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Ulcerative Colitis
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Posted 6/14/2016 4:54 PM (GMT 0)
Dear All,
It's been over 2 weeks since I finished the prednisone. I'm still on Uceris, however. I have mucous, bloating and urgency several times a day. I get this weird mucous which is whitish with some red, that could be blood, the first time I go in the morning. After that none of the BM's have this odd mucous.
The gastro prescribed dicyclomine (bentyl) which I take every 5 hours or so do deal with the symptoms. I'm scheduled to meet with him on Monday.
I'm just tired of the unending symptoms. I feel like a prisoner as I can't do very much else.
Best to you all!
Teacher
Posted 6/14/2016 4:59 PM (GMT 0)
Do you take the maximum dose of Apriso? I feel like I was taking way more than 4 capsules. I would definitely make sure you're on the max dose and continue with Uceris until you get things stabilized. Get on some butt meds. Change to a different mesalamine if you're not having luck with Apriso. Have you tested for c diff?
Posted 6/14/2016 5:12 PM (GMT 0)
How often are you having bms daily and what's the consistency of them?

Have you tried steroid enemas...foam...in conjunction with mesalamine enemas?

I would suggest you change your probiotics and add fibre supplements....

q
Posted 6/14/2016 5:31 PM (GMT 0)
Sounds like you need a stronger class of uc medications. Immunomodulators (Imuran or 6mp) would be next. Although some gastroenterologists are going straight to biologics (remicade, humira).

4 apriso is a typical dose for uc, it's the only mesalamine with a low dose. A tricky one
Posted 6/14/2016 5:37 PM (GMT 0)
Approx 5 BMs + 3-5 times for just mucous. And the urgency is very high with each. I'd asked the gastro for Canasa/Rowasa, but he didn't respond and prescribed the bentyl. I take 4 pills of Apriso and 9mg of Uceris.
I've had a horrible c. diff several years ago, but I don't know about this round of flaring. I'm a lot better than I was before the preds, but I seem to have plateaued out.
Posted 6/14/2016 7:17 PM (GMT 0)
so remind us (me) what your current diet is like - and has it changed much since 2004 ?
Posted 6/14/2016 8:37 PM (GMT 0)
Bentyl is an antispasmodic and won't help your flare inflammation but will help with gut hissy fits.

Ask again FOR Rowasa AND Canasa...using the enema nightly and the suppository daily.

q
Posted 6/16/2016 2:24 AM (GMT 0)
Repeat bouts of urgency daily does sound like the rectum needs retention enemas nightly for a while. Suppositories won't do the job that far in. That could be why you're expelling only mucus at times. Hang in there! It does sound like you're slowly improving, but still need to keep after this flare. All best wishes! Have you been teaching throughout, or can you take any sick leave? (I know that's a tough issue.) / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname colazal)
Posted 6/17/2016 4:11 PM (GMT 0)
Luckily, I'm done with teaching for the summer (no pay though). It was getting quite bad the last few days and I'd have panic attacks of an 'accident' mid teaching. I'm scheduled to see the gastro on Monday. The improvements, if any, are very slow. It may just be that it'll take the whole summer for recovery and I'll be back at work with no break.
Posted 6/19/2016 12:25 PM (GMT 0)
Also, I'm not sure the dicyclomine (bentyl) did much at all. I still have bloating, urgency and mucous. I'm to see the gastro tomorrow but I'm nervous about the visit.
Best, Teacher
Posted 6/19/2016 12:30 PM (GMT 0)
butt meds and diet modification
Posted 6/19/2016 4:32 PM (GMT 0)
Are you going to ask for the enemas and supps?

The bentyl will be of great help for discomfort and spasming and nausea, but not for inflammation.

Let us know how the appt goes.
q
Posted 6/21/2016 8:02 PM (GMT 0)
Dear All,
I saw the gastro yesterday. He's asked me to come in for a colonoscopy, next Tues. He was not sure if it was a UC flare that's continuing, or now IBD. He want's to wait before prescribing anything new. Very depressing still.
Best,
Teacher
Posted 6/21/2016 8:27 PM (GMT 0)
huh ?
Posted 6/22/2016 11:05 PM (GMT 0)
Did you mean to write "IBS" above -- instead of "IBD"? / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/25/2016 10:56 PM (GMT 0)
Perhaps he said IBS. I've just been somewhat depressed and wasn't listening well. The constant discomfort etc has gotten me down and everything seems pointless. I barely get to do anything and feel like a prisoner. The longest I've been in remission for the past 15 years since first diagnosed is a couple of months. But then, it's not been a terrible flare like some of the others on this site have had and the pain they've had to endure, so I should consider myself lucky. Still, it's a tough disease to handle, with no end in sight. And a disease through no fault of our own, for the most part.
Best to you all,
Teacher
Posted 6/26/2016 3:42 PM (GMT 0)
Please push for the enemas. ...let us know how the scope goes.

Do you have light sedation and watch the monitor?
q
Posted 6/27/2016 4:42 PM (GMT 0)
Usually, I'm knocked out during the. Right now, I'm not enjoying the prep for the scope. And I know it'll only get worse as the day progresses.
Best,
Teacher
Posted 6/27/2016 4:51 PM (GMT 0)
What prep are you using? Yeah, it's not the best part of the process. Looking forward to hearing how you're doing tomorrow after the scope.
q
Posted 6/27/2016 7:07 PM (GMT 0)
Good luck with prep/scope and definitely keep us posted on your condition when you feel up to it. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/27/2016 8:39 PM (GMT 0)
Thanks! I started with 10oz magnesium citrate at 10:00am. Usually I don't react to it much until I start on the miralax (512g, half at 6:00pm and half at 10:00pm). But today, an hour after the citrate, I started with the watery BMs and it's been like that all day. Not to mention the pain (usual with the watery BMs and miralax but earlier today). I'm not sure how I'll manage the miralax.
Posted 6/27/2016 11:19 PM (GMT 0)
Thinking of you, and looking forward to hearing that you are finished with the procedure and maybe have some answers?
Posted 6/30/2016 12:51 AM (GMT 0)
Dear All,
Thanks for keeping me in your thoughts. The scope showed significant inflammation on the left side, but there was a clear separation after which things were quite OK (probably maintained by weeks of UCERIS). The gastro's given me a heavy-ish dose of preds (40mg, 2 wk, 30, 20) then I meet with for follow up. I'm also to take in Rowasa. He's prescribed it 2x daily, but the new prescription insurance (Caremark) will only cover 1x, so I need to call and see if it'll help if the gastro calls and speaks to them directly.
I think much of this could have been avoided if he's prescribed Rowasa initially, 3 months ago when I asked him to. Oddly, then although he got me to take pred, he did say he wanted to avoid overdoing it so I'd be able to use preds if/when needed at a later date. This new pred prescription will complicate the future. Not to mention the short & long term side effects. But I still have to make it thro this bout.
Best to you all,
Teacher.
Posted 6/30/2016 2:09 AM (GMT 0)
Hi...well, it seems to fit your symptoms.

Refuse the prednisone because of what you just said....I'd refuse it regardless....Since you're still on the Uceris, request to take the Rowasa at night and ask for a steroid foam or liquid to use during the day.

You have options.
q
Posted 7/4/2016 8:07 PM (GMT 0)
Like Quincy, I wonder why your gastro didn't Rx hydrocortisone or even budesonide retention enemas before going to Pred-- especially in view of his comment RE future Pred use! Continuing best wishes ... / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
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