Recently diagnosed w/Crohn's, infliximab seems to be working, concerned about peripheral edema

Hi, I posted in the ulcerative colitis (which I was diagnosed with about 5 years ago) forum some months ago during a flare. Following a colonoscopy I was diagnosed with Crohn's. Prednisone and mesalamine weren't working so they started me on infliximab. The progress has been very slow, but it's working. I had lost over 60 pounds (most of it muscle) and have gained about 30 pounds back. My stool is somewhat formed although still usually soft. Very seldom diarrhea in past few weeks. No more severe abdominal pain and bloating. Just persistent mild discomfort, but that seems to be improving.

I was very worried a few months ago. But now it seems possible that I'll be able to live with this. My diet is normal, and currently I'm not taking any medications other than the infliximab infusions.

Along with the Crohn's/UC flare I developed severe anemia. But I'm seeing very little signs of blood in my stool recently, and am feeling stronger with each day. I was so weak at one point that I couldn't even open a bottled water top. Couldn't even do 1 pushup. If I walked more than 20 feet or so I felt fatigued. My resting heart rate was well over 100 bpm.

Anyway, all is slowly but steadily improving now, and I want to thank the people in these forums for providing support and answering some questions.

Now I have another question. During one of my 4 hospital stays during the past 4 months I developed pretty severe edema in my legs. This has improved, but it's still in my calves, ankles and feet. What I want to know from anyone who has experienced this is if I can expect this to go away, or will I be dealing with it for the rest of my life (I'm 64)? And, any suggestions on how to get rid of it. I've cut my salt intake drastically, and I walk a lot, get lots of rest, am eating as much protein as I can, and am drinking lots of water. Anything else I should be doing?

I still can't run because of this, and it's quite frustrating because I'm an avid tennis player. Still, I'm very thankful that I'm not like I was a couple of months ago. It was the worst thing I've ever experienced in my life

Best wishes to all.

I'm glad the medication is working! I am on the same thing (remicade) and it has also helped me a great deal. If you have edema it is really important your doctor knows about it to make sure there is nothing underlying that is causing it - make sure you mention it. There is also medication you can take to flush out some fluid, but first you want to check out why it is happening. In the meantime, enjoy the better -functioning bowels and I sure hope your crohns keeps heading in a positive direction!

I got bad edema in hospital - particularly in my lower legs and feet. Also got a puffy face. The swelling disappeared after I left hospital; the only bloating I get now is in my stomach :-/

Are you on steroids alongside the Remicade? (They cause edema.) Is it possible you are drinking too much water? (We really don't need to drink gallons a day, unless we are running a marathon in a desert.) You weren't, I presume, drastically undereating then switched suddenly to eating a lot? (That can cause massive edema.) Other that I got no ideas, I'm afraid, and probably none of those help :-/

@Lucybell - you can take diuretics to get rid of fluids via peeing them out, but that's really not a good idea without checking out the underlying causes of the edema. Which means seeing a doctor...