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Hello All - My post is primary intended for the UC mods - of which I used to be one here.

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schrek-chewbacca hunk
Veteran Member
Joined : Jun 2005
Posts : 2666
Posted 2/20/2010 3:34 PM (GMT -8)
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   

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wolverine2
Regular Member
Joined : Feb 2010
Posts : 98
Posted 2/20/2010 4:28 PM (GMT -8)
Wow ............wow

I read this post and Im just lost for words.

You sound like one tough son of a gun!!!
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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 2/20/2010 4:36 PM (GMT -8)
Bob, I will send an alert to Peter on your post. I do think it's an appropriate topic, but don't know if bandwidth will be an issue at this time.

I also used to be a mod here on UC, and I remember your struggle. Please do keep us posted, you know we still care a lot.
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schrek-chewbacca hunk
Veteran Member
Joined : Jun 2005
Posts : 2666
Posted 2/20/2010 6:41 PM (GMT -8)

Thank you Judy, can you tell me who the mods are these days here?  Since being over in Ostomy land for the last year+ I only recognized a few names going back a few pages.  I didn't go too far back though.  Is Dansky still around and Loneylane?  Just to name a few valued old timers.

And thank you for sending Peter a note...you don't know how much I appreciate your help - and pray that we have the bandwith for another room.  I do need the/to help, and I think my story will encourage others to go on.  I am in R&D type surgery at Georgetown beingg like the one of the first few hundred surgeries done worldwide to try a corrective process...having that many surgeries and realizing that even when I was "down" with UC on my worst days, I could still walk.  And that does put certain things in perspective - not that I am taking away one little thing from the pain and misery of this insidious disease - and its impact on our families.  At times when we need help the most, we end up also helping others - and something I desparately need and want to do.  This eternal well of compassion allowed me to deal with the last 3 years of immobility, and before that many years of UC.  How well our spouses/significant others are served by the support provided here.  If not for me, then for my wife, and all the opther families who cope with our disabilities and challenges - I pray Peter can make room for me.. 

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suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 2/20/2010 7:43 PM (GMT -8)

Bob,

Oh, I am so sorry you are still struggling.  I had hoped that once you had your ileostomy surgery that things would have turned around for you.  I will keep you in my prayers and I hope you get that new forum.

Sue

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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 2/20/2010 9:16 PM (GMT -8)
The mods here now are Sherry (Red), Lonie (Carol) and Fruitgirl. I stepped down a few months ago, and Fruitgirl became a mod then.

Bob, I followed your story with great interest, and I was just in awe of your trying the treatment you've been having. I'm sure I would never have been down for that, and I'm really sorry it may not work out for you.

The message has gone to Peter. Have you considered contacting him directly yourself? I know he'd remember you, and you could have a direct discussion if you wish.
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basa0806
Veteran Member
Joined : Feb 2005
Posts : 2103
Posted 2/20/2010 9:26 PM (GMT -8)
It's nice to hear from you, but not so nice to hear you're struggling. I hope things look up for you!! (((HUGS!)))
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Susiebuddy
Veteran Member
Joined : Feb 2005
Posts : 1387
Posted 2/20/2010 11:42 PM (GMT -8)
Hey Schrek!!!! I totally remember you and how you are were such a HUGE supporter here on the U/C forum.... You have been missed!!!! I Just wanted to wish you good luck on getting the new room, it is a huge medical subject and a new room here would be beneficial for SOOOO many people.. I'm sooo sorry to hear you are going through all this. I remember when you had U/C.. all the suffering, and how sweet your wife treated you through it all. I did see you on the ostomy board a few times within the last few months as my GI was recommending surgery for me and I was checking out that forum to see what I was heading in for... But now they suspect I have Crohn's so I guess in that case they don't remove anything unless it is absolutely necessary.... so I have to hang on to all I got for right now... I'm happy to hear you are adjusting to your ostomy, and finding that life is livable with one.. I just pray that you can hang onto your legs, but if you can't.. I pray that you get your new room here and find as much support there as you have on the other boards... Either way, I think it's a good subject to open a new room for :)

BIG HUGS to you Schrekie (((((((((((((((((((((S))))))))))))))))))))))))
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quincy
Elite Member
Joined : May 2003
Posts : 33488
Posted 2/21/2010 12:28 AM (GMT -8)
Bob, my heart is heavy that you had to have your legs amputated.
Your struggles have been vast, far beyond what I could ever imagine.

I think it's a great idea for an amputees forum...I hope Peter gives the light on that one.

You are truly one in a million, Bob....you have a bottomhess depth for strength, compassion, support and honesty. I wish you a great recovery.

quincy xx
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Lonie
Veteran Member
Joined : Feb 2005
Posts : 6448
Posted 2/21/2010 8:10 AM (GMT -8)
Oh my dear Bob, you have been through so much. It's wonderful to hear from you again, and I will definitely put a request in to Peter on your behalf. You have been such an incredible strength to me, and please know that my thoughts are with you. When I think of you, I think of the "Bluebird of happiness." Quincy is right -- you are one in a million. Take care dear friend.
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schrek-chewbacca hunk
Veteran Member
Joined : Jun 2005
Posts : 2666
Posted 2/21/2010 9:25 AM (GMT -8)
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

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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 2/21/2010 9:45 AM (GMT -8)
Bob, if I'd been through what you have in the past couple of years, I probably wouldn't remember my own name! But then, my blonde moments are starting to merge with my senior moments, so...


You can reach Peter at admin@healingwell.com.



Or click on the link from his profile: https://www.healingwell.com/community/profile.aspx?p=1
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Admin
Forum Administrator
Joined : Jan 2003
Posts : 10208
Posted 2/22/2010 8:40 AM (GMT -8)
Thanks bob for the suggestion on adding a new forum. I'll keep it in mind, but right now I have no plans to expand the forum topics, at least not until we are able to upgrade our servers.... which may be a ways off. I'm glad to see you back and I wish you all the best with your health!

Peter
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marty1976
Veteran Member
Joined : Nov 2005
Posts : 2045
Posted 2/22/2010 10:55 AM (GMT -8)
Oh Bob i can't believe what i've just read buddy. I stand back in awe and admiration for the way that you are dealing with this extremely difficult time.

My wife and i recieved your christmas card whilst Beth was in the hospital, we had no idea what you are going through.

Bob you were without doubt the single most inspirational member here on HW, the support and love you shared with all here during your time made this site such a close knit community. I felt we lost a lot of that when you became too poorly to post, we all miss you so much and think of you often.


All my family send their love to a wonderful man.

Thinking of you buddy
marty
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schrek-chewbacca hunk
Veteran Member
Joined : Jun 2005
Posts : 2666
Posted 2/22/2010 11:21 AM (GMT -8)

Thank you so much for your support.  And thank you MArty for the wonderful message.  I am glad you got our card - you are missed too.  I just saw Peter's message and although it disappoints me, I understand that we are sometimes unable to get what we want at the moment. 

I thank the mods here and wonderful people who supported me throughout the many years.  I hope to pop in from time to time - My next surgery is scheduled for April 7 being pushed back because of record snowstorms in my part of the country.

With all my love here to all - My best on getting through and getting by one day at a time.  To the mods again thank you and to Peter.

With love

bob

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