About to become an ostomate....

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earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 2/11/2006 9:14 PM (GMT -7)   
Hello!
 
I am just a few weeks away from having surgery in order to rid myself of ulcerative colitis once and for all!  I am feeling very apprehensive about the surgery but I know it deep down it is the right decision to make.  I am 24 and have been fighting the disease for almost 8 years...the last two of which have been a constant roller coaster of prednisone and imuran...and to no avail!  So I have decided that I refuse to be miserable any longer and am going to have the surgery.  Not enirely sure whether it will be a colostomy or an ileostomy...am meeting with the surgeon this week.  Does anyone have any advice for me?  I have heard many things about eventually having the surgery reversed....I would appreciate any advice!

Post Edited (earthgirl) : 2/22/2006 3:48:14 PM (GMT-7)


Shaz032
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Date Joined Feb 2003
Total Posts : 1250
   Posted 2/11/2006 11:04 PM (GMT -7)   
With Ulcerative Colitis, all of your large intestine will be removed which means you will have an ileostomy. If they leave any in, the UC will just come back and attack that part.

You may be given the option of a J Pouch (an internal pouch where you don't need a bag and go to the loo via your rectum and anus). This is usually done in one (if you're extremely healthy), two (the norm) or three (if you're not very well at all) operations.

With the first op, your j pouch will be formed internally (from your small intestines) and you will be given a temporary ileostomy in the meantime while it heals. Later on, you'll have your takedown where the ileostomy is removed and you start to use your internal pouch. Note: that because temporary ileos are placed higher up in the small intestine, their output tends to be more watery than permanent or end ileos. They are also a bit harder to look after because of this.

If you decide to keep your ileostomy, know that life is VERY liveable (I've had mine for 30 years due to UC). A lot of people decide not to opt for the j pouch and just keep their ileostomy.

After the op, you'll be a little sore. When you need to cough, try hugging a pillow against your tummy. It helps :)

Good luck and if you have any specific questions, feel free to ask.

david r
New Member


Date Joined Feb 2006
Total Posts : 1
   Posted 2/12/2006 6:40 AM (GMT -7)   
try not to worry to much. you will definitely have a better quality of life after the surgery. I had a colostomy in sept. 99 and tho it took some time (and group therapy ) my health and quality of life is much better. Good luck and God (or whoever your higher power is)bless.

earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 2/21/2006 10:48 AM (GMT -7)   
Thanks for your comments,
 
Skinsfan, I actually have Ulcerative Colitis and not Crohns so the possibility of it coming back once I have the surgery is slim to none...that is about the only good part of this whole ordeal!  I will definitely listen to whatever advice my surgeon gives me, she is very experienced in this field and I have complete faith in her decisions.  It is a comforting feeling going into such a life-changing surgery.  It is just three weeks away now and I am definitely nervous, but I'm going to go in there with a positive attitude as I am excited about how my life will be after the recovery period is over.
 
:-)  earthgirl :-)

Shaz032
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Date Joined Feb 2003
Total Posts : 1250
   Posted 2/21/2006 9:29 PM (GMT -7)   
Skinsfan1229 said...
Shaz032 is not necessarily right at all. There is nothing to say it will come back in the part they've left behind. And odds are if there is a part that isnt infected and its a good portion they will not take it. I have Crohns disease and and illiostomy.
I was actually talking about UC and not Crohns disease. With UC, the entire large intestine is always removed because chances are that the UC will come back and strike at any remaining large intestine, therefore it's always removed entirely. With Crohns Disease, this doesn't necessarily happen which is why some CD people get a colostomy while others have an ileostomy.
 
Also If you have disease in your rectum...there is no way they will go for a J pouch, becuase as shaz032 has said, if it comes back it will be in your rectum. said...
(replace this text with what was said)
Umm... I actually didn't say this :)  With a j pouch, they can scrape the rectal lining out and rid it of the UC that way enough so a j pouch should be fine for the majority of people with disease in the rectum. There can be inflammation of the rectal cuff area but, for the majority of people with UC and a j pouch, it can be cleared up with the use of antibiotics and/or other meds.
Hope this clears it up :)

I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

Post Edited (Shaz032) : 2/21/2006 9:36:48 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17497
   Posted 2/22/2006 1:15 PM (GMT -7)   
     I've had my ileostomy for 16 years and it's the best thing I did for myself.  I have Crohn's disease so my entire colon was removed, along with my rectum.  I don't have Crohn's in the ileum or anywhere else for that matter.  I've been blessed because I haven't had any problem with the Crohn's disease since my surgery!
     I believe Shaz is correct in that they take your entire colon out with UC.  What's the point of going through the surgery if you can continue to get sick!  Once your colon is removed, you won't have any more problem with UC.  That's not necessarily true with Crohn's disease, since it affects any place in the digestive system.  UC is located only in the colon, I believe. 
     An ileostomy will not stop you from doing most anything.  You shouldn't lift anything heavy and be sure to hold on to your abdomen if you cough.  No one told me this and now I have a parastomal hernia...no fun.  I swim daily, travel around the world, snorkle, and parasail with my ileostomy.  So, life will be very good once again for you!
     If you have any question after your surgery, the people on this site are ready to help.  Best of luck and best of health!
 
Sherrine

earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 2/22/2006 1:39 PM (GMT -7)   
Thanks so much for all of your comments! I am feeling better and better about my decision and I am going to go into this surgery with a positive attitude.  It is nice to speak with people who have been there and done it already....feeling educated and aware about what I'm going to go through has really helped ease my nerves about everything.
 
Earthgirl :-)

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17497
   Posted 2/22/2006 2:08 PM (GMT -7)   

     Oh, Earthgirl, I have shared this before but I think it's so profound.  I was frightened about my ileostomy surgery too and a friend knew of a person who had an ileostomy and was willing to share her experiences.  She had absolutely no problem at all either.  After about an hour on the phone with her, she said that her stoma was located a little lower than mine would be because it interferred with the strap on her artificial leg!!!!  Talk about putting things in perspective for me! 

Sherrine


Westcoast Joe
Regular Member


Date Joined Apr 2005
Total Posts : 130
   Posted 2/22/2006 3:40 PM (GMT -7)   
Shaz is 100% right on the UC and total colon removal. My Doc told me there was a 2% chance I could have Crohns. 98% chance its UC and I have not felt this good for years. I'm still tired on occasion , but I'm only 3 months removed from surgery and I play hard. You should write down all the terrible things you are going through right now , so you can appreciate how great it is after the operation. WESTY

lifebegins
Regular Member


Date Joined Jan 2006
Total Posts : 72
   Posted 3/1/2006 10:09 AM (GMT -7)   

Hi earthgirl

I have also been there, done that, and worn the t-shirt as they say. I had UC for 3 years and it was out of control. Last April I had the ileostomy op (Large bowel removed as shaz has explained) and external bag fitted.

Then 3 weeks ago I went back into hosp and had the bag removed. Now my life is back to how it was before I ever had UC, (apart from a few scars which im very proud of). You wouldn't be human if you werent scared (I was petrified). Hang on in there, I promise you its the best thing you will ever do.

Im here to answer any questions regarding both ops. Lifebegins :-)
Had UC 2002 - 2005
Meds: Prednisolone, azathiaprine, asacol, fosamax, predsol suppositories, asacol suppositories, predfoam, painkillers, aloe vera juice, special diet ect.
Whole colon diseased, annemia, dhydrated, weight loss ect.
Had 1st operation April 2005, 2nd operation February 2006.
Feel great, aged 29, married,want children now.
Everthing that is crossed out no longer applies to me thanks to the operations.


earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 3/1/2006 8:03 PM (GMT -7)   

Thanks so much for your words of encouragement, they have really helped to ease my fears!  :-) I know I am making the right decision and I'm sure adapting to my ileostomy will be a lot easier than coping with UC for the past 8 years!  I am excited to have my life back as I am only 24 and am tired of putting my life on hold waiting to get better.  I have heard many different stories about the second surgery and pouchitis and the possibility of frequent trips to the washroom again so I'm unsure what my next step will be.  I know that I will have the option of a j-pouch 6-12 months down the road, but I am also going to enquire about whether I'd be a candidate for a BCIR because it seems to have the possbility of less complications.  Next week I will meet my ET nurse for the first time and hopefully she will be able to answer some of my questions.  Then on the 13th I go in for the surgery...I have been so sick the past few weeks that I am just counting down the days!

Earthgirl :-)


lifebegins
Regular Member


Date Joined Jan 2006
Total Posts : 72
   Posted 3/2/2006 5:35 AM (GMT -7)   

earthgirl

Dont worry about all the things that could happen after the op. Pouchitus and going to the loo more frequently are only 2 of many possible things that could happen. Im certainly not trying to frighten you, but you will be told of many other complications. This is a conversation that everyone facing the surgery will receive from the hospital nurses. They have to tell you in order to cover their own backs so that you cant say you werent warned. When you ask what are the chances of any problems occuring you will be pleased to hear very little. Most of the problems that can occur are dealt with by antibiotics (nothing nasty).

Your young (I was 28 when I had the first op) and I am sure you will be perfectly fine. I will be thinking of you on the 13th. Please let us all no how you are when you get home.

Lifebegins  :-) :-) :-) :-)


Had UC 2002 - 2005
Meds: Prednisolone, azathiaprine, asacol, fosamax, predsol suppositories, asacol suppositories, predfoam, painkillers, aloe vera juice, special diet ect.
Whole colon diseased, annemia, dhydrated, weight loss ect.
Had 1st operation April 2005, 2nd operation February 2006.
Feel great, aged 29, married,want children now.
Everthing that is crossed out no longer applies to me thanks to the operations.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17497
   Posted 3/2/2006 2:29 PM (GMT -7)   
     Earthgirl, you are young and will probably bounce right back to good health quickly.  Yes, there are always possibilities of complications but I know I didn't have any.  I was 42 when I had my surgery.  Three days after I was released from the hospital, I went Christmas shopping at the mall for six hours...with 89 staples in me!  I felt sooo much better after surgery than before surgery.  I feel confident that you will do just fine and you will be happy about your decision.
 
Sherrine
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