My trip to Albany specialist -

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/21/2009 7:38 PM (GMT -6)   
:-)  Well, I made it to Albany and back.  Dr. MacDermott made quite an impression on me.  He has about 30 years experience with Crohns and UC.  He had my records (except last blood tests) from my gastro here.  I first saw his "fellow" assistant doctor.  She ask me many questions and my history, etc.  I explained about my not tolerating 5ASAs, 75mg. 6 MP and what I had tried for over a year.  He saw the results of the three scopes I had had in the last 14 months.  He agreed on mild to moderate UC - mostly proctitis - leftside 30 cm. (which he stated was "not far".  We also discussed my IBS, GERD and hiatal hernia. 
SOOO!  You will love this "quincy"!  His recommendation was STOP the 6 MP because my blood work showed that I cannot tolerate a strong enough dose to help.  He also stated that since my white count, etc. stayed normal  with no anemia to NOT worry about the blood unless it got a lot worse!!
Best part - he is having me PUSH the rectal meds - treat the UC topically - only thing he recommended.  Cortifoam followed by Anusol suppository to cover more area - THREE times a day to start - when better go to twice, etc.  Also, tapering the oral prednisone 2.5 mg every week until gone.  I am now on 7.5mg. for this week.  I have to get my Coritfoam tomorrow so have not started that yet. 
He told me because of my age (I am 69) Humira, Remicade, etc. was not a good option and too much risk of infection and other side effects. 
Because of my IBS he gave me sheets of instructions of what to eat or not - depending on what affects me.  Most of this I knew from years of IBS.  As we all pretty much know - what you eat does not cause UC or cause a flare but can affect how fast we heal, etc.  He wants to see me in 3 months.  I may go back to Albany.  BUT - if this works, I will stay with my doc here. 
Please wish me luck.  I took Imodium some while traveling and everything went ok.  I reserved a "roomette" on Amtrak and would highly recommend it as you have your own toilet and sink in the roomette - even if you don't plan on a long trip to sleep.  Our trip was 3 hours but nice to have the toilet right there.
Any questions?  Think I got everything.  Wish I had more time to ask him more about causes - treatments in the future, etc.  He certainly would be the one to ask.
ElaineNY

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/21/2009 7:57 PM (GMT -6)   
Good luck with everything Elaine! I hope this works well for you! :)
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4234
   Posted 6/21/2009 9:55 PM (GMT -6)   
Glad your appt. went well. It must be nice to leave with a plan of action. I feel like most of my doctor's visits don't result in any kind of plan besides "continue what you're doing." Best of luck to you.
25 years old; diagnosed March 2007;
Currently: persistent rectal inflammation
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted Yesterday 1:24 AM (GMT -6)   
Hi Elaine....sounds like an awesome plan..:-D

Did you happen to ask him about the use of imodium?

What about fibre?

Hope you're able to continue with the plan and see improvement soon.

Yes..the plan seems better than the pred to me..lol!

Thanks for the update,
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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted Yesterday 1:55 AM (GMT -6)   
     This was very interesting Elaine and happy to hear you got some intelligent info!  Too bad my GI is STILL pushing Remicade and I am almost 63 yrs old too.  Of course I never intend to take it.  But a few weeks ago when I was undergoing my sigmoidoscope and he noticed the moderate inflammation, he just had to throw the suggestion of remicade out there again.
     I am still flaring, no blood but terrible pressure and some burning sensations in the rectum.  My problem is very similar to yours.  I am presently on 25 mgm of prednisone, but my condition is not improved nor has it worsened.  I am taking 75 mgm of the 6MP but wondering if it is doing anything.  He never mentioned having my blood tested to see if it is helping.  Frankly, I think it isn't.  I haven't noticed any adverse affects from it.  As you may have read in my past notes, I did lower the dose myself over the course of the year because I do not like a white count of 2.4.  Well, my last white count showed it to be 4.0 and of course the doctor didn't know I lowered the 6MP to 50, so he thought my body was attacking itself.
     Is the Anusol suppository similar to Canasa?  I take them every morning.  I also take the Cort enemas nightly.  I am following a low residue diet diligently.  For lunch I am drinking Ensure.  What is your diet like?  So happy you were able to meet with this doctor!
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****.


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted Yesterday 8:21 AM (GMT -6)   
It's good to hear about a doctor who seems to know what he's doing, and your discussion with him seemed thorough. Hope it all works well for you. (And thanks for the tip on the Amtrak roomette. I'm going to look that up).
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Asacol enema occasionally
Spinach & sunflower seed diet / Juicing spinach and carrots


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted Yesterday 9:10 AM (GMT -6)   
Sara - unfortunately I have had lots of "plans" but none worked because of my intolerance to so many medications.  This doctor was very adamant about the topical approach and said I definitely was not a candidate for anything "stronger" such as Remicade or Humira, etc.
Quincy - this doctor and his "fellow" who interviewed me know that I take Imodium and did not say much.  The fellow (she) and I discussed the fact that it only controls things temporarily and does not heal or get one into remission.  I use it with much caution because of that.  I took it in small doses for four days and had no problems!  It definitely slowed my system down and I would not want to take more than I did.
As for fibre - I did not ask and he did not say anything.  He gave me the sheet about what I should eat and not.  If you did not see it before, I will find it and post it.  It is for IBS/IBD patients he said.  He did like it that I take probiotics. 
Christine - This Dr. MacDermott seemed to be most concerned about my age and treatments available.  He is also about our age.  I got the feeling he felt my UC was not bad enough to even consider the risk.  I just hope I can do the rectal meds ok and three times a day.  I have to wait because my pharmacy has to order the Cortifoam.  I have the suppositories so I started on them.  Anusol is low dose steroid - used for hemmroids generally.  His statement was that the Cortifoam reached further and then putting the suppository in after covered the last end of ones rectal area.  He chose the foam instead of enema as I cannot administer the enemas but can do the foam.
He said not to worry about how much stayed in - anything is better than nothing!
As for the 6MP I think the Prometheus test showed that I would have to have more than 75MG because I took that a week before the test and test showed it was NOT a therapuetic dose.  The test is very expensive and glad my insurance covers it.  My blood count is always normal.
My diet is about 1/2 low fiber I guess.  I do not eat anything raw except maybe little lettuce or tomato on a sandwich.  I eat too much sugar and trying to cut back.  I want to lose weight so much - maybe after prednisone - now on 7.5.
ElaineNY
 

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted Yesterday 7:49 PM (GMT -6)   
"bump" one time for some who may not see this!

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

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