Just returned from my GI doctor appointment...followup...

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/16/2009 3:24 PM (GMT -6)   
So far so good!  He liked my progress and then said "we have to get you off that prednisone".  I told him I liked it and he said "don't get used to it" - I told him I was joking and that I wanted off when possible.
So, I am now taking 20 mg. tapering from 40.  He said two more weeks on 20mg. and then down to 15mg for two weeks and call.  I take 50mg. of 6MP and he will increase that to 75 mg. after I am on prednisone 15mg for two weeks to see how I do.  He defined remission (when I could get off prednisone AND 6MP) as free from symptoms and back to my "regular" BM schedule and NO blood - he stated that I might always have some mucous off and on.  I still have blood streaked mucous but no real bleeding and rectal discomfort.
q- you would be proud of me when I ask about suppositories and he said "good idea" and prescribed Anusol 25MG for every night.  He said that woudl hopefully hurry the healing along!
Knee surgery is on hold.  He said unless I HAD to have some kind of surgery - especially joint surgery it would "probably" be ok but there is more risk of infection, etc.  So, tapering prednisone, raising 6MP until in remission and then he could take me off the 6MP for surgery and raise prednisone if needed.  Got all that!  LOL 
I am happy to say my symptoms are decreasing and as he said "you will know when you are in remission by the way you feel and how your system is working". 
I see the NP in June and call anytime in the meantime with questions, etc.
I was happy that I had only gained 2 lbs. on prednisone.  I ask if my moonface would go away and he said  yes!!  (when off the steroids)
He is a good doctor from India many years ago and he even liked my shirt LOL - I collect frogs and wore my lucky shirt with frog in rhinestones on front.
Any questions?
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/16/2009 3:29 PM (GMT -6)   
Why does he think that you have to be off of 6MP in order to be in remission? IMO, as long as you're on only on maintenance meds (which 6MP is) and NOT on steroids, I think you are in remission if you're "normal" in terms of bowel activity.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/16/2009 4:40 PM (GMT -6)   

That was my question?  6mp is a maintenance drug meant to be taken long term to keep remission.  Is he trying to get you off the 6mp so that you can have your knee surgery?

Great news though!  Glad to see you are truly heading towards remission! :)


Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/16/2009 5:12 PM (GMT -6)   

Yes, just wasn't clear enough.  I have been needing knee replacement for about 5 years.  It would off the 6MP while having knee replacement and rehab because of the risk of infection.  There is a pretty good risk anyway for joint surgery and I am 68 years old.  He mentioned other maintenance medication like suppositories or steroid enemas, etc.  I can't tolerate any 5ASAs which would be the ideal choice.

Anyway, prednisone is not a problem with the knee replacement.  Surgeons just up the doseage for surgery and taper after. Then I guess I would go back on 6MP again later - don't know for sure! 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/16/2009 5:21 PM (GMT -6)   

Forgot to add that my blood tests were fine.  Everything normal - just sugar and blood pressure little high but not bad.  Doctor ordered regular monthly blood tests and a c-diff test for April. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16046
   Posted 3/16/2009 7:42 PM (GMT -6)   
That is great! Sounds like you're on your way to recovery. I hope you can get off everything soon so you can get your knee surgery smilewinkgrin
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 3/16/2009 8:00 PM (GMT -6)   
Nice to know you are feeling much better.
I am getting less and less tolerant with Salofalk (5ASA) enema but I can use Salofalk suppositories fine. So now my maintenance medication is Entocort (steroid) enema twice a week and Salofalk suppositories 5 days a week.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema, Salofalk tablets 1000mg x 2/day, Entocort enema (tapering).
Supplements: Calcium with Vitamin D, Vitamin B Complex, Vitamin C, psyllium capsule (Metamucil) and bee propolis.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/17/2009 8:07 AM (GMT -6)   

"bump" because I have not heard from some of you "regular" friends, etc.

Thanks!  ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 3/17/2009 10:28 AM (GMT -6)   
Hi Elaine...good to hear your appointment went well and that the doc is responsive to your suggestions...plus has a plan for your future with treatment for UC and regarding knee replacement.

Nice he commented on your shirt....more "right brained" (recent knowledge from Daniel Pink on PBS) and empathetic...good!

Keep us posted as to how you're doing,
quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5958
   Posted 3/17/2009 12:31 PM (GMT -6)   
     Glad to hear the good news Elaine!  I was going to ask about your blood work but see you mentioned it further into the post.  Did he say what your white count was?  I see my GI doctor tomorrow morning.  I have been in remission since Nov 1st.  Today I had some cramping but two normal bowel movements...no mucus.  When I see mucus, I know the flare is a-comin.  I KNOW what caused the cramps...St. Patty's Day corned beef and cabbage I made last night...mmmmm, good!  But the colon doesn't think so.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/17/2009 3:22 PM (GMT -6)   

Thanks q and Christine....

Doctor mentioned my blood count but he said it was good and I don't know what "good" numbers are anyway.  Seems like he said something with a 5 - as long as he said it was good that was all I wanted to hear.

My doc told me not to worry about mucous but number of BM's, pain, etc.  mucous and blood will go with the other symptoms (he said).  I have never been without mucous - but have been without blood and diarrhea.  I got my Anusol suppositories today - trying tonight.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
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 3/17/2009 5:53 PM (GMT -6)   

Looks like my white blood count was over 5,000 - I assume that is ok!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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