Hi Kaycie--I too have crohn's colitis and, after 24 years of no surgeries and just meds, my health failed miserably. So, I had an ileostomy with a proctocolectomy on 2/24. So--exactly what you're having.
First, try Shaz's Ostomy Pages--so very helpful! Some wonderful folks took pics of their stomas and there are answers to almost all your questions there. Also, see the Ostomy Land website. Along with this forum, these websites helped me so much. Also, I ordered 2 ostomy books The Ostomy Book: Living Comfortable with Ostomy and Living Well With an Ostomy. Finally, the suppliers websites have lots of good tutorials.
I had the opportunity to meet a stoma nurse before the surgery--she had pictures, applicances, tips, reading material.
I'll try to answer some of your questions.
1) What does the
opening look like?
Depends on your surgeon. Mine is a like a little red ridged mountain that flexes and stretches.
2) How does the hole stay sealed around the bag?
The bag is equipped with a wafer/seal or you add more seals
3) How often do you empty the bag?
Depends on you. For me and crohn's--pretty darn often but I'm told it will slow down.
How BIG is the bag?
Take a look at the supplier websites or ask your stoma nurse or surgeon for a catalogue from byram or Edgepark. The bags vary lots.
Does it fit comfortably underneath snug clothing (not that I wear that, just trying to understand)
I don't know yet. I'm pretty swollen still yet still underweight--gonna be an experimental time.
4) Should I go ahead and order a couple of the tubetops from the gal on here? I think I might need to cover the bag for a while to a) get used to it and b) learn to accept it. I'm not scared of it..btu I realize this is a HUGE change.
This is my 5th week--i started wearing some normalist clothes outside the house last week. You have plenty of time to decide. And your incision will be sore. I'm still doing sweats around the house.
5) How long did the surgery last?
Good question for your surgeon. Depends on how difficult your case is. I had 2 surgeons at the same time. My colon was a mess and my rectum perforated, my vaginal wall broken down--I was about
4 hours.
6) How long were you out of it post-surgery? Normally they wake u within a few hours, but is this situation different?
I was about
2-3 hours until I got to my room. Depends on you and the availability of rooms, etc.
7) Did you go to ICU? Or stay in recovery for a certain amount of time? How long did it take to get to a normal room?
I did not go to ICU. Again, it's a personal thing--ask your surgeon what s/he thinks based on your current health (anemia, white blood count, protein, etc).
8) Did they give you supplies in the hospital?
Yes, and some to take home.
9) Do the ostomy supply companies give you free samples? Do certain insurance companies require certain ostomy suppliers? I have Aetna. How do you obtain free samples?
Your stoma nurse from the hospital should set up some deliveries for you. Ask away. I'm about
to call the companies this week as I am finally comfortable trying a new appliance. Trying a new this week actually.
10) How is showering with an ostomy bag?
ok--not as big of a deal as I would have thought. Soon I'll try to shower without it--i can't wait.
11) I have a toddler.. I'm sure she'll be inquisitive.. that's why I'm thinking the tubetops might help. Any suggestions? She's obviously going to know something is wrong with mommy for a while. Can she yank it off? If that happens, is that painful?
Hmmm. . .I don't have children. Maybe someone else has some experience.
Best of luck! I am thinking of you!!