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Posted 5/30/2015 10:32 AM (GMT 0)
I guess I've had a good run. 7 years with this horrible disease. Only four years using Pentasa. 1g sup at night. Either my inflammation has spread within a few months or the medications no longer working. I've increased to 2g a day. One enema and a supp.. It's made little difference. I got very little urgency, some blood, and just foul smelling direah. Direah has never been a symptom for me... NEVER. It's always been constipation, blood, mucous, and puss.

Post Edited (Petah) : 5/30/2015 6:03:38 AM (GMT-6)

Posted 5/30/2015 11:33 AM (GMT 0)
Sounds like your UC has moved up further than what the enemas are reaching. If you're not using oral mesalamines you should be using them in addition to the rectals. It usually winds up being a mistake not to treat from both ends, even with a UP diagnosis.
Posted 5/30/2015 11:40 AM (GMT 0)
"Only four using Pentasa"

sounds like the other end to me - sorta !
Posted 5/30/2015 12:05 PM (GMT 0)
Sorry yes only four years.. I've been getting a lot of upper discomfort followed by a bowel movement..
Posted 5/30/2015 12:40 PM (GMT 0)
Petah, time to move on to stronger drugs if you've been struggling? I'd get a scope first (flexible-sigmoidoscopy or colonoscopy) to see exactly what's going on up there. You might need an oral meslamine (asacol, pentasa-oral, etc), if your uc has spread upwards. I'd get in touch with your gastroenterologist, explain your symptoms, and he/she will likely want to have some diagnostics done.
Posted 5/30/2015 12:49 PM (GMT 0)
Yeah I know.. Just waiting (11th of June) to see my GI.. In the mean time my GP has been running stool tests (DNA, and C.Diff) I'm thinking of asking for a CT Scan.. Probably won't do another colonoscopy since I'd only had one in November. That showed 8cm rectal inflammation (original Diagnosis) last time I seen my GI (about two years ago) he put me on enemas and said see if they keep my symtoms away longer, and if not he'd do fecal transplant. I don't have the money so it probably won't be an option in June. My GI works with Barody in Sydney
Posted 5/30/2015 1:00 PM (GMT 0)
Glad you are getting stool tests. A change in stool smell to foul smelling can definitely indicate infection. It's important to be thoroughly tested for all pathogens and c diff. C diff is notoriously hard to identify in stool samples, do check with your GI which type of test they are running. Mine was identified by scope, the ulceration was of a different colour.

We are of course all different but for me foul stool smell has always meant infection on top of UC.
Posted 5/30/2015 1:07 PM (GMT 0)
Yes it's foul and orange. I'm embarrassed at the smell. It lingers in the room and it's hot coming out
Posted 5/30/2015 1:19 PM (GMT 0)
I had the same with the smell, nothing would clear it, I couldn't actually stand it hardly myself! Stools were more yellow than orange I'd say. For me, even though they couldn't find c diff in the sample, the visual look of it meant that I was prescribed Flagyl, and although Flagyl made me horribly nauseous, the bad smell was gone in a week and I was better. I then had diarrhea but it was dark and VSL #3 got the stools formed again.

When will you get your stool sample back?
Posted 5/30/2015 7:16 PM (GMT 0)
foul smell for sure is the result of taking boulardi, many people on the Polish uc forum have been complaing about it. Try reuteri probiotic, i've started taking it after reading the posts on healingwell and i think it's just brilliant, in my opinion better than vsl :)
Posted 5/30/2015 7:18 PM (GMT 0)
i've just checked the posts on the Polish forum and they exactly say that foul smelling and orange stool is the effect of taking boulardi
Posted 5/31/2015 2:13 AM (GMT 0)
I had it before the boulardi and it actually reduced when I used the boulardi. It's back now that I've stopped the boulardi.. Smells like infection, it's so over powering.. It smells hot! It's disgusting and makes everyone heave.. I feel very embarrassed about it. Like I said previously I've never had direah as a symtom of UC. I'm not getting nausea yet and urgency is not an issue.. It usually is if it's my UC. This has been going on for over a month now
Posted 5/31/2015 3:38 AM (GMT 0)
Sounds suspicious for cdiff esp since offensive odor and diarrhea.
Posted 5/31/2015 3:57 AM (GMT 0)
Yep. The smell will linger in the room, it's a sour infected smell. My Dr didn't want to text for C.diff because it's expensive and she said I'd be very sick.. But I insisted she take it serious.. She's lovely and knows how scared I get. She done the tests, so I'm just waiting
Posted 5/31/2015 5:36 PM (GMT 0)
You're all over the place regarding symptoms.....frustrating for sure.

1) get stool testing done.

2) ask for a higher dosage of enemas

3) get on an oral mesalamine

4) take better probiotics with multistrains.

q
Posted 5/31/2015 7:33 PM (GMT 0)
Yes I had some relief from the boulardi. That was short lived because I stopped it. Just using fibre/slippery elm to slow things down.. I've increased to two enemas a day. Still haven't noticed any improvement. I will talk to my GP about oral meds
Posted 5/31/2015 9:59 PM (GMT 0)
great you're retaining the enemas....perfect step.
Yes on the oral meds...I would thing that nothing more than 2400mg to start.

q
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