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Nothing helping with IBS - Please help

Posted , 7 users are following.

kinder145101
kinder145101

Hi All,

I seem to have constant IBS, on top of that I've got GERD as well and trying to eat for both - though to be fair I think one can cause the other.

I'm eating pretty much nothing, I"m alway starving.

No bread, pasta, no onions, tomato, cheese, diary - though I am drinking milk.

I do eat Oats but that's the only grains I'm having - otherwise it's Paleo/AIP Paloe diet plus low fod map and trying to avoid GERD foods too. It's ridiculous.

My poop is always no 5 on the bristol chart, or constipated and occasionaly runny.  I've had this though for years, I get maybe one or two days a year where it's a nice poop, you know the types .. no 4 feels great and clean. ha ha  - sorry.

I'm at my wits end. The Dr wont refer me to a Gastro DR because it's not serious and they are under staffed etc in New Zealand.

I tried to get my stomach checked but again they wont as they don't think it's serious. I have stomach aches after eating something as benign as watermelon!!!!  Sometimes water gives me GERD.

I'm  a single mum, limiting to my diet to nothing, not even sure if I'm doing it right, everything tells me to do something different.

I eat salads, then I get told not to eat salads, potato then don't eat potato - I"m at my wits end I just want a normal bowel please!!

Any help would be so grateful.

0 likes, 19 replies

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  • michellelvj
    michellelvj kinder145101

    Posted

    Even if they think you don't need further testing, you clearly need help with symptom managment and dietary advice. That seems to be your biggest concern from your post from what I understand. I would push to he referred to a dietician. Have you seen one before? It is unacceptable to leave you struggling like this. Your diet needs to be nutritionally sound and it sounds like you are stuggling. I am so sorry. A very similar story to my own but I did get to see a dietician recently who is lovely and supportive and gave me so much advice. I was getting distraught about food (and I consider myself pretty well informed about diet etc but was still struggling) as it was just so stressful not knowing what to have and I was so worried about not having a nutritionally sufficient diet. Don't let them fob you off. Push forvthe help you deserve. X

    • kinder145101
      kinder145101 michellelvj

      Posted

      Thank you - yes you're absolutely right, it's more diet.... what can I eat and what should I avoid?

      I went to see a Naturopath but she was terrible.

      I, like you, feel like I'm well informed but again I get really stuck and eating now stresses me out!

      I guess I should go see a dietician and just pay the cost?

    • michellelvj
      michellelvj kinder145101

      Posted

      Exactly, we can do all the research we like but there are still contradictory/confusing pieces of advice. Your case is complicated as you have GERD too (I have this mildly also). It made a difference for me to have a chance to sit with the dietician and go through all of the questions I had and I came away with a list of meals I could have etc, so I felt more in control of the situation. It also reassured me to know I was being monitored for a time and that we were working on a plan that was going to work for me. You need tailored advice. I am not sure how it works in NZ (am from the UK) but before you shell out personally can your GP not refer you? There may be a waitlist but it is better than struggling indefinitely. I really feel for you here.

    • kinder145101
      kinder145101 michellelvj

      Posted

      I just rang the GP - there is a long waiting list and I want to be seen pretty soon, I'm kinda annoyed he didn't mention it earlier actually.

      Thanks though - good advice, go see someone.

      I'm trying so hard to do the right thing, but I'm always bloody starving as I can't eat carbs which I normally eat, I don;t want to lose anymore weight as I'm on the light side already plus I feed my darling 3 year old normal foods whilst I"m eating a silly bird food mela which doesn't seem to help anyway!

    • kinder145101
      kinder145101

      Posted

      Do you what, the other thing too is that I'm so over having to be so careful about what I eat, my favourite foods were macaroni and cheese and nachos, haven't eaten either for about a year, today I'm going to say f%4k it! 

      I'm eating that food and i don't care, i'm over this!

      Will update you tomorrow ha ha .- ps AND I'M GOING TO HAVE COFFEE!

    • kinder145101
      kinder145101

      Posted

      Love to hear what other people avoid though?

      Do you avoid pasta, I've got the IBS book and tells me to eat Pasta! No way I can do that - or bread ... really irritates my stomach and what the hell causes IBS anyway!!!  If everything is clear why do I have it?

    • michellelvj
      michellelvj kinder145101

      Posted

      Ha! You sound like me. I felt like a bit of a rebel! I am meant to follow low fodmap consistently but I find that I don't need to be fully strict with it always, so I just try to make sure the fodmap meals aren't in huge quantities or too consistent. You sort of need to experiment gently to see what's good and what's not. If you want to reintroduce foods, my dietician told me to do so slowly and one at a time noting symptoms over three days. If you see symptoms, you know to avoid.

      I eat brown rice pasta, which is gluten free. It is much better than the normal gluten free pasta as it doesn't get sticky. It tastes like regular pasta to me and is hugely satisfying. Can you eat rice? Not a huge bread fan generally anyway and don't like the gluten free stuff. But sourdough is meant to be better for IBS. You should download the Monash app. It is an aussie smat phone app from the uni Dr Sue Shepherd (founder of the low fodmap diet worked at. It is great for planning out low fodmap options and has lists of products and foods that are better to eat. My GP never bothered to tell me about it but my dietician did. It has been helpful as you have it right there in the supermarket. Makes life so much easier. Keep me updated and let me know if you have any other questions. I am not an expert but I can tell you my own experience. Xx

    • kinder145101
      kinder145101 michellelvj

      Posted

      Thanks so much Michelle - speaking to others who have IBS really helps I think... wish it would just go away. Though to be fair I have an anxiety disorder, went through divorce 2 years ago and i've had a flare up ever since.... will download that app - Dr's should be dieticians as well - should be part of their degree!
    • michellelvj
      michellelvj kinder145101

      Posted

      Same re the anxiety disorder. Seems anxiety and IBS just goes hand in hand. My IBS appeared a year ago totally out of the blue. It was totally debilitating and I was terrified that I had something seriously wrong with me. The Drs did nothing to reassure me or to help me get to grips with managing what was going on. It was pretty much, tests are fine you have IBS. That's not serious. Off you go!!! Wow, thanks, that is helpful!

      I still have discomfort daily but I have much better control of my symptoms and CBT for the anxiety has helped too. Slowly getting back to a place where IBS doesn't dominate my every waking thought! But yes, I wish like you I could wave a wand and make it go away. Sending you good thoughts and keep me up to date with stuff. Talking to someone who gets it definitely helps! Xx

  • carolyn32842
    carolyn32842 kinder145101

    Posted

    Hi Kinder and Michelle

    I am new to this forum but just read your messages.  Like you I am fed up with the excruciating pain in upper abdomen, feeling full all the time and cant eat so have been put on fortisips (Strawberry flavour 300 cals per drink).  I have lost a stone in the last year.  Been dismissed after loads of tests from my local hospital after being told there was nothing sinister showing, then referred to a neurogastroenteroligist who was a professor but could only prescribe Duloxetine and Pregabalin which spaced me out but didnt help with my problems.  Finally had a second opinion in December from a hospital outside my area.  Had an MRCP/EUS on Christmas eve and a Thorax to Pelvis CT Scan on New Years eve.  Made Christmas meal for all the family and I drank a fortisip and took morphine.  Still in excruciating pain, intermittent constipation/loose bowels and cant eat.  Tests have come back normal so I have been told I have severe chronic IBS, gastritis, non ulcer dyspepsia and pockets of diverculictum.  What the h..l.  Functional Gastrointestinal Disorder is being banded about.  I dont think there is enough help other than meds which kill the brain to kill the pain.  I could manage pain control but nothing helps with the horrendous full feeling and not being able to eat.  Cant go out for meals, or even drive my car due to being spaced with the pain meds.  Get up on a morning and struggle to get through the day.  Wish there was some help.  Dr going to refer me to a dietician but dont know when.

    Anyone have any answers would be greatly appreciated.

    • kinder145101
      kinder145101 carolyn32842

      Posted

      Hi Carolyn,

      wow let me just say, I'm sorry to hear that  - my symptoms are not as intense as what you describe but I bet you my frustration is.

      It's so hard, as answers would be great, why it happens, what in particular makes it happen, what to do?

      Instead the people of authority in the matter give you drugs which might help one part but then end up harming another!

      Surely someone must have the answers.

      What I kow - the brain and gut are connected.

      They call the gut the second brain .... we have nerves in our gut that react to how we are feeling. sometimes I can eat burgers and drink coffee and I'm totally fine, other days I can't even eat lettuce or drink water.

      Where is the corrrelation?

      I know I"m not helping, but surely someone can answer this!

      Why do I have IBS? Why does Carolyn have it and Michelle and how do we get rid of it...... anyone?!

    • meg29650
      meg29650 carolyn32842

      Posted

      Carolyn, I wish I had some answers for you, but my symptoms sound so identical.  Unless you fall into the 'black and white' of the medical profession, you are disbelieved, etc.  So depresssing, to say the least.  

      Just to let you know I am think of you.  There's no reason why people should suffer such pain in this day and age.  Met some of the nicest and worst doctors in the hospital so far, but no answers.

  • hargoni
    hargoni kinder145101

    Posted

    Eat one basic food at a time. Potatoes. The next day add some chicken. Eat boiled potatoes and chicken for a week and see how you do. 

    Don't drink milk in case you have lactose issues. Buy either lactose free or soy type milk. Drink reasonable amounts of water. 

    No coffee, no sugar, no soda, no chips and no dairy. Add one ingredient each week. For example, you could make mashed potatoes in week two with milk or cream. The following week you could add some parmesan. 

    Garlic can help your digestive system. Use it in the water to boil the chicken. Don't eat the chicken skin or fatty tissue. 

    The fourth or fifth week, add toast. 

    The sixth week add tea, not coffee. 

    One ingredient per week, monitor, have a bad week - delete the new ingredient. 

    Low acid, moderate fat, starch and later fiber. A good add for week 3+ is carrot. 

    • kinder145101
      kinder145101 hargoni

      Posted

      Good advice - I just can't bear to eat bland food - but i hear you ... potatoes and chicken ... What if it's not better after a week of this?

      Does that means it's either potatoes or chicken... see how confused it can be?

      Why isn't there a blood test that can tell you what causes you gut distress? Good advice though Hargoni.

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