Darn Ulcerative Proctitis!!

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ZLSJ
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Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 10:07 AM (GMT -6)   
Had a nice week and a half of relatively normal BMs (still 2-3 times a day), no bleeding, no tummy issues, mindset was much better...everything seemed to be cruising along then BAM!! Just when I  thought I was in remission!
 
Valentines dinner with friends and had a real cornucopia of different foods, (duck spring rolls, mussels, steak,...you name it). Then early Sunday a.m. it started, and off to the washroom I went...8-10 times that day. Loose diarrhea type stools every time. (quick way to lose weight) I assumed something didn't agree with me but now 2 days later and I seem to be back to having same issues as previous. Urgency with very little or nothing going on, blood again, tummy issues....rats!!
 
I was hoping it was just something I ate that didn't agree with me and I'd be back to the way I was for the last week and a half.  No such luck it would appear.
 
I stopped Cortifoam approximately 2 weeks ago (GI's Head Nurse said to stop if I had no more bleeding) but am still taking 4 x 800mg Asacol.

ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 11:22 AM (GMT -6)   
Could this just be a case of food poisoning/something not agreeing with me? My wife had a few stomach issues following the evening but nothing like mine.

Am I just predisposed to something like this because of the UP/IBS?

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/17/2009 11:28 AM (GMT -6)   

Yes to all of the above.  I have had IBS for about 30 years and when diagnosed with UC (mostly proctitis) I have had to separate the two at times.  I KNOW that sometimes WHAT I eat makes the urgency, etc. worse.  Sometimes not!  I was doing fine a few months ago and went out to eat - seafood - and immediately - like 30 minutes - had all the symptoms you describe and was sick for a couple days - just felt lousey.  I believe the seafood was not just right and set off my IBS which in turn aggravates the UC.  Just hard to know what is going on sometimes.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 11:41 AM (GMT -6)   
Hoping you're right Elaine.
 
Am thinking it's the seafood...and I don't even like mussels, I just ate them to be the polite guest! Tummy is still giving me the gears, but trips to the bathroom have slowed down slightly compared to Sunday. 

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16736
   Posted 2/17/2009 12:38 PM (GMT -6)   

Seafood seems to get me too.

Maybe it is from stopping the enemas?

I notice that I have good days and bad days. I hate when my bad days become the norm. Maybe you're having a few bad days and things will get back to normal.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 12:59 PM (GMT -6)   

Was hoping I was done with the Cortifoam enemas for a bit, but looks like I'll probably continue with them as of tonight.

I should likely check with GI's office this afternoon to ensure this is what I should be doing.

 


Kiss520
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Date Joined Jun 2008
Total Posts : 742
   Posted 2/17/2009 1:06 PM (GMT -6)   

I think eating something bad can upset an existing or mild flare, and then it's hard to get back to where you were. 

I just have to say - don't ever eat anything you don't want just to be polite.  If anyone has a good excuse to say "no thanks" to certain foods, it's us. 

I hope you can back on track soon.  I know how frustrating that can be.  Good luck.  ;-)


DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/Sunflower Seed Diet
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Remission
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 2/17/2009 1:31 PM (GMT -6)   
It's because you stopped the enemas. The extra rich foods would be a separate issue...nice when it all happens together.

You should, however, call the doc and request to try the Salofalk enemas...

Never, ever stop the enemas cold turkey.....that's the reason I suggest to taper them to a maintenance dosage.

If you look back, you'll probably see that your bm cycle wasn't "normal"...and remember that bleeding isn't the only symptom of inflammation.

keep us posted as to how you're doing.

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 1:52 PM (GMT -6)   
Quincy,
 
I knew you'd give me heck for that! It wasn't totally intentional to go cold turkey...even though I was told to stop them I had planned on going every second night to start, forgot a couple nights and things seemed to be ok so never maintained a maintenance mode.
 
And where did that get me!! No place I guess, because it seems like "old times". Sunday was about as bad a day as I've had. I felt like I was preparing for a colonoscopy!

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/17/2009 4:16 PM (GMT -6)   

I was told to stop cold turkey but that was because every day I was doing worse!  Just called my NP and I am on prednisone taper.  First week 40 mg., this week 30 mg. and then 20 mg. for two weeks and call and let them know how I am doing after using 20 mg. a couple days.  No additions - no other rectal meds (tried them all pretty much) - nothing more until the doc sees how I do on the prednisone.  So far - so good.  This morning was not as good but nothing like real flaring - 4 bms - last very soft.  Anyway, I ate 1/2 eclair - who knows?  I could easily live with what I have now if inflammation is healing/is healed.  Still little discomfort showing not ALL healed.  WE are all different and we certainly see that here. I know my doctor has been discouraged that I could not take mesalamines or enemas, etc.  I believe his thinking it getting the prednisone as low as possible without the symptoms (at least partila remission), keeping it there and adding like 6MP.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/17/2009 8:31 PM (GMT -6)   
Couldn't talk to GIs office today, but will follow Q's advice and fire-up the enema machine tonight!

Would really like to get checked over by doc again. I've had several office visits but no physical examinations.. as it has been 9 mos since c-scope to get to a point where I thought I was getting somewhere and then 'bang' right back where I started from. I know this is old news for all you long time UC/UP sufferers. Welcome to the "club" I

quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 2/18/2009 1:31 AM (GMT -6)   
ZLSJ..Most of us can relate to being slammed back to square one. I did that a lot the first year. Definitely sucks. And regarding the rectal meds...it's a learning process. I still think you should ask the doctor for Salofalk retention enema...it's unfortunate that we don't have the 5ASA foam available in Canada.

I suggest that you make your GI appointment with the intent of a c-scope by year 1...maybe better than a simoid scope, done with all the biopsies so that it can be stated whether there is consistency, improvement or increase/no change.

Anyway, that's what my doc did the first year. After that it was every 3 years because all biopsies were good, visually and microscopically there was improvement and we were on the right track.

Make sense?

Hope you didn't do any siip/slide dances last week! yeeha! Loving the weather now however!

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/18/2009 5:29 PM (GMT -6)   
I guess I'll have to chalk this up to experience....

Stopped the enemas cold...I'm paying the price by going right back almost where I started. Urgency...nothing there. Then when there is, it's back to the loose diarrhea type

I'm finding the re-engaging of the IBS more of a nuisance then the bathroom trips. I dislike the spasming feeling! I never realized how much I have been watching what I eat. Not cutting out that much but definitely not eating stuff like I

ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/18/2009 5:42 PM (GMT -6)   

Ooops, fat fingers, wasn't quite ready to post.

As I was saying...I haven't been cutting out that much, but definitely not eating stuff like I did on the weekend in one sit down meal. There really is a correlation of the food that we consume and the issues our bodies present us with in turn! Not that I haven't read it a thousand times, but I think I can say this is the first time that I noticed it smacking me upside the butt so to speak.

This is such a great place to be when your spouse gets tired of talking about these "internal" issues. Thanks to all for being here to share these experiences and to offer all the kind thoughts and words of advice.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/18/2009 7:22 PM (GMT -6)   

I know that IBS just makes the UC even more complicated.  Sometimes I forget that if I eat a large, heavy meal I will have to GO FAST!  Been that way for 30 years.. However, with UC too that means possible many trips, blood, mucous - you never know.  I have been trying to eat small at restaurants and take the rest home for the next day - leaving out fried, spicy and heavy food - eating slow - enjoying the company.  1/2 broiled fish or steak, 1/2 baked potatoe - no raw veggies - maybe small bread or roll eaten slowly and enjoyed.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 2/19/2009 10:33 AM (GMT -6)   
Hi..well, the IBS and UC in combo is difficult to differentiate sometimes.

The food wouldn't have caused your flare....

Sitting down to eat a pot load of chinese food (which restaurant didyou have from?)...there's high fat, spices..etc.

don't look at it as a failure....many of us have had the experiences and eventually have realised maintenance meds and some change in foods are helpful. Especially when flaring.

Hope you have a better day.....oh....and while I'm at it...ask for Bentylol, the 10mg is good to start.
It'll help with the spasming.

Keep us posted as to how your day went..

quincy
(this is my kind of weather day!!! ).
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/19/2009 9:59 PM (GMT -6)   

Not enjoying the IBS/UP combo right now!

Actually it was all home cooked stuff at a friend's who is a fantastic cook, just a little richer than I have been eating.

I think for me this bout has really hit home for me that it is a chronic disease that I have and I DO have to take a bit more care in handling it.

Not sure why he is so shy on handing out the antispasmodics. I asked last time and he basically said I didn't need them.

The day was ok...many unproductive trips to the washroom!

Looks like a nice weekend weather-wise. Just me and the boys this weekend as my wife is off for a weekend getaway with her friends. Not sure what is up but don't think the schedule is too busy so hopefully get outside to do something fun. Feeling like I need a distraction.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 2/20/2009 4:33 AM (GMT -6)   
Hi..even better to have home-made...but sometimes we overindulge. Add that and maybe dessert, drinks, coffee, no rectal meds..lol!

It takes a while for it all to sink in...especialy once we've had a bit of a break in symptoms. I tried to get off my meds the first 2 years....lots of other stuff going on health-wise and emotionally, so the GI was supportive with his time and suggestions. Ultimately, we decided I'll be on meds permanently, but I had options with adjustments, so the freedom was given to me, which was a good learning experience for the future. I look back and clearly the first few years were my worst.

Oh....forgot to add that it's humbling to realise it's a forever thing. So, setting up plans for treatment and maintenance is a good thing. It's a pain and an expense, but it can work if you don't see it as an all or nothing.

I think you should just ask to try the antispasmodics. They can sometimes have one feeling a tad on the mellow side, so maybe he's cautious..not a bad thing. A low dosage, even if taken at night, can help and you won't have the effects. Everyone can react differently, some cannot take them at all...

Hope you (+ kids) and your wife enjoy your respective weekends....so far the weather prediction is awesome.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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