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Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/9/2007 5:36 PM (GMT -6)   
Had yet another visit with my Gi today. He's been trying to get me on Humira to help take care of the fistula before yanking out my rectum. Due to the fact that all the lovely meds i'd been on for years has damaged my lung, we'll be skipping the Humira and head for the surgery.  Surgeon should be calling me this week. How nice. haha  Can't wait for someone to come up and smack me in the rear and watch me scream! 
   How long does it take to recover from this surgery??  How bad does it hurt to sit? It there a lot to deal with while it heals?  Ahhh, the never ending questions when losing your :-) ss.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/9/2007 5:43 PM (GMT -6)   
Slice, Does this mean you wont be such a butt anymore? ha ha ha someone had to say it.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/9/2007 5:46 PM (GMT -6)   
Aww, good luck Slice! I'm not sure if I have a rectum or not any more, I didn't think to ask and I haven't really looked :S Not something I want to explore really. :P
But yeah, sure you'll be fine, my thoughts are with you :)
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : http://stomagirl.livejournal.com ..


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/9/2007 5:47 PM (GMT -6)   
mine's coming out too... I've heard it is the least trying part of the surgical procedure, but who knows! Good luck!

diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/9/2007 6:06 PM (GMT -6)   
Slice,
Since you have fistulizing Crohn's in your rectum, like I did, you'll be happy to have it removed. Mine came out a year ago, along with my large intestine. Do you still have your colon?

My dad went into the hospital 2 weeks after my surgery. My husband was at work, so I got in my car and drove an hour each way to see my dad several days in a row and had no pain or problems. I was mostly weak and fatigued after surgery, and Vicodin took care of the pain. My abdominal wound was much more painful than the butt wound.

I also had a seton drain in my butt, which came out during surgery. It actually hurt me more to sit BEFORE the surgery than after - go figure! My surgeon left my butt wound open, so I packed it with saline-filled gauze twice a day until the hole healed, which took about 10 months. My surgeon said that I was the slowest healer she'd ever had. It was not a big deal to pack the wound. It didn't hurt, and it took all of two minutes in the morning and two minutes in the evening.

Because my rectum was so diseased and hurt all the time, I don't miss it at all!! It's wonderful to be free of all of the problems that it caused. If you have any other questions, please feel free to ask.

Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/9/2007 6:36 PM (GMT -6)   
Lost the colon when i was bagged. August 2006. Didn't have a choice, it was a mess. GI did tell me today i would be very fatigued after the surgery.
I do have the setons in right now. Draining, but not that much really. Nothing really hurts right now. I've never had ANY blood ever. Basically they've mostly told me i have crohn's but the rectum is infected with colitis. Go figure.
I have to ask.......10 months!?!?! Does it drain during healing? You don't end up looking like you sat in a puddle during the day do you? I mean, i'd like to go back to work and not have to worry about what my rear looks like. You know what i mean.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/9/2007 6:41 PM (GMT -6)   
The hole was really tiny the last couple of months, so it basically closed up after 6 months. It never made a mess. The gauze would catch any drainage, which was minimal. Yeah, you can go back to work whenever you have the energy.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/9/2007 7:49 PM (GMT -6)   
Hey Slice --- when someone calls you a "pain in the *ss", you will be able to answer them, NOT ANYMORE after you have your surgery!!

My rectum was removed with my colon and part of the small intestine all at once. Lots of Crohn's in the rectum too. I have to admit that the rectum was a more painful incision to heal than the abdominal one. Neither of them was very comfortable for me, but the back side was the worst by far. Keep in mind tho that I was extremely underweight at the time of surgery, and had no extra padding to sit on, well, try to sit on. I learned quickly how to sit on the side of my thigh/hip rather than on my but*. But you will get thru it just fine.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/10/2007 12:02 PM (GMT -6)   
i hope the surgery goes well, and get better soon.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/10/2007 1:09 PM (GMT -6)   
LOL Peggy!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/13/2007 5:45 PM (GMT -6)   
Slice,
Did the doctor say when he would want to do the surgery?
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/14/2007 11:55 AM (GMT -6)   
I have an appointment with my surgeon Tuesday. I'm hoping to at least hold off until Jan or Feb. Not sure if thats what he's thinking, but i'll find out soon enough.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/14/2007 4:45 PM (GMT -6)   
Slice...if you want to know what the rectal removal process looks like, there is a video which shows the removal of the rectum...EWWWW. It is pretty nasty. You can see this in the same video as the Ileostomy/stoma presentation. I felt some serious sympathy pains watching this....you may want to pass on viewing this until after your surgery.

How do you feel about having the surgery? How will this surgery benefit you?
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2007 6:26 PM (GMT -6)   

Hey Slice - -

Don't, I repeat, Don't watch it!  I tried and my belly hurt when they "opened" her.  Seriously, what you don't know at this point won't hurt you!!!!

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/16/2007 7:11 AM (GMT -6)   
Yeah, i'm all set with watching that.  I'll watch the other ones that i KNOW won't be happening to me.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/16/2007 5:38 PM (GMT -6)   
It's official.  I will begin 2008 by losing my @ss.
 
The year can only get better after that!!   eyes
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/16/2007 6:19 PM (GMT -6)   

Slice,

Do you have a date set for your removal?  Losing it, physically, that is!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 10/16/2007 6:32 PM (GMT -6)   
Peggy & Amey--Like the cute jokes :)

Slice--I just got bagged 3 weeks ago and my surgeon told me I WILL need to have my rectum removed in the next 10 years. Not sure why he gave me a date like that especially when I do have mucous every other day coming out and blood at least once a week and he said it is inflammed and active. Hmmm.

I will be very interested to hear how things go for you since that is in my future, most likely before 10 years the way things have been going thus far this year. Sucky!

Flchurchlady--So your rectum, did your butt hole actually get sewn or grow completely closed?? By packing you mean stuffing gauze in your hole?? When this does happen for me, I would like to have the option to keep my hole, can that be done?
 NEW me calls for a NEW profile :)
Ileum stricture removed laporscopic May 23, 2007
Subtotal colectomy & ileostomy September 24, 2007
Currently tapering off prednisone from surgery will be done and officially med. free in 3 more weeks :)
Will need rectum removed within next 10 years
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian, Humira, and Vancomycin (sp?)


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/17/2007 6:15 AM (GMT -6)   
I've had an ostomy for 17 years and still have my rectum/anus. I have it checked and biopsied whenever I have a colonoscopy or any test where they put me out ;0). I just had another surgery, a resection and a new stoma for an ileostomy from my colostomy (moved from one side to the other)and while my surgeon said they should probably take it out, it wasn't dire enough to do this time around either (I've had 3 surgeries since my ostomy surgery).
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/20/2007 9:14 AM (GMT -6)   
Hayleybaby,
When my rectum was removed, the surgeon left the wound open. I packed it twice a day with saline-filled gauze until it healed up, which took about 10 months. Some surgeons sew the hole shut during surgery. Mine left it open, because I had problems with fistulas, and she wanted to make sure they were all gone. When you have it done and are all healed up, your butt will look like a butt, but there won't be a hole there anymore (if that makes sense) tongue
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 10/20/2007 9:28 AM (GMT -6)   
My surgeon said the same thing. That i'd have to pack it in the morning and at night. But he also mentioned that he might use a " vac" to help it heal faster. I do have a fistula, so it might take a while for everything to heal up.
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/20/2007 9:32 AM (GMT -6)   
My rectum was removed during my ostomy surgery cuz it was full of CD too. I will have to say that moving, sitting, standing, and even laying was a challenge because of the multiple wounds/stitches/staples I had all at one time. It was a challenge as is any recovery from a major operation, but you will make it. And I am thankful that it was done that way and that I didn't have to undergo that removal at a later date. Just one less thing for CD to have to attack for me! As my husband always reminds me, no pain, no gain! I gained my health from that one. (I really don't handle pain well anymore --- getting too old!!!)
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Bluz4Greeny
Regular Member


Date Joined Oct 2007
Total Posts : 60
   Posted 10/29/2007 2:06 PM (GMT -6)   
Oh God , I still have my rectum and anus, and reading what everyone posted scared the heck out of me! I thought that they kept this just in case you can be reconnected? Is it possible if you only have a small intestine or is this something I would have to worry about down the road? I'm sorry that this happened to you, I hope you feel better soon

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/29/2007 9:08 PM (GMT -6)   
they leave it in depending on where your disease was, in my case it was in there, and there was no reason to keep it. They also leave it in if you are thinking about a reversal. I didnt' even want to mess with that, so i just went on and got everything out!

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 11/1/2007 6:07 PM (GMT -6)   
So much for January.  Surgery is being moved up to November 13th.
 
WHOA!!  Thats in a couple of weeks!!
 
Crohn's for what seems like forever
Bagged in August 2006
 
We cheer for 2 teams. The Red Sox and whoever is
playing the Yankees.
 WORLD CHAMPIONS 2007

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