Distended Stomach

[michelle159]

Is it very common for people with POTS to have a distended stomach? Mine has been this way for three months. Even when I feel my gastrointestional system is not acting up too much my stomach is still very distended. Also with this comes along with a very strong pulse in my stomach as well as some areas that feel rigid inside my stomach. If anyone else suffers from this please respond so I feel some reassurance. I feel like there is a tumor in there, but I have had it all checked out.

[Janey]

Is it very common for people with POTS to have a distended stomach? Mine has been this way for three months. Even when I feel my gastrointestional system is not acting up too much my stomach is still very distended. Also with this comes along with a very strong pulse in my stomach as well as some areas that feel rigid inside my stomach. If anyone else suffers from this please respond so I feel some reassurance. I feel like there is a tumor in there, but I have had it all checked out.

Hello!

I get this and have had it for years. Stomach/intestinal problems are a prime component of my POTS/Dysautonomia and they must be for you too, if you et these symptoms. Bits of my intestines go "hard" and I can feel them raised up in my stomach and my stomach gets very distended. In fact, everything gets distended! Stomach, intestines etc...

My doc said this was mainly down to having Ehlers Danlos Syndrome. The connective tissue defect affects the stretchiness of the organs and makes them VERY stretchy, thus creating the distendedness.

Have you been checked for EDS?

Janey

[michelle159]

Thanks for your reply. I haven't been tested for EDS. Reading a bit about it, it sounds like this is something that is inherited. I don't have any of the other symptoms of EDS other than the tight feeling in my intestines. It literally feels like there is something in my stomach that shouldn't be there. Is this how you feel? Are you confident with the diagnosis of EDS that your dr. gave you? How long have you been dealing with this and did it come on after POTS? Everytime I talk to a different dr. about the feeling in my stomach they look at me like I am crazy and don't say much about it. Sometimes the feeling feels like its up in my gallbladder and other times it feels like its near my ovary. The area around my aeorta feels hard too and pulsates like crazy but everyything has checked out as normal, yet I know its not. I am always bloated and have dealt with trapped gas, but probiotics have got the trapped gas under control, yet the bloat and this feeling remain. I wonder if it will ever go away. Along with this, I have the same odd tight feeling in my back and neck. This whole thing is only on the right side from the butt up. Nothing in the leg area feels tight.

Michelle

[Tommyhoney]

I've had this problem off and on....and have been told it's due to the splanchnic pooling.(blood pooling in abdomen) It's one of my least favorite symptoms. Come to think of it I have no favorite symptoms. sorry.

[Janey]

Thanks for your reply. I haven't been tested for EDS. Reading a bit about it, it sounds like this is something that is inherited. I don't have any of the other symptoms of EDS other than the tight feeling in my intestines. It literally feels like there is something in my stomach that shouldn't be there. Is this how you feel? Are you confident with the diagnosis of EDS that your dr. gave you? How long have you been dealing with this and did it come on after POTS? Everytime I talk to a different dr. about the feeling in my stomach they look at me like I am crazy and don't say much about it. Sometimes the feeling feels like its up in my gallbladder and other times it feels like its near my ovary. The area around my aeorta feels hard too and pulsates like crazy but everyything has checked out as normal, yet I know its not. I am always bloated and have dealt with trapped gas, but probiotics have got the trapped gas under control, yet the bloat and this feeling remain. I wonder if it will ever go away. Along with this, I have the same odd tight feeling in my back and neck. This whole thing is only on the right side from the butt up. Nothing in the leg area feels tight.

Michelle

Hi Michelle,

The funny thing about the EDS diagnosis, is that you don't have to have "all" the symptoms (or in fact any of the symptoms) to have EDS. One of the primary symptoms of EDS is joint pain and I don't have this at all. A lot of POTS patients have EDS but have never experienced an EDS symptom before they're diagnosed, or even in the course of their lives. If you have it, EDS always comes before POTS, it is the cause of POTS, as it makes your blood vessels stretchy, therefore causing them to have problems constricting when you stand up. So even if you don't feel like you have EDS, you still could have it. Are you quite flexible? Do you have quite stretchy skin? Stuff that I thought was "normal" and "everyone can do" turned out to be "abnormal" and "only me and other EDS patients" could do.

My case is slightly different in that an intestinal parasite brought on my POTS/stomach problems. It turns out my stomach/intestines were already prone to being stretched/distended/clogged because of EDS, but had I not caught this parasite and the parasite irritated my EDS susceptibility in my intestines, then I would never have known I had EDS. I'm confident in the diagnosis because there is a lot of things that EDS can do to your intestines and it can create a lot of debilitating symptoms. My gastroenterologist described it and said our intestines are like a hosepipe which has been pulled really hard from both sides, creating weaker areas with thinner walls. In those areas, the muscle loses tone and ends up not propelling the food properly, causing the intestinal contents to gather at one site and build up creating a diverticulia (look it up.) This is like a bulge (similar to what you describe) until the pressure has become so much bits of the food start passing through. It causes pain, nausea, occasionally vomiting and a very "sore" feeling in the intestines. This can happen at any point in the gut, so it might explain the different sites of your pain. I also have the arterial pulsing feeling and I asked my gastro about this. He says it has a tendency to happen in EDS, especially with thin people (with blood vessels!)

Obviously I'm not going to insist you fit into the EDS stereotype, and if you have pain all the way up your body that is for your neurologist to look at, not your gastro... but if it is in your stomach and intestines, EDS could well be the cause.

To help alleviate the symptoms I have been prescribed metoclopramide and domperidone to ensure that food moves along quickly. My gastro has also said that if a part of my intestine "dies" from stretching then they might have to remove it.

Have you also looked up gastroparesis, delayed stomach emptying and intestinal dysmotility?

[Janey]

Just adding an extra thought here and having read Tommy's post. Abdominal blood pooling could well be the cause, as well as "delays" in digestion because of dysautonomia generally.

[michelle159]

Is there any tests to check for blood pooling? If you go through the works at a place that really knows about POTS can they check for this? I feel like either when I have to pee or have a b.m. that there is no more room left in my stomach. What this all feels like to me is when I was pregnant and I did have something in my stomach..that is what if feels like now. Along with the constant urge to urinate, pressure on the bladder.

Thanks for the additional info on EDS. Is it your gastro dr that diagnosed you with this or a neurologist? I am just wondering who I should bring it up to. How do they check for it?

I am still so worried there is some kind of tumor in there, but since I have had every test under the sun, including CT scan, vag ultrasound, abdominal ultrasound, small bowel x-ray and normal blood counts, etc etc etc, do you think I can rest my mind that this is not a tumor even though it feels like this?

My POTS can on after mono in July. That is a nasty nasty infection! It is totally ruined my health and brought on all these cruddy symptoms.

[Janey]

Is there any tests to check for blood pooling? If you go through the works at a place that really knows about POTS can they check for this? I feel like either when I have to pee or have a b.m. that there is no more room left in my stomach. What this all feels like to me is when I was pregnant and I did have something in my stomach..that is what if feels like now. Along with the constant urge to urinate, pressure on the bladder.

Thanks for the additional info on EDS. Is it your gastro dr that diagnosed you with this or a neurologist? I am just wondering who I should bring it up to. How do they check for it?

I am still so worried there is some kind of tumor in there, but since I have had every test under the sun, including CT scan, vag ultrasound, abdominal ultrasound, small bowel x-ray and normal blood counts, etc etc etc, do you think I can rest my mind that this is not a tumor even though it feels like this?

My POTS can on after mono in July. That is a nasty nasty infection! It is totally ruined my health and brought on all these cruddy symptoms.

I know the feeling of hoping that everything has been tested for... and from the sound of it, IF there was a tumour, a CT and ultrasound would have shown SOMETHING.

It was a geneticist who diagnosed me with EDS, but pretty much every doctor I've seen has checked for it. You have to have a certain score in something called "beighton criteria" if you look it up online you can check it yourself. Maybe that will give you an idea of what to rule out?

I'm sure there is a test for blood pooling and would be done by a neurologist who specialises in vascular illness... deffo think you should ask for it.

Janey

[Guest tearose]

I can get a distended stomach when my gut is not processing/digesting food properly.

I have times when it is far better to go onto a near liquid diet and let things calm down. I do have periodic gastroparesis.

[jimells]

One of the first things I tell every new doctor is that I have gut problems. *Not one* of them has shown the slightest interest, asked any questions whatsoever, diagnosed the problem (even incorrectly!), or prescribed any treatment.

What's wrong with these people? Is the subject just too 'icky'??

Except for my chiropracter. She does some kind of 'adjustment' (don't know if it helps) and told me to eat yogurt every day (and some kind of herbal stuff that didn't do anything). The yogurt definitely helps.

There's also a long and growing list of stuff I can't eat anymore, including almost everything I used to eat (bummer).

[prettyinpink]

Have you been seen by a gastroenterologist? They might help rule out/in delayed stomach emptying, celiac disease(gluten intolerance) or other explanations.