Pain, pain, pain

Reading posts on this site has been illuminating. I have had IBS for as long as I can remember (I'm 66). Even as a small child I can remember saying I had a 'funny feeling and tummy ache' and doctors scratching their heads about the cause, which was never found. Over the years I've had barium meals, barium enemas, sigmoidoscopies and colonoscopies and apart from diverticulosis, nothing else to explain my symptoms has ever been found. IBS therefore is the diagnosis. Most on here seem to have 'flare ups' of their IBS whereas I have the severe abdominal pain 24/7 - I'm never, ever free of it. I don't have diarhorrea and not really severe constipation, just bloating, flatulence, gurgling, nausea and hard stools. My problem is the pain, which at times is unbearable. I used to work for a GP who always said the old thing - it's anxiety' and used to say that the only anxiety I had was the IBS! Having recently been on anti anxiety tablets, I can report no change! I met my husband when I was 14 and he tells everyone that he has spent all the years we've been together massaging my painful stomach and abdomen. Well that's got that off my chest. It's good to have people who understand, because if I tell those that do not suffer that I have pain ALL the time, I don't think they believe it can possibly be true. I'm going to buy the Irritable Bowel Solutions book, although over the years I've read everything I could get my hands on, but I'm always willing to try another book. I'm also going to try the Fodmap diet, but I'm not that hopeful, having tried all sorts of diets in the past. I'll let you know how I get on.

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  • Oh God thats sounds horrendous and fills me with complete fear ! My daughter is 11 and has had constant unrelenting pain for 14 weeks which has spread across her entire abdomen. How ever do you cope? Sounds like your hubby is a great support. My daughter cannot bear anyone touching her tummy - says its too painful. She too has been told its anxiety . Shes just not that sort of child but I agree that having IBS is enough to make you have it.

    Really hope that you find your miracle cure soon - pls share if you do !

    Regards

    JO

  • Hi Jo, I do sincerely hope your daughter's problem can be found and treated very soon. There is nothing more debilitating than being in constant pain. Good luck and please keep us updated.

    Regards Joan

  • Hi Joan thanks for your blog. We seem to have simular symptoms which although horrendous I am glad I am not alone. I read a lot of the blogs and think I am different although I am consently aware of my IBS (same symptoms as you) I have bouts of severe pain which flaire up from nothing. At the moment I have a surgeon trying to get to the bottom of it, recently had a lump removed from my stomcah which did not work so they are testing to see what else they can whip out!!! In the meantime I am booked in to go through the Fodmap and am looking at accupuncture. Funnily enough my doctor recently said it was stress related (again!!!) so I am on flexible working for now. Thanks for sharing!!!

  • Hi JuliaL, I really hope your surgeon finds something treatable for you. I hate it when doctors say it is stress, but to be fair to them, it must be horrible having a patient in such pain and you can find no proper answer or treatment for them. It's enough to make you stressed though!! I'll interested to hear how you get o with Fodmap and acupuncture. I had very successful acupuncture for an arthritic neck so I'm a believer in its powers. Please keep us updated on your (hopefully good) progress.

    Regards, Joan

  • Hi Joan, I am so sorry to hear how this has affected you for most of your life. And I know what you mean about trying every diet - I tried everything and was completely sceptical when I heard of the FODMAPS diet. However, I have been amazed how well it has worked for me, and it took less than a week for me to know! I wish you could have success too!

  • Hi Inndie, I'm so glad the diet worked for you. I'm away this weekend, but next week I'm going to start it. I've also bought the IBS Solutions book and will read that too. Fingers crossed and thank you for your good wishes.

    Regards, Joan

  • Have you tried physical therapy for ad pain? A real specialty. I was painfree almost a month, then I ate food at a Christmas party that set me off again. I'm trying FODMAP gradually. And waiting to resume PT. I found it was most effective and the therapist actually located what triggered (besides foods) the pain.

  • I mean AB pain! :P

  • No PatV I've never heard of PT helping IBS. How did you access this treatment?

    Joan

  • My GI (gastro?) doctor referred me. Since experiencing this, several massage therapists also have told me they were trained in this. .

  • Thanks PatV.

  • Hi,

    I left a post yesterday about the huge success I've had with the FODMAP diet. I used to have almost constant pain, gas, nausea and fluctuating mild d & c 24/7. I thought I 'd tried everything going to be rid of all, or even some of the symptoms, and had just about given up hope. Then Dr Read told me about the FODMAPs regime. I tried it and, much to my delight and amazement, it worked - and quickly too (in less than a week). I'm still tweaking things to make life as good as it can get, but even at this point (1 month from starting), I can report an improvement of 85%. Hope this helps.

  • Fantastic RozB, I'm so pleased to hear it - we don't often hear success stories from IBS sufferers!! I've not managed to get myself together yet to try it, I've had a horrible cold and not been out to get supplies in, but I shall start this week.

  • I can imagine how you must feel having tried so many things with no success. I'd just about got to the stage of cutting my own throat when FODMAPs came along in the nick of time!

    The info 'out there' is sketchy and contradictory in a lot of cases and many of the foods on the good-to-go lists give me a problem - and it's these I'm still sorting out. It's a real trial and error thing, but if you cut out all gluten, lactose and notably gassy fruit and veg to start with I'm sure you'll get a noticeable improvement pdq.

  • hi Joan, just wondered if you'd had a chance to try the FODMAPS diet yet and how you are getting on? It has helped me so much, I had the courage to try a yoga class last week, something I would not have done previously due to embarrassment! :-)

  • Hi Inndie, I started it on Monday and so far so good. The bloating has definitely lessened as has the flatulence,burping and hiccups! So far the deep pain I have in my lower bowel is not much better, although I also have diverticular disease, so that may be the problem there. Overall though, I feel better but it's early days yet and I'm loathe to say that the diet is working for me just yet. I'm very hopeful though and will continue with it as I'm not finding it too restrictive. So pleased for you, keep up the good work. x

  • It's not a cure, but it will keep us well until they find one! ;-)

  • It's not a cure, but it will keep us well until they find one! ;-)

  • Hi Joan I m so glad to hear of someone else with pain and discomfort most of the time. I m the same having had stomach ache acid reflux and back ache for few months now. Normally my ibs comes and goes but this time its mostly always there. I ve got to have a colonoscopy. My Dr says its ibs but wants to rule out other things to stop me worrying. Im really stressed and now of course worried about having that done. So glad to have found this site. Makes you feel you re not alone with this awful illness. Thanks everyone.

  • Jazzyjoan, your story rang a bell with me. I've had ibs for over 40 years, different symptoms at different times. For the last few weeks I've had a lot of pain, especially at night, which is new to me. Several nights a week I don't get much sleep. I've tried all the usual things. I did an elimination diet which suggested improvement with gluten free, but it didn't last. Thinking about acupuncture, hypnotherapy, yoga! I hate being told it's due to anxiety, any anxiety I'm suffering is due to ibs! Thankfully my pain is not 24/7, so I feel for you.

  • It's so lovely to be on this forum and hear everybody's stories and problems. Sorry to hear from those of you who have similar problems to me and who have not found any solutions. I know the feeling, although I THINK Fodmaps is working for me to an extent. It's early days yet so I'm getting more hopeful. I would urge everyone to try it - it's not very restrictive and anything is worth a try!!

  • FODMAPS is definitely working for me and it's wonderful!!! For the first time for as long as I can remember, I am not aware of my digestive system!! Previously, I always had pain or bloating or flatulence or hiccups or all sorts of other symptoms, but now, most of the time I don't think about my stomach at all. I urge everyone to try it and let us know how you get on.

  • Reading my post above, I realize I was a little premature with my comments!! Since I wrote that, I have had some bad days, mostly with bloating and gassiness - the bowel part of my problem is better, no constipation and less pain, but my upper digestive system is still dodgy! Some days the flatulence is bad, so I'm now keeping a food diary to see if I can identify something that could be causing it.

  • I meant to say - I was reading in the paper this morning that a lot of people suffer with flatulence and a gassy stomach due to sitting crunched up when eating or straight afterwards. If you sit on the sofa and watch TV or something while eating, you may be causing the problem. Try sitting at the table and see if this helps. Anything is worth a try!!!

  • Hi i'm so pleased iv'e found this forum. Its taken a lot for me to write. I have suffered in silence about my IBS all my life. I also have been to several doctors who dismissed my condition as being all in my head. fobbing me off with peppermint capsules. After reading all the wonderful comments about FODMAPS I went armed with all the information to yet another doctor, and to my surprise she had heard of it and said the dietitian has just finished a course on it. For the first time I felt I was getting somewhere!! My app is on the 11th April so fingers crossed. My symptoms are stomach pains,bloating and horrendous flatulence! I have tried do the fodmaps on my own but am finding it a little difficult, Iv.e cut out wheat, onions and all carbohydrates but still am windy!!! what else can I do? anyway thanks for being there. sorry this is so long but i'm not use to talking about IT but i'm glad I have.

  • So sorry to hear your problems mitchg, sounds very similar to my own! I've cut out gluten and lactose by having gluten free bread and cereals and lactose free milk and yogurts. I've also cut out apples and stoned fruit by having bananas and satsumas instead. I've also started making sure I sit up very straight whilst eating so that my stomach isn't scrunched up. I have had varied success with the diet so far, but overall the flatulence and bloating have definitely improved. Good luck with the dietitian, I hope it goes well for you. Please let us all know how you get on.

  • Hi jazzyjoan thanks for replying I think my flatulence is also down to stress. why oh why is it when I'm in meeting or feel I'm in a vulnerable situation I feel it could happen and sometimes does!! I feel awful and think to myself why me. When I'm not in a stressful situation it doesn't seem to happen. Thanks for the advice on gluten free and lactose I have in the last 2 weeks tried gluten free bread the verdict is still out on that one I've tried M&S,Waitrose,Sainsbury.and they all taste bland and feel heavy.I.m enjoying the lactose free milk have not been able to find the yogurts but will keep trying. What do you think about soya milk and yogurts? not sure if it makes IBS better or worse! Thanks for being there everyone, it really does help having a chat!

  • Hi mitchg, I agree that stress plays a part. When I was at work I suffered like you do in meetings and stressful situations, but I'm retired now and have a far less stressful life, but even so it always seems to happen when I'm around other people! I agree the gluten free bread is not very nice, it's heavy and not very tasty. My favourite is Sainsbury's Freefrom seeded loaf, which is marginally better than the others. I also have rice cakes, which I quite like, they are bland but I put a smear of tomato chutney on them with some grated cheese or ham for a light lunch or breakfast. You can also have Rice Crispies or Cornflakes if you want cereals. As for the Soya yogurts and milk, the Fodmaps diet excludes Soya, so I suspect they are out of bounds. I've found my local Sainsbury's is stocking the Arla Lactofree yogurts again and Ocado have them. They freeze very well, so I buy in bulk and freeze them if they are getting near the use by date. I've also been experimenting with the sitting up straight at the table for meals, as I read that people with oestoporosis who cannot straighten up suffer with bloating and flatulence so I thought I'd give it a try and it does seem to help a lot. One problem with IBS is that you tend to have bad days and better days, so it is hard to judge what is causing or helping the problem. The pain and constipation levels I have are not much different, but what seems to have changed is the bloating and flatulence, which are definitely better. Stick with what you're doing until you see the dietitian, I'd be very interested to know what she has to say!

    I agree, having a chat very definitely helps!!

  • Thanks jazzyjoan for your comments. Oops! maybe I should stop the soya, I feel its a real minefield, what to eat and what not to eat thanks for the advice on sitting at the table I will give it a go. Lets face it this weather isn't making life any easier roll on the summer when we can have plenty of salads and a stroll round the park! Will let you know if I have any luck with the dietitian.

  • IHI mitchg, I forgot to say there is a very useful book you may not have read, it is 'Irritable Bowel Solutions, the Essential Guide to IBS its causes and Treatment' by Dr John Hunter. Amazon sell it for about £8. It has questionnaires to help discover your variety of IBS and possible treatments. Definitely worth a read.

  • Hi jazzyjoan thanks for the advice have just ordered the book by Dr John Hunter on Amazon I also went to the doctor today, my results of the blood test came back and every thing is ok except for my cholesterol level is high. she agrees I have IBS (which is what I told her before the blood test) and am waiting to see the dietitian next month. Will let you know the outcome. She also gave me a very low dosage of Amitriptyline tablets 10mg, have just read the leaflet and the tablets contain lactose I just cant win!!!

  • Oh dear, lactose is an important thing to leave out on Fodmaps, but two things; a very small amount shouldn't be a problem and there can't be much in a tablet I wouldn't think - it's not like drinking milk or eating yogurts, or you can buy Lactase tablets which replace the lactase which your body is not making. You take one if you are going to be ingesting lactose, so perhaps 1 with your Amitriptyline tablet may be an answer. Probably best to discuss this with your dietitian when you see her. You can buy Lactase tablets from Holland & Barrett or any other health food shop. Good luck. Joan

  • Finally. for all my life I have had a pain in my stomake and just like you the doctors couldn't find anything. This is the first post I have seen that I can relate to for all the others the pain just suddenly appears. I don't remember a time without the pain. If anything helps please reply to my cooment it would be a huge help to fix this problem

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