Ileostomy tomorrow

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supernova
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Date Joined Jul 2006
Total Posts : 69
   Posted 2/28/2011 10:23 AM (GMT -6)   
So, the big day is tomorrow. I am slightly scared.. who I am I kidding, I am petrified! Definately not looking forward to the prep today. More so, I am not looking forward to waking up from anestheia tomorrow and seeing the new part of me tomorrow. How bad is it really.. seeing the stoma for the first time??
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 2/28/2011 11:13 AM (GMT -6)   
Supernova, I had my iliostomy at 26, (36 now)and remember seeing that knew part of my body,, yes..but afterbeing in diapers for so long I was greatful, I had lost all spxinter control, is that why they are doing yours? If so it is a relief, nothing changed have a long time relationship, he does not mind, no one can ever tell I have one..all in all it has givin me my life back. I can actually leave the house now where I could not before.  Good luck! And keep your chin up, not as bad as you think it is.
 
 
Crohns desease
Interstistial cystitis
chronic Pain
Depression
several surgeries to repair fistulas after childbirth
Pelvic adhesions
Surgery last week, hystrectomy
 

Post Edited (ljb) : 2/28/2011 9:18:48 AM (GMT-7)


ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 2/28/2011 11:56 AM (GMT -6)   
It wasnt much of a shock to me as i knew i was having it done,if it was an emergency then i think i would of been worse BUT it definately takes time to adapt so give yourself time to get your head round it. Its been nearly 4 months since my op and things are great,i have absolutely no regrets and i too have my life back.
Good luck with your surgery and your recovery.
leyton

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 2/28/2011 12:10 PM (GMT -6)   
I will be thinking of you as you head to surgery tomorrow. I was worried the day before too! And I hated the prep... though it was not nearly as bad as preps I had done before when I was already in pain and in a flare. I loved knowing that it would be my last one ever!

As the time of surgery got closer and closer, a peaceful feeling came over me. I knew I had put a lot of research into my decision, loved the surgeon I had been referred to, and knew that the alternatives to surgery-- being sick with UC or living with the painful side effects of the drugs-- were not acceptable to me. Still, the drive to the hospital was strange... I was actually a little excited that I had finally reached this moment after all the anxiety of making the decision and the hard times of being sick. However, my stomach was also full of butterflies. I knew there was so much new territory ahead! Each minute on the clock that passed, each mile we drove, each step up to the hospital door got me closer and closer to the unknown. But once I got into pre-op, I began to feel a lot more confident again. The hospital staff was so wonderful. The pre-op nurses got me all ready... did the necessary blood tests, set up the IV etc. The anesthesiologist came and talked to me and she was incredibly caring and nice (she even visited me in my room two days after the operation!). Another surgeon came in (who would be assisting my surgeon with the procedure) and discussed the operation with me. He was great too. Finally, my main surgeon came and sad at my bedside and answered all my last minute questions. He was amazingly compassionate, and I silently thanked my GI in my head for referring me to him. He really settled my nerves and as we were chatting, this beautiful feeling of peace came over me. I knew that I trusted these folks. They were there to help me through this and I had the ultimate confidence in them. With that, I finally relaxed and completely surrendered to the experience. I gave my husband one last hug and kiss and knowing that he would be out in the waiting room the whole time comforted me. The anesthesiologist gave me some meds to relax me even more, and then I was wheeled down the hall to the operating room. That is the last thing I remember before waking up again in post-op after the surgery. There I was pretty groggy. I believe the staff came and talked to me, but I actually can't remember much. Once I woke up and became more alert, I finally was taken up to my room. My husband met me there and told me how my operation went as he could actually remember talking to the surgeon afterwards:) My surgeon also came in a few hours later to talk. Everything went smoothly with my surgery except that they couldn't get the epidural that they had hoped to use to take, and had abandoned the attempt in favor of other pain control options.

When I first saw my stoma, it was kinda surreal but I definitely did not have an aversion too it. I actually approached it pretty logically. I had thought about the surgery a lot, knew that it was coming and was actually relieved that it looked like a nice, healthy stoma (from what I could tell through the clear pouch:). In some ways, I had trouble even focusing on it as it was sort of mixed in with all these other crazy things on my belly... bandages and staples down my stomach, tubes coming out of my abdomen and a catheter. The stoma also wasn't doing much at first. After a day or so, I looked at it more and more and became quite curious about the new addition to my body. It wiggled and made noises and started to create output perfectly which allowed me to eat. At first the nurses were emptying my pouch, but after a few times I began to do it myself and found that, with a little practice, it was easy. Finally, the ET nurse came to teach me how to change the pouch. We took it off and I finally got to see my stoma up close. It was fairly large from the swelling, but looked great. The next three nights, the nurse came up and I practiced doing my pouch on my own. And then it was time to go home.

I get more and more used to my stoma every day. Sometimes I still think "Wow! My intestine is sticking out of my belly!" But I think it is pretty cool and am amazed at how it has given me my life back.

Good luck with your surgery. You will do great and I look forward to hearing how it goes!
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/28/2011 12:29 PM (GMT -6)   
I will be praying for you! Last prep ever!!!

I really didn't look closely at my stoma for a couple weeks. I tried to avoid looking at it. Then one day I was ready and it really wasn't that bad. The nurses will help you empty at first...in fact I had to tell them that I wanted to start doing it myself so don't worry you won't have to go this alone.

Good luck! Let us know how it is going.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/28/2011 12:30 PM (GMT -6)   
Ooohhh...don't forget you will be disease free tomorrow!!!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/28/2011 12:32 PM (GMT -6)   
     Good luck tomorrow!  Geez, after reading so many posts, I have to ask myself these  questions.....Do I have the only surgeon who didn't require a prep before the total colectomy with end ileo?  Only clear fluids the day before?  Is he the only one who doesn't sew the anus closed? 
     I'm still alive and feeling well, so I guess that is all that matters..lol.

bellypooper
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/28/2011 1:31 PM (GMT -6)   
wishing you well on your surgery tomarow and to a speedy recoverie.
living with a stoma is not all bad.some times it's quite convevant.don't have to run to the bathroom. once you get a system in place,all will be good and you will have your life back.
will be thinking of you tomarow
think positive, live life to the fullest!!!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 2/28/2011 2:14 PM (GMT -6)   
wish you the best tomorrow - i remember on the day i went in to hosp, i could hardly believe i was about to agree to the exact thing i had been dreading/ refusing for many years, but it was all going to happen !! i was oddly calm, even joking with the nurse while waiting for the anesthetic - i had come to the conclusion that i was the only one who was doin this for the first time - the nurses, docs, surgeons had all done it before and knew how i would get thru the next few days & weeks - sure being scared is natural but it this site is anythging to go by, there is a better life without sickness after the op.

i also had no prep to do which was a huge relief

am rootin for ye
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/28/2011 2:17 PM (GMT -6)   
Thank you everyone for such great support and prayers. Reading your posts has brought tears to my eyes, in being reassured once again that I am not alone. On a personal level you are strangers to me, but emotionally I have found new friends in all of you. May God bless you all for generously telling your stories and bringing comfort to others going through a tramatic time in their lives. As I enter into surgery tomorrow I will take with me the comforting words that have been given to me. 
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 2/28/2011 2:22 PM (GMT -6)   
just to add - being a fairly practical type, i decided to take a good look at the stoma thru the clear bag as soon as i could - my reason was that this would be it lookin its worst & it would get better lookin as time went on - its didnt look too bad on the day & while it wont win any prizes today, it settled down & i would'nt ashamed for any one seeing it now.

happily my girlfriend on many years, treats the bag the same as if i was having to wear a cast of my leg - it doesnt change the person - shes just glad that the restrictions of the past are over

again - sending you positive vibes
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/28/2011 2:36 PM (GMT -6)   
best of luck to you tomorrow!! i liked my stoma the minute i saw it. it does take time to get used to and all, but i knew that that's the only way to gain my life back and so happy i had the surgery. when you see how good you feel and how better life is when you're disease free, you'll be able to appreciate it and it's advantages! keeping you in my prayers!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 2/28/2011 6:27 PM (GMT -6)   
I remember after my first operation to create a loop ileo, I was 20 yo. Had just got home after 4 days in hospital and was changing the bag quite happily. Suddenly the stoma started wriggling and really flattened itself against the skin and I started panicking and didn't even dare breath as thought somehow the stitches had broken and it was going to pull back inside. No one had told me that the stoma wriggles in and out as the bowel moves and it had been pretty still up to that point. Took me 20 mins before I dared to move again, once I got over the shock felt pretty stupid! lol

When I came round from operation, first thing I did was look at stoma. Have to say through the bag and drug addled view it looked kinder cute, like a squashed strawberry. We've been through a lot together and whilst at times I could quite happily strangle it when it's misbehaving I wouldn't be without it. The sooner you manage to change bag yourself the better, nurse showed me once and next time I did it whilst she supervised. Gave me a lot of confidence quickly, just wish she had told me about the stoma wriggling!
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/28/2011 7:03 PM (GMT -6)   
Best of luck tomorrow. J & I will be praying for you.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/28/2011 7:57 PM (GMT -6)   
good luck tomorrow! no more prep ever, yay! personally i thought that was enough reason to get surgery, lol.

Honestly, when i first woke up and saw my bag and stoma and all i was like OMG what have i done???? However my first thought was, omg i'm finally healthy, then what have i done, then wow this hurts, give me meds!
But it was surprising to me because i didn't know it was going to be a clear bag and i didn't know that the output would be that swampy green stuff. And i thought that was gonna be it forever! however, the feeling of being clean and healthy far outweighed that fear.
and it is weird to see all those tubes and staples and bandages and stuff, and i cannot stand to look at staples or stiches they are so disgusting to me, so i kept my staples covered with gauze the whole time!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/28/2011 9:11 PM (GMT -6)   
Best of luck. 9 weeks ago for hubby and he is enjoying life and has adjusted very well. Once you get over the initial surgical discomfort and the various tubes come out you will fully realize and embrace your newfound "pain-free" "urgency-free"situation.

Of course there is a learning curve on which manufacturer's products you prefer. We are still experimenting somewhat but I am sure it won't take too long to find the best product for him. He likes what he is using currently but we will try others too.
64 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) and no longer in pain.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 2/28/2011 9:44 PM (GMT -6)   
I can't answer your question as I haven't had any surgery (yet?) but I will be thinking of you tomorrow, too. I also agree that the people here are invaluable as one moves through this journey. I hope you have as smooth a time as possible tomorrow and recover quickly. :-)
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/28/2011 10:17 PM (GMT -6)   
Big (((hugs))) for tomorrow...you'll be drugged up when you see it for the first time, so it will take some of the edge off!

Look when you are ready. The nurses should take care of emptying/changing in the beginning but when you feel comfortable they won't mind if you are 'self care' scool

Don't forget to WALK and when you cannot walk anymore...walk some more! It gets the body moving and helps with recovery yeah

And...like everyone has said: this is your LAST prep smilewinkgrin
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Post Edited (OHIO76) : 2/28/2011 8:21:12 PM (GMT-7)


CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 2/28/2011 10:45 PM (GMT -6)   
 
Best of luck to you, tomorrow.  
 
My permanent ileostomy surgery should be sometime in late June, and I am so ready.  
 
I will be looking for advice from all of you who have gone before me.  I am so thankful for this board.  I have spent hours and hours here searching the archives and have found lots of good information & tips already.
 

Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 3/1/2011 12:28 AM (GMT -6)   
Best of luck to you tomorrow. Hope you have a very speedy recovery.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 3/1/2011 3:48 AM (GMT -6)   
supernova:

God Bless you and may you sleep well.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/1/2011 8:05 AM (GMT -6)   
Good Luck today!!!!!!!!!!!!!
64 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) and no longer in pain.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 3/1/2011 10:59 AM (GMT -6)   
Sending out good thoughts to you today and wishes for a speedy recovery and adjustment. You're about to get your life back!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 3/1/2011 8:41 PM (GMT -6)   
I hope it all went well!! Cheers to a new healthy you!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery scheduled 3/21/11

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/1/2011 10:35 PM (GMT -6)   
I hope the day went well.....now for a speedy recovery
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS
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