New to this and struggling alot!

Hi I'm 25 and in the last few months my IBS has become very bad! I think it's been there for about a year but not it's gotten to a point where it's ruining my life and I'm fed up. I'm scared to eat. I don't ever eat anymore if I'm going out or going on a date or anything social :( I'm a young woman and I can't live like this, it's really getting me down. I've been to the doctor and after months of trying they're finally letting me give a sample that they're testing for calprotectin. They generally dismiss me though and after diagnosing me they gave no support at all so I still don't really understand my illness.

I've looked up the foods you're not supposed to eat and it's basically everything!!! There's so little food that I can eat that I actually like. I also do have mild problems with anxiety so I don't know what I can do there as I've been tackling that fit years and it's still here. I've got buscopan which has helped abit but I can't take peppermint oil as it just burns and comes up in my breath and I swear it doesn't make it further than my throat!

The flatulence is ruining my life as it's so embarrassing. If I hold it in my stomach makes the loudest and prolonged noises which are even more embarrassing!

Sometimes I get a pain in my stomach that brings me to tears! It's like a pressure so strong all across my belly. Like someone is twisting all of my insides and there's nothing I can do. I immediately have to leave whatever I'm doing and lay in bed writhing around in pain.

I can't even pinpoint a trigger. Some days I'll eat for example, an apple and I'll be fine. The next day I'll eat another apple and have pain, gas and diahorrea. There's literally no way to tell, it's random. The more I try not to think about the more I do and the stress of the actual illness is making it worse! If I'm in a social situation I get so nervous that I might have an attack that I actually do have an attack :(

I can't take this anymore. It's making me depressed. I can't live like this and i can't find any support.

22 Replies

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  • I'm sort to hear that it's an ongoing commitment that doctors don't help but it's basically that they don't know what to do. Once you're in this spiral you need someone different. Give hypnotherapy a try. Make sure you find a registered person. It will help you relax and may show more triggers than you think. I also used kynseolology which was a great guide to my diet. Good luck.

  • Have you tried the FODMAP diet which seems to help a lot of people

  • I have looked into it but it cuts out everything I like and how can I ever have a normal life and eat out with friends. I've bought some books

  • Unfortunately with a disease like IBS some sacrifices may have to be made

    I was diagnosed at the age of 65 and dicovered that I had become dairy intolerant - so a completely different diet for me

    I still go to restaurants,no cheese on a pizza, go to France and Italy on holiday - I made up little cards with a translation about being dairy free

    Have you tried your own intolerance tests leaving one food group out of your diet at a time like dairy or wheat out of your diet for at least 2/3 weeks keeping a food and symptom diary to monitor any changes there might be

  • Fodmap is pretty liberal. For Us IBS folks we have to change our diets one day at a time. And we have to cope with stress.

  • Hi Atal, I'm so sorry to hear that you are having such a bad time, reading your feed, I get the impression that your anxiety is much worse than you're aware yourself, being a young woman of 25 I have completely sympathise with you that you feel it is taking over your life. I know how difficult it is to get heard regarding IBS, IBS is related to anxiety disorder but then becomes related to food when our bowel movement stop working normally, life makes us anxious and sometimes we can't pinpoint why. Some CBT therapy might help you manage your IBS for those times when you feel anxious about being out and the effect is has on your body, you will have to ask your doctor to refer you for CBT, regarding the apple it's a fodmap no no food, your digestive system is normally an effective communicator to your body if you don't have IBS so although you seemed fine one day with the apple it was probably the first apple that caused you to be in so much pain and caused your diahorrea, but because our bodies system has a breakdown in it isn't processing through your body in the same way as it would under normal circumstances, it might also be worth you doing a diary to help you see what helps and what doesn't. I hope your doctor does what is right for you and gives you further help and support to help you enjoy your life at such a young age. Remember that that sometimes you have to be on a relentless pursuit of what is going to help you, doctors are human just like us and are not gods so can't hurt you if you become insistent in your pursuit of happiness and health. Your not alone here, keep your chin up and don't give up. 😊 Let me know how it goes sometimes having someone to say they understand how your feeling can make all the difference. Big comforting hugs from me to you X

  • I've had CBT in the past but right now I wouldn't know what to say to the therapist, I'm not anxious about one particular thing it's just daily life stressors and sometimes it's just random and not related to anything I'm anxious about. I'm trying out mindfulness and I may start yoga and see if that helps. I used apple as an example :) I don't actually like apples haha. I've ordered a notebook online and I'm going to start a diary and see if I can pin point triggers but it probably is alot to do with anxiety! I've been thinking about trying natural remedies like camomile too

  • That's what anxiety is its not reasonable thinking and can be alot to do with the sub conscious mind. As you can't be explained. And I totally agree with you trial and error to see what works for you as an individual. I was very touched by how much it is affecting your young life. I hope you can find something helps you. I have chosen to use the medication from the gastroenteroligist and so far is working but I don't think it's for you as your ibs is the opposite of mine I have all the same symptoms as you apart I can't go and you can be that your comes at a price. Good luck on your journey of discovery 😊

  • I totally understand where you are coming from as i am in a very similar position. the only advice i got from my dr was do a food diary and like you it seems to be very random :/

  • Hi sorry to hear how your feeling. Mine all started very suddenly and I've had all the tests. Now they have ruled all possibilities and have called nerve damaged induced IBS. I have near enough the same symptoms as you. I could eat a particular food one day eat it again the next and have to run to the nearest loo. I've been on all of the medicine such as mebeverine and buscopan. I got so pissed off with it all that I was worried sick and loosing weight. I got referred to my local hospital and as I said before had all the tests. I found a that when I was on holiday away from work I was fine. Back in work I was back to normal running the toilet and so on. I was told that in the bowel the is chemical called 5 HT or something along those lines. When it is in balanced this is the result. I also suffered with a bad back which I don't know if it was linked to IBS. Any way the point I'm getting to is I was put on a tablet to be taken at night called amitriptoline 5mg to be took at night. I found that this tablet does work it's not a cure but it relaxes and de stress you and the bowel. The only thing is your very tired the next day. So I'm now on nortriptoline exactly same thing but no where near as tired and I can take 10mg of a night. I'm not saying it's a cure but it does rectify a lot of the problems for me. Also i know that if your a healthy eater your defo not going to like this, but mc Donald's food never ever triggers I've asked about this and was told to eat more stodgy foods it does work for me. I hope you find some of this helpful but I'm sorry to say IBS is the umbrella term for we don't know what the f*#k it is. If they did the would be a cure. Good luck

  • How would our nerves have been damaged? Did they say? I've been given buscopan but have decided that for a couple of days I'm going to go without and keep a food diary so I can try to determine a trigger although I don't think there is one most of the time. Oh no I love McDonald's 😂 I'm happy to eat that haha. Well hopefully they'll give me more tests and can find a solution. Do you remember which tests you had?

  • I had a urine infection that went miss treated for over 12 months by my GP. As a result of this I had to be put on some very strong anti biotics. Now at first my consultant seemed to think this had caused my IBS. Now I'm told it could be stress induced IBS. To be perfectly honest the term IBS is an umbrella term for we don't know what it is. Buscopan and mebeverine tablets may work for a handful of people but a lot of IBS sufferers will say it does nothing. This is because buscopan and mebeverine tablets are peppermint oil based tablets. My consultant said they are dished out like smarties and don't work. I've had all the test from bloods, to bowel samples to pooh samples. I was told that the is a chemical within the bowel called 5HT which sometimes falls out of balance for whatever reason. I was prescribed amitriptoline which works but made me too drowsy. Nortriptoline 10mg at night the next day I'm fine. Heavy foods like mc d's does seem to work. Also try avoiding milk as some do say it could be linked to it. Keep a food diary if you think it will help but I was like you could eat garlic bread one night and have to run the toilet after it but the next night I would eat the same garlic bread a be fine. I do find the tablets am on a massive help and they do work. It's not a cure but they do chill you out. Hope you find your answer.

  • I empathise completely with you.

    I completely changed my life by going gluten and dairy free and using FODMAPS foods.

    Get the app from Monash University (Australia) and eat only the foods traffic light symboled green for 4-6 weeks and see if it makes a difference. If so you can then add back, by type ' foods mArked Amber.

    Monash developed Fodmaps and update regularly as they test more and more foods.

    Good luck on your journey.

    I also used a self-hypnosis system from IBSaudioprogramme100.com which I found very helpful with the strss side of it.

  • Thankyou I'll try the app and the self hypnosis! :)

  • It could be your anxiety causing a lot of this. My IBS was much the same as yours, my anxiety was so bad my boyfriend practically forced me to have CBT & it was the best thing I ever did, it completely changed my way of thinking, calmed me & my health is the best it had been in years, I've not had diarrhoea in months & ive completely come off all my meds. I payed privately, as at the time it was now or never. Good luck, I really feel for you. Pm me if u have any questions x

  • Keep going back to the doctors till you are happy with what they say...You are his boss do no be scared to ask to be referred because you cant stop eating like you are..

    Has he tested for crohns disease and celiac because if he hasnt you should have these tests....Sometimes ibs is over diagnosed and my son was told he had ibs but he actually had Crohns

    I dont know what medications your on but none of the ones the doctor gave me for ibs helped but Busopan that you can buy over the counter really helped me a lot but please let your doctor know if you do buy anything before taking it x

  • I'm going to keep going back. They gave me buscopan but right now I'm trying to do q food diary so not taking medication for a couple of days. I find it frustrating as I'm have recovered q few years ago from an eating disorder and now my physical health is actually stopping me from eating! Just when I finally feel comfortable and recovered :(

  • I feel for you as I have been the same I don't eat very much cause not sure about what I can and can't have. I try my best not to eat bread and chips and onion and garlic is a no no. Having said this I went to health shop after reading about pro biotics they said woman need more good bacteria than men (20 million) and I started taking one every morning and the difference within a week was amazing especially with the bloating and wind problems. I'm not saying its a cure but totally improves your daily routines quickly if your at the end of your thether. My cramping and diarrhoea have improved a lot since taking them

  • Thankyou I'll try that;

  • You need to be referred to a gastroenterologist and have more tests. I went to the Dr for years with bowel problems and ended up having hashimoto's disease causing me to have a severely under active thyroid. I have since been diagnosed with slow transit constipation which means the nerves and muscles in my bowel don't work properly. My bowel was so stretched, long and loopy I had to have major surgery last year to remove my sigmoid colon. I was fobbed off for over 20 years and ended up very ill so you need to push for more tests to rule out anything more serious. You are young and shouldn't have to live like this. Best of luck.

  • Im sorry to hear that you're part of the club now although i have to say it it might come off as mean but its truth you've got to allow your flatulence pass through, people like us have hypersensitive nerve endings in our gut gas buildup and undigested food can cause alot of pain embarrassing things cant hurt you but holding it in all day will! Ive had this for 5 years now its been constant pain with little relief.

    As for foods the truth is there are none everyones body reacts different to various foods i suggest writing a list of foods you like and try them out spacing about 4-6 hours that way you can accurately rule out the culprits.

  • Sorry to hear that your suffering so much .Remember you are not alone .I feel your pain as I suffer with it everyday even Buscapen doesn't always work for me .Have tried lots of different things and not much relief .Hope you soon feel better 💐

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