Getting worse before getting better - new medication?

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/23/2009 9:28 AM (GMT -6)   
Any experience here with symptoms getting worse before getting better - especially with rectal meds?  I have been using the hydrocortisone enemas now 7 days - more blood and mucous and feeling of not emptying my rectum.  I am using about 2/3 doses so maybe just need more time.  Just looking for experience here!
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/23/2009 2:58 PM (GMT -6)   
Hi..I don't have any experience with the hydrocortisone enemas, and even though I do get good results with the 5ASA enemas...it still takes a few days to a week before I feel good.

Remember my flares are very mild.

I did flare at Christmas...even a tad of bleeding which horrified me.
The enemas helped within a few days..no bleeding, and I started tapering after 2 weeks. I got down to every third night starting Jan 13 (fast taper), but as of Wednesday, I had urgency and increase of bms. Even a bit of discomfort with a few bms and last night EXTREME nausea.

Last night, the decision to go back to nightly enemas was made. Today, still urgency and lower gut discomfort and nausea.

I might add that I've had extreme lower back pain and discomfort for the past 2 weeks, over and above my norm. The distress of it has been a constant. I also have other health issues that have concerned me...and I'm rather ticked allowing it all to flow today into a pity party.

I have some comfort from knowing what I can do about the flare, and I know that it'll take about a week to start to feel more normal/control.

It'll give me the breather to start to deal with the other stuff.

My point...hmmm...it seems to be a trade-off....and your issues health-wise or personal-wise will possibly indirectly affect your flares on a continual basis if they're not controlled as of yet..

If you're compromised in what meds you can take and how you take them, it possibly might affect your healing.

Can you take the enemas nightly and do a suppository in the day?

If you can't do the enemas in the way to get the full amount of fluid, maybe using cortifoam would be a next best choice? It has more med % than the proctofoam.

Sorry to bring my crappola into this. I'm hoping you're able to turn the corner and start to feel better soon.

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 !!!
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/23/2009 3:38 PM (GMT -6)   
You can up to 2x a day, once in the morning and once at night, but it usually does take about 1-2 weeks to see an improvement.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/23/2009 5:16 PM (GMT -6)   

Heather - dont' worry about your crappola!  In some comforting way good to know we all have it once in a while.  Sorry you have it now, however.  My thought today was about using a suppository in the morning and enema at night.  I keep them in fine but the NP told me there are no steroid suppositories for me like the enemas.  I have used Canasa (although I can't tolerate them) and they were easy to use and stay in. 

I absolutely know that stress and anxiety causes problems with UC - especially for me.  I was diagnosed soon after my husband was diagnosed with lung cancer.  He is doing quite well - in remission now but still has stage 4.  I have upped my Xanax to as high as I am allowed by my doctor hoping that will help to get ME into remission. I believe after reading here that my flares/bleeding/mucous are mild compared to many others here.  Doctor (after my scope) said mild to moderate confined to rectum.

Thanks for your reply - helps me stay calm and continue to fight towards feeling better, etc.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 1/24/2009 9:57 AM (GMT -6)   
Elaine, I am also new on the hydrocortisone enemas and also struggling. After 15 days now of one every night I have gut aches, insomnia, and a messy combination of increased diarrhea and bloating etc. I hope it is also a case of getting worse before better, but I have decided to start tapering now instead of after 3 weeks as prescribed. I had similar experiences with mesalamine rectal meds a year ago too. Bllaahh!!

23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.
  • Psyllium powder
  • Culturelle probiotic
  • Pentasa
  • Cortenema


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/24/2009 10:20 AM (GMT -6)   

Mitzo - Yes, same thing happened with me with Rowasa.  Darn - wish we could find something that works in a few days as some do.  I plan on calling NP next week to get advice.  She had mentioned Flayl antibiotic but I have tried that in past and only went 3 days before bleeding got much worse.  BMs today and yesterday about back to square one.  Only thing I have found much worse is mucous and cramping.  May be sensitive to steroids also - or could it be the preservatives/additives.  Sometimes I wonder.  I used the Procotofoam with no increase in symptoms and maybe slight improvement in bleeding/mucous - but used it for weeks and no real improvement.  Wondering about alternating or tapering as you said. 

You are lucky not to have blood/mucous but then I hate D also and of course that is not right.  Maybe increasing your probiotics would help or fiber supplements - increase!

Let me know how you do!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 

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