Desperate last resort

Having suffered with IBSC for 11+ years, it has got far worse in the last 2 years. I am in pain every day and suffer bloating and terrible wind. I have tried gluten free, dairy free etc. For a month I have eaten no fruit or vegetables, as they all seem to cause symptoms. I have tried numerous medications, including being on Symprove for 10 weeks to no avail. Finally in desperation I have started from scratch today. All I have eaten is porridge made with water. I will do this for 2 days, then introduce one food every 24 hours. At least this should confirm whether it is food related or not. I am also taking Pregabalin on prescription. It is licensed for epilepsy and anxiety, but has had some success with chronic IBS. For a while it seemed to help, but now it doesn't seem to be making any difference. Any tips would be welcome. Debbie

17 Replies

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  • Hi,drigby,I have suffered chronic IBS now for to long to metion. I also suffer pain everyday,I'm also on Pregablin and have been for about 8yrs,they do no good,but getting off them just gives me double the pain. Like you I've tried Fodmap diet,every pain relief you care to metion,and no end of cameras up down,scans about 8consultants.

    Right now I think I'm under the best Proffesor of Gastrology ,about 3wks ago I had a MRI scan because it could be due to a nerve in my back,even though I have no back pain.

    Now this is just a suggestion try googling the Vagus Nerve,Prudential Nerve,and the Predential Nerve,and just see if you have any of them symptoms,that's what my Gastrologist is looking at,I haven't had the results yet,or I would let you know.

    Good Luck and believe me I know what your going through.

  • Hi drigby and gemini,

    I am just off for my first ct scan, colonoscopy on Monday, consultant really seems great!

    I know it shouldn't, but just to read your posts made be feel a tad better. Been on the low FODMAp diet for about 3 mths, it helped the diarrhhoea, but I am getting daily pain and bloating. It really gets me down and I am sure that it's anxiety related.

    It seems a great idea to get back to basics with the diet, but I would be afraid of losing too much weight. What an awful business this is, and I'm a "newby" and already losing sight of normal life.

    Nice to know we' not alone.

    Good luck, nobiker.

  • Kiwis and powdered acaica fibre they stop me from bad c. Also i found eating less grains makes a diff

  • If you have IBSC you must eat quite a lot of the correct fruits and vegetables. Otherwise there is no fibre. eat lots of Melons. Banana, papaya, soft cooked beans. Dates. Prunes. Fibre cereals with nut milk. Leafy greens. Eat lots of soaked nuts and drink lots of cleansing teas.

    This should work. Yes stay away from dairy and gluten products.

    Www.coconutandwhat.com

  • Thanks for the reply. If I eat any fruit or veg I get worsening of symptoms. the same with any kind of beans! What can I say? I am obviously an awkward one.

  • Beans are high fodmap as are many fruits and vegetables. Have a look at their safe list of fruit and vegetables. I eat banana, blueberries, strawberries, spinach, said, tomatoes...so there are still lots that are ok

  • Have you tried acupuncture. I'm not saying it can cure you but I'm sure it could help ease your symptoms.

  • Hi Debbie I too am in the same boat as you chronic wind (burping) but no pain just discomfort I have tried many pills and potions over the years with little success and currently am taking Sillicolgell a Boots product with some success Occasionally I have days without the problem but they are few and far between

    I do hope your exclusion diet works for you

    Alastair

  • Hi debbie,

    Im sorry you are are having such arough time. Iv sufferd with ibs 20+ yrs.

    i can only suggest more water, more exercise and give foods 48 hrs not 24hrs.i take normacol for C and def helps. stopped cows milk and cheese, and al wheat and been ibs free for 6 days. longest iv been all year. i take mebeverne before meals and low dosage amytriplyene. i mainly get "d" or severe abdominal pain.occasionally bloated .

    buscopan help with my bloating and so does windeze. otherweise its heat and rest.

    codeine if pain keeping me awake.

    had lactose an upteen tests years ago nothing found.

    had read chewing gum can make bloating worse.onions,sultanas and mushrooms a no no for me.

    shame cos i like them all!

    hope something here helps

    gff

  • Hi girls. I ve had IBS for some 30 odd years. Used to be just few days at a time. But now it's lasting weeks , even months at a time. Awful stomach ache going up the right side always. Wind both ends and D. Seen Dr s over the years and had numerous tests and checks. Even admitted to hospital couple times. Feel so down and worried. Sorry to rant on but I get so worried even after all this time . Is it really just IBS. Feel better just confiding in you all. Thank you . Gloria x

  • Have you looked into the Fodmap diet? After suffering IBS D for years and years I am finally symptom free. You start with the elimination stage until your stomach heals and then slowly add a food in to test it. There is loads of information available online and the Monash app is brilliant to help with safe foods, portion sizes etc. It's the only thing that worked for me,,,,and I tried everything!

  • Having suffered ibs c and d I know how you all feel, I ended up with

    having part of my lower bowel removed as a consequence of c. Beware of that, its changed my life completely and not for the better. After 6 years

    Im only now getting to grips with it and finding ways of coping. You must

    have fibre in whatever form you can manage, linseeds on cereal or

    porridge are good and keep up fluid intake. I found Fodmap good as a

    way of directing you to foods which should help. The d is another problem

    which is hard to deal with and its hard to find out which food is causing

    the problem as it seems your stomach reacts to everything. Ive recently

    started taking Apple Cider Vinegar which Ive found to be a life saver, but

    i accept that it may not help everyone.

  • Why did you have the bowel removed, was it due to an obstruction?

    I'm convinced I get partial obstructions & when I do I stick to a low residue diet, sometimes only consuming liquids (yet im gaining weight rapidly!)

    My tummy is in so much pain I may also try only porridge for a day or two.

    I usually alternate between C & D with extreme bloating and nothing seems to help it! I posted more on my into post, if anyone can offer insight I would be hugely grateful!

  • Yes I have had two food intolerance tests. One came up with loads of foods, but I can honestly say sticking to that made no difference whatsoever. The next one said no dairy which I also stuck to but made no difference. I saw an NHS dietitian about 5 times but they said in the end they didn't think it was food related as I had symptoms every day and it didn't improve when I removed wheat. I will try apple cider vinegar though. How do you take it (assuming it's horrible)

  • Hi, Ive had ibs for 50 years, it used to be called spastic colon, I had it

    in stops and starts at first, but it progressed and became more aggressive.

    I do think stress plays a large part and I have always had a nervous stomach when Im in any kind if a tense situation, I dont think I drank enough as in those days, you had a drink if you were thirsty, nobody

    walked round with a bottle of water in their hand. When c was a problem

    I was unsure what to do and pretty much left things until eventually you

    go, of course I did a lot of 'straining' to try and help things along. This is

    a big mistake, and should be avoided at all cost, but there was absolutely

    no help or information and I never knew or heard of anyone else having

    it. Personally I also think that having a difficult birth with my first child

    didnt help. I started feeling discomfort below, and I honestly thought I

    had Piles' and thought, no problem, went to the chemist and after a few

    different medications during which the discomfort grew, I went to my

    GP, She examined me and said, no problem and gave me medication,

    three or four different lots over the course of the next few months and

    still no joy. I was in such pain eventually I was bleeding quite a lot and

    had to come clean to my husband, who whizzed me to our GP and asked

    to get a referral to a consultant. To cut a long story short, I ended up at

    the wrong consultant, because my diagnosis was wrong and what I had

    was prolapsed rectum. I had gone privately because my problem had got

    so serious, so ended up paying 2 consulation fees and the condition had

    deteriorated in that time. The doctor later said sorry, but its not an exact

    science. The surgeon said the only thing he could do was rectum removal

    so there was little I could do or say. The only advise I got was 'take immodium' which was absolutely, totally of no use at all. If you take it

    stops you altogether, so I have been searching for an alternative for the

    last 6 years and Apple Cider Vinegar has proved to be a life saver for

    me in that respect. My other problem was really bad stomach ache and

    bloating and hand on heart since I started taking ACV I havent had it once.

    I always had to have a hot water bottle in my stomach at night. I dont

    think for a minute it will solve everyones problems, but I do think its

    worth giving it a go, if other things havent been successful. Whether

    this is your problem would not like to say but do get it checked out, and

    my story proves that its a good idea to get a 2nd opinion.

  • Hi Shirlygirly,

    I'm really interested in what you say about the ACV. I have had similar problems to you (without the bowel surgery) & get a lot of general aches & pains in my back & abdomen especially after a BM. I have a rectocele & must avoid constipation. Am wondering if I should try the ACV.

    Can I ask how much you take & how long was it before you noticed a difference? I did buy some Aloe Vera juice but have been too scared to take it after reading negative reviews!

    Thanks.

  • Thanks for the response. I will try the ACV. The pain and bloating you describe sounds just like mine.

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