Quincy?? (mostly just venting)

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/29/2009 11:21 AM (GMT -6)   
I don't know  - maybe not really a question as a need for support or ?  As you know I was taken off all mesalamines, 6MP and now prednisone.  I liked prednisone but doctors didn't want me on it anymore.  So - after being off everything but rectal meds - Cortifoam twice a day and Anusol suppositories 3 times a day for several weeks (prednisone this is seond week off) bleeding has returned with clotting and mucous. No diarrhea - two to three formed BMs.
  I don't mind the arthritis getting worse - can tolerate that but the rectal/pelvic pain, gas and slight nausea is worse.  I feel more tired and have to take Imodium and more Tylenol than I should just to function - go to store, etc.
I am calling doctor/NP is all is same or worse tomorrow.  I think one of the rectal meds is making me so sore - spasms, etc.  DARN!
Ok, vent is over!
ElaineNY
 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/29/2009 5:43 PM (GMT -6)   

bumping this up for Quincy should she be around.  Still feeling sorry for myself this evening.  Sleepy all day.  I refused to use any rectal meds today - see what happens tomorrow!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/29/2009 8:16 PM (GMT -6)   
     Not quincy here Elaine....but giving you a big hug anyway!  I know exactly how you are feeling.  My problem is the proctitis too.  Unfortunately, the doctor said that is the hardest, most stubborn part to treat.  You wouldn't think that though, would you?  With the rectal meds, I would think it would be easy.
     I am down to 25 mgm of prednisone and I cut the 6MP down to 75 today because I feel so exhausted I can barely function and I have a very metallic taste in my mouth.  I go for an ultra sound of the liver, pancreas and gall bladder tomorrow.
     Doesn't the prednisone give you insomnia?  I have depended on the Ambien just to get about five hours of sleep a night.  I look like a walking zombie.
     Are you contacting your regular GI doctor?  Let us know how you make out.  Take care.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/29/2009 8:37 PM (GMT -6)   

Nice to hear from you Christine!

Yes, prednisone did give me a little insomnia - not bad and I take Xanax regularly and always take it about hour before bed so it helps me relax and sleep.  I haven't slept good for years anyway - mostly due to bladder problems.

I also had that metallic taste from 6 MP.  I am glad not to be taking it anymore but would have if it had worked.

I will be contacting my NP who always consults with my regular gastro doctor who consults with the specialist in Albany.  I have appointment with him in October but need to know what to do now. 

WE are too old for this (and you are younger than I am LOL)  Good luck to you and love to see you in remission again soon!!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 7/29/2009 10:26 PM (GMT -6)   
Hi Elaine....certainly sucks that you're still in the same place after being on and now off pred and trying the rectal meds to no avail.

I'm still wondering why you cannot use any fibre supplements...did the specialist who is on the video say anything about that?

What did he say about the imodium use?

I have a friend who has chronic pain/peripheral neuropathy/host of other stuff and she's on a 5mg dosage of pred daily. Could that be a possibility for you????

Have you made any changes regarding the IBS part as per the above said doc?

I feel for you Elaine...I can't offer any suggestions regarding the rectal meds except to say that for someone who couldn't use them initially regarding insertion, you certainly have given them ALL a try.

I think maybe the perservative in the enemas or the suppositories could be a possible allergy? Are you allergic to Sulfa?

Hope the docs can consort on this issue sooner than later.

I'm definitely curious as to how tomorrow goes when you've not used any rectal meds today....

I can relate to the crappy day feeling, however...even though it was a successful day for me. Kind of like being im the twilight zone.

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/30/2009 8:43 AM (GMT -6)   

Thanks, Quincy!  Actually, today I feel rotten today but I believe less pain in my rectal area.  I will do the suppositories and foam again today.  Have to wait until maybe another BM.  Lots of bloody mucous this morning but not a lot of cramping. (only 2 BM)  Also, the usual nausea, etc. etc.  I just feel same as for over a year ago when I first went for the scope. 

Dr. MacDermott from Albany said I could use the Imodium when necessary for travel, etc.  I forgot to ask about fiber - I know my experience with fiber in past for IBS was terrible. Why would I need fiber?  I do not have diarrhea - always formed - just covered with mucous and blood! I will ask.  I have appointment with him in October.  He has been on the phone with my gastro doctor here - they seems to be well acquainted.

Yes, my arthritis pain is terrible - back to where it was - which I expected without the prednisone.  That I can deal with - take several Tylenol a day for years and lots of rest.

I have a call in to my NP/Doctor. 

ElaineNY

 


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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