"Restorative Proctocolectomy w/Loop Ileostomy"

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stlwrkr
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 3/10/2008 1:25 AM (GMT -6)   

        That sure is a lot of words isnt it? tongue   I have had UC for about 4-5 years now. I actually went into a good remission for about 8 months and foolishly thought I was "cured". Yeah, I was pretty wrong about that one. I have been flaring for the last year almost. I would start at 40mg of pred and taper down to about 15mg and start bleeding again. I guess after a while, I just figured taking the 40mg of pred and dealing with those side effects was better than bleeding and cramping. Unfortunately two weeks ago, the bleeding wouldnt even slow with the 40mg. I saw my GI who scheduled me for a colonoscopy two days later. Last years colonoscopy showed that half of my intestine was "moderate". This time, it was "severe". My GI told me that I need to consider surgery. Wonderful.

         I fortunately have a family member who is a colo-rectal surgeon. He looked over my info and told me that I am at stage four whatever that means basicly there is nothing left of that old intestine for the UC to eat. My surgery is scheduled for Mar.24. I am so excited. I spend alot of time reading the posts here and it greatly helps. I cant wait to be off of the pred. I cant remember what it feels like to be calm. My pain is not really that bad unless I wait too long to take the pred. I am sure my wife and kids will enjoy me off the pred also skull  .

          I have a very physical job and expect to be out of work for a little while on sort term disability. I am curious as to how long anyone with this similar surgery was out of commision. I am basicly having the j-pouch and then restoration. I cant see trying to be able to return to work with the bag. My work might agree to put me in the office for a little while doing paperwork, but I dont know how long I could ride that out. I work in a very dirty environment with not only dirt/debris but hazardous chemicals also. I will not push myself to get the takedown sooner than I am ready, but I am afraid to wear out my welcome up in the office. Dont get me wrong, I would enjoy hanging out in the office, rubbing elbows with the big dogs, but I am union and my bros. in the field can get touchy about the "light duty" people milking the desk jobs yeah  .

           I will greatly appreciate any tips or info from anyone. In a perfect world, I will have the surgery and be out of the hospital in a week. I will go home and heal for 6 weeks and return to work in the office. After I have had my fill of free bagels and donuts that are always plentiful in there, I will schedule my takedown surgery. Two weeks after the second surgery I will be back in the "gang" and have some sweet scars to show the boys in the shower,(we are required to shower at the end of our shift). I know I am probably dreaming here but it sounds good. I cant wait until I bring in my next batch of venison sausage and after my buddies have had their fill, I will tell them that I stuffed those sausages from my old intestine devil  . Good times. Sorry about that, I work in a steel mill so pretty much anything is fair game here. Thanks for reading my autobiography if you even made it this far!!      

 
UC since 01
Asacol
Prednisone
Mesalamine enema
Tried Remicade
Tried 6mp
 


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 3/10/2008 5:05 AM (GMT -6)   
I have recently had surgery and I am returning back to work 3 weeks after step 1 of 3 surgeries but my work in not comparable to what you do. I travel (which is the hardest part) but do not do any labor, no dirty environment and no chemicals. Plus, I had my surgery done laproscopic so I know that makes a difference in recovery time. I would think that in your situtation, your surgeon would be best to answer when you should return based on your personal work environment which sounds like may make special circumstances. Have you asked your surgeon what he/she would advise?
Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/10/2008 8:45 AM (GMT -6)   
I had a 2-step surgery and was back to work in 3 weeks, kept my ostomy for 8 weeks, had the second surgery and was back to work in 3 weeks. Recovery varies from person to person but ruling out complications the average time people are out following surgery is 6 weeks. My hospital stay for the first surgery was 7 days and 5 for the second step. Good luck with your surgery and recovery and I hope you are as pleased with the results as I have been.

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


tutorgirl2008
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 12/28/2008 7:02 PM (GMT -6)   
Hello everyone. I am not waiting on surgery but I am considering it as I am sick of all the pills and pain and tired of having to stay home to avoid "accidents". I would just like to know the satisfaction rate you all have with the Restorative Proctocolectomy surgery, pros and cons. I am really young (22) and have a 19 month old I would really like to be more involved with (i.e. I can't take him to the park in the summer because there are no restrooms near enough....). I also would like to know what you felt like after surgery? Was it hard to adjust to the "new you", did you have to change how you ate extremely?
 
 
 
dx with UC in January 2006
went into "magical remission" until November 2006
started Asacol and Azathioprine- neither helped
started PredniSONE (60mg decrease by 10mg every 2 wks and it quit helping at 30 mg) in September 2007
Got a new G.I. doctor in May of 2008- he stopped the Asacol and recommended Remicade.
Started Remicade in Nov 2008
Remicade worked dramatically but was messing with my seizures badly so it had to be stopped. (Dec 2008)
 
 
and now here I am... cry considering my other options..

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/29/2008 6:34 AM (GMT -6)   

tutorgirl2008--welcome to the forum!!  I did have a Proctocolectomy w/Loop End Ileostomy in February 2008...but mine was for my Crohn's diagnosis.  I wish I had done mine sooner since I had a lot of rectal/colon involvement and I didn't realize how bad I really was until I had it done!  Recovery was a little more difficult then I expected (I was a veteran of misc Crohn's surgeries) and thought it would be easier, but it was worth every minute.  My life is better now then it was pre-illness!!!!!  I don't mind dealing with an ostomy but I've had MANY years with one and I find it "normal" now.  I did change the way I eat...I eat EVERYTHING now...for many years I had to limit and really watch what/how much I ate so I didn't get sick...an ileo (for me, atleast) has given me the ability to eat even nuts/popcorn and most importantly FRESH veggies and fruit turn (I chew really well, tho)

I don't know if you would have other options since your diagnosis is UC...

Also, you might get more responses if you start your question on a new thread...you could cut/paste your question to a new one...I hope you find your answers:)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/30/2008 12:33 AM (GMT -6)   
stlwrkr,
I appreciate your humor! tongue I had the ileostomy done first and then the proctocoletomy 8 months later, so I don't know how long the recovery would have been had I had them done at the same time. Surprisingly, I was in the hospital for 3 weeks after my ileostomy surgery and only one week after the proctocolectomy. My stoma took 10 days to start working, so that's why I was in for so long after that surgery. I would plan to be off work for at least 6 weeks and then take it easy in the office for a few weeks eating donuts. smilewinkgrin

tutorgirl,
Welcome to Healing Well. I agree with everything that Ohio said. I have felt great since surgery and can eat all different kinds of food now, since I'm not sick. I do not have to take any medicine and have my freedom back, since I don't have to always be near a bathroom. I wish I would have had the surgery done 7 years earlier instead of suffering for so long with Crohn's. Good luck with your decision, and please keep us posted.

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


tutorgirl2008
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 1/9/2009 3:37 PM (GMT -6)   
Well, I went and talked to a doctor about the surgery (J-Pouch) and he did an exam and said the UC was so severe he wants to do a Colonoscopy to take Biopsies to make sure it hasnt turned into Crohn's or that it hasn't turned into Cancer. Only problem is, since it's January, insurance has started over and they want me to bring in $1400 cash in hand for just the Colonoscopy alone. So I am afraid I am going to have to figure everything out money wise before I can proceed with anything. But I am forever grateful for the information and opinions you all have shared. It has been very helpful to me. Keep me in your prayers! Godbless!
 
Tutorgirl..
dx with UC in January 2006
went into "magical remission" until November 2006
started Asacol and Azathioprine- neither helped
started PredniSONE (60mg decrease by 10mg every 2 wks and it quit helping at 30 mg) in September 2007
Got a new G.I. doctor in May of 2008- he stopped the Asacol, put me back on PredniSONE (60 mg, decreased by 5mg every 2 weeks) and suppositories which helped very little... recommended Remicade.
Started Remicade in Nov 2008
Remicade worked dramatically but was messing with my seizures badly so it had to be stopped. (Dec 2008)
 
and now here I am... cry
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