Questions for people with a total colectomy...

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ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/27/2007 1:06 PM (GMT -6)   
Hi everyone,

I am sure these questions have been answered before, but I looked through past pages and couldn't seem to find exactly what I wanted.. :)

When getting my ileostomy, I will be having my colon, rectum and anus removed (my CD affected all of these parts extensively..). My questions for those of you that have had this done...

1.) Does the term "total colectomy" aka "proctocolectomy" refer to what I am having done? Or do those procedures just refer to a removal of the colon and rectum (not anus)?

2.) How the heck do they "remove" your anus? It is not really the same as taking out your colon or rectum, which are parts of your intestine that I can picture being cut out...but removing your anus is like trying to remove...I don't know, your ear canal, or your throat! How do they do this?

3.) (Going back to #2) How does the wound on your bottom heal? Do they stitch it? Pack it with gauze? Is it very uncomfortable? How do you sit/lay when healing?

I get very uncomfortable thinking of them removing this part of me, because it seems like it will hurt much afterward, and they told me that when removing the anus the wound tends to heal slowest since it is a strange part of the body....

I have not scheduled a date for my ileostomy, but have been leaning towards sooner rather than later after talking to a few sensible and caring people on this board... :-) :-) :-) :-)

Thanks to you all.

Erin

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 10/27/2007 9:02 PM (GMT -6)   
1), that is the most confusing thing to me, lol. I think that the proctocolectomy is what you are having done. i had both removed also.
2). that was a hard concept for me, they remove the inside of it and then sew it shut. i thought it was weird to remove a hole too!
3) they stich it with stiches that just dissolve, then they put gauze on it for a while. i just tried to kind of lay with the pressure on my lower back, and also sitting on smushy pillows, but some people sqay those doughnut pillows help, i thought that made it worse. anyway, i won't lie, it does hurt. If you have had a child and you remember what that felt like down there, if you got cut or torn, it doesnt' hurt that bad, and it doesn't hurt as long as that hurts, but it does hurt. One of hte things that bothered me most about it was it was so itchy! but there are ways to help that.
anyway, hope that helps!

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 10/27/2007 10:11 PM (GMT -6)   
Ditto for me too, Summer -- I had everything removed all at once. It did hurt and I was really underweight by my surgery, so I had NO padding to sit on. Donut pillows were out of the question for me. I did the prettiest swan stance, from laying down to standing up WITH OUT sitting in between! The nurses had never seen anyone do that before, but I wasn't about to sit on that incision - no way.

I slept on an air mattress for awhile too. Regular mattress was too hard at that time cuz of the weight issue mostly. But it does itch at it heals. I think if you have to have it removed, just get it all done at once and be done with it. But just remember, you will be one step closer to being healthier again!

Best of luck to you.... good questions.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/28/2007 7:23 AM (GMT -6)   
summerstorm and peggy,

Thank you both so much for the great information!! Thank you also for being so honest about what it will be like--I would rather hear that yes, it will hurt, and what it will hurt like than being told it is not that bad because you feel bad telling me that! :)

Peggy, that is sad that you didn't have a lot of "padding" to make your recovery a bit more comfortable...! My surgeon wants me to get the surgery soon before I have the chance to flare and lose weight for reasons like that! Right now, I am at a stable 128 (I am 5'6''), so I have some cushion to rest on. :)
Summerstorm, I know what you mean about putting the weight on the small of your back--I am sure I will be trying to do something like this, as it sounds the most simple (I can never sit comfortably on any of thos crazy pillows anyway).

I also am glad to hear there are other people who have had this done...I was feeling like I was all alone, since it seems most people here just lost the colon or colon/rectum.

You both are right to just get it done all at once--I plan on getting everything taken care of so I can move on with my life!!!

I also think I am going to begin exercising regularly--kind of like "training" for surgery!! I think being in the best shape I can going in will really help me to recover faster. That for me is great motivation to run and lift some weights! :-) :-)

Take care.

Erin

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/28/2007 11:24 AM (GMT -6)   
Erin.
 
Don't overexercise and take any weight off --- WALK, WALK, WALK!!  I've been told that before and after surgery, walking is the very best form of excersie to do.  We all know they expect you to get up and walk right after surgery, but before surgery is important IF you can do it - not to ill.
 
You have a great, positive attitude girl!!  Keep it up.  You know there will bre ups and downs...  as long as the ups outnumber the downs!!  Keep me updated on your schedule for surgery,
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Bram
Regular Member


Date Joined Feb 2007
Total Posts : 48
   Posted 10/28/2007 2:46 PM (GMT -6)   

Hi i have had the op around 5 weeks ago yes the rear end will hurt but is mangable with the pain meds, a good soft pillow helps to sit on, i did not pack the rear area with anything yes it weeps a bit but i used  good surgecal absorbant pad 2 times a day. in the hospital they said dont have sitz baths because it qickens the stiches to dissolve but i found it helps clean the wound and helped with it healing ,the stiches did not start to fall out untill the beginning of the 4th week

 


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/28/2007 6:14 PM (GMT -6)   
Peggy,

I am sure you are right that walking is the best get-in-shape exercise for me!--and I am glad to hear it, because I I am not too fond of running anyway!! (I swear, anything that jars my insides makes them feel uncomfortable...!) But I don't mind walking one bit, even very long distances. :) I am planning on starting a walking regime soon...

Bram,

Thanks for sharing your experiences also. :-) So I guess the consensus is that it will be sore...but when I think of all the pain I have endured from Crohn's, I am sure that I can handle it, you know? I am assuming that your surgery went well, which is great.

I have a recurring stricture in my anus right now, which has been dialated at least 7 times (I can't keep track anymore). During this procedure, basically the tissue was stretched causing it to tear (and bleed a good bit), and then healed shut with a laser. After this procedure, I never had any pain at all (honestly--none!), though they always gave me a bunch of vicodin to tkae home (I never took any). I am hoping that I will also feel less pain than they expect after the removal of this area....

Have a good week everyone!

Erin

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/29/2007 4:15 AM (GMT -6)   
Erin,
A total colectomy is when the entire colon is removed. If the rectum is also removed, then it is a proctocolectomy. In that surgery, the doctor can either sew the wound shut or leave it open. If the wound is left open, like it was in my case, you pack the hole with saline-filled gauze twice a day until it heals. That wound heals slower than the incision in the abdomen.

It is uncomfortable to sit in the beginning, but they do give you pain meds to take away the pain. I was able to sit and drive two weeks after surgery. The only reason why I drove so soon was because my father was very sick in the hospital, and I wanted to see him.

In regards to when you have your surgery, I'm very glad to hear that you're leaning towards sooner rather than later. I can honestly say that the day after my surgery, even though I was sore, I could tell that the Crohn's was not there sapping my energy and wreaking havoc on my system.

My surgery was one year ago. Since I've healed from it, I have not had one moment of pain. It has been wonderful to be pain-free, medicine-free, and actually healthy again. I feel like a new person, and since there is no pain, I honestly forget about the ostomy. It is completely hidden under my clothes, and I only deal with it when I go to the restroom to urinate. That's when I empty the pouch. It only takes seconds, and I'm on my way. My hubby is jealous and wishes he had one!! :-)

I'm glad you're asking questions and are getting answers from people who have been through it. If you have any other questions, please do not hesitate to ask.

Take care,
Cecilia

ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/29/2007 4:31 PM (GMT -6)   
Cecilia,

Thanks for the informative post! Also, I like to hear about your experience since it seems so positive. :)

I can picture what you mean about feeling different after all the diseased Crohn's tissue is gone...I have often wondered about that... for example, when I have a "good" day now (with Crohn's), if that is really only me feeling half as good as I potentially could (without Crohn's)...you know? As if I can't remember what it is like to feel "good," at all, since I have been living with Crohn's almost longer that not!...

That idea makes me excited to be the healthiest I can be!

I am very thankful that I found this message board.

:-)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/29/2007 4:53 PM (GMT -6)   
Erin,
I'm so glad you found this message board, too. I know exactly what you're talking about. My best day with Crohn's could never compare to how good I feel now. I guess the best way to describe me now is healthy. I have no pain, take no medication, and therefore have no side effects from medication, and most of all, I have no colon problems, because there is no colon!! tongue

Before surgery, I was concerned that I would not be healthy without a colon. I didn't know that our small intestine absorbs all the nutrients from our food, and the colon mainly extracts fluids. So, as long as we drink plenty of water, which is something we should do anyway, we're going to be healthy. It's truly a miracle of medical science!

Take care,
Cecilia

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/29/2007 8:56 PM (GMT -6)   
i agree that one of the few and far between good days, if you could even call them that, couldn't begin to compare to now. And like cecilia was saying, alot of times i forget all about it even being there. Espceially if i am busy, sometimes i even forget it si there while i am on this board, which should tell you something, lol.
I slept on the couch for a while afterwards, something else you should get, is one of those big body sized pillows, because when you get home, after a little while, you will be able to sleep on your side, to keep the pressure off your back, and the body pillow will keep you from rolling over onto your tummy. Or sleeping on the couch does the same thing. also, i don't know if i can explain this, btu i will try, make the body pillow and your pillows form like a v shape at the top, and lay in that, and that will kind of make your butt up in the air a little, plus, if your back is hurting, which is probably will some, you can lay on a heating pad and that helps alot!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/30/2007 10:25 AM (GMT -6)   

Erin,

I will have to agree with Summer about pillows.  I didn't have a "body" pillow, but I sure did use an extra bed pillow or two, esp at night so I wouldn't roll to where I knew it was going to hurt.  And now that I think about it, I think I also used a pillow between my knees for a while for extra comfort when I was laying down.  But, keep in mind, I was really underweight at the time.  It was just a comfy thing for me.  And, whenever I felt a sneeze or cough coming on, I would grab a pillow and press it against my abd to distribute pressue against the incision so it wouldn't hurt so bad.  Just my hints, for what they are worth.

You have such a positive attitude.  Keep it up.  You will be totally amazed at how much better you will feel once you get rid of that nasty CD in your body!!!

 


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 10/30/2007 5:08 PM (GMT -6)   
yes the pillow on your tummy while sneezing is a good idea!
i shoudl have said this earlier though, you will be able to sleep on your tummy after you heal though.

ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/31/2007 2:15 PM (GMT -6)   
Thanks again, each of you, for the experiences and suggestions! I can picture what you both mean, Peggy and Summerstorm, about the pillows..! :) That sounds like a good idea. Also, I never thought about sneezing--ouch!

I just received a call last night from a woman who had ileostomy surgery performed by the same doctor I plan on using. (The ostomy nurse in my surgeon's office asked if I would like to talk to someone close in age/situation about their experiences with my doc and with life in general with an ostomy--they keep a list of patients who agree to speak to future ostomates. I said sure, what the heck--so they gave her my number).

Anyway, I was out and did not get to talk to her (she left a nice message), but I think that was really cool of her to call...

I hope she has good things to say... !! :) :)

Take care everyone!
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