Soon Getting Permanent Ileo!

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/20/2009 10:09 PM (GMT -6)   
Hello!  I am new to this specific forum, as I had been chatting it up with the UC site...but after today I thought I should introduce myself to you!!!  : )
 
I met with my surgeon today and we've scheduled the colectomy for Feb. 6th...yea!!!
 
Friday I go in for additional tests regarding UC not Crohn's, and additional bloodwork...so that will be interesting.
 
Anyway, I'm just really looking forward to this surgery and getting back to how my life should be! 
 
I would love any advice or suggestions that you may have to offer!  I know nothing can really prepare for a permanent ileo, but anything that you thought was surprising or unexpected, I would love to hear about...maybe having some idea of what to expect will help me cope with the aftermath of this procedure.
 
: )  Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 1/20/2009 11:13 PM (GMT -6)   
YAY i am so happy for you! GONNA BE ALL BETTER SOON! just think only a few more weeks and you will be all better, woo hoo!

Here are a few things to remember

When you wake up you will havea clear bag on you and hte stuff that is in there is gonna be this NASTY green stuff and it is gonna smell like death warmed over. Dont worry that wont last, i promise! as soon as you start eating it will stop smelling so bad and it will change from that awful color. Then once you get home, you can put on your bags that have the cloth on them, so you wont have to look at it. I really wish someone had warned me of the green stuff, lol.

have your dr right you a script for gasx when you are in the hospital, you will probably want it after surgery and they wont give it toyou unless the dr says they can.

If you eat red things, you are not bleedign to death! the first time i ate something red velvet cake after surgery and i went to the bathroom to empy i thought i was dying! i almost woke my husband up to take me to the hosptial, we were at a convention with other nurses and EMTs and i was gonna tell him to start wakign people up, lol. Until i remebered the red food coloring and put two and two together.

Buy you some gowns of your own to take to the hospital buy them too big, i wear a medium and i bought 2x. also buy some soft pants, i did the same thing, bought them extra big.

Snake the waterproof they put under you at the hospital, it will be useful later.

When you go to the stoma nurse wear somethign that you wear all the time,that way you can be sure to get good placement.

Hmm, i cant think of anything else right now, but i am sure i will, cause ilove to talk,lol.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/21/2009 7:49 AM (GMT -6)   
summerstorm...

THANK YOU!!! Your advice has been invaluable! : )

I am really quite excited...I did purchase some super comfy sweats to wear once I'm home...I may have to dig around for things from my c-section and take those to the hospital. Can I wear huge t-shirts instead of nighty? I'm not a nighty person...when I was in the hospital for my MRSA staph infection I wore my pjs and a t-shirt...I always got comments that I looked as though I was leaving...which I was ready! However, I was also very comfortable and I did not feel as though I was in some institute.

Also, thanks for the heads up with the nasty post-discharge stuff...and for the food color issue later. I'm sure you saved me a few panic attacks!

I'm eager to hear more advice and your own personal experiences once you think of them! So keep them coming!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/21/2009 10:14 AM (GMT -6)   
i guess you could wear a tshirt, i ussually dont wear nightgowns either but i figured they would come down lower and not show my butt, lol. Thinking about it though, had a i bought a 2x tshirt it probably would have covered everythign too,lol.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/21/2009 3:25 PM (GMT -6)   
Robyn,
Welcome! :-) After surgery, you'll want to walk a lot and chew gum to help get your system moving. The sooner you get output, the sooner you can go home. In case the doctor hasn't told you yet, it can take up to 2 weeks to get output, but most people get it within a day or two. My system had to be stubborn and take 10 days! sad

Before you go to the hospital, you'll want to shave the little blonde hairs on the side of your belly where the stoma is going to be, because that will save you from the pain of having to rip them out one by one the first time you change the wafer! shocked

Also, ask the nurse for a bunch of adhesive remover wipes to use when you remove your wafer. That will also save you from being in pain the first time you have to remove it. The wafer and clear pouch they put on you after surgery are nothing like the ones you will be using when you get home. They are terrible, and so is the cheap plastic clip they use to close the pouch.

When they mark your stoma site, make sure they put it low enough so that you can still wear lower rise clothes without it showing. They should assign an ostomy nurse to help you before and after surgery. Mine was wonderful. She showed me how to change my wafer and gave me a ton of free supplies.

Bring a small pillow with you to press against your stomach after surgery. It will help ease any pain when you have to get in and out of bed.

Ask your surgeon in advance for a pain pump. That will become your best friend after surgery, because you will be able to press a button to receive pain medicine. If you don't have one, you would have to wait for a nurse to give it to you, which can sometimes take up to an hour.

A little bit of mouthwash in your pouch is an excellent and inexpensive deodorizer.

Definitely bring your cell phone and a laptop, so you can call and email family and friends.

Last, but not least, bring a pair of eye shades. They come in handy for daytime naps and when they flip on the lights in the middle of the night!

Everything is going to be great, and remember, you'll soon be UC free for life!! turn

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/21/2009 5:15 PM (GMT -6)   
oh and take lotion and lip gloss or chapstick
you may also want to take some alohcol wipes or some antibactireal (that is spelled so badly, lol) wipes cause you wont be able to get up and wash your hands alot, i also (don't laugh) always like to clean the bed rails and remotes and stuff like that. Hospitals are NASTY!!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/21/2009 7:02 PM (GMT -6)   
Hey Girls! Great advice Summer and Cece! I can't think of anything else at the moment. I think ya'll have covered it all. The only thing that I can reiterate is the Walking after surgery. It will hurt like crazy, but every step you take is 1 step closer to going home, really. The pillow is a great idea too. Used an extra bed pillow provided by the hospital (suggested by my surgeon) at the time, it was my best friend while I was there. Especially if you have to do any deep breathing or coughing or, heaven forbid, Sneeze. You'll like that pillow. I also liked to have hard candy, like butterscotch or rootbeer, to suck on (once allowed). Helps your mouth from feeling so dry from the pain drugs.

We'll keep chiming in as we think of stuff. Welcome aboard! We are all a pretty friendly group here. Be sure to ask anything you think of. We are pretty honest and caring. Best of luck to you and keep a positive attitude.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/22/2009 1:23 PM (GMT -6)   
Welcome RobinByrd!!

slip on slippers...I buy the ones I can wash because EVERYTHING I bring to/from the hospital goes in the washer with BLEACH!!!

They've given some great suggestions already...do you have any questions?!

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/22/2009 2:32 PM (GMT -6)   
this is so helpful as I facing the same in a month--these answers and anecdotes are great--PLEASE keep them coming. I'm taking notes.

what is the green stuff in the bag? Bile?

can I bring my own gum and hard candies?

and where can I expect to meet an ostomy nurse--from my surgeon's office or at the hospital.
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/22/2009 2:55 PM (GMT -6)   
Yes on the hard candies and gum.

I'll let others answer the rest --- it's been too long ago for me to know when you will meet your ET. Also, I don't know why you couldn't request to meet with one earlier and also request some sample appliances to try on for placement bEFORE your surgery. Someone posted this before and I never had that as an option since my surgery ended up being an emergency situation. I think this is a great idea, then you know where a good place is so you can wear all your favorite clothes/styles.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/22/2009 6:38 PM (GMT -6)   

I met with an ET Nurse before my surgery...she was great and marked my spot with a tattoo!!!  She answered some questions, but it wasn't planned for me to have an ileo, it was a "just in case" situation that became reality!

My surgeon set up my appointment, so if yours doesn't offer, ask for an appointment...get a chance to look at the products...

As far as the green stuff, yes it is bile, and it does get better after you start eating.  I still see it pass if I haven't eaten for a really long time (not something a try to do...).

My nurses always pushed popsicles...so if you are allowed ice chips you should be able to eat them:)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/22/2009 6:49 PM (GMT -6)   

Ditto that on the hard candies and gum. Butterscotch was my favorite.  smilewinkgrin

You can also bring in your own chewable Gas-X tablets, in case your doctor doesn't order a script for some. They will come in handy when the gas pain strikes. For me, trapped gas was the most pain I remember feeling after surgery.

Definitely bring your own comfy PJ's and slippers, since you will be walking the halls a lot after surgery.

I met my ostomy nurse in the hospital. She had an office on the same floor that I was on, so I saw her every day until I was discharged.

Bring some magazines, too. That was about all I could handle when it came to reading material.


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/22/2009 7:17 PM (GMT -6)   
You guys are so amazing! Thank you for your advice and suggestions! I've had hospital stays for my c-section and then the MRSA infection (which was an emergency admittance), but this hospitalization will be a little different. : )

Does it sound silly to say that I'm excited?! B/c tomorrow it will be two weeks and I'm cured of UC! What?! Cured?! Really?! I am just beside myself with happiness. Wow!!!

I'm really going to be ready to get this sucker and pucker (hhahhahahhaa!) out b/c I'm decreasing my Prednisone prior to surgery to hopefully make it to 10 or 5mg and I'm already feeling the effects...yuck. I really want to have a big Mexican dinner the day before my prep begins for the surgery. I just hope I can make it!!! : ) Knowing that I'm going to be cleansing my body in such a rapid way, I'm eating whatever I want the day before!!! SPICES!!! Lettuce!!! Cheeses!!!! YUMMY!!!!

I just can't wait to get back to my life...I feel that I've been co-pilot and watching the disease take control and steer me into all kinds of crazy situations.

I love that you guys are willing to share your experiences and things I should take with me...I need to start a list like I did for when we had our son. : ) I love lists...so I'm excited about getting to make another one. : ) I have OCD...it's not obvious is it? : )

Anyway, thanks again! Keep the suggestions coming!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/23/2009 2:26 PM (GMT -6)   

I'm so glad you're excited to be UC-free!! yeah

You have such a positive attitude and are going to sail right through this.

I love the idea of eating Mexican! Add extra beans, and you'll get a head start on the prep! smilewinkgrin


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/23/2009 7:47 PM (GMT -6)   
Don't forget get an IPod or MP3 player...I used mine all night to sleep.

crazybirdman
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 1/29/2009 10:14 PM (GMT -6)   
Computer computer computer and I had MRSA last sept. just popedup on my elbow mean mean infection and you should tell your doctor that you have had MRSA before you go outto lala land.
Feb 6 is my dads birthday and that is a good day.tomarrow is a good day to because that is my day wish me luck Troy

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/1/2009 10:14 AM (GMT -6)   
I wanted to bump this back up, since this is a good thread for anyone who is having surgery soon.



Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

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