I need some help and advice as im struggling and doctors are not helping me, which is upsetting me now

I got diagnoised with severe ibs d on the 24th march 

I suffet from awful stomach pains every morning i wake up followed with diarrhoea or in the day sometimes which makes me want to keal over when they start im currently taking colofac morning and night, colpermin in day if any flare ups and amitriptyline at night if needed.

Im drinkin green tea and water ive cut out greasy,fatty,high sugar foods ect and still its not helping and still getting pains.

Plz some one help me or give me advice i must sound like a drama queen or moaner but i cant cope no more and just dont know what to do. 

31 Replies

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  • Hi Shaz, you might just think about trying a grain free diet for one month...it is the ONLY thing that helped me. Not saying its easy (mentally, because we are SO addicted to our comfort food which was usually made from grains)...and it takes some getting used to, but it was either that or the misery that was caused like you were describing... this means ALL grains (gluten free never has done a thing for me...) ... So basically you just eat veggies, fruit, and meat (AND you can have wheat free ice cream!) so its not total torture! :) Plus, if you are ambitious enough, you can bake cookies, etc, using pecan or almond flour.

    Try Googling "Wheat Belly and IBS" (if you care to and get a bit curious)... talks quite a bit about it clearing up folks IBS.... Good luck to you!

  • Im willing to try anything i just want these pains to stop and et bk to my normal self x thank you for your advice x

  • I removed all grains, gluten ect lactose, and I still have problems.

  • Hi. I was the same until the doctor printed me off the patient.co.uk ibs info. Worth a read. I went gluten free and dairy free plus free from everything else that could be an issue with ibs. I am gradually re-introducing dairy and other things with success. Gluten seems to be my bug-bear still though. Hope you are feeling much better soon. 

  • Thank you very much ill try find out that info x

  • Sorry to hear of your pain Shaz but may I ask what tests did your doctor give you to diagnose IBS?

  • Blood tests and also e just askd my symptoms x i just want to feel back to my normal self x

  • Blood tests cannot really tell the Doc what is going on in the bowel only a colonoscopy can.  If your tum does not settle down go back to the Doc and ask for this test.  If all clear after test then you can sit back and do elimination tests like other fellow sufferers and then slowly reintroduce foods slowly and see if there are any side effects.  Wish you well x

  • Thank you and yes i will try that x 

  • Your experiences sound awful. How long ago did you first notice your symptoms?

    IBS is a really complex condition to treat and sadly not all doctors are familiar with the latest research. Even if they are, this still might not be enough to help you.

    With regards to medication, it may take a while to find a drug (or drugs) that work for you. There are a series of medications you can take (with the potential side effects getting greater) so there's a chance that if some drugs aren't working, others might.

    Diet can also be a major factor in IBS. I found that cutting out greasy and high-sugar foods like you have done helped a little but not completely so then I started on the low FODMAP diet (https://patientj.wordpress.com/low-fodmap-diet/) - it didn't clear things up entirely but has helped me, over time, find some of my trigger foods. I also noticed that *my* symptoms got worse, but I now suspect that was partly due to supplementing my diet with soy-based products which I feel can make my IBS worse if eaten frequently.

    The biggest factor for me, though, was anxiety. It wasn't until late last year, when I went to see a therapist for something else, that I realised how anxious I was all the time, and how long it had been going on for. I'm now seeing a different therapist and have found that, along with CBT and a regular course of citalopram, I am seeing improvements in both my IBS and anxiety. It sounds a bit like you're at your wit's end and, if so, it could be that your IBS isn't getting better at the moment because of anxiety.

    In short, I'd say don't blame your doctor. Yes, they can be more sympathetic but the high stress jobs they lead can often make it hard to keep up with all the latest and changing developments. A repeat blood test in a few month's time might be advisable just in case the first one missed something, but a colonoscopy probably isn't necessary unless the blood tests show signs of inflammation. Check out the NICE clinical guidelines for more information on the types of drugs recommended for IBS - nice.org.uk/guidance/cg61/c... - this isn't exhaustive but if you can work through this with your doctor, as well as trying to address any anxiety (if you think that could be an issue) and trying out some dietary changes, you may learn enough to help you manage your IBS.

  • I gt diagnosed on 24th march but i ended up in hospital 2yrz ago wid same syptoms and they culdnt find anything n they went nah they are back n been docz n got diagnoised with severe ibs d from blood test and doctor askin me my symptoms x

    Thank you very much 4 ur advice and help

  • I don't think IBS can be diagnosed without a colonoscopy and a gastroscopy as there are other conditions that could have similar symptoms

    Go back to your doctor and ask to be referred to hospital - if no joy then ask for a second opinion

  • I will do and thank you xx 

  • Cook vegetables and avoid those with fibre,soups a good idea

    Try Colpermin or spoon of olive oil before meals

  • I will definately try this x thx 

  • Cut out the green tea, it has a laxative effect. You do need further tests to check for ulcerative colitis, a colonoscopy would be useful.

  • Thank you

  • Have you thought of cutting dairy? 

  • Im already lacto intolerant so i cant have dairy anyways  i ave to have lacto free things xx

  • I'm dairy and gluten free now for a few months and I've noticed a massive difference. I would suggest that you get the gastroscopy and colonoscopy to rule out anything else, don't eliminate anything until after the test though! 

  • Okay ill go bk to my gp and ask them to investigate further x thank you

  • I understand I suffer the same way , and my dr is not really helping me at all , just keeps switching my meds ,then I have new side effects. I don't think your  a drama queen at all, I am thinking about filing for disability. as I miss so much work with no pay.

  • I currently am on employment support allowance atm from the job centre because i cant work atm due to the pains when they start xx ive woken up today and im full of pains xx just feel completely fed up xx

  • Hello,

    I am new to this site and just posted my first post today.  Sorry to hear about your condition, I really hope you start to feel better soon.  I know how awful it is to be feeling unwell all of the time. One bit of advice I might have for you is to maybe replace the green tea with something else, such as peppermint tea or ginger tea. Green tea is good for you, there is no doubt about it, but I actually think it is not so good if you are suffering from stomach issues. One drink that is apparently really great is hot water with a bit of lemon juice, a tiny bit of turmeric (it's an indian spice), a bit of cinnamon, a bit of ginger. You can add honey to it if you like to. Someone recommended that to me when they had a lot of tummy problems.  Give it a try, you never know :-).  See if you feel better without the green tea.

    Best wishes

  • I will try that i lyk lemon in hot water with a little bit of honey so yes i think ill cut dwn the green tea to about one/two a day only x thank you

  • Hi Shaz,

    I had a similar experience with my GP's (I moved a few times). As others have said, it is quite complex and what works for one doesn't work for another. I have had two Sigmoidoscopies, about 15 years apart, because of bloating and diarrhoea; the latter had a diagnosis of Diverticular Disease, a condition that causes diarrhoea too, but IBS was the original diagnosis 15 years ago. At the time, the best advice my GP was able to give me was to drink peppermint tea, "it wouldn't help the IBS, but it may help make the farts smell nicer!" So I suffered in silence (with the occasional trumpet).

    I turned to diet for the answer instead of medications. So, I read numerous books, blogs and reports on diets and autoimmune conditions, which lead me towards a Paleo influenced diet that includes homemade probiotics such as Milk Kefir, Kombucha, Sourkrout, Kimchi and other fermented vegetables. I have been influenced by Gillian McKieth (You are What You Eat) and Terry Wahls (The Wahls Protocol - A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles). However, my favourite cookbook/guide at the moment (because it is for the British market and fits in with many of my conclusions) is The Paleo Primer - A Jump-Start Guide to Losing Body Fat and Living Primally by Keris Marsden and Matt Whitmore. I have several other cookbooks, such as The Art of Eating Well by Hemsley & Hemsley, that do not claim to be Paleo with many Paleo friendly recipes (I have a bookcase full). I also have fermentation books by Sandor Katz and Sally Fallon that have been useful for getting large quantities of probiotics that are more effective than tablets. I found Patientj's blog interesting, especially 'The future, FODMAPs and me' bit, to which I can relate. There are similarities between the FODMAP and my current diet. However, there are also differences and I feel confident that a varied meat and veg diet that only limits consumption of some foods and omits certain grains and all 'processed' food will provide a balanced diet. Common sense I know, but you need to feed your body with all the nutrients it needs to be able to look after itself and exclude the things that harm it. So, I have learnt to cook better and choose restaurants wisely.

    Now, after much trial and error, I have a routine that works most of the time. 

    I start my day with a teaspoon of Montmorillonite clay in a cup of water, followed half an hour later by an infusion of spices and lemon, followed an hour later by a cooked breakfast and then two hours later a probiotic drink of kefir and banana. After that, I mainly eat large amounts of vegetables, fish and meat. I avoid gluten and lactose (rarely drink pasteurised homogenised milk, but fermented unhomogenised milk and cheese are consumed every day).

    The Montmorillonite Clay is a mineral supplement that is meant to be good for detoxing and diarrhea. If you try this be sure it is edible and not cosmetic clay; I use Terramin Montmorillonite Clay which states it is Edible Minerals in big letters on the container.

    The spiced tea has antibacterial properties that are helpful in combatting small intestine bacterial overgrowth. I find this works well in conjunction with the clay. However, they are best taken on an empty stomach, hence the 30-minute gap.

    To make 2 cups of the spiced tea I mainly use:

    Grated ginger (or ground if I don't have any fresh) - 1 tsp

    Ground turmeric - 1 tsp

    Cayenne pepper - 1/8 tsp

    Ground black pepper 

    Ground cinnamon - 1 tsp

    Sometimes I'll add other spices to vary the taste, and I let the spices brew for 10 minutes in a cafeteria before adding the juice of half a lemon to each cup.

    I ferment my own Milk Kefir so that I have a constant supply. It is drinkable within 6 hours, but I like it to keep going for 24 or more so that there is almost no lactose left. If I can't consume it all, I'll make soft cheese with some and give any surplus away. I also drink Kombucha tea and other probiotic drinks. 

    If I stick to this most of the week, I can be a little carefree at the weekend and not be too bad on Monday morning.

    I don't know if that'll help you, but I thought I'd mention it all anyway.

  • Thank you very muchanythink everyone suggests im willing to give a try xx just wnt to get bk to my normal self xx

  • i understand I am the same way. I just started amitriptyline at night low does I don't notice a difference as of yet. I have missed numerous days of work and feel like my dr just doesn't care, iam seeing a new gastro early june, I hope he can help me, I also hope you get the help you need.

  • Fingers crossed for you im hoping they sort me soon xx and bein refered to hospital to see some1 hopefully xx

  • I had green tea once and it gave me an upset stomach. Most herbal or fruit teas do... Also until I started on daily Loperamide and Omeprazole I couldn't eat anything like peppers, tomatoes, soup, fruit, juice, nuts, some sauces etc. There was so much I couldn't eat. The medication has given me so much freedom to enjoy my food now. Hope this helps!

  • Im currently taking lopermides xx and making a dairy of everything i eat and drink xx being refered to hospital to see someone and might find out more hopefully xx as still taking my amitriptyline and colofac and onli colofac seemz to be partly helping and a colpermin tablet when needed x

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