Initial appt with surgeon

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DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 8/13/2010 3:52 PM (GMT -6)   
 
Hi everyone,
 
I am new here. 
I've had ulcerative colitis for almost 9 years, and have gone through ALL of the meds. 
 
I am ready for surgery now, and will probably get an ostomy and a pouch in 2 surgeries, although I am hoping for one laproscopic surgery.
 
I have an appointment with a colorectal surgeon in just over a week, and was wondering if any of you could share with me what kind of questions I should be asking him. 
 
I would also like to know what things you would have liked to have known prior to getting your ostomy, as well as any tricks or good information that you'd like to share!
 
I am ready to get my life back!
Thanks so much!  I look forward to getting to know you, and hearing your advice!
Dixie
 
 
 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/13/2010 3:58 PM (GMT -6)   
DixieS~Sorry to hear you are at this point...I would ask your doc how many j-pouch surgeries they've done, both open and laparo. Make sure they are good...especially if you are having a one step! If you are on pred, you may want to consider a two or three step, tho.

You'll find tricks of things that work (and don't) on most of the latest posts yeah and as far as what I would have liked to have known earlier: THAT ANYTHING IS POSSIBLE!!

Ostomies and J-Pouches take some adjustment but "Life is Good" smilewinkgrin
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 8/13/2010 4:20 PM (GMT -6)   
 
I am on Prednisone.  I am currently tapering, at 20/day. 
I hope to be off of it by the time for surgery, but it will take about 6 more weeks til I'm done with it. 
I had to be on it for about 2 months (before taper), and I have Cushings and look and feel like a beast!  But, it did give me part of a summer with my kids and not in the bathroom, so I am thankful for that.
 
Dixie
 
 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/13/2010 4:41 PM (GMT -6)   
well first, YAY for being healthy soon!

If the pred is all that's keeping you in remission, then you need to stay on it, it's better to be on pred than in a horrible flare.

Some important things, make sure you have a good surgeon. Even though your stoma will only be temporary make sure the surgeon makes it at least one inch long. And that you get it in a good place, when you go for your marking with the ET wear normal clothes, that you wear everyday.

The only thing i really wish someone had told me before hand was that the original output in the bag (right after surgery) is bright green and smells like the most horrible thing ever! I wish someone would have told me its only like that for a day or so, because i freaked out!

Anyway, other than that, your life will be so much better and next summer you will have the whole time with your kids!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/13/2010 6:19 PM (GMT -6)   
If you are on prednisone or have been on prednisone in the past year you really should have 2 surgeries at minimum. Your surgeon can explain why this is important. Getting a surgeon who had done hundreds of jpouch surgeries is better than finding a lapro surgeon who's done 20 procedures. Experience is everything in this surgery. I also recommend you ask him/or her for jpouch patients you can speak with prior to surgery.

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

DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 8/27/2010 11:12 PM (GMT -6)   
 
Thanks everyone for the advice!
 
I met the surgeon, and he is great.  I actually need 3 surgeries.  Sad.
Oh well.  Got the first surgery scheduled in just a few weeks.
Flare is starting up again, coming off the pred, but I guess I can deal with it.
 
My insurance covers exactly 2 colorectal surgeons, so I chose the one I thought was best.
 
I did talk to someone with a J-pouch.  My husband is a nurse and works with her.  I thought her best advice was to make sure I get a wound nurse.
 
I am losing weight (a good thing, in my case) and probably need to buy some pants before I meet with the ostomy nurse to get marked.  Suggestions?
Did you all lose a bunch of weight with the surgery?  I assume there will be swelling involved too.  What did you take to wear home from the hospital?
 
I am a bit nervous about the ostomy!  Wow, it sounds like a lot of work and headache.
I appreciate your help!
 
Dixie

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 8/28/2010 1:11 AM (GMT -6)   
Dixie

First off CONGRATS on the surgery! I'm only 3 weeks out of it and it's the best thing I've ever done. I'm 20 years old and was admitted into the hospital in my 3rd flare over the course of around 2 years... I was already on Remicade and it stopped working and I told myself during my last flare, if this happens again, I'm having the surgery without hesitation.

So I was in the hospital for about 3 days just trying to get my flare tolerable with morphine, steroids, had to get a blood transfusion (my THIRD blood transfusion at 20 years old!) and I was also extremely dehydrated so they pumped quite a bit of fluids into me at a pretty good pace...

So that fourth day I met with my surgeon (AMAZING surgeon) He actually did my dads ileostomy 12 years ago (thanks a lot dad for passing it on) But anyways the surgeons nurse came in and marked me and I just had on my hospital pants and put them to about where I wear my pants everyday... It's at a pretty good place for me.

I didn't really ask much questions haha, I was just ready to go into the OR. I'm 6 foot and I went INTO surgery at about 123 pounds! I was in recovery in the hospital for about 2 weeks, longer then usual though because I went INTO the surgery very sick... I left the hospital at 118 pounds, so I lost what 5 pounds? not that big of a deal but 118 pounds at 6 foot is pretty much as low as I could ever get. I looked like a skeleton. I left the hospital in some gym shorts.. I'd suggest anything of that sort to wear out of the hospital... kind of loose but snug enough that they're not falling off you!

I'm now 3 weeks out of surgery and am up to 145 pounds! Absolutely no serious issues and I'm feeling great!

this is going to be an AMAZING step in your life and I only wish I had it done earlier before I went through all the other crap i've been through with Ulcerative Colitis....
20 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

Full Ileostomy surgery done on july 22!

Living with an ostomy bag right now and loving feeling healthy again! Finally have gotten this horrible disease OUT of my body!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 8/28/2010 7:15 AM (GMT -6)   
     So sorry you are so ill Dixie.  I suffered with ulcerative proctitis for twelve years and ran the gamut of meds but the last two years I became prednisone dependent.  Prednisone did horrible things to me.  I am 64 yrs old (didn't get UP until I was 52).  Prednisone gave me osteoporosis, high blood pressure and high blood glucose levels.
     My GI doctor was not a happy camper when I told him of my decision to have the surgery.  I looked on the net and found the surgeon myself as my GI doctor said he didn't "KNOW" a good colorectal surgeon.  Did you ever hear such bull???
     I was tapering my prednisone and got down to 7.5 mgm of prednisone at the end of May, my surgery was scheduled for June 28th, when I started flaring terribly again.  I phoned my surgeon and was told to increase the prednisone to 40 mgm and decrease it by 5 mgm per week but to stay on 20 mgm at time of surgery.  They would rather I NOT be flaring going into surgery and 20 mgm of prednisone is not that high.  I took his advice and came through the surgery just fine.  I have had a few minor complications and still have some "issues", but all in all, I have no regrets.
     My surgeon would not do a j-pouch on me because of my extended prednisone usage and my age but I told him I had no problem wearing a "bag".  It is no big deal.  He did a beautiful job on my stoma.
     May God bless you and I wish you well and will keep you in my prayers.  It is just soooo wonderful to be off that poison known as prednisone.  Where as once I took anywhere from 17 to 25 pills a day plus those enemas, I now take two pills a day...prevacid (only an eight week course) and Toprol for my blood pressure (but half the dose I used to take).  My blood glucose levels have returned to normal.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/28/2010 7:55 AM (GMT -6)   
for the pants, just but whatever kind of pants you want to wear, whatever you would wear normally, that fit for your marking.

When i was in the hospital and for a while after surgery i wore really really big clothes. like i wore a medium, but i would buy 2 or 3x pants or shirts that way they wouldnt touch anything
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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