Functional Dyspepsia - how do others cope?
Posted , 19 users are following.
Hello I am new. I have lifelong IBS issues, which are under reasonable control, but unfortunately I have Functional (Non Ulcer) Dyspepsia now diagnosed recently on top after an endoscopy and ultrasound. They found a small hiatus hernia, and gallstone, but consultant still seems to think it's the FD that is the issue.
I have chronic relapsing/remitting pain high up under my ribs in the middle of my abdomen. I often get bouts that last for days, though they usually ease after a week. The pain causes migraine, and I feel pretty desperate to get it to go which normally it does eventually until the next bout a few weeks later.
I have eliminated a huge number of foods from my diet, but don't want to take any more out as it's healthy and balanced still. I don't take anything for it medication wise, but see a medical herbalist. I did use PPIs for around 4 years at the beginning when I was diagnosed with gastritis/duodenitis, but they were not helping and so I stopped them as I read that long term use wasn't a great idea.
I then felt that foods made a big difference but I am beginning to wonder as I seem to have to cut so many and the list increases......
1 like, 23 replies
NLW-AW mermaid62
Posted
She is definitely improving, although very slowly, but still in pain most of the time. Obviously stress makes it worse and she has found having soya milk helps. She cannot tolerate alcohol or red meats. But isnt too bad with plain fish, mushy peas and a jacket potato. Meat is a no no. She found using a nutribullet really helped her and gave her the vitamins and minerals she needed (spinach, various fruits, flax seeds) She is now able to go to the gym again as before any exertion irritated it. She was taking emozul (PPI) 80mg a day but suffered from dead fingers. But now able to cope on 40mg. She has better days than others but definitely improving. I have googled lots on this subject and one thing that came back was pregablin (Lyrica) gives pretty good results after a few months of use. This is a nerve medication used for people suffering from epilepsy. So she is going to try this. She has also started counselling and hoping that cognitive behavioural therapy will help with her coping mentally, especially going out socialising.
Our main concern is after having tests she is having problems with moving her bowels so looking for answers to that as prescribed laxatives do not help whatsoever and now has to use enemas couple of times a week. Do you have problems with your bowels?
mermaid62 NLW-AW
Posted
Are you in the UK? I find mainstream medicine is very slow in this area and they are not keeping up with research that is being done.
My own Gastro recommended a drug (Domperidone) which has now been withdrawn by NICE and can cause cardiac arrest, so I would not have wanted to use it - especially not recommended over aged 60 which I am.
It might be helpful if your daughter looks into Gastroparesis (maybe google for info) as that sounds to be more the kind of thing that is involved for her and it is recognised in the UK http://www.nhs.uk/conditions/gastroparesis/Pages/Introduction.aspx
Have they looked into this?
It's known as a motility disorder and most of the drugs used for it have been withdrawn in the Uk because of possible risks. I think Domperidone is still used for short courses if there is nausea/vomiting.
I have also just found that there is some great research into FD being done mostly via a brilliant man called Prof Nick Talley who is Australian. If you google you will probably find some more out, but here are a couple of links....
http://www.newcastle.edu.au/profile/nicholas-talley
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070654/
He has also done some research in the last few years comparing pain killers to help and Amitriptylene came out as useful compared with an SSRI, so I am thinking of asking for that. I had not heard of Lyrica being used for this but I see it is used for fibromyalgia pain. Not sure it would be so good for me as I have lowish platelets and it sounds as if could affect that.
It is quite hard to find useful info to help with FD but as you say, changing diet helps a lot. I have been dealing with FD for years actually - at least 10 and it has got worse over last 5, but didn't know that is what I had. I was diagnosed with Gastritis/Duodenitis some 11 yrs ago and thought that's what I had still! So in this time my diet is VERY restricted now - I eat virtually no processed foods - and as I also have IBS I am further restricted. I do have meat, but as you say, red meat not so good, though I am still eating some. I have chicken mostly, and fish, nuts, seeds, a little fruit (mostly apples, pears and bananas), most veg but limited carbs, sheep or goat yogurt, and a little goat cheese and eggs and coconut and olive oil and a little Apple Cider Vinegar. Not much else, but at least it's a balanced diet.
I don't actually have nausea, and I pass motions 2 or 3 times a day, so no problems with that. It's just the pain of it drives me to distraction. I have bad bouts every 3 to 4 weeks and they last around 5 days, and then the bout passes usually.
Like your daughter I have been using smoothie maker for some years (a Vitamix) but now for some reason I am having more problems with the liquid. If I have small amounts it is fine, but I cannot drink very much in one go. Solids are easier again though.
The chap I mentioned above has identified 2 sorts of FD and one is your daughter's sort which is more to do with motility, and the other sort is the kind I have which is more to do with pain. It sounds as if she has pain as well though, so maybe she it's not that simple!
Sara223 mermaid62
Posted
I was very recently diagnosed with FD, and I am totally unsure what to eat. I cry a lot from the pain, The burning sensation is the worst. I have been eating organic sprouted homeade oatmeal that i make myself, I grind up the oats in my blender and boil them till they get mushy and soft. I also eat organic sprouted cream of rice, which I also grind up in my blender and boil on the stove. I am at a loss at what to eat, as everything is making my symptoms worse. I eat bunny graham's, since they are bland. I also have IBS. What are your food reccomendations? I've also been going to the ER non stop from burning stomach pain and IBS related constipation and bouts of spasms and heartburn.
karsh75792 Sara223
Posted
hey , i have the same symptoms , i am not able to manage it . having it from past 2 years . how are you managing it ? FD sucks ;..;
NLW-AW mermaid62
Posted
My daughter doesn't vomit anymore and she does seem to be making slow progress although some days are worse than others like you. She is keeping a food diary at the moment to see if there is a pattern somewhere. From what I have read you seem to be doing the same thing as my daughter has done. From information I have read I believe people who suffer from FD seem to suffer in different ways. I have also read that one person's FD went and came back so my daughter is just trying to take one day at a time.
Interesting to see you do not have problems with your bowels which I will pass onto her.
Thank you for those links which I will read.
And finally yes we are from England. Where are you from?
mermaid62 NLW-AW
Posted
Sorry I gave you some wrong info re the Prof in Australia identifying the 2 kinds of Functional Dyspepsia - I forgot to look them both up, and got that a bit wrong, though since then I have read a report that identified more than 2 kinds of FD actually, but it was an old one.
I wonder if I don't have trouble with my bowels because I have spent the last 5 yrs working on them due to the IBS issues I also have. I have been cleaning up my diet so that I take in very little sugar (just a little in fruit), have virtually no processed foods, gluten or very few grains, no preservatives, as all of these things disagree with me so badly.
I also have researched Small Intestinal Bacterial Overgrowth (known as SIBO) which some researchers in the US now believe is the cause of much of IBS, and they prescribe an antibiotic to help eradicate this. I am pretty sure I have this in a mild way, but am using Oil of Oregano which works very well for me.
I also have used probiotics and make my own kefir, and use live yogurt as some people think that the lack of good gut flora are involved in many stomach issues that people have, and may also be implicated in other illnesses.
There is also the whole subject of Leaky Gut which I have looked into which is not recognised by NHS mainstream but no doubt they will catch up in the end. Another whole arena is that of Mast Cell Activation which I am beginning to explore, and which may be implicated in Functional Dyspepsia perhaps.
The thing that bothers me regarding the food issues is that unfortunately my FD has if anything got worse over the years even with cutting out foods, though I do have some better spells with it. Sometimes it seems to me that I get a bad bout even when I have eaten the same as usual!
NLW-AW mermaid62
Posted
Thank you for the information and I wish you well in getting better. If I get any other information I will let you know.
Emis Moderator comment: I have removed the practitioner details. If users wish to exchange these details please use the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
mermaid62 NLW-AW
Posted
It was suggested by the private Dr that I might have Small Intestinal Bacterial Overgrowth (though I haven't had the breath test that would confirm this), and I have been treating myself with Oil of Oregano as that is one of the herbal approaches to help with this. Ideally I should also stay off carbs but the reality is that is hard to maintain long term, and also I need some carbs for my thyroid to function so I am cutting them back as much as possible.
Hopefully all this will help with the Functional Dyspepsia too, but is early days....
mermaid62
Posted
ikiman mermaid62
Posted
In the beginning I couldnt eat at all, abut a year ago, Now I feel really better but some days are just not good.
I try to watch what I eat, do breathing exersice, stay positive and not be stressed.
I can eat good now but of course somethings like acid triggers or fat foods are out of my diet list.
I use multivitamins and l-glutamine protein and just rarely use aniacids. no other medications. my doctor also told me that Domperidone is an option but its not presrcibed anymore in the Netherlands. Instead of that you can use metoclopramide but I dont use it.
NLW-AW ikiman
Posted
ikiman NLW-AW
Posted
Before my FD started about a year ago I was very Fit, my weight was 92 kg and now my weight is around 76 kg!
I am doing mentally better these days but FD seems to be always there and some days without any reasons it make me feel aweful!
But I believe trying to be positive makes a huge difference.
mermaid62 ikiman
Posted
Yes, I too have days that are reasonable and then I get a bout that lasts about 5 days and then it finally improves. I am trying to adjust my diet too, and for me not eating too much in one go is my latest experiment as I feel full quickly and if I eat too much (ie what is normal for most) it can trigger an attack it seems. Also too much liquid in a smoothie can do that also.
Domperidone is also not used much now in the UK unless you have vomiting, and then only recommended for short term use. Apparently there was a European edict that came out last year on it as there have been some deaths and bad side effects for some people regarding heart rhythm. Funnily enough my Gastroenterologist has recommended it to my GP, so maybe no one told her......!! I do not plan to try it though.
I have a pretty stress free life, so in my case I don't think stress is a big factor. I do get stressed when I travel anywhere as I also have ME/CFS but oddly rarely get stomach pain when I am away anywhere.
james_81340 mermaid62
Posted
I've suffered with FD for 4 years, on and off for the first 3 then last year it went away and stayed away for over a year. I thought I'd manage to rid myself of it completely after that amount of time but a few weeks ago it returned. Although obviously I was dismayed that it returned, It's encouraging to know that it's possible for the symptoms to disappear for that amount of time. I ate and drank what I wanted in that time, plenty of alcohol, coffee, chocolate etc. The only thing I can think of that possibly might have changed is that i was drinking smoothies most days at that point and more recently stopped completely due to a broken nutribullet. It might just be a coincidence but it's worth getting back on them to see what happens, of course it could be a cumulative effect so might need a good few weeks. We know that smoothies can aid digestion anyway so there's no reason not to give it a go. I hope this offers some encouragement to fellow sufferers.
James
will07879 james_81340
Posted
Hi, James,
I know this was years ago, but I'd be curious as to whether or not your symptoms went away once more. Hope you're well.