ibs/ Diahrrea" this resulted in extreme horrible constipation actually scary as i had also loud abdominal sounds " just like a cat yawning 😨" and even more trips to the bathroom since the sensation to "go " is still there but with no outcome to give me relieve !! first time i experience such type of constipation 😳 it's like my colon turned into a crying baby with these creepy loud sounds !! this episode took around 12 hours 😩😧 ..the next day of course was a bed day can't get out of bed due to extreme exhaustion ..but i started reading the medical papers of these meds to get a more understanding of what had happened to me ..So the leaflet of Amitriptyline clearly stated that " taking this medicine with other Anticholinergic drugs can result in " intestinal paralysis " where your intestines are totally shut down !!

Both Buscopan and Librax are Anticholinergic drugs that reduce muscle contractions and spasms added on top of Amitriptyline which desensitizes the nerves to slow down gut motility ..all of these together " and i'm mostly the D type " caused this creepy horrible constipation !!

Drugs of (over active bladder) and vertigo also have this anticholinergic / anti spasmodic effects + some antidepressants can cause constipation ..i have no idea about the epilepsy drug but i suggest reading the medical leaflet and check out its " drug interactions " .

so when you were diagnosed with inflammation 8 years ago ..did they give you any treatment ??

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Hi,

My doctors have already gone over all of the medication I’m on - I can’t come off then as I need them for my problems.

I’ve tried a lot of things for my IBS and nothing has worked so far

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i'm in the same situation as yours but more to the Diahrrea side ..lots of drugs , herbs ..etc and nothing really works apart of "Not Eating " which makes me dizzy and weak at the end of the day and eventually force my self to eat something ..just today i checked my weight in my scale which was 39 kg 😓 not a healthy number for a grown woman :( so i totally understand how miserable and debilitating ibs could be .

Glad at least your meds are checked by your doctor so that you're assured to be in the safe path .

Mean while ..waiting for the Universe or medical community to come up with more potent new drugs and treatments for us ..until then i guess we just have to hold on and keep researching ..

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I’m so sorry you’re going through this - sending all my love to you.

I know exactly what you mean, I literally avoid eating if I can and like you said get dizzy as hell. It’s a battle we can’t win with that.

I hope things get better for you - for all of us - we can’t keep living like this. Doctors and other people really don’t understand just how much we suffer. My mum cries daily because she can’t help me and she doesn’t know where to turn - it hurts me a lot to see her like that. I hope that doctors hurry up and find a damn cure or something better than what we’re having at least!

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Ohh i'm so sorry your mom has to suffer too 💔 i totally empathise with what you're going through and feel your agony as we are in the same boat 😔

Thank God for the Internet as without it , i would have thought i was the only one suffering from this debilitating curse !! Not Glad that any one goes through this of course ..but knowing the fact you are not alone would ease the sensation of isolation which is so depressive for sure ! all my surrounding relatives and cousins enjoy going out , eating out and travelling the world and if they get sick " i mean the flu or something that mostly take a week to recover " they will yawn and say" i hate my life ..i hate allergy season while posting a pic of her looking gorgeous holding her mug of coffee in the famous coffee shop in town !! and i would say to my self huu .. wait until you go through what i'm suffering daily then we will see if you will only hate your life or end up in a mental institution !!

This community here is dedicated for us to vent , talk freely without shame or judging since we all understand , help and support each other as clearly the outside world including doctors can't fully understand or even take us seriously 😡

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Hi lilrose92 my name is Adrian and im from mexico, i been trough the same situation my problems started 3 years ago and i did all the tests and everything is ok (blood test, endoscopy, colonoscopy all of them) antibiotics make it worse, painkillers make it worse, antidepressant wont solve the problem it just makes you happy (fake happiness) ive spent around 4000 usd in nothing or even more i dont know. At this moment i have a new doctor who told me he can cure me in 3 months only with nutritional medicine im taking 9 pills a day right now all natural. Im getting better and the whole treatment will be around 400 usd. You can email me at adriian.rb@gmail i will let you know the result of this new treatment.

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I hope everything works out for you

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I totally understand how you feel, and I’m really sorry that you’re experiencing the same thing I am, because I know that it’s awful! The constant pain, never being able to enjoy food, not being able to go out socially, it makes you feel like life isn’t worth it sometimes (but it is). The only thing you can do is to focus on yourself, realise that you are an ill person who’s suffering with a terrible disease, and give yourself time to heal! And I mean in all aspects of life, try and get rid of as much stress as possible and don’t be afraid to turn up to A&E! People with IBS are often brushed off with a packet of pills and told to get on with it, but it just isn’t enough. Lots of love and I hope your condition improves somewhat 💕

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Thank you so much for the reply and support I really appreciate it. Sending you love and positive vibes 💖

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Hi lilrose - I'm so sorry to hear you are in so much pain. Have you been tested for intestinal parasites? I was suffering the same kind of symptoms as you for a long time, and has all the tests under the sun, until my sister, who is a nurse, suggested that I should be tested. I had travelled a lot in South America and Indonesia and got quite ill there and she thought there might be some remnant of that. She was right. I had 5 different types of parasites, which due to the doctors not placing any importance on my having travelled, had gone undiagnosed for 10 years, during which time my symptoms got worse and worse. I could hardly eat and was in almost constant pain. After the diagnosis I had 3 sets of antibiotics and the symptoms were much improved. I still have daily stomach aches and poor digestion, and have to be careful what I eat, but I am able to function and have a life. You may have already had these tests but if not, it's definitely something you should consider. I know only too well what you're going through and it is just unspeakably awful.

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Sorry you went through that and are still suffering! No I don’t think I have been tested for that

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