Ileostomy here I come

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CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/2/2007 4:05 PM (GMT -7)   
Hi I am having surgery this June 7th at the cleveland clinic. I am having the permanent ileostomy surgery.
I am hoping things will be as easy as everyones posts Ive read. Im 36 yrs old and have Crohns since 1992.
Im very happy to have found this site, since getting my surgery news Ive been getting cramped fingers trying to find a group.
 
~Stephie~

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 6/3/2007 4:44 AM (GMT -7)   
Hello Stephie and welcome :-)

Not long to go then before your surgery. Before long you will be back here telling us how much better you feel. I wish you all the best for the 7th.

I have an Ileostomy due to UC. I have had mine over 4 years now and life is so much better for me.

Sue


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 6/3/2007 10:23 PM (GMT -7)   

I agree that you will do fine.  I remember the day I took all my meds and put them in large baggies and gave them to a freind.  I still keep the prednisone in case I get poison ivy.  I am a year and 1/2 into my ileostomy life now.  I am turning 56 this summer so I was older when I had my surgery, and I just took it slow as far as the recovery.  I relaxed and was a good patient.  I needed to take imodium for slowing down the output for a year, and now just take it when needed.  Best to you on the 7th.

Hopeso


 


CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/4/2007 3:25 AM (GMT -7)   

Thanks Sue & Hopeso, This really is a great group! I hope I'm feeling better sooner than later so I can can get right back here :-)

 

~Stephie~


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/4/2007 11:42 AM (GMT -7)   
GOOD LUCK! I hope it will go easily for you!
I had mine done on April 17th, and after the recovery, which really wasn't too bad, everything is great now! I even forget I have it sometimes. I remeber when I get to do something I never would have gotten to do before though, like go out to eat without worrying, and going to the mountains tomorrow.
It will be great for you!

Michelle578
New Member


Date Joined Jun 2007
Total Posts : 15
   Posted 6/4/2007 12:26 PM (GMT -7)   

stephie,

I want to say good luck.  I have had my ileostomy for 6 years and I was so sick before I had surgery.  The quality of my life is 10 x's better.  If you ever have any questions feel free to ask.  I am 29 years old and have had crohns disease/colitis since I was 13.  I have been on every med known to man and have done the whole remicade thing and nothing worked for me.  I had an ileostomy when i was 18 and had it reversed to only get sick again and had it done permanetly.  I have never felt so good.  I did have a flare up this past january, with crohns it isn't curable but my flare up was mild compared to what it was before.  Good luck!


Crohn's Disease for 15 years
Currently no meds...
I have an ileostomy and it is the only thing that made the quality of my life better...


CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/5/2007 6:49 AM (GMT -7)   
Thanks everyone, I go today to talk to a stoma nurse and some admitting office, Im going easy on food today just so my prep tommarow isnt so you-know LOL
I am going into the surgery feeling really well. I am very suprised that my cat-scan showed as much active disease going on, I havent felt it at all. The reason for the catscan was a fistula that had gone to the girly parts *sigh* OK I actually said that out loud, well typed outloud anyway. I went online and searched free ostomy supplies and found tons of medical suppliers willing to send bag samples, so I have quite a few packages on their way.

Thank you for having me in your thoughts.
Having been where I am now, You do know how much it means to have somewhere and someone to talk about this.
Thank you

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/7/2007 12:33 PM (GMT -7)   
Camping Girl, I hope all went well! I had to post and say LOL at you saying "girly parts" that's what I always say and my Mom and husband (he's a nurse) make fun of me for saying that !
The prep isn't fun, but ask for the pills, they are SO much better than that drinking stuff!

nursy2
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 6/7/2007 10:51 PM (GMT -7)   
Wishing you best wishes for your surgery and hope everything goes well for you..take care..
As you all say the 'prep' is by far the worst part,i still can't drink anything tasting of lemon,or even tolerate some cleaning products,as the smell brings it all back to me(yuch)..
Best wishes<<nursy2 :-)


I have recently had a ileostomy,and in the past i have had my left kidney removed due to reflux from my urator,although it was re-implanted numerous times,it lead to continual infection.
I have also had a cystoplasty(using bowel)and at the moment this is causing problems due to the mucus..I am having treatment for bladder washouts
nursy2


CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/15/2007 4:33 PM (GMT -7)   
Hey everyone,
My surgery went good, I went in Thurs June 7th and came home Wednesday June 13th.
Everything went well they said. I guess I had alot of disease going on but took that all out. My bottom is really sore too, they had to remove my rectum and anus. Im doing OK with the bag, cant say I like the clear ones, cant imagine who would. I am also hoping my pain meds outlast the pain but from the way my script bottle looks.............hmmmmm.
The bag the hospital gave me were Hollister 8531 and has a lock and roll bottom, I like that.
 
Oh for those who asked about my prep, I did the Fleets phososoda and mixed it with apple pear grape juice, OMG  soooooooo vile and to be honest I couldnt finish the 2nd bottles worth but I really scaled my foods down and did clear liquids 2 days prior also. I cleared out pretty quick then too.
 
Thanks for everyones support and friendship, I'll keep popping in and when my hiney lets me sit at the 'puter more then I will post more.
 
~Stephie~
 

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/15/2007 10:48 PM (GMT -7)   
CampingGrl-Welcome to the "club" and welcome to your new (and improved) life!!!! It will only get better from now on. 'Glad to hear everything went well with the surgery. BTW, I've had an ostomy for 18 years and only use opaque pouches. There's a lot of choices out there when it comes to appiances. The ostomy supply companies are more than happy to send you a few samples of different types for free.

nursy2
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 6/16/2007 12:00 AM (GMT -7)   
:-)  Hello camping girl,so pleased to hear you are home again,and hopefully your recovery will go well..
Take things easy you have been through a lot,and you are a star.
Best wishes for a healthier and pain free future..
..nursy2..
I have recently had a ileostomy,and in the past i have had my left kidney removed due to reflux from my urator,although it was re-implanted numerous times,it lead to continual infection.
I have also had a cystoplasty(using bowel)and at the moment this is causing problems due to the mucus..I am having treatment for bladder washouts
nursy2


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/16/2007 8:03 PM (GMT -7)   
I'm glad everything went well! My bottom hurt forever too, lol. It seemed worse than my tummy! Those clear bags are awful, I use the hollister lock and roll ones too, they are a different number than yours but I like them too.

blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 6/17/2007 3:13 AM (GMT -7)   
Congratulations!
I am so happy for you I love to read about good outcomes. I hope the bottom pain goes away soon. My surgery is Tuesday and I hope mine turns out great like yours.
Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Prednisone 60 mg (currently tapering)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 6/26/2007 4:02 PM (GMT -7)   
i posted to you earlier, but wanted to say congrats on your succesful surgery......

Brokenagain
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/28/2013 5:43 AM (GMT -7)   
I got my Ileostomy August 2012. I have had my ups and downs with this thing. To top everything off, I had a Gastric Bypass on Dec. 7 2000. I have had more surgeries than I can to count. I was misdiagnosed for years. I was born with "Hirschsprung's disease" I would not wish this on my worst enemy. My thing is that having the Gastric no this thing on my side. I am miserable. I would love to know how to have a normal life. I have to empty this bag every couple of house, of not more often than that. And to have diarrhea is horrible. I have had it all weekend, ended up at the hospital to get an IV to get my fluids back you. Any advice from people that live with this everyday. People around me just do not understand what I am feeling. I am fixing to turn 54, and nothing,, and I mean nothing interest me, All I want to do is pull the cover over my head. Any advice will be greatly appreciated.. Thanks, JoJo1

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/28/2013 10:29 AM (GMT -7)   
Good Luck Stephie and welcome as well.
Wife of 65 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

edithmbooth
New Member


Date Joined Jul 2013
Total Posts : 11
   Posted 10/7/2013 6:47 PM (GMT -7)   
Well it is my turn - sub total colectomy (UC) scheduled for the 18th. Tried them all, nothing helps.... Imuran...Remicaide....the only thing that works is prednisone...right now on 40 mg for the next 2 weeks - just came out of hospital after 4th major flare inthe past 12 months.....
So, perm ileostomy for me.....will keep in mind the possibility of JPouch but have not heard very good things about them.....will do more study and then decide if all should come out or if it will be the JPouch route.
I have has an emerg C section in the past so they are not sure if they will be able to perform this laproscopically....keeping my fingers crossed!

See you all in a couple of weeks!! yeah

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 10/8/2013 9:16 AM (GMT -7)   
Welcome and good luck Edith
 

sadlers8
New Member


Date Joined Jan 2014
Total Posts : 2
   Posted 1/11/2014 7:10 AM (GMT -7)   
Brokenagain said...
I got my Ileostomy August 2012. I have had my ups and downs with this thing. To top everything off, I had a Gastric Bypass on Dec. 7 2000. I have had more surgeries than I can to count. I was misdiagnosed for years. I was born with "Hirschsprung's disease" I would not wish this on my worst enemy. My thing is that having the Gastric no this thing on my side. I am miserable. I would love to know how to have a normal life. I have to empty this bag every couple of house, of not more often than that. And to have diarrhea is horrible. I have had it all weekend, ended up at the hospital to get an IV to get my fluids back you. Any advice from people that live with this everyday. People around me just do not understand what I am feeling. I am fixing to turn 54, and nothing,, and I mean nothing interest me, All I want to do is pull the cover over my head. Any advice will be greatly appreciated.. Thanks, JoJo1


I had mine in Oct have good and bad days , it sucks for sure, am going to my nurse to talk about reversal I am 58 year old woman who had emergency surgery for perforated colon and they sent me home with this bag! It did save my life tho, but every day is a battle , nights are the worst! I feel like a freak, take care, chin up, ab
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