Surgery Date set (Slim)

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slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/21/2008 7:21 PM (GMT -6)   
It is as official as can be I guess.  I am on the schedule to have surgery the 27th of this month at 12:30.  It will a total abdominal colectomy with end ileostomy.  The surgeon is thinking we can do the j-pouch but only wants to do this for the first surgery because of the prolonged use of prednisone.  I am uncertain if I will want to "chance" the j-pouch surgery but have time to consider that later.
 
I have to check into the hospital the day before in the morning so first was wondering if anyone could let me know what all things I may have to do that long before surgery.  I realize the clean out and such but had no idea they would need to start me better then 24 hours prior.  I assume the reason I check in the day before is because of the distance I live from the hospital.  If I was closer I would probably do a lot the day before then be allowed to go home and check in the morning of.
 
Now that I have official word the reality of it is setting in.  The enormity of the situation is really hitting me and I have been through a rush of emotions lately.  Some probably from those dang pred pills. eyes   I realize that I will be better when it is all done but I always worry and as major as this is it may just drive me crazy before next week. (That would be a short drive LOL)  Any words of encouragement or tricks to get the thoughts of it off of my mind for just a few minutes would be greatly appreciated.
 
John
  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/21/2008 7:42 PM (GMT -6)   
i am not sure why you have to check in before, i wanted to,because my drive was almost two hours to the hospital but they didnt' do that with me. May just be your surgeons preference.
it is gonna be really really hard not to what if yourself into craziness, just keep remembering how much better it's going to be

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/22/2008 7:07 AM (GMT -6)   
I was checked in the day prior to surgery and the tests performed are blood work, EKG, chest xray, and an appt with the ET nurse to mark the site of your stoma. It's pretty much a full day of fun!

Good luck with your 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


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 5/22/2008 9:11 AM (GMT -6)   

John

First and foremost - good luck with your surgery. When you say check-in, is that just for labwork, x-ray, EKG, etc., or do you mean admitted to a room and all? I'm the same as Summerstorm; my hospital was 95 miles/2.5 hours away from home, but I just showed up the day of surgery. I had to do a 72-hour clean out - started on Friday for surgery on Monday, but I'm sure that was just because my system is so slow. Now if it was my son that has Crohn's, a one-day prep would be fine for him. :o)


Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son (HLA B27 positive) diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/22/2008 8:10 PM (GMT -6)   
my sugery was on tuesday, and i quit taking my UC meds on sunday, it was funny i had just enough to make it through sunday morning, lol. Then i did things normally until sunday night, then nothing but liquids after midnight, and clean out on monday, and nothing after midnight on tuesday I had all my presurgery bloodwork and stuff a few days before.

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/22/2008 8:58 PM (GMT -6)   

Thank you all for the kind words and the well wishes.  I live about 130 miles from the hospital so I guess that is why they are checking me in that early, I just figure they won't start the clean out till later so was confused why I needed to be there at 10:00 a.m.  Just seems like I will have a lot of time sitting in a hospital thinking about it all.

I can't wait to stop taking all these meds.  The surgeon and GI want me to keep taking them till Monday I guess, just to make sure that even with my flaring that it doesn't get any worse.  Actually this week has been mild so far (that is no help with this thinking it over and over thing) eyes     My biggest fear was that I would have this week as a week without any symptoms which would have driven me crazy second guessing my decision.

I will keep updating on here, I take my laptop with me everywhere I go and I should be able to leach internet off of the hospital.  Yeah, I know I am such a computer geek. tongue   Not sure how much posting I will be able to do Tuesday or Wednesday but by Friday if all is well I should be able to drop a quick note.

Suebear, I see you have the j-pouch, if you want to give me some pros and cons about it I would appreciate it.  I am not sure I want to go that route, I am worried that I will face the same problems I have now (urgency, incontinence and such).  Most of the employment I get into tends not to have exclusive access to facilities immediately so those two symptoms would possibly cause problems.  Just some research I will be doing in the next three months or so to make the next decision.

John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 5/23/2008 10:36 AM (GMT -6)   
John,

There is not urgency or incontinence with a jpouch. I can easily hold it for 1-2 hours if needed. Since having surgery I have never needed to know where the bathrooms are. With my jpouch I have hiked 200 miles across England, 100 miles through both Scotland and Ireland, hiked in and out of the Grand Canyon, hiked Patagonia and am headed this fall for a 2 week hiking trip in Turkey. Had the jpouch not been a very viable option I would not be doing these trips. One of the reasons I selected a jpouch is because I am a backpacker and the lack of potable water in the backcountry worried me with the ostomy option. There are really no perfect surgical solutions, you really need to weigh your lifestyle against the pros and cons of each surgery choice. The best surgery for you is the one that you can live with!

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


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/23/2008 1:22 PM (GMT -6)   
Suebear,

May I just say how impressive a role model you are for all of those j-pouchers out there!!! Girl, you go!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


NorwegianForestCat
New Member


Date Joined May 2008
Total Posts : 12
   Posted 5/26/2008 7:21 AM (GMT -6)   
slim:
 
I had a subtotoal colectomy w/ ileorectostomy on May 7th at Mayo clinic in MN. It was the opposite experience as yours in that I was to call the hospital the evening before checking in to find out what time to be there. Consequently because Mayo is over 550 miles away from my home, I went there approximately a day and 1/2 before, checked into a nearby hotel (to make sure clean out was done - go lightly/go heavily). They did not even do much of any tests before hand. I was a little anxious but not about the surgery itself as much as would I be ready. I asked my surgeon about this and he said that even if I was not totally cleaned out, the flatter the intestine was, the easeir it would be to remove. Think about those who have emergency surgery w/ no time to prepare ! They use some kind of sanitary protective sleeve at the incision points to pull the intestine through.  The complication I had was afterwards -- excessive bleeding (had to have 4 units of blood).  I think this could have been prevented.  In any case I'm doing alright now, having mulitple bms per day with some soreness and also verrry tired.  Other than that I already feel that my life has improved !!!  Godspeed to you and I'll pray that you will have His peace.
 
NFC 

Subtotal colectomy w/ ileorectosomy


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/29/2008 5:33 PM (GMT -6)   

Just a quick update.  Surgery went fine.  Went in Tuesday at 12:20 got out at 5:45 p.m.  I was in a lot of pain in recovery but they got me regulated with the pain pump and now I am unhooked from everything.  Recovery is going good and may get to go home by tomorrow but probably sometime this weekend.  I feel so much better, I didn't realize that a colon can cause such a problem.  I will update more later, learning all kinds of new stuff with this little, sometimes vocal, guy eyes

John


Total Colectomy with End Ileostomy May 27th, 2008


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/29/2008 5:54 PM (GMT -6)   
Slim, I'm glad to hear your surgery went well! Interesting to see your previous signature to your current one :)
It's very comforting to me to hear that you're already feeling so much better after getting the UC out of your body. Hope your recovery continues to go smoothly and you can start living your life again. Good luck and please do keep updating!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/29/2008 6:16 PM (GMT -6)   
Sounds like you are off to a good start. Glad to hear you are doing well and getting to know your stoma...don't forget to name it!

I too am impressed with the depth of Suebear's knowledge (and yours too Peggy). You are both so helpful to all of us. Thanks

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/30/2008 7:22 AM (GMT -6)   

ediekristen, I really enjoyed changing that signature.  Knowing all that BS I went through with those meds made deleting all of that enjoyable.  It is not completely accurate though because I am still on the prednisone but will taper down to nothing now.  Also I am on pain meds but that too will be brought down to nothing.  I have been following your quandary also and would like to say that I agree with others when they say you have to do what is best for you.  I have one in-law that is not onboard with my decision and amazingly she is in the medical field.  When I talked to her she pointed out the surgery was permanent and once your colon is gone you can't get it back.  i pointed out that it was the same with a life.  She failed to understand the deadly consequences that come with this disease.  I went through some of the worst with this disease not long ago but I don't feel that should be a marker for deciding surgery.  Waiting till something bad happens could have very bad outcomes to your situation.  For the most part this disease causes a ton of inconvenience and that is what most people see.  They assume that with a few adjustments to your diet, lifestyle or planning that you can deal with it.  That is not the case.  I tried, then the disease would ct into the time I would think was OK to go out.  I would change my schedule again and the disease would change.  You have to evaluate your situation for your lifestyle.  You may be able to handle the changes now but later they become too much and your research now will help you with the decision.  I am not sure what my decision will be with the "j-pouch" surgery but that seems to be very small now that I have taken care of the disease.  I will keep researching the pros and cons and will come to a decision that will work for "my" life.

OHIO76, so far all I have come up with for a name is Leo but that will probably change.  It does have a mind of it's own and I am finding it will talk when ever it wants to be heard. eyes :-)

John


Total Colectomy with End Ileostomy May 27th, 2008

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