IBS Network
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I'm a real mess

Hi, I'm Chloe, I'm 24 and I'm new here. This is the lowest point of my life, and I don't know where else to turn right now so I could do with a bit of reassurance and maybe some advice, most of all I just need to vent.

I first experienced IBS symptoms at the age of 10 and it went on for 13 years afterwards. It was unpleasant but nothing I couldn't handle. Then last year in Sep 2016 I suddenly experienced /agonising/ pain that came in waves for 4 hours. I called 111 and the nurse reckoned it was just a bug. The pains calmed and I put it to the back of my mind that it was just a bad bug (stupid, I know). 2 weeks later, it was back. This time I went to A&E where I was told the same thing. They gave me painkillers and sent me home. This time it took me 10 days to recover. Again the agony only lasted a few hours, but the days that followed was like recovery from a really bad bug.

Long story short, this keeps happening every few weeks or so. The flare-ups last anywhere between 3 days and several weeks. At the moment I have more stomach pain and nausea than I use to between these flare ups. I've seen a gastroenterologist who reckons it is likely IBS, he suggested strong pro-biotics (VSL#3). They gave me more time between a flare up than anything before (60 days). But now I'm experiencing a flare up longer than any before it.

I have so many symptoms, it's ridiculous. My main ones are really bad reflux (for which I've tried just about everything), nausea, sore throats at least once a month (got one right now), a feeling of something being squeezed in between that middle space of the ribs, things popping in and out under my lowest left rib, inability to laugh+cough because it hurts my middle so much, fatigue, chest pain that feels 'cold', a pressure and burning pain in the pelvis area, feelings of being bruised in all my intestines and like someone is pushing on them, no appetite whatsoever, blood in stool twice (for which I went to A&E), alternating bowel movements, sharp abdominal pains, twitching/spasms in abdomen (also in arms which I put down to anxiety), bloating ...there's more I'm sure. I'm on no long term medications.

As for tests I've had blood tests, urine samples, stool samples, colonoscopies, gastroscopies, scans... all of which showed nothing abnormal. On paper, I'm perfectly healthy and fit and well... expect I'm not. The only thing they found was that I have a very very long large intestine that is very loopy. I had a test to rule out food intolerances... turned out I was intolerant to several foods, so I've cut them out and went on a diet for months to help heal leaky gut if that was the case.

I feel ill all the time. I have no life, I can hardly spend time with my family. I feel absolutely defeated because I had just overcome several years of anxiety last August and was getting my life back on track. Then this happens. I'm on day 4 of spending all day in bed now because I'm so depressed and my anxiety has soared way back up again at this point after so many months of this nonsense, I even feel panicky around my family. I spent a good few months trying to be more positive and I was taking walks and going to new places with my boyfriend but I just feel so beaten down now. I got tired of coping instead of living and enjoying. I couldn't even get to my new psychotherapy appointment on Monday because I'm unwell and my anxiety is running wild. I just feel trapped. I don't feel like a person anymore, I feel like a vessel for this condition.

Sorry this is so long, it feels good to write it all down. It's not till October that I see my gastroenterologist again for new advice and tests, and I don't know if I'll be able to make it to psychotherapy or not. I feel scared about what is happening to me because I don't know if it's IBS or not. Even if it is I don't know how to control it despite trying so many things. And it just seems to be getting worse. The doctors just tell me to wait till October. Idk. Feels like this is what my whole life is going to be. Thanks for reading.

20 Replies
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Hi there sorry to hear your having a rubbish time at the moment. Are you able to ask for a home visit for your psychotherapy under the circumstances? I think it's awful to be left to get on with things I don't think doctors really understand IBS and certainly don't understand the impact it has on daily life and mental health.

I am surprised they have not given you any medication to try and ease symptoms at all? Your symptoms sound quite serious - have they ruled out IBD, colitis, crohns etc? All this physical and mental strain must really be draining your immune system.

It's frustrating when flare ups occur especially regular ones but something must be setting it off do you keep a food/Anxiety diary? Can you see a nutritionist? I also struggle with anxiety so understand the viscious cycle. Can recommend a good book Anxiety Panicking about Panic by Justin Fletcher it's helped me work on my IBS related anxiety and symptoms. Have also just started an 8 week mindfulness meditation audiobook programme need to see if it works though!

Hopefully at least this forum can be of support to you. X

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I would find the best gastroenterologist I could. This doesn't sound like IBS to me.

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Yes I'm rather confused as to what it is given the many varied symptoms and lack of abnormalities in my test results. My gastro said he will run further tests to check for more uncommon conditions.

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Unfortunately I would probably have to pay out for a lot of money for that. I did manage to go to my psychotherapy in the end but it turns out it was just another mental health assessment. They want me to go to group therapy for anxiety but I've insisted I need very tailored one on one help and they're looking into it.

I was given NSAIDS which I only take occasionally as I'm concerned about the long term health affects from continuous use.

I kept a food diary for about 3 months and there doesn't seem to be any pattern. Thank you, I have felt comforted by the replies here and I've been looking at others posts too. I hope the meditation works for you, how is it going so far?

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Hopefully you get something more specific to your needs. Can you try paracetamol or cocodamol instead of NSAIDS? I find those give me heartburn. I'm enjoying the daily meditation it's helping to ground me and relax a bit even during stressful times. My daughter has started school and not settling its a rollercoaster couple of weeks so my anxiety and Ibs are affected. Bring on the Imodium!! X

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I'm not going through the same exact medical issues you are, but a few I am. I also have anemia and a newly developing thyroid issue. I've been on medical leave for 6 weeks and laid in bed for most of that time, anxious and depressed the whole time. I came back to work this week and am still having bowel issues, panic attacks, and a general feeling of weakness and fatigue. Doctors can't figure out exactly what is going on with me other than the anemia and my wonky thyroid, but even those are improving according to blood work. I guess I'm writing to tell you that I TOTALLY understand what you are going through and I don't know what to do about it. I pray we both get answers and feel better!

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I'm so sorry to hear that, thanks for sympathising and I hope we can both relate to each other for better circumstances soon. How are you feeling now?

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Hi Lumidna! I have since been to a new doctor and figured out I had a reverse T3 issue with my thyroid and got on meds, and I feel so much better! I'm not 100% yet but much improved! How are you feeling?

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Hi, I'm so so glad you've figured out what's wrong and are feeling better :). I'm still not doing too great, there was a point during August/September where I went a while without a flare-up and I felt free, but I got one in late October and it was one of the worst I'd had in a while :( Knocked me right down, mentally and physically. Hard to tell if I'm getting better in the long run or if it's just up and down. Fingers crossed I keep going a long while without a flare-up and that I learn to deal with it mentally much better, too. I'm supposed to be seeing a my gastro in two days but my anxiety is so bad right now... but I'll sort something out, I'm sure.

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Hi I've had IBS for 10 years from being diagnosed. I can't eat potatoes, chilli, pepper, tomatoes (deadly nightshade); also have started to react to dairy and wheat in recent months and onions. I hit my lowest point a year ago when I had an 'accident' on my way to work and had to go back home to shower and change. Luckily was driving and not on public transport. In desperation I found a clinic and went for weekly colonics. The first two didn't work, but after that my IBS symptoms subsided and my stomach was flat for the first time ever. I highly recommend having this done, even if it's just for 6 weeks or so (about £60 a time). I was recommended Saccromyces Boulardi (excuse spelling) for Candida overgrowth in bowel and this has been a godsend. cytoplan.co.uk/saccharomyce...

Dont forget IBS could be caused by stress, food intolerances, parasites (from a foreign holiday) etc. Drink loads of water and try to exercise and take time out for you. Could also push doctors to recommend you to a dietician.

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I'm sorry to hear that but I'm really glad the colonic worked for you :) I'll consider it and discuss with my gastro. I definitely need more water and exercise.

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I am so so sorry to hear that you are in such a bad way and cannot believe that you are not being given anything to at least try and alleviate some of the symptoms. I have IBS and mainly C although my bowels seem pretty normal at the moment but this might be because I am cutting foods out of my diet. Although I did have a glass of coke last night, I went to a leaving do, and suffered for it afterwards, I knew I would. It's to get anything to drink, apart from water, that isn't going to upset the system.

I totally agree with Normal below, this does not sound like IBS so I would insist with your doctor that you are seen earlier, you can't go on like this. I've had IBS now for 20 years and I've never been like this, I know we all suffer with different symptoms with the condition. Also, you have mentioned that you have a very very long large intestine that is very loopy, I would say that this needs to be looked at and sorted sooner rather than later, this may be causing you to be so poorly.

As for nausea, I get that more than I used to so take travel sick tablets to alleviate it, they do work; I also will put around a half a teaspoonful of bicarbonate of soda in a small amount of water and drink, yes it doesn't taste very nice but it certainly works.

Please let us all know how you get on.

Alicia

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Thanks for your reply. I'll try the travel sick tablets to see if it helps. Unfortunately I can't be seen any earlier. The good news is that about a week or so after I made this post, the flare up when down and I felt somewhat comfortable again for a little while. It's back again now though and I'm taking note of symptoms to show my gastro.

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They certainly help with me. If I feel just yukky i.e. not full on nausea, then I will put a small amount (purely guesswork I'm afraid) of bicarbonate of soda in a glass with water and drink, this certainly helps.

I'm glad you are taking note of your symptoms and will be showing your gastro.I

I really hope you improve soon.

Take care

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Feel for you having these problems. I was diagnosed with IBS way back in the 80's! Unfortunately stress and anxiety can really give physical problems/symptoms, quite extreme for some. It was several years of taking antispasmodics and anti nausea meds before I was given a camera both up and down which showed I had diverticula and a hiatus hernia. Foods and drink which seemed to trigger bad bouts have varied over the years- garlic is still something my stomach is sensitive to, alcohol also. I was advised to remove sugar from my diet as it was thought I had "candidosis"(thrush throughout my gut)?, this did seem to help but I've not been great at keeping it up for more than months at a time. There does seem to be much more understanding and progress regarding gut bacteria and it's effect on over all health. I too am waiting to see a gastrenterologist, for chronic diarrhoea I also have GERD(acid reflux) recent colonoscopy was clear apart from known diverticula. I should add of course that I have being older adding to my problems nowadays. Wish you good luck with getting the right support and treatment ASAP. :)

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I hope you feel better soon x

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Thank you :)

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Hello, I've not yet had a vitamin deficiency test and I plan to ask my gastro for one when I see him next. I'm intolerant to lactose, gluten, much of the nightshade family, eggs, oily fish, peanuts, coconut, buckwheat, cherries, blackberries.

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Just a word of hope, Chloé. My story was similar to yours in many ways. I have since beaten IBS. It took me a long time, but everything is now very clear to me. On my blog you may find some insight that you are missing.

I would strongly suggest you get tested for Candida/SIBO to start with. I had this going on for years without knowing it. More info on that here: sickofibs.com/ibs-symptoms/...

This may sound odd, but I would also suggest a couple of sessions with a (recommended) Reiki practitioner. This won't sort out everything, but should help at least appease some of the tension/pain you are experiencing. This helped me a great deal in times when I was going up the wall.

Hope this helps move you forward,

Alison

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Hello, thanks for your hopeful reply, I'll have a look at your blog. I've been tested for candida and SIBO, both of which were negative. I've been considering some therapies such as this and hopefully they will help.

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