Three weeks after discontinuing IV antibiotics he was on for 17 weeks, Tom is bleeding intermittently and VERY tired. All the time. I was sure it must be c. diff. or something else that would show up in stool tests, but got results today: everything was negative, and he has no cuff. I collected the samples and saw streaks of red blood throughout. Working on renewing referral to his GI, but wondering what else could account for this?
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False negative of C. diff?
Hate to suggest, but Crohn's, or maybe peptic ulcer?
Has he been tested for H. pylori?
Sorry to hear about this, Connie.
Hate to suggest, but Crohn's, or maybe peptic ulcer?
Has he been tested for H. pylori?
Sorry to hear about this, Connie.
Hi Connie,
So sorry to hear about this. I've been having a similar problem since mid-November, intermittent bleeding and fatigue, though the fatigue comes and goes as well. My hemoglobin has dropped (it's back up a bit now, but mostly because I've doubled my iron). But far, EVERYTHING has been negative. Pouch looks great on scope, no cuffitis, no pouchitis, MRI really didn't show anything (no polyps or stenosis), and c.diff cultures were also negative. My GI suspects one or more bleeding ulcers somewhere in the GI tract, too small to show up on the MRI. I'm still worried about Crohn's but I have none of the other symptoms. My GI wants to do a camera pill endoscopy but provincial insurance doesn't cover it for standard diagnostics, so we're sitting on that for the moment until we can work around the red tape. Anyway, I'm in a holding pattern until my next bloodwork, which he wants to repeat in mid-May. If I find anything out in the interim, I will let you know.
Hopefully this soon will pass!
So sorry to hear about this. I've been having a similar problem since mid-November, intermittent bleeding and fatigue, though the fatigue comes and goes as well. My hemoglobin has dropped (it's back up a bit now, but mostly because I've doubled my iron). But far, EVERYTHING has been negative. Pouch looks great on scope, no cuffitis, no pouchitis, MRI really didn't show anything (no polyps or stenosis), and c.diff cultures were also negative. My GI suspects one or more bleeding ulcers somewhere in the GI tract, too small to show up on the MRI. I'm still worried about Crohn's but I have none of the other symptoms. My GI wants to do a camera pill endoscopy but provincial insurance doesn't cover it for standard diagnostics, so we're sitting on that for the moment until we can work around the red tape. Anyway, I'm in a holding pattern until my next bloodwork, which he wants to repeat in mid-May. If I find anything out in the interim, I will let you know.
Hopefully this soon will pass!
Connie and Spooky -hoping things get resolved soon.
How is the C.diff being tested? For the most accurate it should be 'stool specimen by PCR testing'.
kta - Thanks! It's been very discouraging not knowing what's going on. I really figured I'd have an answer by now, with this going on intermittently for over 5 months. I feel for Tom and Connie going through something similar.
vanessavy - I collected the stool samples for the testing, but I'm not sure what method they used. I will definitely be asking my GI when I speak to his office next.
vanessavy - I collected the stool samples for the testing, but I'm not sure what method they used. I will definitely be asking my GI when I speak to his office next.
Hi connie -- I haven't talked to you in a long time and I"m so sorry to hear Thomas is still having problems. All my best to you.
Debbie
Debbie
Two different types of c. diff test were negative. He is still tired and sometimes nauseous, but the bleeding seems to have stopped. The NP at his latest orthopedic appointment speculated that all of it may still be after effects of the 17 weeks of antibiotics, which completely wiped him out while he was on them. In any event, things seem to be on the upswing today. Still in limbo with the foot. Infected hardware was removed, but healing is still incomplete. He'll give it a couple more months, and then maybe throw in the towel.
Hi, Debbie. Hope you're doing well. I'm actually on my way to see Kathy and Sue this weekend! It's been years.
Hi, Debbie. Hope you're doing well. I'm actually on my way to see Kathy and Sue this weekend! It's been years.