New, 99% sure having total colectomy, and just want some general info...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 9:10 PM (GMT -6)   
First, if you saw my other post and responded..thank you. After that post, I had a nice long hard cry with my husband and my parents and came to quick conclusion that after months of agonizing over this decision, it was time. Then, I came back to that post and it solidified my decision.

I'm sure my surgeon will answer my ostomy questions when I meet with him, so I'll hold that off until I have questions from there.

But, they have told me I'll be in the hospital for 3-10 days, but not to be surprised if I end up in there for 2-3 weeks (I have a horrible tendency to end up in the small % of possibilities).

I've NEVER been in the hospital and admitted knowingly. Even my c-section was unexpected and I had nothing. What things should I take? I usually have just relied on the hospital gowns and then had big t-shirts and lounge pants brought in along with underwear and such. I'll bring my laptop as well as our hospital has free wifi.

But, this is all unchartered waters for me... any advice on what to pack? I'm already having to pack my daughter's bag for 2 different places because she'll be back and forth while my husband is at work.

Are there any specific questions I should as the surgeon at my pre-surgery appt?

Any advice period would be great.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/31/2009 10:04 PM (GMT -6)   
Things to take-BIG clothes, like if you wear medium shorts, buy at least XL i wore medium and bought 1X and for gowns i bought 2X (you couldnt even find me in them, lol) Chap stick or lip gloss, your own undies (soft ones) some pads because you will probably start your period, your cell phone, your ipod or MP3 or whatever, a game boy if you have one or some puzzle books or something, gas-x (or make sure your dr writes you a script before surgery)
If you hadnt asked that i could hae thought of a thousand things, lol.

Things to ask-find out if they do lapro or open, talk about tyour pain management. Lots of people dont want to take the pain pills but you will heal faster ifyou take them. If you have had a lot of blood work or IVs you might want to talk to your dr about having a pic line put in.

When you talk to your ET, wear or bring, your clothes that you like to wear, dont let them mark you in sweats, wear jeans or whatever you would wear out. that way you can make srue your stoma gets placed in a good place.
Ask to see dif kinds of bags, and ask for a sample to take home. Go ahead and call the companies and request samples once you get your surgery date.

Now here is something you might not here, when you wake up from surgery, you will have on a clear bag, and the stuff that comes out of you is going to be this glow in the dark green stuff, and it is going to smell like death warmed over and killed again! Dont freak out though (noone told me this and i was horrified!) it will NOT stay like that i promise! its just bile coming out and once you start to eat again it will go to a brown color, or a color depending on what you eat. And the smell wont be nearly as bad. Also, when you get home you wont use the clear bag. Beware though if you eat red jello or red something you may think you arebleeding to death (i did) causeyour output will be blood red, lol.
also, when your ET comes in and shows you how to change your bag, have someone wtih you, like your husband or Mom or something someone who is not heavily drugged, lol. Your ET will probably suggest a type of bag for you, I suggest going ahead and ordering one box of bags and one box of flanges and your paste and such, that way you wont be stuck with the junk the hosptial sends you home with!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/31/2009 10:06 PM (GMT -6)   
Oh and they put these pads under you at the hosptial that are like waterproof or whatever, be sure to "accidentally" pack yours when you leave, lol. It will be handy at home!
And they will probaby sew your bottom shut, so thats gonna make it hard to lay right in the bed, i used a big body pillow to help, you might want to get one of those, and get a heating pad if you dont have one! and stock up on gas-x for home, you will have crazy gas for the first few weeks.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/1/2009 5:33 AM (GMT -6)   
I brought a robe and slippers (without backs) so I could get them on myself...I didn't have the mind to read, but my IPod was a godsend and I even slept with it on at night to block out noise! Cell phone and/or laptop to stay in contact with people. I didn't let visitors come to see me...I was there to recover so I could get home...and I found that when people were always stopping by I didn't get to 'rest and recover' and I was always tired:(

Any supplies that hit your room, you've paid for, so whatever is there when you go home, TAKE IT!!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/1/2009 2:23 PM (GMT -6)   
oh if you dont have texting you might want to get that, lol. I didnt text when i was in the hosptial i hadnt really started yet, but i wish i had cause that would have been so nice and so much easier.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 3:15 PM (GMT -6)   
summerstorm said...
oh if you dont have texting you might want to get that, lol. I didnt text when i was in the hosptial i hadnt really started yet, but i wish i had cause that would have been so nice and so much easier.


Got me a new mini laptop and the hospital has wifi! ;) I'm all set for that!!! I want to pack minimally... I hate over-packing!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 4:03 PM (GMT -6)   
I brought one change of clothes and that was about it. Also a laptop.

Everything else was provided by the hospital.

Good luck :)

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 4:05 PM (GMT -6)   
Oh leave anything of value at home. Rings, watches, anything you don't want to lose.

Sometimes things do go missing in hosptials. No sense in taking things you really don't need.

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 4/1/2009 5:14 PM (GMT -6)   
Wow, I recognize a lot of myself in your recent posts. I too turned down Tsabri... I had failed remicade and humira, and it was TOO scary for me. Went to surgery instead.

Even after I decided on surgery, I was scared and doubtful, and worried that I hadn't exhausted all other options... except that I had, and it was just hard to let go. I 1000% do not regret my decision, even for one minute. You will feel so much better without a diseased organ inside of you.

Pack lightly, if you have a laptop and some tunes, as well as some purell gel for your hands at bedside, you will be in good shape. I have never had the urge to bring my own clothes to the hospital, the germs and such freak me out, so I just wear the gown. Plus after my surgery I had a rectal drain for a few days, that would have been uncomfortable in pjs.

Hang in there, it is normal to be scared and to second-guess yourself.

You will adjust to the pouch and your new body. It takes a couple of months, but soon everything will be a new normal.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 7:12 PM (GMT -6)   
THanks all for the wonderful advice! I'm trying to get the household in order. Freeze a few small dinners for my husband (and mainly my daughter!), get bags packed for my daughter as she'll be a few different places for the first few weeks, get bills set-up to auto-pay. get my questions for the surgeon...the list goes on!

I am going to bring a robe..as if I'm up and walking.. I want some clothes to wear. I think I'll bring 3 sets of large t-shirts and large comfy pants. I don't mind the gowns, but this way if I want I'll have something comfy. And, then I'm going to bring a small bag of toiletries (deoderant, toothbrush, shampoo, etc) and then just my mini laptop and my nintendo DS (it has a crosswords game on it!). I can listen to the XM radio via my laptop if I need to. All our rooms are private at our hospital... but I guess I just don't want to msis anything. Everytime I've been admitted to the hospital it was by emergency and I had NOTHING with me..

ANymore suggestions, please list them.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/1/2009 9:08 PM (GMT -6)   
If you can, just buy you some cheap clothest to take to the hospital or wear some old ones. perosnally i dont like to bring things home from the hosptial, i'm weird like that.
BUT you will most likely get blood or something or you might have a leak at first and its much easier if you can just toss those clothes.

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 4/5/2009 6:50 PM (GMT -6)   

Hi Kacie,

The one thing that was a must was an ipod.  If you have one, take it, it helps drowned out all the sounds when you are trying to sleep, I still sleep with mine because I became addicted to it after my surgery smilewinkgrin .

Wishing you the best.

Peace and prayers,

Judy


 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 4/5/2009 8:44 PM (GMT -6)   
When I went in for my surgeries I always took my insurance booklet because there sometimes were certain companies I had to order supplies from or contact a company such as home health care. There were some things I lined up myself.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/5/2009 9:29 PM (GMT -6)   
Ohio43 said...
When I went in for my surgeries I always took my insurance booklet because there sometimes were certain companies I had to order supplies from or contact a company such as home health care. There were some things I lined up myself.


That's a GREAT idea! I'll go ahead and call my insurance company..maybe there are some things they can go ahead and get me started with.

I'm semi-expecting a bit longer of a hospital stay... more for my comfort. It'll be easier on my entire family if they lean on the side of caution for discharge because of my 20 month old at home. My husband is going to take a week of vacation when I come home and work while I'm in the hospital so that he can care for our daughter and me.

Not sure which is worst... the healing process afterwards..or the prepping to surgery!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/5/2009 9:44 PM (GMT -6)   
The only thing I can think to add is that if you can have someone stay with you in the hospital, especially at night, it is a huge help. The nurses are so busy charting on the computers that they really don't spend alot of time with you, or at least that was my experience. I was so hooked up to things that it was difficult to get around for a few days, and if my husband hadn't stayed with me, it would have been so much more difficult. They want you to walk, walk, walk, but the first couple days I don't think I could have without some help.

Wishing you the best!
Janie

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/6/2009 10:06 AM (GMT -6)   
I didnt like having someone stay with me, simply because i was so tired and didnt feel like dealing with someone, lol.

I got through the prep (i used the pills) by saying with each time "I only have to take 12 more of these in my whole life" then next time "i only have to take 8 more of these in my whole life" etc...

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/6/2009 10:09 AM (GMT -6)   
I didn't like having people there either...I even sent my hubby home a lot...of course it was AFTER he brought me my Starbucks!!!

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/6/2009 10:17 AM (GMT -6)   
That's funny...I totally understand about sending hubby out; mine left during the day alot...our  hospital has a house nearby where family members can stay for $40 a day, so he had a place to go to leave me for awhile. (My surgery was about 60 miles from our home, and he didn't want to drive back and forth all the time.   At night though, it felt great knowing he was there because the nurses were hard to find sometimes!  My machines kept beeping, sometimes 10 times a night and it drove me crazy.  I'd call the nurse station, but if they didn't come in a few minutes, he'd hunt them down and have them reset the machine.  We finallly learned to do it ourselves!!

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/6/2009 2:47 PM (GMT -6)   
LOL about the machines. The PICC I had in July...until they retaped it, I would literally have to leave my arm straight. It was a bit of a nightmare!

DH will not be staying in the evenings. I expect him to stay the day of surgery and maybe the day after. My mom and him will rotate evenings likely and bring my daughter up daily to see me. Our hospital was great last time....so I'm hoping I'll get some good nurses. Most are understanding.. We have a "general" floor which is where I'll end up post surgery and they usually get much older people (70s-90s) who are there with a host of issues. I remember them writing on my board last time.. "Goals for the day - up and walk." I woke up and saw that and laughed. I was already getting up and going pee and plugging my laptop in, etc. Sorry, I just didn't care to get up and move much further then that! LOL! I was already on a blood thinner in case of clots and lets face it.. I was in a HEAP of pain... AND started my period. I had a talk with the nurse that followed that nurse that wrote the message and she whole-heartedly agreed with me so much (because I was awoken about every 3-4 hours for vitals and meds), that she put a note on my door that said.. "DO NOT DISTURB UNTIL X:XXAM" and then gave me my pain meds and left) lol! It WORKED! I got a SOLID 6 hours of sleep..and not a SOUL came in! Even the doctor left and came back...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 4/6/2009 6:59 PM (GMT -6)   
Kaycie--

Just wanted to say that your story reminds me a lot of myself about a year ago...

At age 26, after 11+ years of horrible Crohn's, I finally made the decision to go through with ileostomy surgery. Hardest decision of my life. Cried for hours, talked with parents and fiancee for hours about it.

Last year in May (I was 27 then) I got my ileostomy, and have been able to do so many things now that I couldn't before. Now I am 28, recently married and bought a house, blah blah :) and just Happy, really, living a normal life.

I also had the whole she-bang (rectum and anus) removed, and was sewn up in back. Recovery was uncomfortable at times, but it will pass and in the end you will barely remember it (for me, it is hard to now...!).

Anyway, good luck, I am sure everything will work out wonderfully for you. :)

-E
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 25, 2017 2:18 AM (GMT -6)
There are a total of 2,872,909 posts in 315,302 threads.
View Active Threads


Who's Online
This forum has 156775 registered members. Please welcome our newest member, njn69669123.
225 Guest(s), 5 Registered Member(s) are currently online.  Details
asfasfasgwq02, Bulmanboi123, Dahlias, Starlight*, testuser1234


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer