TO: ANOTHER UC WIFE

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chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 8/15/2007 1:27 PM (GMT -7)   
  Just wanted to tell you that I just got back yesterday from an appt at the Mayo clinic in MN!  It was the best thing I have ever decided to do!  It was so wonderful.  She really cleared up the water that was so muddy all the time.  Highly recommend.  Feel free to email me with questions.
 
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)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/15/2007 9:03 PM (GMT -7)   
Hey Becky -- thank you.  I got a call today on our answerer from the Mayo Clinic and need to call them tomorrow which is probably going to be for setting up the consultation with their gastro dept.
 
Did you only have the one appt?  Will there be follow up appts/tests etc?

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis 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 starting to feel somewhat normal 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.


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 8/16/2007 1:16 PM (GMT -7)   
I just had the one visit so far.  I am doing all of the tests they wanted here in IL because my insurance has a better chance of covering the tests if they are done here.  No big deal though.  The doctor that I saw really didn't need to have me do many tests.  She had a lot of the answers from my records already.  It was really a matter of someone looking at my things and just putting the pieces in the right order so to speak.  I have been through so many meds and am still sick and was so frustrated!  My email is shortcake_18er@yahoo.com if you want to email me so I don't write things all on this thread!  I wish you so much luck!
 
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)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/16/2007 8:31 PM (GMT -7)   
Thanks Becky - will send you a note. I appreciate the offer of advice and help.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis 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 starting to feel somewhat normal 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.


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 8/17/2007 5:10 PM (GMT -7)   
Hi Another UCWife,
I just read on another thread that you said your husband has not been well this last week and I am so sorry. Have his symptoms returned full force or ? I feel so badly as I know how well he had been doing these last couple of months, going out to dinner, working in the yard, going to the baseball game, etc. I hope he/you felt comforted surrounded by loved ones for your anniversary party and I will keep you both in my thoughts for good news and better days ahead.
Take care,

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/17/2007 5:35 PM (GMT -7)   
Thanks Stacey -- he was doing fairly well with more functional days than not. He had to see the urologist for a yearly prostate exam and wham the rectal exam that day and for a few subsequent days really looked like it was setting him back. Needed bed rest, some additional pain meds and would not take the colocourt for 3 nights.

Last Sunday the day of our pool party for our anniversary did go well - aside from his fatigue which he has every day - he had a good day and we had a great time with so many friends. Our friends have been so understanding and supportive that it has helped to keep this situation from being embarrassing.

They know and understand if we have to bow out of things last minute, he doesn't feel like talking on the phone etc. At first we were not so open about it - but it got easier to just let people know what was going on.

He was wiped out the next day and basically rested which was fine. This past week we have been able to get out and do a few things - rested all day today - hopefully tomorrow we can see a movie with some friends we tentatively made plans for.

So we take it day by day....the day I posted I think was one of my meltdown days. I try to grin and bear it and be upbeat for him but maybe its a hormonal thing sometime getting in the way of my optimism. lol

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis 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 starting to feel somewhat normal 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.


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 8/17/2007 8:10 PM (GMT -7)   
Hugs to you......
It is very difficult being the caretaker, I know. I think I previously mentioned that my youngest son was dx w/leukemia at age 8 (he's in high school now and doing fine) but went through chemo and very difficult procedures for almost 4 years. As his primary caregiver (hubby had to keep working of course!) there were many days I could have easily had a melt down, but had to keep a brave face and stay strong to care for him. Be sure and remember to take time for yourself too. I think I gave my "everything" to his care and the stress and lack of caring for my own health has led me to this path of diabetes and UC. Who knows.
Anyway, I know I've told you this before, that I so admire how you care for your husband and how wonderful it is that he has you in his corner! I'm keeping you both in my thoughts..........and yes, the only way to take it is DAY BY DAY.........

Take care,
Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 8/18/2007 5:13 AM (GMT -7)   
Hugs back at ya..............I can only imagine what you went through for those 4 years and trying to be strong and brave for him. So happy to hear he is doing fine now.

Oh I do take time for me. We live in a very active over 55 community. There are alot of activities during the day time I can run out to for a few hours here and there. I'm a bigtime linedancer and do that 4-5 times a week, go to Curves and of course I do most of the shopping so I am in and out alot during the day. I am in most nights unless we are able to go out together to do something.

My best friend of 41 years & her husband just moved here a few weeks ago which has been a tremendous lift for my husband as we are super close with them. Their daughter (my Godchild) and family also lives about 40 minutes away so that makes it even better. My sister lives here and about 4 couples from back North plus a ton of new found friends....we have been here 5 years now and settled in really well.

It's a good thing we don't have the big house, large lot of land and winter and snow to deal with as it would be too difficult for him. Everything is at our fingertips here and not far insofar as all our medical care (except the Mayo Clinic) and tons of social amenities so we are in a good place having this to deal with. That in of itself helps to keep him grounded and counts his blessings daily.

I try to keep it balanced so I am home when he needs me to be for lunch, etc. But he is always saying to go out and do things too which is great. I make sure I keep all the appts straight, medical stuff up to date and take him to all the different appts.

One day he was kind of down recently with the discomfort and put on My Cousin Vinnie that he has seen a ton of times..............just what he needed to get out of the funk. I came home and he was in such a good mood.................as I've said you need the humor and laughter. Get it any way you can!!!

Thanks again Stacey for your concern.....

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis 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 starting to feel somewhat normal 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.

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