My Ileostomy is Tomorrow.

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dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/26/2007 11:51 AM (GMT -7)   
Well, the time is finally upon me. I still have some trepidation, but for the most part, I am looking forward to it. I have been in such pain over the last couple of weeks, and even at this moment, I have to believe that anything is better. I cannot seem to get any fix on how long I will be in the hospital post-op. I have heard as little as two and as many as five. Is that a normal range? Anyway, I have my iPod and plenty of audiobooks to listen to. Thanks in advance for your prayers.

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/26/2007 12:11 PM (GMT -7)   
Good Luck! It won't be the easiest thing you've ever done, but you WILL heal, and then you'll wonder why you didn't do it earlier!! I was in the hospital 10 days post op, but I went into my operation VERY sick, so it took awhile for me to "bounce back". My iPod saved my sanity. I could just zone out with some music. Oh, and my biggest mistake was trying to be a hero by refusing pain meds once they removed my epidural a couple days after surgery. Two days out, and I wasn't even on Codene, let alone Morphene. I wish I would've accepted some darn pain meds!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/26/2007 1:22 PM (GMT -7)   

Good Luck from me too!  Like sfgiants said, it will hurt, but once you heal, you will be so much better without those bad parts in your body sucking the lifeblood outta ya!  I can't give you an estimate of how long you'll be in - I too was a really sick puppy when I had mine done (many years ago).

One hint --  when you are offered the meds and need them, Take Them.  The time they helped me the most was right before I was gonna go "walk", esp the first couple of days.

Also if you feel a cough or sneeze coming on, grab a pillow and press it in against your belly.  It really does help.  Extra pillows on the bed are nice to stick here and there -- under your knees or behind your back when laying on your side.. you'll figure that out.  

Best of Luck to you and be sure to post and let us know how things are going as soon as you can.  We all will be thinking about you!!
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 11/26/2007 2:13 PM (GMT -7)   
Good luck to you! It's definitely an adjustment, but it's wonderful to have the pain and sickness gone from a poison organ. I was in the hospital 8 days - went in on 10/23/07 and came home on 10/30/07 - just in time to spend Halloween with my kids. Now that was a post-op challenge! -lol It's a little weird when you wake up. It took me well over 24 hours before I got up the nerve to look at the bag and a few more days before I allowed myself the "pleasure" of emptying it myself. The nurses are wonderful and so are the pain meds. Enjoy the button while you have it - the pills aren't as strong - and be sure to "dose yourself" before walking. Don't be surprised if you can't stand up straight the first few times you walk. I don't think I stood up straight for 5 or 6 days post-op and even then it wasn't all the time. Pillows are great - especially under your knees. I brought books to read but never felt like reading. My husband bought me an Ipod (in lieu of flowers) while I was in the hospital and it was great. Also, hard candies were really good. My doc had me on an ice chip and hard candy diet for about 5 days! I became addicted to Lemonheads! -lol

Remember you've been living your life around your colon and that's not living! This will be an adjustment, but a positive one compared to what you've been living with. I don't love my illie, but I'm so thankful not to be sick and in pain and in fear of being more than 10 steps from a bathroom. You'll be fine. There are many people on this forum alone that will have you in their thoughts and prayers tomorrow. Rest easy tonight and Best of Luck to You!

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 264
   Posted 11/26/2007 3:26 PM (GMT -7)   
I just want to chime in and join the group in wishing you well.  I had my Ileostomy 1 year ago after suffering for 20 years.  I wish I had done it sooner.
 
Like the others said, take the pain meds.  I was in the hospital for 10 days.  My recovery period was lengthy but I am enjoying life so much better now.  In my case, they removed the entire colon and there is no going back for me.  I did have a bout with depression but even that can be overcome. 
 
I did the right thing.  You probably are too.  Good luck.

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/26/2007 5:52 PM (GMT -7)   
One more voice to say good luck and a wishing you a quick recovery. Accept all the help available to you, including pain meds as needed, and know you are on your way to a better life. The I-Pod and audiobooks sounds like a great idea while you are recuperating. Our thoughts and prayers are with you.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/26/2007 6:13 PM (GMT -7)   
You are in my thoughts and prayers for a successful surgery and recovery. Please let us know how you're doing as soon as you get home.

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


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/26/2007 7:56 PM (GMT -7)   
Congratulations on your surgery tomorrow! I will be thinking of you and praying that all goes well. Hopefully, we will get some good news from you once you are home and in recovery!

Remember...walk, walk, walk!
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


dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/26/2007 9:47 PM (GMT -7)   
Thanks all for the encouraging comments. It makes a big difference having so much support. My wife will be posting an update on how I am doing tomorrow when she gets home to feed the animals. I look forward to the time when I can post for myself again. I will keep ;you informed.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/26/2007 9:53 PM (GMT -7)   
well i want to throw in my well wishes also! just remember it will be over soon! and you won't have to take that prep ever again! I was in there from tuesday to monday, i was supposed to go home on sunday, but i got this weird random fever and had to stay an extra day.
I hope it all goes well and i will think of you!
 
 
snaej ni tfel eht no cip


dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/27/2007 7:47 PM (GMT -7)   
Hi from his better half. It is done. The surgery when just fine, no complications. He said he has the "button" and is using it. I was surprised how alert he was when I got to his room. He was already trying to sit up and go pee. No luck but at least he is moving. He is not resting comfortably and wanted to make sure I sent a update right away. Thank you again so much for your support. It made a huge difference to both of us. Will send and update later. Thanks again.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/27/2007 8:12 PM (GMT -7)   

Please let him know we are all thinking of him.  Take good care of him and hope to hear from you soon on an update.

 


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


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 11/27/2007 9:03 PM (GMT -7)   
Glad to hear the surgery went smoothly. Keeping good wishes coming your way that he'll have a smooth recovery.

I'm going on week 5 since my surgery (Oct 22). I was in the hospital 11 days. It took awhile for my bowels to 'wake' up.

That surgery was the hardest thing I've ever done. But I knew I needed it and I'm glad I did it. He won't regret it.


((HUGS)) Kim

Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 11/28/2007 3:04 AM (GMT -7)   
Glad everthing went well, sending good wishes to both of you, Gillian.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/28/2007 5:37 PM (GMT -7)   
YAY glad it went well
 
 
snaej ni tfel eht no cip


dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/28/2007 7:06 PM (GMT -7)   
Day two. Not such a good day. A lot of pain, feel sick, and can't pee. They keep trying to put a red wood tree size catheter up him. Not a happy camper. But on the good side he did get up and walk. And he can really feel the support of all of you and your prayers. This has been so much easier for him because of that. Have an appointment with special nurse to learn how to change the bad tomorrow. I had to work part of today so will post more info tomorrow. Also don't know when he going home yet.

dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 11/29/2007 4:43 PM (GMT -7)   
Day three. Still pretty ruff, but has gotten up 2 time to walk and sat up a little today. Also gone from clear liquids to regular liquids. Still using the button and catheter. They say everything is going on schedule and may be out of the hospital by Saturday. I got my first lesson on how to change the bag. It seems easy enough, nasty but should be able to do it. Very concerned that all of his pain is not just from the surgery. We have been worried that the surgery would do nothing for his pain. I guess only time will tell. Thanks again for the support. More tomorrow.

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/29/2007 5:36 PM (GMT -7)   
Sorry to hear things are still rocky. Keep your chin up. Things might seem a little overwhelming but they will get better. Good wishes and prayers being sent your way!

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/29/2007 8:52 PM (GMT -7)   
i'm sorry to hear that things aren't going that well,but it's really soon after surgery and things will get better!
and it is nasty changing thebag at first, but you will get over that and not be grossed out after a
hope he gets to feelingbetter soon!
 
 
snaej ni tfel eht no cip


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/30/2007 4:16 PM (GMT -7)   

Hope he had a much better day today and is feeling a bit stronger each day.  It is a major surgery and an adjustment to get used to.  Keep focused on the long term....  Thinking of you both,

 


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


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/30/2007 4:50 PM (GMT -7)   
Just a note: After my surgery, I was very angry becuase I felt like the pain had not gone away. Turns out it really WAS just surgery pain, because the farther out I got from the surgery, the less pain I felt. After about two and a half months, I was finally becoming relatively pain free, just like everyone had promised. You're being so supportive, I'm sure your husband appreciates it more than he can express right now!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 11/30/2007 10:09 PM (GMT -7)   
Glad to hear he's walking. It's hard, but it really helps. I hope the pain is diminishing some. Don't be afraid of taking advantage of the pain meds. This is a big surgery and there's a reason they give you the "button." Best wishes to you both.

dandbj13
Regular Member


Date Joined Nov 2007
Total Posts : 37
   Posted 12/1/2007 8:05 PM (GMT -7)   
Major set back. Got the go ahead to go to solid foods and stop the iv and the button. But 24 hrs later almost zero out put. Threw up, shakes and much pain. Now back to square one. Back on IV, the button and sipping clear liquids. The last 2 nights have been really bad. It is most frustrating and worry some. I have not left his side except to feed the dog and cat, so I am not getting much sleep either. I understand with my mind that this is a process and have read many of your experiences, but my heart hurts for him. I don't know if he told you or not but he as been suffering almost not stop since Feb. 2007. He has had problems before but never this long or this painful. Now getting out looks to be Monday or Tuesday. Time will tell. Thank you for all your continued support. It is very encouraging to hear of your progress and successes.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/1/2007 8:20 PM (GMT -7)   

I'm so sorry he has had this set back.  Sometimes the gut isn't ready to wake up when we want it to.  I'm glad they put the IV back in to be sure that he doesn't dehydrate since he was nauseous.  I'm sending good thoughts your way... please let him know we all care.

 


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


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 12/1/2007 8:26 PM (GMT -7)   

Sorry to hear of the set-back. A lot of us have been there. You are right, however, it is a process. Unfortunately, it seems to be a two step forward one step back situation. Try to take care of yourself and don't lose heart. He is so fortunate to have you by his side and I'm sure he knows it.  We are praying for his healing and relief from pain.

Richard

 


Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

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