I'm having a tough time with hydration currently. Have a PICC line and am getting two liters saline twice per week as I cannot hold salt in tissues. Also take 650 mg sodium bicarb 2 x daily. The last several times I've had hydration, I feel bloated, have constricted breathing, feel pressure behind my eyes, and awake the following morning to a super plump condition in hands and face (not in feet or legs). My PCP thinks I need less fluid at a time and over a longer period, but must have hydration until we figure out a better way. Yesterday, Friday, after Thursday's hydration (excessive?) my stoma swelled to nearly twice its normal size. I have to pop it through the wafer opening. The stomal mucosa is bleeding, not just the normal touch-it-roughly-and-it-bleeds, but oozing blood. I've checked on it each time I've emptied and it isn't abating. Also, one edge of my stoma is kind of ulcerated and slightly purpled looking and painful. I just talked to my doc who, luckily, is on call this weekend. He thinks it's third spacing of fluids that's causing both the tissue swelling and the swollen stoma, and says it probably is safe to just watch it for another 24 hours, thinking it will probably go down and the bleeding will taper off. I have no vomiting, nausea, or fever. Just discomfort and concern. Thanks for any help. (Third spacing is when fluids are held in places where they get trapped rather than where they are supposed to be.)
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Sierran,
You might want to post this in general too...you may get more responses that way...
Hope that this resolves quickly for you.
Sharon
You might want to post this in general too...you may get more responses that way...
Hope that this resolves quickly for you.
Sharon
Have you had your serum albumin levels checked? Low blood albumin can cause chronic fluid/electrolyte problems. It is a sign of malnutrition. It does sound like you are getting fluid overloaded with 2 liters at a time. It is not good for your heart. You'd be better off with 1 liter 4 times a week.
Jan
Jan
Thanks, Jan and Sharon.
Yes, all my blood work is perfectly normal, also UA. Had chest xray and EKG. Small bowel follow through. All normal...When I stopped taking the sodium bicarb, all my symptoms diminished or nearly disappeared. But now, just below my stoma by an inch or inch and a half, it appears the skin is thinning in a quarter sized spot, and leaking serous fluid, and I am having vaginal drainage of the same color, both with a very strong briney smell. That's been going on for three days. Today it looks as though both drainages are darker, more stool colored, and the vaginal one smells like stool. Seven years ago, when things were at their most desperate and I considered just folding my cards, I had two vaginal fistulas, which were stapled up/repaired when my ileostomy was done. This all feels much too familiar....I am going back to UCSF to see my GI doc there, and perhaps the surgeon, although my stoma is fine now....The fistula repair and scarring from the surgeries have left me with a vagina that's too small to be scoped locally, so I've in the past gone to a gynecological surgeon also at UCSF to be examined. Thinking about returning to her - maybe this is just a pinhole fistula opening. Maybe my body is trying to remedy the third spacing and abdominal fluid with fistulas???Is that too far-fetched. What's the rate of success for repairing fistulas? I am so discouraged that I can't muster my usual optimism and determination....I can't get in to see UCSF GI til mid-April....I've been to see a surgeon here, and he thinks the abdominal wound is just abrasion from clothing or my bag. Not possible....He thinks I may just have pooling vaginal fluid (odd anatomy cuz of scarring, is true) because I've been so sick and mostly lying around. That's unlikely, too....Ah....what to do.
Yes, all my blood work is perfectly normal, also UA. Had chest xray and EKG. Small bowel follow through. All normal...When I stopped taking the sodium bicarb, all my symptoms diminished or nearly disappeared. But now, just below my stoma by an inch or inch and a half, it appears the skin is thinning in a quarter sized spot, and leaking serous fluid, and I am having vaginal drainage of the same color, both with a very strong briney smell. That's been going on for three days. Today it looks as though both drainages are darker, more stool colored, and the vaginal one smells like stool. Seven years ago, when things were at their most desperate and I considered just folding my cards, I had two vaginal fistulas, which were stapled up/repaired when my ileostomy was done. This all feels much too familiar....I am going back to UCSF to see my GI doc there, and perhaps the surgeon, although my stoma is fine now....The fistula repair and scarring from the surgeries have left me with a vagina that's too small to be scoped locally, so I've in the past gone to a gynecological surgeon also at UCSF to be examined. Thinking about returning to her - maybe this is just a pinhole fistula opening. Maybe my body is trying to remedy the third spacing and abdominal fluid with fistulas???Is that too far-fetched. What's the rate of success for repairing fistulas? I am so discouraged that I can't muster my usual optimism and determination....I can't get in to see UCSF GI til mid-April....I've been to see a surgeon here, and he thinks the abdominal wound is just abrasion from clothing or my bag. Not possible....He thinks I may just have pooling vaginal fluid (odd anatomy cuz of scarring, is true) because I've been so sick and mostly lying around. That's unlikely, too....Ah....what to do.
Gee, with the symptoms you describe, this sure sounds like a relapse of the fistula. You don't still have your rectum, do you? Third spacing of fluids will cause swelling/edema, but shouldn't cause a new fistula. If it was already there, I suppose the fluids could cUse it to drain.
I hope that things will simmer down until you can get back to SF. I'm sorry you are having this setback.
Jan
I hope that things will simmer down until you can get back to SF. I'm sorry you are having this setback.
Jan
Thanks, Jan. Nope, have barbie butt now. Yep, it certainly looks like a fistula to me. I've not had the cutaneous wound before, but who knows what this body is trying to do!? I don't have a lot of energy because of the dehydration and fluctuating b.p., but having watched the fistulas before, I anticipate what's in store as the drainage increases.....Maybe if I get the hydration/tissue fluids issues solved, the fistula will close. Don't know if this is the same fistula spot as before - they were just very small, and repaired/stapled at my ileostomy. An awful ten months or so of searing pain, being housebound, blah blah blah...Hoping for a sooner appt than mid April at UC, but of course they haven't as much incentive as I do to change my appt to earlier. Thanks for your encouraging words, Jan. When you suggest things to look at, I'm either heartened that my docs have been right on it, or if not, I know what to do next....
Regards, Barbara
Regards, Barbara
Barb,
You may want to PM Liz. She has been struggling with a persistent sinus tract/infection and has been seeing Drs. Remzi and Shen at CC. Maybe if you compare notes with her, you might get some new insight and ideas.
http://j-pouch.org/eve/persona...profile&u=3721048013
I would suspect that you may have a deep cavity abscess, which is the source of many, if not all, of your symptoms.
Jan
Update: I had posted the wrong link (wrong Liz). Sorry about that. I fixed it.
You may want to PM Liz. She has been struggling with a persistent sinus tract/infection and has been seeing Drs. Remzi and Shen at CC. Maybe if you compare notes with her, you might get some new insight and ideas.
http://j-pouch.org/eve/persona...profile&u=3721048013
I would suspect that you may have a deep cavity abscess, which is the source of many, if not all, of your symptoms.
Jan
Update: I had posted the wrong link (wrong Liz). Sorry about that. I fixed it.