Can't keep recal meds in (sorry long)

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gdfairy
Regular Member


Date Joined Jun 2007
Total Posts : 89
   Posted 1/30/2008 1:36 PM (GMT -6)   
I've been battling with this flare for a few weeks now.  This symptom is actually something new for me--usually I'm constipated.  I wake up in the morning and after the first instance of putting anything in my mouth the urgency starts.  I run to the bathroom and then begin the process over the course of 3 hours of totally emptying out my colon.  It's formed but soft.  Along with that comes pressure, urgency, cramps, spasms, involuntary straining-and this keeps up until I'm passing almost water.  But being empty doesn't stop the urgency--I just keep up the involuntary straining until it just eventually stops on it's own.  No blood or mucous though.  I'm pretty good then for the rest of the day.
 
First I tried the cortenemas--can't keep them in no how.
Then PA thinking it was proctitis put me on this lidocane/cortisone cream that you squeeze inside yourself from a tube--don't think it went up far enough.
Then the doctor upped the cortifoam to twice a day. 
Anti-spasmotics are not working.
No matter what I do, nothing is working.  Nothing is staying in long enough to do it's job.  And if I can keep it in--like at nighttime, it doesn't do anything.
We've tried moving my Liada to nighttime.  Then tried twice a day.
Rowasas and Canasas are way to harsh right now.
 
The doctor threatened that if the cortifoam don't help after two weeks, I'm going to have to go on oral steriods.  I'm so frightened of that given I'm menopausal and I already have osteopenia, hairloss, and insomnia to begin with. 
 
Has anyone every had this instance where the rectal meds don't work?  I'm wondering if the rectals don't work why should the oral medicine work?
Has anyone had the oral medicine not work either?

Left sided UC 3 1/2 years
Current Meds: Lialda 4 at night
cortifoam, cortenema, lidocaine/cortisone cream
Multi Vitamin/Mineral
Fish oil
Biotin


quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 1/30/2008 2:01 PM (GMT -6)   
Hi..explain why the 5ASA rectal meds are way too harsh?

Formed but soft means something higher than the colon is getting some meds...which is good, but bad for a severely inflamed rectum/anus.


I still think you should stop the fish oils for a while...see if that helps.

quincy
*Heather*Status: mini flare Dec 28... tapered to every second 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 ....bromelain 1 - 2x 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 !!!


gdfairy
Regular Member


Date Joined Jun 2007
Total Posts : 89
   Posted 1/30/2008 5:21 PM (GMT -6)   
Since I always tended towards constipation, it doesn't surprise me that the stools are formed.  I don't think I've every had diarrhea.  I've just been going way, way too much, until there's nothing left, but still keep straining.  I do think it's higher up than these foams and creams go, but I just can't keep in the enemas.
I don't know why but the ASA rectals always were even more difficult to hold in when I'm inflamed like this.
Yeah, probably don't need the extra oil.
The doc is considering putting me on a temporary dose of Pred. until I can get the inflammation down, and then progress to the rectals, but it seems like once you get on the orals, there's no getting off for a very long time.
Left sided UC 3 1/2 years
Current Meds: Lialda 4 at night
cortifoam, cortenema, lidocaine/cortisone cream
Multi Vitamin/Mineral
Fish oil
Biotin


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/30/2008 7:16 PM (GMT -6)   
How many times daily have you been using the Cortifoam? It is supposed to speed healing in the rectum if one uses it Am & PM for ca. 10 days-- then the Cortenemas should become easier to retain overnight. Since you feel that rectal 5-ASAs contribute to irritation rather than helping you, do you think the Lialda is working? Or could you have a 5-ASA allergy/intolerance all together? I think that's an issue to discuss with your gastro. Quincy makes a good point about the fish oil; it could be irritating your rectum. Try a soothing bland diet for a few days to see if that helps + drink lots of plain water. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/30/2008 8:39 PM (GMT -6)   
I agree that the fish oil may be part of the problem. It made me worse.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


gdfairy
Regular Member


Date Joined Jun 2007
Total Posts : 89
   Posted 1/30/2008 9:58 PM (GMT -6)   
Yeah, will skip the fish oil for now and will eat plainly.  Actually the lialda put me in remission for the first time in almost 4 years when dipentum and colazal didn't work well enough, but the lialda suddenly stopped working now or so it seems.  The doc's got me on the foam twice a day now, but only just started that.  I was doing those cortisone/lidocane rectal cream applicators for a week.  Doesn't seem to be enough. Today was especially bad.  Usually, I'm done in a few hours.  Today I had to leave work and go home, couldn't stop straining and going a little here and a little there (that's all I had left).  Went home, went to bed and slept.  Things calmed down finally.  I still don't think the foam is going up far enough and when I apply it in the morning, it just comes right out when I poop.  I think the cramping comes from higher up, but I tried an enema this afternoon and couldn't hold it more than 15 minutes even though I've gotten quite adept at getting the air out--why do they put so much air in the bottle, for goodness sake?

Left sided UC 3 1/2 years
Current Meds: Lialda 4 at night
cortifoam, cortenema, lidocaine/cortisone cream
Multi Vitamin/Mineral
Fish oil
Biotin


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/30/2008 11:18 PM (GMT -6)   
Don't use it in the mornings when your disease activity is high, use it at night before bed, that way laying down to sleep right after administering it will help it go a little higher and keep it in longer...you don't have to necessarily cut the fish oils out, you're likely just having a severe enough proctitis flare that may very likely not having anything negative to do with taking fish oils.

And be sure to push the cortifoam surynge in as far as it will go before you push the foam through.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 1/31/2008 2:07 AM (GMT -6)   
Fish oil doesn't agree with everyone..they don't agree with me it seems as well but it could have been the product itself. It won't do any harm to cut them out completely for at least a week. The reason I say this is that for some, they increase circulation. An anus.rectum with severe inflammation could have just a bit too much circulation.

I think the inflammation is lower than you believe....maybe just squirt in a bit right at the anus and then push the applicator in a bit and put the rest...or...just use half the amount, but don't push the applicator all the way in to keep it at the lower point. It'll still go higher if you're doing it while laying down.

Have you tried doing any sitz baths? Maybe just to relax the butt a bit? Not hot water, however...just warm. Not after you use the meds either..lol!

I would consider to take 10 days - 2 week tapering course of pred if the ctal meds weren't working. I'd have to think long and hard if it were to be longer, but it would have to be fast taper.

Have you had stool samples and swabs done to make sure nothing else is going on?

What were you taking for antispasmodic...? and are you still taking it?

I sure hope you get relief soon....that's definitely the worst symptom for me...like wretching from my butt...horrible.

quincy
*Heather*Status: mini flare Dec 28... tapered to every second 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 ....bromelain 1 - 2x 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 !!!


gdfairy
Regular Member


Date Joined Jun 2007
Total Posts : 89
   Posted 1/31/2008 10:45 AM (GMT -6)   

I've been using the fish oil for years thinking they helped stave off inflammation, but if they increase circulation, I certainly don't need that right now (I need things to calm down) so I'll take a break with them and see what happens.  They are not helping me right now anyway. I was taking generic nulev for an anti-spasmotic but does absolutely nothing other than make me tired.  I do have to do a morning dose of the foam (according to script)--if I can just get the right timing.  I wish I can apply it after I've stopped going so it doesn't just come out, but I just never know when I'm going to be finished. 

Of course, if this doesn't help I guess I'll have to go on the temporary predisone.  I just hope it really is temporary.  I'm really scared about that.  Would the inflammation be low, if I feel the initial cramping so high?  I just wish I can use the darn enemas.  They always did the trick.


Left sided UC 3 1/2 years
Current Meds: Lialda 4 at night
cortifoam, cortenema, lidocaine/cortisone cream
Multi Vitamin/Mineral
Fish oil
Biotin


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/31/2008 12:43 PM (GMT -6)   
There has been a discussion of fish oil risk in PLEASE'S post re Omega-3s. Since the Lialda does seem to help you, & you feel cramping "higher up", you may have inflammation in the descending colon-- which would not be helped by Rowasa or Canasa. This I know from personal experience! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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