Struggling with nutrition, not being listened to - IBS Network

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Struggling with nutrition, not being listened to

Idontknoooow profile image
24 Replies

Hi! So.. I'm kinda lost with my situation right now. Some suspect I have Gastoparesis but I cannot find a community for it so I hope you don't mind me posting this here!

So we took blood tests a little while ago. They were okay, they took albunim levels and checked my hydration levels etc. Because the blood work was okay now after them no one is listening to me.. Not the nutritionist, not the doctor or the gastroenterologist (

Before the blood test the nutritionist believed me.. So now I'm at a loss. She called me and said to me I didn't need to drink the nutrition drinks anymore and I would be okay if I just ate 3 times a day...

I currently eat 1-3 times a day, about a 1000 calories a day. On a good day I eat one bread in the morning, a scoop of dinner, and at night one bread or something lighter.

I'm struggling with my energy a lot and have been since my situation got worse with my nutrition intake but everyone says it's not because of my nutritional situation.. I felt just a bit better with the nutrition drinks, I cannot stand the taste and texture now so I stopped drinking them after my blood tests.

I usually struggle with my energy already but I am able to function in what I need to and compared to what my situation is now.. I'm desperate to just get my life back.. But now I have no one to talk to and ask for help because they don't believe me. The doctor even before and now keeps saying she has nothing to offer me..

My iron was just a bit low in the previous blood tests but it was okay now. It sometimes gets a bit low during my periods and has never effected me like this or this bad (it just drops a tiny bit). I'm taking iron and not feeling any better, but they keep putting the blame on my ''low iron'' that is not low now...

I still feel weak, dizzy, extremely tired and I'm still having trouble talking and thinking sometimes...

I can't function normally.. I'm struggling to go to work which in only 4 hours and one day in a week, and also to my therapy sessions.. I'm also struggling with keeping everything clean or doing stuff that I need to, like washing my clothes etc :(

I tried discussing the feeding tube or even just anything.. But they said no and said they have nothing to offer me..

I'm feeling overwhelmed and alone and I don't know what to do at all.. I could atleast lean on the nutritionist before even a bit..

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24 Replies
b1b1b1 profile image
b1b1b1

It sounds like you need to eat more. Have you been told you have anorexia? Why is it that you do not eat a more normal amount?

Idontknoooow profile image
Idontknoooow in reply to b1b1b1

I have been told that in the past. But I'm struggling with my stomach. I throw up, get super nauseous when I eat normal amounts, I also get super bloated and it hurts, sometimes I get stomach pains. When I keep long enough breaks between meals and eat small amounts I get less symptoms but physically I feel horrible :(

I do wanna eat.. and i feel so frustrated when I can't.. I just want to go to a cafe and not burp CONSTANTLY and throw up.. And I feel so embarrassed always..

I've went over the mind thing way too many times with doctors, psychiatrists and others. Some of them have said that it does sound like my stomach is too slow. Also without meds my bowel works once in a week or sometimes not even that.

I could explain all the weird symptoms but it would take way too long.

One thing is that if I eat "a lot" the day before it still effects my symptoms the day after and I still feel kind of full and bloated etc.

Luisa22 profile image
Luisa22 in reply to Idontknoooow

It sounds like maybe your whole digestive system is working too slowly? I was about to ask if you got constipation, but you mentioned that at the end. One bm a week is not enough of course. Even though you don't eat much.

I hear you about leaving time between meals. I am the same. I simply cannot eat "little and often" because if I try that I am not hungry enough to have appetite, and doing that will give me indigestion. But if I wait some hours between meals I am fine. But I've always been that way, it's not just the IBS.

Otherwise, I was going to suggest small snacks throughout the day.

I have nothimg against bread and toast. It's one of my staples and suits me generally. I usually eat it toasted once a day. I don't have a gluten problem (tested that for 8 weeks.)

But if two of your very tiny meals are just bread, then that isn't going to help your bowels to work. Could you manage snacking on fruit, and have some vegetables and a bit of protein for your main meal, even if only a small portion. Or can you handle seeds? Pumpkin and sunflower seeds They are nice slightly toasted and have fibre and protein. They can be just nibbled on here and there through the day or sprinkled on toast.

So I am not saying you could manage that, but if you managed a bit more of those kinds of foods with fibre and it encouraged more BMs, your stomach area might be relieved of pressure and empty a bit quicker maybe.

Do fibre based laxatives help you at all? They don't suit everyone with slow motility, and have to be taken with plenty of water which you might not be able to do. I just wondered.

I feel it might be slow motility which is the problem. In the absence of anything physically wrong with the stomach or some other illness going on, symptoms up top, nausea, vomiting, slow stomach emptying, etc can often reflect a constipated state below.

Idontknoooow profile image
Idontknoooow in reply to Luisa22

I tried the fibre laxatives but I throw it back up and I can't eat a meal if I take it :( It fills my stomach. I am currently on laxatives and fortunately with them my bowel works almost every day. Still I'm struggling unfortunately.

I appreciate the advice! I'll try to test out if I could switch out or add some stuff! :) Best of luck!

b1b1b1 profile image
b1b1b1 in reply to Idontknoooow

You need to be under the care of a good gastroenterologist. You also need a firmer diagnosis of what is causing your problems, as well as some methods to try to deal with your constipation and inability to eat an adequate amount. Going on like this will hurt your health significantly on a long term basis. The problems you describe may not be curable, but they can be treated to be at least a little less troubling. Also, take a look at the Fodmap diet. x

Idontknoooow profile image
Idontknoooow in reply to b1b1b1

I agree, they do need to find out the reason but it has been a huge struggle to even get referred to a gastro. I don't understand why they're making it so hard :(

I have tried the Fodmap diet but unfortunately it hasn't worked for me :( I am slowly trying to figure out foods that I tolerate less and ones I tolerate more.

Best of luck!

Viklou profile image
Viklou

Your calorie intake is far too low. Maybe try eating several small meals rather than one or two bigger ones. Your digestion could be slow and not working properly because it hasn't anything to do.

A suggestion would be to start with a very soft diet. Blended soups etc. I have to do this occasionally when my guts are inflammed. It just seems to release the pressure and stops me from being bloated, nauseous or being sick.

Not sure what tests you've had apart from blood tests but they need to rule everything out first then refer you to a proper qualified dietitian if those come back OK.

Ideally stool samples as a minimum, ultrasound, Colonoscopy, MRI etc.

Good luck xxx

Idontknoooow profile image
Idontknoooow in reply to Viklou

I eat smaller amounts already but I cannot eat more often :( I appreciate the advice still!

I'll try to push for more tests and for proper care :)

Best of luck!

What *exactly* are you eating? Contrary to popular belief, bread isn't food, and we don't need fibre in order to have bowel movements. I would suggest bone broth and/or eat nothing but fatty meat and drink nothing but water. The fat will do more for constipation than fibre. The usual advice for those with constipation is to eat more grains/bread/vegetables, but that just makes it worse. It's worth taking a magnesium supplement. Try Glycinate.

Idontknoooow profile image
Idontknoooow in reply to

Ty for the advice! I just eat bread because it's kind of light and my stomach can handle it better than something heavier. But I'll try to find something to replace it or add to it 🙂 It's hard for me to try supplements because I cannot afford them unless a doctor writes a prescription for them 🙁

Luisa22 profile image
Luisa22 in reply to Idontknoooow

I hear you about that. I had to switch from my favourite healthy breakfast ( 2 pieces of fruit chopped, some bran flakes, and toasted seeds) to plain toast butter and honey, because if I ate the latter I felt much better and healthier than if I ate the "healthy breakfast". The healthy option made me feel so ill. The toast breakfast does me nothing but good for a few hours until I'm hungry again when I eat different food.

Now, as to whether bread is "food" or not, it depends what kind of bread it is and how it's made. Some breads are highly nutritious, contain protein, omega 3 and 6, calcium, iron, and B vitamins, etc.

That is, if there isn't gluten sensitivity of course.

As1992 profile image
As1992

Have you tried prokinetic's. Is a medication that helps with motility disorders. There are conventional and herbal prokinetics. Have a word with your gp about this also if you type in prokinetics in Google search, there is a huge amount of information on it. Good luck 👍

Idontknoooow profile image
Idontknoooow in reply to As1992

I haven't 🤔 I'll try to talk about, unfortunately I cannot afford that without a prescription. Ty so much more the advice!

do you take any supplements? It seems like if your digestive tract is that irritated then there are some things you can try like aloe Vera juice in water before meals, fennel tea in the morning when you wake up with a vitamin C supplement for energy along side a slippery elm tablet to sooth the digestive tract. I would recommend your first breakfast to be Greek yoghurt and honey. With things like this the burping and feeling full would go away… which would hopefully allow you to eat more. I am a certified herbalist so feel free to message me. I would be curious to know in particular how these things work for you.

Idontknoooow profile image
Idontknoooow in reply to eyeofthetiger123

I do take some vitamin and iron supplements. I will try to try to do those things! Ty for the advice 🙂

Fibro2021 profile image
Fibro2021 in reply to Idontknoooow

Have you had your ferritin levels checked? If it is low, then this may indicate that there is still little iron in the body.

Pte82 profile image
Pte82

Idontknoooow, have you investigated thiamine (vitamin B1), have you had your vitamin B1 checked? A deficiency could be a factor in your diagnosis. Sugar and carbs work against absorption of nutrients and your overall health. Giving them up is a hard pill to swallow but they stand in the way of your recovery. There are several forms of thiamine, look into the pros and cons of each. Thiamine needs adequate magnesium to become activated. Anti-thiamine factors diminish or destroy thiamine, see the stuttersence link for a list of some. Always consult with your health care professional before using any supplement.

eonutrition.co.uk/post/when...

eonutrition.co.uk/post/thia...

stuttersense.blogspot.com/2...

Idontknoooow profile image
Idontknoooow in reply to Pte82

I thiink they have checked it, I'm not sure tho 🤔 Ty for the advice and I'll try to check out the websites 🙂!

eyeofthetiger123 profile image
eyeofthetiger123 in reply to Pte82

Yes, I've looked into this, but I wasn't aware that magnesium was so necessary in the absorption of it, so thank you for letting me know! @Pte82 Would you mind messaging me and letting me know which resources you use? It should be prescribed for all berberine/metformin style drugs as these can deplete your B1 as well as your thiamine.  Idontknoooow if you are struggling with anxiety I recommend a therapeutic dose of thiamine more than any anti-depressant. Also,  Idontknoooow your body needs a significant amount of vitamin C to process iron so I don't know if orange juice is available to you with your digestive issues but it may be a good way to get vitamin C as well as calories. Or just adding an orange and grapes which are quite a high calorie fruit to your day also

Idontknoooow profile image
Idontknoooow in reply to eyeofthetiger123

I am going to therapy and have the meds 🙂👍🏻 Also I was recommended juice so I've been drinking orange juice already 👍🏻

Pte82 profile image
Pte82 in reply to Idontknoooow

Idontknoooow, most of not all fruit juices are high in sugar and since sugar and vitamin C have the same pathway into the cell your vitamin C level will suffer in addition to your health. Vitamin C doesn't last long in your system but taking one capsule of a whole food vitamin C like acerola cherry, for example, three times a day would serve you better because it doesn't contain sugar and contains all of the C vitamin complex. Always consult with your health care professional before using any supplement.

justlivewell.com/whole-food...

Pte82 profile image
Pte82 in reply to eyeofthetiger123

I just use the same way I did research papers in college eyeofthetiger123. While it no longer involves the Dewey Decimal System it still requires building a comprehensive understanding of a subject and learning how things work including nutrition. Even though it was published around 1998, Dr Atkin's Vita-Nutrient Solutions book has helped me understand nutritional components. Yes, it's a lot of connect the dots but few things lend themselves to an alternative.

Flyonawall profile image
Flyonawall

If you can't eat much in one go perhaps you could try little and often even though that's not so good either in the long term.What is required though is the quality of what you eat.Not simply from a calorific value but from a nutritional value.

A bit of bread morning and night and a small meal is simply not sufficient.

Akilah451 profile image
Akilah451

I also have nutrition issues though they are not so crucial. I was told I need to calculate the calories and cross out some products. Thankfully, bakeries still can be consumed. But again, calculating the calories is important. I now read such articles costcofdb.com/costco-bakery... before buying my favourite dishes. Not a big problem anyways.

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