Questions from a new member with UP

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

HeyfromLA
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/10/2008 2:33 PM (GMT -6)   
Hi there - I was diagnosed with Ulcerative Proctitis about four months ago. Initially my GI gave me Canasa suppositories and now I'm on 1.2 GM of Lialda daily. I took the Lialda for two months and felt much better, so I went off it cold turkey and now am feeling worse again. My symptoms initially included blood and pus with stool and some weight loss (which may not have been related). So far I haven't had the big D because apparently my infection is low enough that it hasn't caused it. My stomach (or bowel?) seems to rumble and make noises quite a bit. So, I have two questions: if I'm not having a problem with diarrhea yet, is that still to come? And secondly, if I'm in true "remission" will my body always make these growling noises when I eat? For the past two months I've had no blood or pus, but still much stomach rumbling. Before this I could eat just about anything, so it's really bothering me. I also take Probiotics, Vitamin C, B-12 and Aloe. I'm a 40-year-old single mom with a stressful job, so I'm trying to control stress in my life. THANK YOU for your help - it's nice to have someone to talk to about this.

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 8/10/2008 3:33 PM (GMT -6)   
Hi...welcome to the forum. I'd say those are good warning signs that I'd pretty much heed as the start of a flare.

Start back on the Lialda (you should never have stopped), and go back on the Canasa nightly. I much prefer the retention enemas..but you can take the Canasa up to 3 times a day if needed.


If you start having diarrhea, that means that the inflammation has probably creeped upward higher into the rectum and probably past heading to the sigmoid colon.

Once you deal with the rectal symptoms and the inflammation starts to recede, then your stomach discomfort will lessen.

You could also ask the doc if he could prescribe an antispasmodic...that too will help.

I'd say you have low in the rectum inflammation and should start dealing with it now. For me, the stomach discomfort, gas (that seems to explode in the rectum before exiting) and rectal pain/discomfort upon bms is a sure sign.

Being a single mom and stressful jobs don't help, but if you have your med regimen set out well and are faithful to your meds, you can aleast help to keep inflammation as low as possible and treat flares early.

What aloe are you taking?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/10/2008 3:47 PM (GMT -6)   
Never stop taking your medication, even in remission. Just because the symptoms go away doesn't mean the disease has, and it will come back full force sooner or later. Lialda and Canasa are maintenance drugs for a chronic health condition.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


HeyfromLA
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/10/2008 3:57 PM (GMT -6)   
Hi quincy - thanks for the advice. I'm taking just regular OTC Aloe capsules 1.2 mg extract and 308 mg powder, just one per day. Not sure if that really makes a difference - I'm open to all advice. I looked at that Molo-Cure, but I didn't like what I heard about it on this forum, especially since I am type O blood and that caused a big problem for someone. I'm hoping to keep my current condition contained so it doesn't turn into a major D problem, so I'll stay on my drugs. Hopefully this is as bad as it gets - who knows??

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 8/10/2008 4:03 PM (GMT -6)   
I'd actually nix the aloe at this point anyway.

What dosage were you on the Canasa...did you stop them as well?

Are you back on? them how often?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


HeyfromLA
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/10/2008 4:08 PM (GMT -6)   
Canasa 1000 mg, one per night. I took those for a month, then my GI switched me over to one Lialda per night for maintenance, so no, I stopped using the Canasa. Are they inter-changeable - for example, could I stop the Lialda and go back on the Canasa instead?

quincy
Elite Member


Date Joined May 2003
Total Posts : 31004
   Posted 8/10/2008 4:15 PM (GMT -6)   
No....you use BOTH. The Lialda covers above the rectum or sigmoid..depending on your symptoms and body..etc.
The Canasa covers the rectum only. Both ends approach.

You will taper the Canasa to maybe once a week....but that's a low dosage of rectal meds...hopefully, that's all you'll need.

The retention enemas will cover up to and into the sigmoid...it's also more medication directed at where UC starts and is the last to heal. They come in a 2g and 4g dosage.

You do have an option for using the Canasa 3x daily, or as some have done...stack them using two at once.

All the above are options.

Your goal is to keep your UC where it is and treat early.

We've all probably tried to get off our meds, and some have been successful....but since UC is lifelong and for many it's spread upward...,my experience and success with meds for almost 20 years tells me it's good go use them.

Besides, you never want to get to the point where you need more powerful meds...if you can use 5ASA meds...USE them.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/11/2008 11:27 AM (GMT -6)   
all good advice! Take your meds or you will flare up.

Also aloe can cause diarreah, I know aloe juice can cause diarreah and is not recommended for anyone w/UC. There are different types of aloe people can take but it's the 'juice' that can cause D. I'd stay away from it completely and try some probiotics for your stomach.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 15mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


HeyfromLA
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/11/2008 8:29 PM (GMT -6)   
Thanks Beth, that's helpful. I'm takin' my meds.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 4:51 PM (GMT -6)
There are a total of 3,006,195 posts in 329,313 threads.
View Active Threads


Who's Online
This forum has 161825 registered members. Please welcome our newest member, TheRayf.
340 Guest(s), 8 Registered Member(s) are currently online.  Details
borrelioburgdorferii, Froggy88, cashlessclay, Serenity Now, Admin, Lymie24, Envsciguy, Shayanv