Has anyone developed water retention from IBD?

[KerryO]

I asked this question awhile back but I thought I'd ask again to see if anyone can relate to the symptom.

I've recently been diagnosed with non-specfic colitis throughout my entire colon, as well as chronic erosive gastritis and esophagitis with lots of bleeding. I have pitting edema/fluid in my legs and have put on quite a bit of water weight since I got sick. White blood cells are constantly elevated too. I was screened for heart, liver, kidney and protein issues but all okay.

I don't suffer from major diarrhea but rather lots of pain, extreme bloating and loose stools, all pretty typical for IBD patient, I guess. Not taking any meds at the moment, either

Doc is claiming that the edema is not related to the IBD but I think that she might be wrong about that. When my symptoms are really bad, the water retention gets much worse

Anyone ever hear of something like this before?

It's driving me nuts because I am thinking I've got something else going on in addition to the IBD and I need to pursue it. I really don't want to see any more doctors for awhile

 

[nogutsnoglory]

Tagging Afidz, I'm pretty sure she suffers from water retention.

 

[KerryO]

Thanks. Should I just search through her older posts?

 

[shamrock15]

What meds are you on? Pred gives me terrible edema now, especially if I make the mistake of eating high salt food.

 

[KerryO]

Nope. No meds. I just have the edema and none of the docs can explain it

 

[24601]

I answered before here but just to add that I do still have on and off issues with fluid retention just not as severe as I used to experience with low albumin and the abscess. My albumin is now normal (though it's at the low end of normal and I think higher would be better) and I take no meds that should cause fluid retention so I'm not really sure what causes it! Would love to get rid of it entirely though!

Are your doctors not proposing any meds for the colitis?

 

[afidz]

I take water retention to an extreme level. I am not sure if it is the hernia that I have or if it is IBD, but no one believes me. I hold it all in my abdomen to the point where I can squeeze water out of my skin. There are a few spots on my abdomen that I can tell just by looking that there is a lot of water under it. I do take water pills if I know I am having a day that I can easily go to the bathroom a lot, that seems to help. When I take them for a few days, I will loose around 15 lbs in a weeks time. I don't know what else to tell ya, no one will help me figure it out.

 

[KerryO]

24601-

Actually, the low albumin is a well known causes of edema. You probably developed the edema, at least initially, due to low albumin second to your IBD. My albumin/protein levels are normal, and always have been, so the docs don't have any explanations. I seem to have several health issues happening at once and the docs are trying to sort out which is which or if they're all stemming from a single cause. They're holding off on treatment at the moment to try and figure out if I have any other problems going on

I have the edema all the time but it does improve occasionally. It's also very generalized and I can feel it in my arms and neck but it's most evident in lower legs and feet where it leaves "pits" when pressed.

I was screened for heart failure, kidney, liver, etc and supposedly everything is normal but I am thinking that they must have missed something

Do you ever feel really "dried out" when you develop the edema? When I get a bad day with the fluid, my mouth is like a desert. Just bone dry. Skin is really dried out too. In many ways, the water retention is more uncomfortable and debilitating to me than the GI symptoms

 

[KerryO]

Gosh. That sounds awful afidz. Why aren't your docs trying to get to the bottom of it, instead of just giving you water pills? I don't think it's normal to walk around for extended periods of time with unexplained fluid accumulation. It just doesn't sit well with me. I'm normally a pretty passive person but have become very firm with the docs lately. When I'm passive, they just seem to forget the specifics of my case and let things linger much longer than necessary.

You can always get a second opinion, if you're not happy with their treatment approach. Do you get the edema in your lower legs or just abdomen? I think I'm carrying about 20+ pounds of fluid at this point, given how thin I was before all this started. It does seem very connected to the GI symptoms too

 

[24601]

I haven't particularly noticed feeling dried out - although my skin can get very dry at times. But the skin on my legs does get shiny - absolutely like a mirror, you can see a reflection in it - and doctors tell me that this is because it's stretched by the fluid. I really don't know if they are right!

The things is that now my albumin is normal (it has been for about 6 years) that they don't seem to have an explanation and yet I can appear to lose or put on a massive amount of weight overnight - which of course is just fluid! They just note that I have pitting edema and that's it! I'm having lots of tests ahead of my stem cell transplant though so if there were anything to find I think they would...not that that solves this problem!

It does seem to have improved with my last surgery (not for the abscess) perhaps because they removed the active disease from my intestines.

Anyway good luck with sorting out your health issues! I hope they get some answers for you and you can start treatment soon!

afidz - I agree that I think your doctors should be taking this more seriously. I experienced fluid leaking through my skin after surgery once (as my already low albumin plummeted) and it was not good! Sorry that you have to deal with that all the time!

 

[KerryO]

24601-

Well, it's good (for me, not for you : )) to know at least someone else out there has a similar symptom. I am beginning to feel like a freak of nature with all these obscure health issues.

Before I got sick, I always had a fantasy that if I ever fell ill, the docs would be there to sort everything out and at least tell you what was happening and help me through it. I look back now and think to myself how naive I was. I ran into one or two decent docs but the rest have been nothing but headaches and not very helpful at all

Good luck to you!

 

[afidz]

My doctors just think I am making excuses for my weight.
Up until about a month ago, I was only retaining it in my abdomen. But I think my abdomen held as much as it possibly could so it went to my ankles and feet for a little while. I am going to be finding a primary doctor, just have to find a really good one that can help me get to the bottom of it. I hate seeing new doctors, my health history is extensive and complicated and it always takes me so long to get a new doctor on the same page. I want to be listened too, I am not an idiot and have a pretty good understanding of what has happened to me.