My current status and future here at HW.

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 1/31/2008 5:32 PM (GMT -6)   
 
I went to a doctor last Friday afternoon after my PT, and learned some very disconcerting news for my wife Phil, and me.  As it turns out, my latest xrays/scans have revealed a serious disintegration of my feet from an osteoporosis/charkot disease perspective.  I will need to have some extensive surgery in short order or risk amputation of the left foot/ankle first and then the right.  Although this is a diabetic complication...it is believed that long term steroid use is the prime culprit here. 
 
This is the situation.  Both lower legs must be operated on at the same time in order for limb preservation.  They will remove most of the bones of the foot and ankle and replace them with steel and plastic plates.  They have developed an exo-skeleton - invented by my doctor for my condition - that I must wear for months.   I will be in the hospital - Georgetown University Medical Center - for approximately 4 weeks for the surgery and post op.  I will be transferred to a rehabilitation hospital for another 4-6 weeks  for recuperation.  After which I will be transferred to a nursing home for approximately six to seven months to do physical therapy and relearn how to walk, stairs etc. with the new feet.  A complication is that I must stop my Remicade and 6mp for several months to allow my immune system to recover.  Another risk factor for a variety of ills.
 
The procedure is extremely new and has its risks.  Infection and diabetes are the biggest risk factors with amputation still looming on the horizon.  I will be in a wheel chair for 7 - 9 months or closer to a year.  I will be unable to come home for 9 months, leaving Phil, my beloved cat, my treasured PA home, and my friends and extended family.  I truly and putting myself in God's hands here.
 
I will be going in to the hospital in about 3 to 4 weeks after I get the chemo out of my system.  I will be out of touch in all probability for the first 3-4 weeks.  Phil has promised me a gift of a new laptop helping to keep me connected to the world.  Once I have that, I will give you an update on how I am doing.  
 
Remember that I love you all - and you will all be in my thoughts and prayers everyday.
 
Hugs,
bob hunt   



jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 1/31/2008 5:42 PM (GMT -6)   
Bob,
My thoughts and prayers will be with you everyday. Please keep us updated on how you are doing.
Best wishes to you and big ((((((((((((hugs)))))))))))))))
Take care of yourself and come back soon to your HW family

Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


auntmoo
Regular Member


Date Joined Dec 2006
Total Posts : 43
   Posted 1/31/2008 5:52 PM (GMT -6)   
My thoughts and prayers will be with you. Hang in and keep us posted!

ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 1/31/2008 5:56 PM (GMT -6)   
good luck, although i don't really know you, i have read your posts often and you have helped alot of people - thanks and hope to see you back soon. Be well!
UC diagnosed January 05

Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, canasa (tried but got worse at the time - connected or not laying off for now)
Current meds: Asacol 2 - 3x, Aciphex (acid reflux), Remicade - 6 treatments, prednisone boo 10mg now tapering, multivitamin, caltrate 2x a day. probiotic (florasmart right now), astelin (nasal spray) as needed, allergy shots, fosamax


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 1/31/2008 6:12 PM (GMT -6)   
Good luck Bob!!! (((HUGS!)))

Sam

Diagnosed in September 2004

Currently on...4800mg Asacol, 25mg Elavil, Ortho Tricyclen and some immodium

"If you don't like something, change it. If you can't change it, change your attitude"

Maya Angelou


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/31/2008 6:20 PM (GMT -6)   
Bob...You stay strong! We will all be thinking about you and expecting updates on how you are feeling!! My thoughts and prayers will be w/ you.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/31/2008 6:21 PM (GMT -6)   
Bob,I have not communicated with you on this forum before,but my heart goes out to you.I can't imagine what you're going through and definitely won't be feeling sorry for myself any time soon.I hope the surgery goes well for you.

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 1/31/2008 6:23 PM (GMT -6)   
Good luck Bob!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/31/2008 6:37 PM (GMT -6)   
Hey Bob - you are one brave soul and very lucky to have such a wonderful wife at your side. Thanks for all the time you have put into HW, I know there will be many people who wish you well in what is to come. I for one wish you success in your coming surgery and a speedy and successful recovery!

--Sev
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/31/2008 6:57 PM (GMT -6)   
Hi Bob,
I've never posted with you before, but have read many of yours.  I find myself being encouraged by your posts, as you are going through so much, yet still willing to bet there for any of us who need help.  You will be in my thoughts and prays throughout your journey to come.  God bless you.
 
ABabs
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!Canasa suppositories 1000mg 2X/day as of 1/22/08
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 1/31/2008 7:11 PM (GMT -6)   
Bob, my prayers will be with you. Good luck.
Rona

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,
potassium.


philly-fan
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 1/31/2008 7:36 PM (GMT -6)   
Good luck Bob, and I am looking forward to reading your positive recovery updates in the future. You are a mainstay here and very much loved by these people.
I'll pray you have no problems while off the remicade, and have a complication free surgery and recovery.
Good luck

How long were you on the prednesone?
Steve


Asacol 1200mg-3x a day

Probiotic=metagenics ultra flora plus DF

Hydrocortizone when needed

Off the prednesone since September 8th (omg)


Heart meds

Lipitor,Toprol, aspirin 81

synthroid


quincy
Elite Member


Date Joined May 2003
Total Posts : 30674
   Posted 1/31/2008 7:47 PM (GMT -6)   
Oh Bob, I'm so sad to hear all you're going to have to endure for the next many months. I do hope the surgery is successful and that the healing process goes smoothly.

Phil is awesome support to you...the laptop will be good to keep you connected. she should add in a webcam so that you can see the cat in action!

Healing well prayers and wishes sent your way.

Heather xx
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


Liz&Kenny
Regular Member


Date Joined Jul 2005
Total Posts : 431
   Posted 1/31/2008 7:52 PM (GMT -6)   
Bob- You have always been an amazing support to everyone here. It sounds like you have a big challenge in front of you, but I know you are up to it since you have demonstrated your resolve and courage here many times. I'll be praying for you, and hope you know that even in your absence you will be a very beloved member of this board. You've been around for several 'generations' here and whenever you post back we'll be glad to hear it.

Hang in there!
Liz

Kenny's my colon, he decided to get UC in July 2004.
RIP Kenny! JPouch Step 1: 6/19/06, Step 2: 8/25/06.


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 1/31/2008 8:05 PM (GMT -6)   
Bob, I'll be praying for you.

Be strong.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


icanrace
Regular Member


Date Joined Sep 2007
Total Posts : 221
   Posted 1/31/2008 8:09 PM (GMT -6)   
man dude, I hope things go well for you! Stay positive!
started Prednisone & Asacol on Thursday 10-4-2007

currently OFF Prednisone


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 624
   Posted 1/31/2008 8:11 PM (GMT -6)   
Oh, Bob, what a road ahead for you and Phil.

I certainly will be praying for you and keeping you in my thoughts, wishing you a strong, swift and successful recovery.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 1/31/2008 8:14 PM (GMT -6)   
I am so sorry to hear all that you have to go through! I hope the procedure is a great success and your recovery is full and quick! I will be praying for you!!
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 1/31/2008 8:33 PM (GMT -6)   
Wish you the best and will be praying for you.
Pancolitis '04
Yet to ever go into remission, additional Flare-up since Aug 12th
Time off work since 10/17.  Returned to work on 1/11 and doing much better.
 
On Lialda (2/dy), Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Borage Oil, Iron


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/31/2008 8:34 PM (GMT -6)   
Bob, just know that you are in my thoughts and prayers my dear friend. We'll be rooting for you all the way. (((((HUGS)))))) to you.
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/31/2008 9:12 PM (GMT -6)   
Bob, I'll be praying for a successful surgery and good recovery for you. I'm sorry you're having to suffer this and I hope you'll be up and walking again after your rehab. Prayers for your sweet Phil, too, as she's by your side helping you to overcome this.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/31/2008 9:17 PM (GMT -6)   
More prayers and best wishes for an amazingly speedy recovery and return home!
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


JBM13
Regular Member


Date Joined Jun 2007
Total Posts : 20
   Posted 1/31/2008 9:24 PM (GMT -6)   
Bob, I'm so sorry to hear of your troubles. I can't tell you how many times I've found comfort in your posts though I rarely post myself. Take care of yourself, let Phil take care of you, and come back to us when you can. Many prayers and much love go out to you during this difficult time.
-25 year old female with left-sided UC and ulcerative proctitis
-Diagnosed May 2004, in remission for four months currently
-Past medications: Rowasa, Canasa, Dipentum, Asacol
-Current meds: Colazal 9 pills a day (finally off prednisone--yayy!), Flora-Q, multi-vitamin


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/31/2008 10:53 PM (GMT -6)   
Bob, I’m sorry to hear about your surgery but I know you can get through it. Keep us informed.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 1/31/2008 10:58 PM (GMT -6)   
Bob, I hope the surgery is a success and you have the best possible recovery. Thanks for the update.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission

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