Hello old friends - will be moving on into the ostomy room

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 12/27/2008 9:49 AM (GMT -6)   
Hello old friends (and new ones), I wanted to tell you we are planning to talk to a surgeon (my GI is coming with us!) to discuss my having a total colectomy.  It has been 10 years of every medicine and varying degrees of remission.  Remi put me in full remission in 07.  When restarting remi after my charcot surgery last year - it hasn't worked nearly as well.
That said - and the prospect of additional leg surgeries has moved us to plan for the total removal option.  I have to stop remi for the surgeries - and it was the return of colitis that made me suffer last year.  With the removal of my colon, I won't need 20+ bedpan events and assistance a day.
I have had to give up my cooking and gardening this last year - but the higher spirits are trying to teach me a lesson to let go of "things" and embrace life more simply.  Let's hope I succeed.
I will also probably have two new prosthetic legs sometime next year.  Without the bathroom issues - the recovery should be easier.
As usual, I am lucky to have the wife I do, she has been there for me every minute - and life without a diseased colon will mkae her life easier as well.
I am zen with my decision, and that of my GI.  And will start to visit the ostomy board for some needed help there.
I will continue to check in here as often as my tempermental pc will let me these days.
With love to all,

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 12/27/2008 10:56 AM (GMT -6)   
Surgery might be the best thing for you Bob so I wish you all the best and a speedy recovery when your time comes. Please keep us updated...((Bob))
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
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Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 12/27/2008 11:02 AM (GMT -6)   
Bob, I wish you the best and I hope things get much better!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3

potty girl
Veteran Member

Date Joined Dec 2006
Total Posts : 835
   Posted 12/27/2008 11:48 AM (GMT -6)   
Bob, hope everything goes well for you. you have been threw so much already. I wish only the best for you and your family.

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 12/27/2008 11:50 AM (GMT -6)   
Bob, sometimes we just can't patch up the broken parts, and then it's best just to get rid of them. I think you've already shown more courage than just about anyone I've ever known, and I stand in awe of you.

My prayers and healing thoughts will be with you through this next stage of your journey to a better life.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined Jul 2005
Total Posts : 1614
   Posted 12/27/2008 12:41 PM (GMT -6)   
Wishing you the best. Keep us posted ((((HUGS))))
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Entocort 3 in the morning

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 12/27/2008 1:28 PM (GMT -6)   
Nice to hear from you again Bob, it's been a very long time....sending you best of wishes with the future of your colon, I hope the meds work but if not then all the best for a speedy recovery from surgery.

My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 12/27/2008 1:30 PM (GMT -6)   
Bob, wishing you only good and happy times ahead. A positive mindset is important too.
I know from seeing Bratcat these past few months that her surgery was the best decision made. She is healthier now than she has been for the past 2 years. I wish you the same.

--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Elite Member

Date Joined May 2003
Total Posts : 30198
   Posted 12/27/2008 2:30 PM (GMT -6)   
Bob, you've always been the pinnacle of positive/objective/support...considering all you have endured in the past years. I agree that the colon surgery is the best option for you with all the ongoing health issues you deal with, especially this past year. The fragility needs a break..no pun intended.

I know you have incredible inner strength to get you through the surgery. I know your wife will be there to help you through it.

I wish you a good recovery with no setbacks. Please let us know how you're doing when your computer decides to allow it.

Heather xx
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3440
   Posted 12/27/2008 6:25 PM (GMT -6)   
Good luck, Bob! I think 2010 will be a good year for you, even with all the upcoming hurdles. It's gonna be great- please keep us posted as often as you can! (whoops, I  meant 2009! But 2010 will undoubtedly be even better, since you'll be fully healed!)

diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Fiber supplement

Post Edited (Eva Lou) : 12/28/2008 6:59:03 AM (GMT-7)

Regular Member

Date Joined Jul 2006
Total Posts : 320
   Posted 12/27/2008 7:17 PM (GMT -6)   
Visualizing an exceptional outcome for you Bob xoxoxoxoox wink
Dx'D in 1990. Remission 1991 - 1/2005
Both flares were in extremely stressful times in my life
Colonoscopy 10/2008 mild UC
*****Digestive Advantage IBS formula 4 a day, 1 Forvia, 2 Metamucil.         ????REMISSION!!!????

Regular Member

Date Joined May 2007
Total Posts : 458
   Posted 12/27/2008 7:41 PM (GMT -6)   

Bob, I have been thinking of you lately.  You have endured so much, but always keep such a great outlook. I wish you and your family the best in 2009.  Hugs to you.

PS:  if you do go ahead with the surgery and move to the ostomy board, you will come back and visit with us every once in a while, won't you?


Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5154
   Posted 12/27/2008 9:52 PM (GMT -6)   
Am I sorry to hear that you are facing still more surgery! It ain't fair!!!!!!! Hoping that 2009 brings you much-deserved relief from UC & related health problems so that you can get back to your favorite hobbies, etc. We are all thinking of you and miss your posts. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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