New surgery date.

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 9/21/2008 8:09 PM (GMT -6)   
Several months ago I was given a j-pouch surgery date of October 24. Last week I was told that the Surgeon had an all day seminar that day and my surgery date would be October 20. The more I think about it the more I am committed to going through with surgery
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad 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.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 9/22/2008 2:42 AM (GMT -6)   
Hi Paul...You've been through the gammit of meds and nothing's worked for you, which is unfortunate. I don't think anyone's done it all as you have. Wow! (OK, except for the worms and poo enemas).

What's the procedure you have to go through before the surgery?
Looking forward to your informative experience on that. Wonder if they'll let you see your colon after it's out...or at least have taken a pic of it. Gross, I know, but I'd be interested.

How long is the recovery going to be?

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (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 !!!
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 9/22/2008 4:35 AM (GMT -6)   
Thanks quincy, don’t expect any updates from me after surgery for the first week. I’m not sure if I’ll have internet access in the hospital, but then I don’t think I’ll have the energy either. I go to the hospital on September 29 for pre surgery tests. I was told that will take 2 to 4 hours, depending on the number and type of tests they decide to do. If all goes well during surgery I should stay in the hospital for 5 to 7 days and another 3 weeks at home before returning to work. Complications could extend those times. Luckily I have enough sick live to pay me 100% of my salary for the entire time. After 3 or 4 weeks I will go in for the second surgery for my j-pouch.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad 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.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 9/22/2008 4:49 AM (GMT -6)   
Yes, I do believe that it is THAT time. You have fought the good fight and you deserve to get your life back. You have been thru so much with this DD that you deserve some happines and hopefully this surgery will let it happen. I will keep my fingers crossed that when your surgery comes that it will go smoothly and your recovery is uneventful.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/22/2008 4:53 AM (GMT -6)   
Paul, those times are interesting because they differ quite a lot from what i have been told, but the CR surgeons in Australia might not have the experience that US ones have. My CR surgeon told me that even with keyhole, there was a small incision below the belt line. From reading the posts, it seems that US surgeons can perform the whole op via a single keyhold incision. Can anyone shed any more light on this?

Thanks
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/22/2008 6:54 AM (GMT -6)   
Paul, you've fought this DD harder than most anyone I know, and I think you've made the decision that will help get your life back. I wish you good pain control and a quick recovery, and look forward to hearing your story whenever you feel up to getting back on-line.
Judy - Southern US 
 
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/22/2008 7:23 AM (GMT -6)   
Paul,

Jpouch surgery gave me my life back. I am hoping that you will have a similar experience. You deserve to be healthy to enjoy time with your beautiful family. Just remember that full recovery is about a year. The first few months can be incredibly frustrating but it does get better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 9/22/2008 8:07 PM (GMT -6)   
Thanks everyone, I’ve run out of options and it’s time for surgery.

Peter, I’m in Toronto Canada. Although my surgeon can do the operation lapriscopically, I was told I’m not a candidate for it because of my size; I’m 5 ft 10 ½ inches tall and 235lbs. What recovery times were you told?
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad 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.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/23/2008 1:14 AM (GMT -6)   
Paul
 
I have been told i will be in hospital for 7-14 days and off work from 6-8 weeks. Both seem on the long side to me.
 
Have you asked your surgeon how many ops he/she does a year?
 
PF
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept

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