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peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/16/2008 3:32 AM (GMT -6)   
I hope all of you are doing well.  I just wanted to drop by for a minute and let you all know that I have been thinking of you and miss chatting with all of you.  I haven't had much "spare" time on my hands lately.
 
My husband's diagnosis still remains the same - ALS (Lou Gehrig's Disease), though we are still awaiting one set of labs to come in from a specialized lab in Massachusetts to let us know if IV Gammaglobulin might be a treatment for him.  We should know that answer any day now.  I have noticed more fatigue, and muscle loss over the last several weeks.  But, we remain positive and hopeful.
 
The stress of all of this has finally caught up to me.  I have been battling a partial blockage or kink in my intestine since Wednesday morning.  The oral pain drugs and muscle relaxants haven't worked well at all this time.  Last night, I finally gave in and switched over to a transdermal pain patch and actually have had some relief over the night.  It's quite a bit stronger than the oral and keeps a constant level in my system.  I'm hoping to be off of it by Sunday, if my gut cooperates.
 
Our house building is coming along.  It is being drywalled now.  We are supposed to meet a landscaper there at 10:30 this morning and then go look at countertops today.  We ordered our cabinetry yesterday.  We also need choose which painter we plan on hiring too.  Been really busy with organizing all of the workers since we are acting as the general contractor.  I was hoping that we would be moved in by the end of July if at all possible.
 
I just wanted to drop you all a note and say "HI" and to let you know that I think of you often.  I noticed that we have lots of new members posting now.  Welcome to all of you!
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/16/2008 4:45 AM (GMT -6)   

Peggy-I know I am not alone in saying that I think of you everytime I log on!  You were such a great help to many.

I will keep my fingers crossed that the labs will come back in your husband's favor and he can have the IV treatment.  And of all times, a blockage!  It is easy to say "don't over do it", but remember to take it easy on you whenever possible.

You'll have to post pictures of your new home when completed!

Best wishes


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 5/16/2008 10:25 AM (GMT -6)   

Hi Peggy,

You're so missed here! Thanks for checking in to let us know how things are going. You definitely sound like you've been one busy lady. I'll be hoping and praying that your husband will be a candidate for the gammaglobulin treatment.


Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son (HLA B27 positive) diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 5/16/2008 11:12 AM (GMT -6)   
Hi Peggy!

It's sooo good to hear from you! I'm sorry you've had so much on your plate lately! I do hope and pray that your husband will be able to receive treatment and that it will be successful. Hang in there - you've got loads of people here thinking about you guys and praying for you everyday.

Joann
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 5/16/2008 2:34 PM (GMT -6)   
Peggy,
My thoughts and prays have been with you and your husband. This has really had to be hard on you.You are such strong wonderfull person and have help me so much thew my problems.
This had really been hard on you and I don't know how you do it all.
Ihave been outside this past month and seem to be doing better as time goes on. The output has slow down some and I just hope it keeps it up.
Once again tinking of you and was wondering how you were doing.
Jan,

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/18/2008 6:29 AM (GMT -6)   
Thank you all so much for the kind words and keeping us in your thoughts and prayers. I do try to check/read this forum once in a while but would like to be able to post more regularly. Maybe down the road......
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/18/2008 7:07 PM (GMT -6)   
gosh, i didnt realize i hadn't replied. I will keep you and your husband in my prayers and send good thoughts your way

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 5/19/2008 1:48 PM (GMT -6)   
Hey Peggy!

I've been thinking about you and was wondering about your DH.

I'm glad the house is moving along. Hopefully you'll both be in by the timeline and able to relax a little and enjoy your new home.

Sorry the stress of all this is effecting your gut. I'm glad the patch is helping.

You're both in my thoughts and prayers.

(((HUGS)))
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/19/2008 7:39 PM (GMT -6)   
peggy113 said...
 
The stress of all of this has finally caught up to me.  I have been battling a partial blockage or kink in my intestine since Wednesday morning.  The oral pain drugs and muscle relaxants haven't worked well at all this time.  Last night, I finally gave in and switched over to a transdermal pain patch and actually have had some relief over the night.  It's quite a bit stronger than the oral and keeps a constant level in my system.  I'm hoping to be off of it by Sunday, if my gut cooperates.
 
Hello again ---just a quick update.  The discomfort in my lower left quandrant of my abdomen is still there.  I did a stool sample for culture on Sat a.m. and the results today showed that it is NOT a bacterial infection.  I am pretty certain that it is not a blockage...  I'm not sure exactly what it is tho.  My dr. wants me to do a 7 day round of Flagyl.  I picked up the RX this evening.  Unfortunately, this is the drug that I have to be careful about how I take.  It makes me really nauseous at the regular dose which is 1 pill 3x a day.  So I have to cut the pills in 1/2 and take them 6x a day with food at each dose.  This will be a long 7 days but I am hopeful that it will make the pain go away.    Always good news and bad news.  Good news is that it is not a bacterial bug.... Bad news is that the doc is not sure what it is but is working with me to get rid of the pain.  Don't get me wrong, I can still function and work, but am worn out from the discomfort by mid afternoon.  I sure hope that it isn't the CD coming back.  I think lab work will be next to rule that out.  I just can't be sick right now.  Too much other stuff on my plate.
 
Have a good rest of the week.  It is so good catching up with you all.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 5/19/2008 8:56 PM (GMT -6)   

Peggy - Thanks for the update. Hearing from you is like getting a phone call from an old friend. I'm sorry your tummy is acting up again under all the stress you've been dealing with.  Let's hope and pray the Flagyl (yuck!) works it's nasty tasting magic!  And NO MORE CD! Stay positive. You and your husband are in my thoughts and prayers.  -Laura


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/20/2008 12:54 AM (GMT -6)   
Laura,
 
AHHHHH jeez, how nice of you!!!
 
And everyone else out there dropping in to say hello.  You all are truly like my online family.  I miss not having the time to chat more frequently tho.  As you can see, I am up in the middle of the night again ....  this has got to stop.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 5/20/2008 9:53 AM (GMT -6)   
Peggy:

We're sending all positive thoughts and prayers your way from here in New York.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 

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