Given up asking for help

Hi I'm new here but wanted to share where I'm at. I've suffered with ibs for about 9 years. I was dismissed on a number of occasions from my dr. Being told it was all in my head. I have a very stressful full time job and am a mum and wife so have a hectic life. I have learnt to try and avoid situations I know I will have problems with but this has caused endless arguments at home - I struggle with long car journeys due to always needing the loo and as much as he try's to my husband just doesn't get it. I decided to go back to the dr in Jan and get some help - what did he do - put me on anti depressants - I'm not depressed I just struggle leaving the house without needing to go to the loo about 15 times!! I have now resorted to coping by taking Imodium after I promised myself I would never do this. I've tried 3 different dr's in the same surgery and none really seem bothered. I suggested maybe I have an intolerance to something and was told that it would take months if not years to determine that.

Is anyone else tired of trying to get help!?

Sorry - thanks for listening/reading

26 Replies

oldestnewest
  • Hi there,

    Do you think you can ask to see a dietitian - can take a while to get an appointment but might be the way to go if your gps have no clue!!

    Start a food diary for a week before you go and what symptoms you have as well. That will be a start for them to get a clue what's happening.

    Allergy stuff gps seem not to really understand and it costs a lot for tests so they shy away from that.

    Hope that's some help!! I totally get it when it's stopping you getting on with life and having to take other people into consideration - I'm lucky my husband is really understanding but he says he does get frustrated at times if I get an attack and we have to cancel plans. Then I feel guilty!! So your not alone x

  • Thanks Jane yes I think I'll look into that thank you x

  • I sympathise, I've also had IBS for about 9yrs, went to gp YEARS ago with symptoms, he did a blood test - negative (didn't say what he was testing for) said he didn't know what was causing the pain and severe bloating. I went again several times in last 9yrs he said he didn't know what it was.... I was in agony, saw different GP - 2minutes later after describing symptoms- you have IBS... so NOW I know I can try Mebeverine, and look up what can help etc.

    Some gps are impatient and do not care enough to listen and help.

    Latest Gp said try LOW FODMAP DIET look it up on Internet - that was it. Most of my help has been off the Internet. FOOD DIARIES are a life saver to work out what irritates your gut, everyone is different with different symptoms. And I find EACH DAY can be different depending on combinations of foods, And QUANTITIES of food tolerated ie. more than x2 wheat biscuits- Pain. Certain combinations of food on a plate - pain but singly the food is tolerated okay. I think with me it's trial and error.

    Some days I really do not know what I can eat as the fear of agony scares me. Unfortunately this lack of eating for a few hours - equals pain too for me. Best lesson I've learnt is be your own researcher and record your findings.

    Hope this helps a tiny bit.

  • Thanks so much for replying Sam - it's a constant battle isn't it! I wonder how I manage to leave the house some days x

  • Can I suggest you have test for Dysbiosis , also go on 2 garlic tablets in three morning strong probiotic in the evening and remove carbs from your gut as bad flora feeds off it am ferments. Quite hard going carb free but so worth it 😊

  • Hi Sam,

    I read these emails and feel so bad for everyone. I, too, dealt with that for pretty much my entire life and found something about 10 months ago that changed my life. I was pretty skeptical because nothing else worked. These are a probiotic and a magnesium supplement that are, in my opinion, nothing short of miraculous! Please let me know if you'd like more info. bethelisecurley@gmail.com

    Best,

    Beth

  • Hello,

    Just wanted to say you are not alone. I am currently going through another spell of pain and stomach problems. I also have a hiatus hernia.

    I have had IBS for as long as I can remember and am now 57. I have had really bad flare ups over the past 7/8 years. I have been told it could be attributed to stress/menopause then back again to general IBS. I was sent for a camera down my throat eventually and found to have a hiatus hernia.

    Most of my information is through research on internet.

    I meditate, rarely drink, exercise, try not to eat after 6. Avoid spicy food and anything with pips or tomato. I have found that drinking warm water with manuka honey last thing at night soothes my throat from acid reflux.

    I wake up in the night sometimes in pain and sweating:other times I feel shivery. I find Omaprazole helps when ranitidine doesn't.

    I try to cut out glutton. Gave up bread ages ago which did help. Went from dairy to soya but now soya seems to upset my stomach. Oh I have also cut right down on tea which also seems to be helping.

    You have my sympathy. .Had a blood test for celiac and crohns but they came back negative. A second referral for a camera down my throat 2 years ago was supposed to also include a biopsy to test further for crohns but they decided not to do it as everything looked fine.

    I just wish people understood how hard this is to live with especially when you are so tired and working.

    So my top tips are no alcohol/tea/coffee finish eating as early as possible. Don't know if the meditation helps but it helps with anxiety over the IBS.

    Good Luck

  • Thank you for replying Diane - I don't drink alcohol or coffee but I'll try and cut out the tea to see if it helps. Thank you x

  • Hi Diane,

    I keep reading these stories of gastrointestinal dysfunction and shake my head. For years I dealt with these symptoms - and more! My girl friend suggested I take a probiotic and magnesium supplement and recommended two specific ones. Skeptically, I began taking them, knowing the'd never work. Lo and behold they did!! My symptom began to disappear and 10 months later, I wish I had started years ago! Please let me know if you'd like more info! bethelisecurley@gmail.com

    Best to you!

    Beth

  • I know how you feel,I have suffered on and off since my teens,I am now 63.

    I have had every test going in fact I am due to have another flexible sigmoidoscopy in 3 hours.

    I am lucky,I don't suffer with any pain,just the urgency and associated panic with needing the loo,but I do know that in my case stress is a major trigger.

    Travelling is almost impossible, and I have not traveled abroad for many years.I do take Imodium for car journeys,but even they are kept short maximum 2-3 hours.

    My husband is the one who suffers,which I find heartbreaking,he would love to travel but the thought of being on a aircraft and needing the toilet is frightening.

    My sigmoidoscopy today is because I have had small blood spots a handful of times over the last year,hopefully nothing serious.

    Because I had given up on my small village surgery,I paid to see a private consultant for a second opinion,he has suggested hypnotherapy and CBT,which which I am going to look into,once I have the results from today.

  • Hi thanks for replying. I too have minimal or no pain just the urgency. I have to force myself to travel as I have a young daughter and I want her to see as much of the world as possible - I'm sure boots wonder why I buy a pack of Imodium every day before I go though. It's the only way I can get through it. If you go with hypnotherapy let me know how you get on as it's something I though about trying. Good luck today x

  • The sigmoidoscopy took longer than expected as he found and removed polyps,he could not remove them all so I have to go back and have a colonoscopy.

  • Hello. How did you get on. I am waiting for an urgent referral for another have one done. I was going to go private but then my GP said she would refer me as an urgent case due to the weight loss. Just waiting to get this next step out of the way.

  • Please don't give up trying. You maybe need to find a whole new doctor's surgery where they can't see any comments written by the other doctors you've seen there. Get a fresh new view. Of course you will discover what the problem is. It is not right that you were told it would take a long time to find the cause. It could be very simple - dairy is a common one. Try the low Fodmaps diet for two month sttictly. And then very slowly reintroduce foods one at a time under guidance from a dietitian. Shepherd Wotks is s good site to check out. I have her book.

    ALL the best.

  • I agree with what you say about getting a fresh new view! The doctor stops listening after a while, and if you see a new one, dont take your notes with you. I am sure they mark it with something that only drs know, and suddenly the new doctor treats you the same.

  • Hi there! Can I suggest you ask for a test for Dysbiosis! It is when there is too much bad flora in your gut and bowel. The other thing to try is 2x garlic tablets each morning and a STRONG probiotic each nite. If you can cut out carbs also for a couple of eeeks you may see great improvement, bad flora lives off carbs and sugar. Have 2 eggs for breakfast, a few nuts for morning tea with your drink, salad cottage cheese fish or meat for lunch and meat or fish with lots of green Veges for dinner. Wishing you well ps it took me 4 years to finally get diagnosed after paying thousands for tests and specialists, sooo well now.

  • I had a lot of trouble figuring out what foods were triggering my worst flares of IBS. I used to drive a lot for work and would find myself having to pull into the side of the road, crying in pain, because I couldn't keep control of the car when the cramping started. And then there was the speeding to find a toilet in the next 5 minutes... It was hell.

    My pharmacist put me onto the Cambridge Food Tests. It's a food intolerance blood test that you can do yourself and send off for results. I got the results back in 14 days and I started cutting things out and the cramping eased off massively. Not totally but it was massively reduced. I still get outbreaks/flares and I'm tempted to get another one just to see if something has changed but I really can't understate how much this helped me.

  • Really interested in this Cambridge food test - do any pharmacy do it? You do it yourself? How does it work?

  • Some pharmacies seem to but only rarely. You can do it yourself in two ways:

    1) get a home kit (food detective) which you do the whole test yourself

    2) get the blood kit, take your own blood and send it off (it's a finger prick test that you pop in the mail)

    Results come in 14 days and tends to give you variations on intolerance from none to mild to severe. Mine highlighted things like potatoes, yeast, dairy, eggs and gluten. I'd worked out dairy from a food diary but a big portion of my diet was either potatoes and bread/pasta.

  • Thank you

  • It may or may not help but when I first realised it was taking over my life I visited a complementary therapist who did some testing and said I was intolerant to wheat and gluten. I gave up everything that had either wheat or gluten and the suffering stopped. I still get occasional bad bouts but very rarely and nowhere near so painful. I never went down the road of testing for coeliac disease because to get an accurate diagnosis you need to actually be taking wheat or gluten at the time of testing and I don't want to go down that route again ! Good luck, it's a very isolating condition.

  • Hi Daisyduk3,

    Well that just stinks! So sorry for everything you've been going through. I, too suffered for years and years. After years of doctors and tests I found excellent relief with some products that heal from the inside out. They address gut health. Please email me if you'd like the info. I'd be thrilled to share! I hope you feel better soon! bethelisecurley@gmail.com

    Best,

    Beth

  • I know just how you feel.

  • Hi OP. I feel for you. I'm not going to bore you with a long post on here, but IBS = impaired digestion = blocked bile ducts. Do you have any other symptoms? I cured mine using Andreas Moritz's book The Amazing Liver & Gallbladder flush. I cannot reccommend it highly enough. In fact it probably saved my life. IBS is caused by incomplete digestion - bacteria are left having to do the job that should be done higher up by stomach acid, enzymes and bile. If you need anything further don't hesitate to reply, but a few flushes and better eating habits should cure you. Emily xx

  • It took me 10 or 11 years and countless tests and self-experiments before I finally got a diagnosis and some helpful solutions. The low-FODMAP has been a game-changer for me and has given me so much of my life back. I've also been prescribed loperamide (similar to Imodium) and that has also been really effective. I'm on anti-depressants too. Even if you don't feel depressed they may well help because there are so many close links between IBS and symptoms of anxiety/depression. And it sounds cliche - but stress management! So important as rushing around and being stressed all the time will have a massive impact on digestive health. Learning to slow down and stay calm and take care of myself has been one of the most helpful things for me.

  • Unfortunately I have never found a doctor or specialist who could help me with my chronic IBS. It took me years, but I have finally beaten IBS by myself. My blog may give you some inspiration: sickofibs.com

    Alison:)

You may also like...