Any questions for my specialist??

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/10/2009 1:06 PM (GMT -6)   
I will see Dr. Richard MacDermott at Albany Medical Center for consulation on my UC and IBS next week.  I have some questions, of course, about my treatment, etc. and all my records have been sent to him by my gastro doc here. 
Dr. MacDermott is world renown for reseach of IBD and Crohns, etc. and has written or contributed to about 130 articles over the years. 
Do you here have any specific questions I could add or ask him if I have time.  I don't know how long the consultation will be - but I hear he is thorough with his studying my case and asking questions, etc.
I am making a list!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/10/2009 8:16 PM (GMT -6)   
Yeah here is a question most doctors ignore or just have no clue.
Why did Colozal and possibly Asacol cause me to bleed worse when I was taking it?

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/10/2009 8:21 PM (GMT -6)   
Good question - I can't tolerate either of them and they made me worse - good to know why!
ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 6/11/2009 1:02 AM (GMT -6)   
Hi Elaine....maybe you can ask him about fibre supplements for you so that you don't have to use imodium so often...
Because I don't get why your other doctor kept you off them....
They do help in regulating the peristalsis and lessening the spasming.
Are you also on Bentyl?

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 6/11/2009 7:53 AM (GMT -6)   

That is on my list - fiber supplements.  I know I told him I had tried them for IBS a couple times and only had "trouble" with so much gas - even tried different ones.  I have been on low fiber/low residue for over a year.  I don't know what Bentyl is.  I plan on listening carefully and my doctor is sending me there so he will listen also.  My gastro doctor here prescribes Imodium a lot for helping but we talked about it masking the disease and I know it can do that especially if used often and lot.  I only use it when I have to in 1/2 doses.  Like this morning I will have a couple BM's and then take 1/2 so I can go to my doctor appointment.  It is 40 min. drive with NO bathrooms along the way.  Yesterday I had four BM's but regular formed and I did not see any blood - no pain - felt good.  THEN, this morning my usual waking up with sweating, nausea, chills somewhere about 4 a.m. Doing fine not - only lasts about 4 hours but more annoying than anything.  Tired of it!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 6/11/2009 10:41 AM (GMT -6)   
Yep, hear you on the tired of it part.

The fibre supplements that I've found very helpful are the Metamucil capsules. I started with one at breakfast and supper for a week, then graduated to two then three.

If I was eating 3 meals a day, I would take them 3x, but I don't.

Anyhow...you might be able to up your Align?

I hear you on the imodium and how you take it works for you. It's not a bad thing, but it might encourage more of a reaction afterward....that's why I'm suggesting the fibre supplements.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 6/11/2009 5:13 PM (GMT -6)   

I guess I am not sure why I should up the Align or take fiber  I do not have diarrhea.  I just take the Imodium when going out as a precaution.  I might not need it but I feel "safe" with a small doseage.  Two days with no mucous or visible blood - maybe, just maybe going in right direction. Just MAYBE the 6 MP has kicked in at this doseage - now that would be GREAT!

Anyway, Dr. MacDermott is a world renown gastro doc who has written many papers and done about 30 years research on Crohns and UC.  I plan on following his recommendations to the letter - anxious to find out what he recommends, etc.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
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 6/11/2009 7:30 PM (GMT -6)   

I am very happy for you and hope your good fortune continues.  I have nothing against herbalst along with traditional medicine.  I would wonder what cayene pepper would do for my gut - yikes!  Even the rub which helps some with arthritis did nothing for me. I have every confidence in a doctor who has been researching and practicing traditional medicine for over 30 years!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/11/2009 9:32 PM (GMT -6)   
I'd love his opinion about UC and tailbone pain...btw did you see the info I added to the tailbone pain thread about colonoscopies?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/12/2009 8:40 AM (GMT -6)   

I have listed your question about tailbone pain.  I have it too sometimes and also hurt it when young.  My NP says it is UC related - she has other patients with the problem.  I will ask also about after the scope!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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