We leave Sunday

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Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/27/2007 8:38 AM (GMT -7)   
Hi Everyone..............we leave Sunday FINALLY for the Mayo Clinic.
 
Oddly enough these past 2 weeks he has had far more better days than bad.  (Kind of like bringing your car to the mechanic - stops making the noise or problem you made the appt for....lol).  It really does appear to be the start of a remission with everything that is going on for him.  Major improvement is 4-6 BMs a day which usually is 2 or 3 with well formed stool and the others are usually just gas related.  My major concern is being able to get off the pain meds.  I don't like the reliance on them but it is a touchy subject....that is what has allowed him to function and go out and play golf and do some "normal things" with frequency and not having to stay indoors due to pain or urgency.
 
The data base spreadsheet I have done up in prep for this was a good idea.  It really does show the pattern (and major improvement overall) regarding the BM's.  When you start to feel better and have a functional life you don't realize until you see it detailed on paper where you currently are and where you were only 4 months ago.  He is maintaining a safe diet that seems to agree with him and not "rock the boat".  He will have a little something here and there to test the waters and hasn't had any bad reactions that we can see.
 
I was kind of afraid that by the time we got this appt and would go there that possibly the combination of Asacol with the Imuran might take hold and make a difference which it seems to be doing.  It was 4 1/2 months ago the Imuran was started and I know it is 3-6 months usually for it to help if it is going to help.  If we didn't have this appt I think we would both be kind of satisfied where we are at the moment.
 
Regardless of the additional hotel expense and maybe some uncovered insurance expenses I'm sure it is still important to go and have them as part of the healthcare for hubby.  Our local place is very good but it's a small practice in comparison and they urged us to get care there as well to make sure he is on the proper road to remission.
 
I am sooooooooooooooo overly prepared and have a number of things to inquire about based on info I have been collecting here at Healing Well.
 
Kind of jazzed about going there and getting their opinion on some of these things and insight for potential down the road stuff to consider as well.
 
I hope we are only there for the week or less and home by the weekend.  We leave for Aruba the following week and would like to be back here to get the Aruba stuff ready even though I started already packing for there. (Our Aruba trip last year was not good as he was flaring and in the midst of alot of major discomfort so it is kind of nice that things have turned around for him at this point and w can look forward to this vacation.)
 
I will try to post an update with our results when we get back.  And THANKS SO MUCH for all that you have given me to be able to advocate on his behalf even though sometimes I was a pain in the rear end (ha ha) constantly reporting back and forth to him about this and that as he just could not sit at the computer and still doesn't....I've won that job with Healing Well now!!!
 
Take care all.  You've become my extended family and I appreciate you!!!

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/27/2007 10:35 AM (GMT -7)   
Another UC wife,

Excellent news, it's not often that we get to hear good news with this condition...may I ask what the "safe diet" is?

thx,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Home Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 9/27/2007 10:51 AM (GMT -7)   
You're prepared fully...that's the best thing you can do. At least you'll understand the answers you'll be getting for the wonderful formulated questions you'll be asking. I'm sure the docs will appreciate it (or not..lol..since you'll be making them work a bit harder).

I can't wait to hear the updates.

Have an awesome time in Aruba.

You a pita? Nevah!

quincy xx
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


barbl
Regular Member


Date Joined Jul 2006
Total Posts : 320
   Posted 9/27/2007 10:54 AM (GMT -7)   
Have a great trip!
Visualizing complete remission yeah
Dx'D in 1990. Remission 1991 - 1/2005
Fish Oil, Probiotics, Lialda a nightmare for me, Caprylic acid
watch my sugar and carb intake
Both flares were in extremely stressful times in my life
Colonoscopy 10/2005 80% of Colon diseased, or as I like to say "Intestinely challenged"


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/27/2007 2:30 PM (GMT -7)   
I'm chuckling here....about his safe diet....it is safe for him anyway....considering when he was flaring so badly he ate so little. For him what does not seem to bother him are -- eggs, pasta with some butter, cereal with 1 % milk, he eats the Boston Market turkey dinner with mash potato entree almost every day (the smaller size one with no stuffing or mushy vegetables) shrimp on occasion with pasta in a light scampi type sauce, at night he loves popsicles - he switches from the regular and the artificial sweetened ones and milk duds!!! Chicken soup agrees with him very well. Applesauce. Tea with honey and coffee on a very rare occasion and stoppped all the carbonated drinks.

He will order fish outside - sometimes fried but takes off the batter - 3 or 4 french fries. Also fruit in moderation.

Some of these foods wreak havoc for others but these seem to be ok for him anyway.

Heather,,,,, didn't catch what the Pita reference was....nevah is definitely how we say "never" with our Bostonian accent :-)

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 9/27/2007 4:27 PM (GMT -7)   
Pain In The A (butt) (pita)  nono tongue
H scool
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/27/2007 4:34 PM (GMT -7)   
Oh Heather.....I'm used to just PIA -- that extra lettah threw me...lol

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 9/27/2007 6:53 PM (GMT -7)   

  I wish you so much luck and can't wait to hear how it goes!

Becky


29 years old; diagnosed since 1997 (but I've had it forever)
 
Current meds:
-10mg Prednisone/day
-Asacol 12/day
-Remicade (started in 8/06 but it's not as effective anymore)
-Calcium (for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
-Miralax (because surprisingly I need it sometimes)


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/28/2007 8:06 AM (GMT -7)   
Good Luck, i hope it all goes well.
KEEP THE FAITH
M arty
keep the faith

Pred40mgs/asacol/proctifoam/omoparazole 40mgs/Domperidone10mgs x 3 daily




http://www.myspace.com/martybuzz1<FONT]

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