Can anyone suggest anything I haven't tried?

Hi all

I'm quite new to this site and wanted to join in the conversations about how IBS affects everyone. I was diagnosed in 2007 but think I've always suffered as I had problems with my stomach and constipation in childhood.

Over the years I've tried every tablet the doctors prescribed. Anti spasmodics do nothing for me and antidepressants make me feel far too spaced out to function! I went for tests back in 2009 and since then I've been having vitamin b12 injections every 12 weeks. I've tried windeze and buscopan but neither were effective. The only thing that did help me to try and manage the pain was syndol but this is no longer available.

I go for acupuncture when I can afford it as this helps with relaxation and soothes some of the pain in my stomach. I've been taking acidophilus and aloe vera tablets but they don't seem to have helped and lately I feel as though I'm living on solpadine and ibuprofen to get me through the day! I've even applied for personal independence payments as my ibs is having such an impact on my life.

I've tried keeping food diaries and found that too much meat and dairy give me a bad stomach. I'm mindful of my diet and rich foods. I have a lot of meat free days and changed to lacto free milk sometime a go which I'm better with. My problem is I could eat something one day and it would have no effect on me and on another occasion I could be rolling around in agony!

Every morning I wake up bloated with trapped wind and I'm either constipated or have diarrhoea. I have to take things slowly and often go to work feeling terrible. Throughout the day I get spasms and often feel sick but suffer in silence as I'm in a temporary job that I can't risk loosing. It also helps as my job is close to home and flexible so I can pop home at lunch and rush back from work should I need the loo. I have to confess I am really struggling to hold down a full time job when I feel so poorly. I also feel for my partner having to put up with someone who's ill all the time. I know he doesn't see it like that and I try as much as I can to keep going. I have found that stress has a huge impact on my ibs and have been poorly for long periods when stressed and anxious.

It's been so good finding this site and ibs network as I don't know anyone else who suffers. People find it hard to understand my ibs so its nice knowing there's others out there who do.

If you have any suggestions or know anything that helps please comment. Thanks for reading x

23 Replies

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  • Have you heard of the Low FODMAP diet? The term FODMAP is an acronym, deriving from "Fermentable, Oligo-, Di-, Mono-saccharides And Polyols". The restriction of these FODMAPs from the diet has been found to have a beneficial effect for sufferers of irritable bowel syndrome and other functional gastrointestinal disorders (FGID). The low FODMAP diet was developed at Monash University in Melbourne by Peter Gibson and Susan Shepherd.

    med.monash.edu/cecs/gas... is the link to the Monas University site - they developed the diet.

    The best sources of information for FODMAPs are as follows:

    a) the smartphone app available for download from Monash University - the diet was created there and the evaluation of different foods is ongoing.

    b) Patsy Catsos's book 'IBS-Free At Last!' - best to buy the actual book rather than the download the Kindle version as it's easier to read charts etc.

    c) Sue Shepherd and Peter Gibson's book 'The Complete Low-FODMAP Diet: A Revolutionary Plan For Managing IBS And Other Digestive Disorders'. Sue Shepherd developed the diet at Monash so you can't really go wrong.

    I am on it currently and it's brilliant! I have IBS-d so can't say how it works for IBS-c but if you look around this forum you may find someone in the same situation as you who has. Good Luck.

  • First, I just wanted to say that I know that IBS-C can be pretty bad. I have the C, but without the pain... mostly. I have a couple of suggestions.

    A small practical thing that helps with constipation is magnesium citrate. It's basically a stool softener (osmotic laxative in doctor speak). If the stool isn't so solid that it is stuck, then the gas can escape and hopefully it will be less painful. I've used that and think it really helped.

    Have you tried being completely gluten free? Gluten produces opioid-like substances when poorly digested, and this can slow down the bowel. I have C, and gluten makes it so much worse. Or to put it another way, I was so much better when I stopped eating it. The FODMAPs diet cuts out wheat/gluten anyway for different reasons.

    You mentioned Syndol worked, which is a combination of paracetamol with codeine, caffiene and an antihistamine. You can still get all of those things separately over the counter. You're still getting paracetamol from the solpadiene, or you could up it to solpadiene plus, which contains the codiene and caffiene as well (although I reckon the codiene might be working against you - it's an opioid painkiller, and they tend to cause constipation). That just leaves the antihistamines. You could try taking something like Benadryl to see if that helps you.

    If antihistamines do help, then it might point to a problem with the histamine content in food. The list on this link is quite basic - aged meat products like sausage can have a high histamine content - but it is a starting point.

    allergyuk.org/common-food-i...

    If you need to go on a specialist diet, then it can be quite complicated, and I suggest you try and get some help from a dietician.

    I have concerns about long-term ibuprofen, and if you can get away with not using it that might be better. If you have food intolerances, then it will likely make them worse. Ibuprofen increases intestinal permeability a.k.a. leaky gut, and will also reduce your ability to tolerate food chemicals like histamine.

  • Hi I've tried various like aloe Vera peppermint etc what is working for my IBS-D right now is very little bread, more excerxise and when it starts to get bad I take Lepiciol and buscopan . Within a day of lepicol movements are back to normal. It's a physllium husk with pro and prebiotic

  • Hi

    Thanks for this. What's the difference between ibs c and d?

  • Try reading up on fodmaps....most common cause of ibs. I found I've all but got rid if mine.

  • IBS d is diarrhoea, c is constipation and a is alternating which is what I have and what you also seem to have. I have been on Fodmaps for 9 months now and it has changed my life after 26 years of struggling daily so please do try it. I also did a self- hypnosis course for 100 days which has assisted with the anxiety issues enormously. I now take virtually no medication except very occasionally peppermint tea or capsules for excess wind and loperamide if I have a situation which I know will cause me anxiety more than normal. The course is available from ibsaudioprogram100.com and costs about £69 - the best money I have ever spent!

    Good luck I hope these things work for you too. By the way try cutting out coffee and tea as they are known triggers

  • Hi Lucy,

    I wonder if you have just got very run down with your IBS and your body is struggling to cope especially if your sleep is disturbed. I've had to accept that I'm not as well as I was and reduce my work hours etc. My works Dr pushed for me to be reviewed by the chronic fatigue service and this helped him to get me reduced hours at work. It may be worth asking your Dr or self referring if you can into the service - they would give you advice with benefits if you struggling that badly at work. Good Luck.

  • If you find stress makes your IBS worse, it is worth trying Paul McKenna`s CD and book on stress control. I got mine from Amazon it it definitely helps me when I`m feeling uptight. You are not alone, people don`t realise that IBS doesn`t only affect the tummy but causes extreme anxiety and fear. You will be OK.

  • Thank you for posting this, my anxiety and fear are HUGE due to both IBS and Fibromyalgia ( the two seem to be linked ) and I honestly feel as though the people in my life ( including the Doc ) just think I'm a hypochondriac. They don't actually say it but I feel it and sometimes I think I'm going crazy. I get a fuzzy head and numbness when anxiety hits hard and it makes it so hard to carry on with daily living. I am reading more and learning as much as I can in the hopes that I will one day feel better. I've only been on the FODMAP diet for 1 wk. now with no results whatsoever, except for the odd very few minutes painfree or when I manage to sleep. Keep on trying for all the sufferers out there, let's stick together and share as much of our knowledge as we can. xx

  • Thanks so much for all your comments. I'm going to have a look at all the links over the weekend. The problem is I'm a temp at the moment and can't cut my hours down due to financial commitments. I do some money advice within my job as I'm a rent officer. I thought if I could get personal independence payments maybe I could reduce hours but we'll see. Stress is a big factor. I am run down at the moment which I know isn't helping. I love my new job and it's going well but other things are dragging me down. I really appreciate all of your advice and comments x

  • Sorry to hear of all your problems, but this site is wonderful for sharing experiences and picking up information. I've had all the tests available and tried lots of different medications and the best thing I've tried recently, as recommended on this site, is a liquid called Kolanticon, which helps with excessive wind, stomach spasms and too much acid, and it really does help with these symptoms and calming the stomach. Lloyds pharmacies sometimes have it in stock but you have to ask for it, and my G.P. has now put it on my repeat prescription for me, so don't have to pay as I'm over 60. I had 4 sessions of hypnotherapy last January and found this very helpful - it stopped me feeling guilty about an event in my life which had been worrying me for years, taught me how to relax and stop worrying constantly about my stomach. The therapist gave me a couple of C.D's and I find playing a few tracks before a stressful event or going out socially calms my stomach. Stress and anxiety are triggers for IBS and it can become a vicious circle worrying about your stomach as the more you worry about it the more it plays up, which worries you more, which makes it worse! All good wishes to you - would be interested to hear how you get on.

  • Thanks for this. It really is a viscous cycle! I was very ill for a few months last year and because I was so stressed my ibs was awful! I had bad acid reflux too. I get so fed up with doctors. Whilst my regular doctor is lovely there's nothing left to try. I asked for a test for lactose intolerance but they said they don't offer one. As for comments as to why do I eat foods I know make me bad its so difficult as I'm not always bad with the same foods. Nightmare! I found acupuncture good for relaxation. One doctor I spoke to told me not to bother with tablets like aloe vera and said there's no point as they don't work! What I have found with ibs is what might work for one doesn't work for everybody. Really appreciate your recommendations x

  • Sorry, meant to add that I'm seeing a dietitian next week about trying the FODmap diet which a lot of people using this site seem to find very effective. Have read a lot about it but it sounds a bit complicated and is apparently best done under the supervision of a dietitian.

  • If you know that bread and dairy affect you why do you eat it.

    Try dairy alternatives - soya based products

    I have to be strict about my dairy free diet - and I loved cheese !!!!!!

  • Hi,

    Firstly I have now changed to lacto free milk but as for other dairy and bread sometimes I could eat it and be fine and at other times i could be bad. I'm the same with most foods so its hard to pin point. I have loads of meat free days and don't eat much bread. I manage my condition as best as I can and don't food diaries but never found a root cause.

  • Have you tried being dairy free for at least 3 weeks ?

    It won't do any harm

  • Yes I have done this before but still had problems. I know I'll never be cured of ibs I just want to manage as best I can and if I can suffer a little less its a bonus!

  • My understanding of IBS is that there is no cure because it's not an illness - it can only be managed.

    I was diagnosed in 2012 at the age of 65 having been able to eat and drink anything I had wanted all my life. My symptoms were adverse Diarrhorea and now have to be so careful about what I eat.

    Also a lot if tablet medication contains lactose so all ingredients must be read, ie ibuprofen and loperamide

    Good luck

  • I've always had stomach problems. When I'm in an attack I'm doubled over in pain and I can't move. I have diarrhoea and feel sick. Sometimes just sleep on the bathroom floor. Wake up every morning with constipation or diarrhoea, wind and pains. Go to work and have spasms so sit with a hot water bottle. Its so hard being at work when you know you could go into an attack at any time. I often rush home at lunch or after work. Thanks for the advice on tablets I'll definitely check ingredients.

  • Hello and welcome, I to am finding this site comforting and helpful. I too believe my tum problems started when I was a little girl in the 1960's. My family were hard up and we did not have a bathroom only an outside toilet that was not in the best of conditions. All I can advise Lucy is never give up try anything and everything when you can afford it. Just a thought Yoga would be a cheaper therapy than acupuncture for relaxation. You are doing the most important thing to help your IBS by going to work even though you don't feel well enough. I find going to work helps with the anxiety that comes with IBS. Good luck!

  • Where do you live? We have clinics in Southern England who specialise in IBS who could potentially help.

    Check out our blog here on Ileo-cacel valves which may shed some light on symptoms you are experiencing.

    healthunlocked.com/theibsne...

  • Hi, it's really worth looking at artificial sweeteners in anything you consume, especially sorbitol, and completely avoiding them. I have had severe IBS for 20 + years now, but only by chance did I discover how damaging these ingredients are. Due to dental work I had last year, I had to stop using chewing gum (I used to chew it every day) but I have had a real improvement in my bloating and diarrhoea symptoms , especially the diarrhoea I used to get several times each morning. Things have become much more solid for most of the time, which has made life easier. I didn't realise the sorbitol in the gum could aggravate IBS so much. I still get some pain, and try hard to relax, have you tried anything like aromatherapy oils gently massaged onto the stomach? I find this helps. I really hope things improve for you, best wishes.

  • I agree completely with this. All sweeteners ending in -ol have to be eliminated on the FODMAPs diet.

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