Undiagnosed edema issue

[Chanasky]

Okay. I'll give these forums another shot and hopefully come up with some possible answers. Previously, I posted in heart failure and undiagnosed diseases forums. I'm 45 yr old male who's been dealing with some chronic gastro issues and generalized pitting edema throughout my body but most notably in the lower legs.

The edema seems to get worse when the gastric issues are flaring but I'm not sure if the conditions are actually related or just coincidental.

In terms of the gi issues, I've been diagnosed with erosive gastritis, a patch of colitis noted during colonoscopy and slowed gastric emptying.

I've been checked for heart, liver and kidney issues as well as thyroid condition, diabetes and most of the conditions that could causes a generalized edema like mine but everything has come back normal. I'm normally on thin side but due to the edema look pretty bloated at this point, especially in my abdomen, which is swollen, distended and tender. Although I feel uncomfortable from the bloat and pressure on my abdomen, I don't think I'm actually experiencing any shortness of breath. I don't experience any breathing issues while lying down, either. I'm not taking any meds

The edema is actually causing me far more discomfort than the gi issues and is more of a concern to me. It's even in my arms and neck area but it doesn't leave indents in those areas like it does lower legs. Anyone ever hear of a similar condition or symptoms? My docs are stumped and I am getting pretty frustrated about the whole thing

I'm wondering if something could have been overlooked. To screen for heart failure, I was sent for an echo, chest CXR and ekg, which showed normal size, function, etc.

[Chanasky]

The edema is chronic and they don't know the cause. I'm not really interested in symptoms control until they can tell me why I developed it in the first place. I don't think it's normal for a 45 yr old previously healthy male to be walking around with generalized edema 24/7

[Chanasky]

Appropriate treatment options? They can't even diagnose me, let alone provide any treatment options. They tell me to go to the Cleveland Clinic. That's the only "option" that they're giving me. Once they rule out kidney, liver, and heart failure, they seems pretty lost  when it comes to explaining the edema. The edema is chronic, not episodic

[erijon]

Please see your doctor for appropriate treatment options. Sodium channel blocker can cause urinary retention and diminished kidney function that would promote systemic edema. Again, ask you doctor for their opinion.

[Chanasky]

TY, achillea. That's interesting that the guy in the study had IBS. I think I had IBS most of my life (cramps) but now everything is actually inflamed, including my stomach. Doc said that the junction area between my stomach and esophagus is some of the worst inflammation he's ever seen on endoscopy. Colon is inflamed too. I'm seeing him again for another follow up next week. I've had the edema for so long now that I honestly think I'd either be dead or gravely ill by now if it were an organ issue

[achillea]

As I mentioned, idiopathic edema seems to have been mostly studied in women (though one paper out there referred to a male patient and concluded that the condition probably affects men also).  Anyhow, there's a long statistical/multi factorial study of the subject in the Oxford medical journal at http://qjmed.oxfordjournals.org/content/97/11/755.  If the medhelp censor doesn't like the link, the paper can be found by searching QJM unexplained swelling symptoms in women.  In the study, the authors note both a strong hereditary component and a strong association with irritable bowel syndrome, so your suspicion of a link with your gut problems appears to be well founded.

[Chanasky]

I've read about that before but it seems like it's mostly lower body/leg edema and frequently due due to obesity or sitting long periods. The edema I'm carrying is systemic. I can feel it even in odd places like my arms, wrists and neck area. A person who didn't know about my situation might think I just gained 20-30 pounds. It's really that uniform and generalized

Thanks for the input, though

[erijon]

One other thing to consider is vascular insufficiency. Take a look;

https://www.vascularweb.org/vascularhealth/Pages/chronic-venous-insufficiency.aspx

[Chanasky]

I'll ask about MRI for gi tract and food allergy testing. I haven't had those yet, only a cat and ultrasound of my abdomen. Thanks for the tip

[Chanasky]

Yeah. Of course, I remember you too, Achillea. I think it was only a month or two ago that we communicated. Yes, the docs are sending me for another round of testing and The Cleveland Clinic is stil on the horizon, if all else fails.

I've actually looked up the idiopathic edema too (i've familiarized myself with even the rare causes of edema at this point) and I think that something like that is probably happening to me, though I think that it's related to my gi issues just based on my symptoms and experience.

The two issues both flare up at the same time and when one is improving, so is the other. I never experience digestive issues without accompanying edema and vise verse. Both symptoms are present constantly but they do wax and wane from day and day. I think the documented inflammation in my gut and colon is kicking off a systemic inflammatory  reaction in the rest of my body, or at least it feels that way to me. I always run pretty high white blood cell count too and my doc think it's reflecting the chronic gi inflammation

Thanks again for the input. I really appreciate it

[Chanasky]

Yup. That's exactly what it feels like, Ed, although I can't prove that the two are related at the moment. Every time my gi issues starts to flare so too the does the edema. When I'm at my worst, my stomach is hugely distended like a pregnant woman and very tender and the rest of my body grows thick with edema. It's a cycle I know all too well at this point and it does feel like some type of inflammatory reaction or allergic response that goes systemic on me.

Docs are reluctance to consider that the edema and gi issues might be stemming from singular cause, hence the reason I keep getting sent to specialists who haven't made a dent in terms of dx

My endoscopy showed very severe inflammation throughout most of my upper gi tract and colonoscopy detected a single large patch of inflammation in my colon, although I don't actually have ulcerative colitis, Crohn's or anything like that. Everything seems to fall under the heading of "idiopathic" so far.

[achillea]

I remember you!  We had quite the discussion about this problem, and I see that your docs have had you jump through pretty much all the hoops to determine a cause for your edema.

I'm going to mention another possibility, one that is extremely, extremely rare in men but which is known. You might want to use medscape to look up ''idiopathic edema' or sometimes 'capillary seepage'.  For some not-well-understood reasons, people with this condition have capillaries that are much more leaky than normal (and capillaries are already somewhat leaky by nature).

It carries apparently no long-term health consequences, but unfortunately, it is not curable.  However, as you will see, there has been been some success using the drug Spironolactone plus some other modalities.

Armed with this information, you have one more avenue of approach, and I hope you may get a little improvement with this in hand.

[ed34]

Well it looks as though you must have a gastrointestinal infection or disease. Any swelling of the intestinal tract can cause edema anywhere in the body. Have you had a mri of your complete intestinal tract? and an analysis of foods/allergies?

[Chanasky]

No. Lots of blood work too, ed. Metabolic panel, CBC, lipids and all the rest. I had 24 hour urine test for protein, as well as blood cell differential. Lyme test, immune panel to check for markers for Lupus and other autoimmune type disease (but those tests are just markers and not very definitive for the autoimmune illnesses)

[ed34]

You only mention the test you had with the heart and a colonoscopy, is that all you've had? no blood work?