I posted this over on the UC board as I was a mod over there for years, I need the mods help

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schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/20/2010 5:37 PM (GMT -6)   
Hello all again.  Well it has almost been a year since I had the total removal of my colon and rectum.  I have finally healed back there, and can start to see life as somewhat normal without a colon again.  My friends here for the MANY years I suffered through this insidious disease helped me to make tough choices, and other medical concerns actually pushed me over the edge and made it impossible to continue on Remicade.
 
I will also post this on the Ostomy board so the mods over there may help me now as well.  The people on the Ostomy board helped me in way so similiar to here - and this odd friendship and love that I feel for those in both these rooms.
 
But I ask the mods for a bit more help please.  If you might petition Peter to open a new room/forum for my new medical concerns that have completely now overtaken my life.  Please, may I beg Peter to open a new room for amputation/amputees - or mobility impaired - I am not sure which is more appropriate.  To help seek out others who are facing the probable amputation of both my legs due to charkot disease.  It is different than having diabetic charkot, and the one or two people there who have been amputated.  There is a need for the same love compassion and support that pulled me through here with UC on a limb loss level.  Especially being in DC with all those brave soldiers coming home without limbs that I do PT with.
 
Is this something that is wrong or inappropriate to any mods who may remember to ask Peter for?  I would volunteer as a mod as I am having my 14th charkot surgery for limb salvage and they are going to make a decision soon whether to permanantly amputate my legs.  This is a heavy, and I ask this favor of you...and that of Peter to open his heart to our world on need and solace found here at healingwell.com.
 
Any help the mods who may remember me might make will be greatly appreciated...and to those who also may remember me, my wonderful wife says to say hello to all of my beloved here.
 
With all my love,
bob   

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/20/2010 6:23 PM (GMT -6)   
((((((((((((((((((((((((((((((BOB))))))))))))))))))))))))))))))))))))))))
Wow bud ya have been thru the wringer, I would suggest contacting him yourself. But I will also pass this along to him.
Take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/21/2010 11:31 AM (GMT -6)   

Thank you, and I got some more assistance with UC Room as well.  I appreciate the help.  I wanted to post my latest from over there for the people who might have been considering or going the route of an ostomy and rectal removal.  Love Bob.

I posted tis to UC this AM:

Thank you all here, I also don't mean to be a dunce, but how do I contact

 Peter without being a mod anymore?  Perhaps I forgot that part of the room.
 
I do appreciate the support again from old friends, and those who may not know me that well, or at all.
 
In terms of the UC, I will say to the people here that the surgery is not a walk in the park, but you can get through it and put your own life in control if your UC was/is uncontrolled for years.  The hardest part for me to the UC crowd was the psychologolical impact of body image change - but I learned so much from going into the cancer infusion center for my remi imfusions.  There I met women of all ages going through breast removal, and I thought how similiar was this?  My wife is a dear, and she still loves me more than words can ever due justice to - and I her.  But it did make for an adjustment - in my headplace and not hers as much.  As males, I believe we are even more visually aware from a romantic perspective than women - and I think women because of their own concerns of breast surgery are able to be extremely supportive of this process.  This is true of my legs as well.
 
Although we don't romp the countryside the way we used to, we do still all the wonderful romantic things for each other, and that gets me through all of this as well.  The reading, music movies (mostly on Netflix) dinners and deep conversation are as strong as they ever were - when she looks at me she doesn't see a man with a bag, or man withour working legs/wheelchair bound - she sees the man she married still - and I can see than in her eyes -and that is God's biggest blessing to me.
 
We can get through this, and if surgery is a route that we must accept when that decision times comes, you will have the strength to get through, as I found through healingwell and beyond.By the way, the new appliances if you do have the surgery are so much better than they used to be with literally hundreds of options (Too many, as it was confusing at first).  But you can live with it and well if you accept your body image change.
 
I will post this over in Ostomies as well so they are seeing this - and thank you. 
 
With all the love in the world
bob

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 2/21/2010 11:52 PM (GMT -6)   
Hi Bob,
I was just reading all the posts and came across yours and just had to say that your post is beautiful, you are an inspiration and both you and your wife are extremely lucky to have each other.I am happy for you both. You sure have had a lot to deal with and it appears it has made you even stronger. Good for you :-). I have struggled with self image since I had my ileostomy done almost 12 months ago and then I come here and see posts like this gives me peace. Thank you Bob, take care and stay positive
Love and hugs to you and your wife

schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/22/2010 1:30 PM (GMT -6)   

Thanks and love to all here, and thanks you to the mods who have helped me and to Peter, he is the best.  Unfortunately there isn't enough room at the Inn right now for my health concern - which is totally understandable.  Peter just informed me we didn't have enough bandwidth.  I certainly understand the limits of what we can do.

Many thanks to those who have supported me over the many years on UC and Ostomies...your love will always be an inspiration to me...and to the mods who helped carry my message, I appreciate your help beyond words.  And of course to Peter for providing this wonderful place to share - how many servers in the world would be required to alleviate the suffering of all humanity, a cost too high for a governmental agency no less a wonderful private enterprise. 

I will try to look for other modes of support, including plain old shrinks...perhaps that is the best place anyway.  I am not ashamed of the need of help, and no one else should be either.

I will check in as I can going back to hospital April 7 (pusjed back due to record snowfall in my area).  I wish it were tomorrow as it would be over.

But again, thanks and love to all here.

bob

 

 

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