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Digestive issues/GORD/LPR/ulcers etc .. feel free to join me in a moan

(11 Posts)
BorisJohnsonsHair Fri 03-Mar-17 14:56:17

I've been struggling with unidentified digestive issues since the beginning of December and it's really getting me down.

So far, I've given up fatty food, fried food, caffeine, alcohol, chocolate and citrus and wheat. I've had a 3 month course of PPIs. I sleep with 5 pillows, and don't eat 3 hours before bed. I've managed to lose almost a stone, so am only a tiny bit (4lbs ) over the healthy weight limit. But I'm still no better.

I've had an endoscopy, blood tests and ultrasound, all of which are clear.
I don't know whether I've got an ulcer that wasn't spotted, or just gastritis, or something else. I came off the PPIs too quickly and am now suffering with horrible LPR as well, which gives me a sore throat, hacking cough, runny nose and ear pain.

I'm really getting to the end of my tether. I know it sounds trivial, but socialising is virtually impossible - a night in the pub involves drinking just water; a meal out means some kind of lean meat and plain veg (not easy at a curry house/pizzeria etc).

I know I could be suffering from something far worse, but it's still really dragging me down on a daily basis. Having to sleep so propped up means I don't get enough sleep either.

I'm just really fed up and wanted to offload. If you're suffering and want to join in for mutual misery support then please do smile

sufferingicecakes Fri 03-Mar-17 16:09:24

Ooooh. I feel you are talking to me! Love the username by the way!

Just back from (yet another) visit to GPs. Made my weekly visit to pharmacist for drug stash; I am sure he rubs his hands as I walk in. Now just googling to try and find out how long this will go on for and wondering what I am going to eat today/next week/next month. DH has just emailed me to remind me we are missing out on a curry and quiz night tonight. We also had to miss Best Mans 50th at major London hotel - gutted (excuse the pun!). Yet I am in a fairly good mood - my raised platelets are down (yay!). These tests and retests are terrifying.

I have lost 1st 2lbs since mid Jan. OK, I am a good couple of stone overweight but most has been achieved through enforced total fasting and drinking just water. I have a girls night out next week and I had to choose the restaurant based on ability to get soup and mash. A couple of weeks ago I went to DS's friends bday party and had to scour the menu for a tomato less pizza - yep they can be found!

My diagnosis is gastritis, although I clearly have ulcers too as I have had internal bleeding. Since coming off a month of PPIs and skipping doses of ranitidine (as it makes me feel too tired) I now have GERD to add to the mix. Mine started with '9' level pain coming from my stomach and I could not see a GP for 12 hours. Despite the pain, and stating that I did not(at that stage) suffer with GERD, I was just given Gaviscon. Unbeknown to me, infact, I was bleeding heavily. I did not eat for a week, (lost 6lbs and some sad friends have been asking me for the diet!) and finally saw an out of hours GP at our local hospital, who was lovely and finally put me on the right meds. Since then, and another episode of bleeding, our GPs have woken up and been pretty good with a plan.

Soooo.....another week of ranitidine and porridge, rice, chicken, potatoes. Some days I have had rice pudding for breakfast! Then H pylori test - if positive more PPIs and antibiotics. If negative, an endoscopy. If I need to go 'off piste' with my food, as a treat, I can take a PPI.

My symptoms are undoubtedly worse when I am stressed but I get stressed that I cannot eat or drink anything other than water (catch 22).

I have a child free weekend in Amsterdam coming up and I am wondering what I will be able to eat.

I think that qualifies as a rather large moan and I am really relieved there are other people like me out there although I would not wish this on anyone, of course! If it is such a common condition I am shocked more is n't written about it.

What did your endoscopy find? Did it just say gastritis? Was it the erosive type? I am shocked you had 3 months of PPIs and are still not right. Have they tested you for H Pylori - I assume they have?

Thanks for starting the thread!

JBH316 Fri 03-Mar-17 17:27:04

I have not been able to eat a meal in 12 months. I feel so sick all the time and just no appetite at all. Was on Omeprazole for months with no difference (although did help with the burning in my throat). Gastroscopy in January came back with very mild gastritis so was told to go back on Omeprazole for a further 3 months. Am now trying DGL supplement to see if that helps as heard lots of good things about it.
I would literally kill someone dead to be able to eat my favourite Dr Oetker pepperoni pizza

BorisJohnsonsHair Fri 03-Mar-17 17:42:50

suffering it sounds like you're really going through it too, how horrible for you.
I'm tempted to try a high alkaline diet as I've read a lot of good things about it, but need to stick with being gluten-free for 4 weeks to see if it helps.
My endoscopy found nothing at all; I had felt a bit better beforehand and all my pain (mainly between my shoulder blades, not stomach at all) seemed to disappear that day. For about a week I was fine, so went back to normal eating/drinking habits etc then it came back with a vengeance and hasn't gone since (2 months ago).

Haven't been tested for H Pylori but as I'm allergic to the antibiotics they give you it doesn't matter much! I'm trying to help myself heal by lifestyle changes and thinking about probiotics/digestive enzymes, but again, one thing at a time.

I hope you enjoy Amsterdam - does it help if you take a PPI and Gaviscon Advance?

JBH 12 months? That sounds terrible, poor you. I've tried DGL, which does help a bit.

Do either of you Google your symptoms? I'm always doing it, in the hope of finding some magical cure, but sadly it doesn't help.

NanTheWiser Fri 03-Mar-17 17:52:47

I'll start by saying that I'm 70, so no doubt the old body doesn't work quite as well as it used to! I had digestive issues for several years, gradually worsening over time. I was suffering from bloating, burping, acid reflux, abdominal pain and palpitations. I had also put on weight during that time too. Although I never had any investigations done such as endoscopy etc., I did have an ECG which was perfectly normal, and never really got to the bottom of the problems.
About a year ago, I read about the effects of sugar (and for sugar read carbohydrates too) on the metabolism, and the dangers of Diabetes. I checked a blood test done 3 years ago, which showed my blood sugars very close to pre-Diabetes (I was unaware of that at the time, it wasn't flagged up). So, I decided to try the Low Carb High Fat (LCHF) way of eating, and almost ALL my symptoms disappeared. Sugar/carbs can be very inflammatory in the body, and one of the problems I had was what I'm sure was oesophagitis - that just disappeared. I have also lost a lot of excess weight - 17lbs since last May which pleases me greatly!
It does mean giving up potatoes, bread, rice, pasta and any food high in carbs. Sounds difficult? I thought so too, but I've had such a positive result that I find it easy now, and don't miss those foods (not much anyway, I still cheat occasionally!) I was probably insulin-resistant, which does result in extra weight, and by losing most of that, hopefully the insulin-resistance has decreased too.
So, I can only suggest you try cutting back on the sugar/carbs, and seeing if it works for you - results should be apparent quite quickly. If it doesn't work, well, no harm done.
PPIs really don't "cure" the problem, and shouldn't be taken long-term, as they create further problems down the line, and coming off them should be done slowly, due to "rebound" acid - which can make you feel worse.

BorisJohnsonsHair Fri 03-Mar-17 19:28:57

Thanks nanthewiser (great name btw). I've been reading quite a bit about this kind of diet; apparently carbs can be quite inflammatory in the stomach and cause bloating and more pressure, leading to reflux.

I always have porridge every morning, but have decided to go for eggs or yoghurt for the time being (cutting out wheat too). I don't each much sugary food, but was always fond of potatoes and pasta so have eaten a lot of those.

I had noticed that after eating a big pasta meal I would get palpitations; I wondered if it was the wheat, but it could just be the amount of carbs. I'd got myself a bag of jelly babies as a treat tonight, but maybe not now ....

Glad that you're feeling such a lot better. My mum also suffers from digestive issues very badly and is currently taking 40 mg Nexium, plus Ranitidine at night and Gaviscon as and when. I really don't want to end up doing that too, which is why I'm trying lifestyle changes instead. Thanks for the advice.

NanTheWiser Fri 03-Mar-17 22:05:45

I used to love my porridge for breakfast too, Boris, but I now have egg, bacon (well, pancetta!) and tomato every morning - lovely! And I have cream in my coffee, such indulgence! On LCHF plenty of good fats are necessary, and no need to feel guilty about it, what's not to like?
Your palpitations are quite likely due to carb overload, so if you can cut the carbs, they should disappear.
You could have a look at the LCHF boards on here for a bit of info and inspiration, it really isn't as hard as it might seem.

gobbin Sat 04-Mar-17 10:48:48

Oats give me raging indigestion!

BorisJohnsonsHair Sat 04-Mar-17 19:27:25

Will check out the LCHF boards nan.

gobbin oddly cheap oats give me indigestion but Quaker or Scott's are fine!

lizzyj4 Sun 05-Mar-17 22:28:51

I've had digestive issues on and off for almost 10 years. Closely related to stress (they're much worse when I'm stressed). I've taken omeprazole for quite a long time, but last April discovered Silicol gel and I've now reduced the PPIs to once every two days. I'd definitely recommend trying silicol gel, if you haven't previously, it's made a massive difference to me.

In terms of diet, it really depends what sort of issue you have. When I have a flareup, I've learned that complex carbs are just about the only thing I can eat. Porridge really helps me. There are only a few fruits I can eat (no citrus) and I've had to completely give up coffee, tomatoes, anything spicy or hot, chocolate (all of which I love). Since taking silicol gel, I've been able to be a bit more adventurous (*almost normal*), it's made a huge difference, but I've still had the odd flare-up when I'm stressed.

lizzyj4 Sun 05-Mar-17 22:35:35

... and yes, it makes eating out a bit of a misery tbh. It's pretty much spoilt my enjoyment of food. Eating has just become something I do to function and stay healthy, and I used to really love food. But on the plus side, I never have to worry about my weight.

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