Okay - here come the questions!

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

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 6:21 PM (GMT -7)   
First, WOW! I have been on the CD forum for 3 years. They are great over there, but I have truly never felt so welcomed...especially with a terribly difficult decision that had to be made. I'm still nervous and extremely frustrated with those questioning my decisions..but here it goes!


First, I'll be having a total colectomy, I'm assuming with an ileostomy? as they will sew my rectum shut. This is permanent as I have Crohn's Colitis

1) What does the opening look like?
2) How does the hole stay sealed around the bag?
3) How often do you empty the bag? How BIG is the bag? Does it fit comfortably underneath snug clothing (not that I wear that, just trying to understand)
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.
5) How long did the surgery last?
6) How long were you out of it post-surgery? Normally they wake u within a few hours, but is this situation different?
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?
8) Did they give you supplies in the hospital?
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?
10) How is showering with an ostomy bag?
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?

Hmm..that's all that's on the top of my mind right now. The surgeon's nurse is trying to bump me up a bit in the schedule consdiering I've been out of work for over a week now... so we're trying to get the surgery set up for the week of Easter.

Thank you all so very much! I sincerely appreciate all the valuable (and very understanding) information!
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


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 6:23 PM (GMT -7)   
Oh, and how does sewing the rectum shut work?? Does it bleed..do they remove the tissues? I have had in the rectum: fistulas, abscesses, skin tags, hemmorhoids, fissures... when they remove the rectum..does it leak? How do you get it to heal? Is it painful to sit on?

And, pain management.. what were you given? Were you on a pain pump? If so, how long..
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


papasgirl
Regular Member


Date Joined Apr 2007
Total Posts : 44
   Posted 4/1/2009 6:40 PM (GMT -7)   
hi there
 
 my situation was a bit different from yours but i may be able to give you some awnsers... I had an ileostomy and i went thru the company hollister for my supplies my insurance covered all of it with a prior authorization also your hospital should give you enough supplies to get you started if they dont or u dont think they have given you enough just ask most of the time they will give you extra stuff where your insurance will cover it while in the hospital. where you know ahead of time you may want to ask the pharmacy you go to about what your insurance will cover and if u will need your drs help. I had perforated diverticulitis so mine was done under emergency circumstances and i think it was around a 4 hour surgery.Im gathering yours will be a bit different where it wont be reversable and mine was.Your stoma will look like a red ball kind of and will have just a small area where the stool comes out. It takes some getting used to when it comes to the bags and such if your insurance will cover it i would strongly suggest you have a home nurse come in for awhile until you get used to it.He or she will be able to help u get used to changing the bag and keep an eye on your skin to make sure u arnt getting breakdown there. they can also help you to order the supplies that will work best for you. Dont really know how to tell u how big the bag is its decent sized but you will be surprised at how well you will be able to hide it under clothing and for the most part unless u tell the person they wont be able to tell you even have one. How often you change it will depend on how much you eat and drink and from exsperience i figured out u want to make sure u eat solids also as the ileo stool will be a bit loose as it is also its a good idea to "burp" the bag before bed (getting the air out) some bags are made to not hold the air but some do. You should go to a regular room after the surgery too unless you have other troubles that would make u a high risk. i was in the hospital for just about a week.As for showering that will be up to u on if u want to shower with or without the bag i used to do it both ways because it would feel good to have the bag off for awhile sometimes and any stool will wash right down the drain. I hope everything goes well for you and i hope i was able to awnser some of your questions they really arnt as bad as u would figure just weird lol And i totally suggest a home nurse to help you they can be wonderful. Have a good night and ask more questions if u want and i will try and awnser them for you ok bye for now
 
                                            ~papasgirl
fibro,arthritis,many spinal problems,herniated disk,bone spurs,muscle spasms,chronic neck and low back pain,chronic fatigue,anxiety,panic attacks,depression,ect hahaha i think thats enough now lol
 
3rd degree burn all over back and sides skin graphed also surgery in jan 07 for perforated diverticulitis and a surgery in april 07 to do an ostomy reversal 
 
meds: percocet,ativan,lodine,protonix,cymbalta and benadryl


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 4/1/2009 7:05 PM (GMT -7)   
Good questions! I was so freaked before surgery that I bookmarked this board, but couldn't bring myself to even browse it, you are already doing great!

Ask if there is an ET nurse that your surgeon works with that you can meet with prior to surgery. My ET rn was the one who actually marked where my stoma was going to be, the day before surgery. she was a wonderful resource.

1) What does the opening look like? It was described to me by my nurse as a cherry tomato. It feels and looks the color and texture of your inner lower lip, reddish.

2) How does the hole stay sealed around the bag? There is a wafer, cut with an opening the size of your stoma, that fits around it. There is adhesive under the wafer which helps it stick. The pouch either snaps on or sticks on to the wafer/flange. Some of us also use Eakin seals, it's like a small circular waxy ring or strips that go on the wafer, around the opening, pressed against your skin which helps keep the seal.

3) How often do you empty the bag? How BIG is the bag? Does it fit comfortably underneath snug clothing (not that I wear that, just trying to understand) Everyone is different. I usually empty when I go to the bathroom to pee, or when it gets 1/3 full, averaging about 8 times per day. I often wake at 4 am or so with a full bag and empty and go back to bed. The pouch is fairly discreet, and not too big. The different brands are all a bit different. I've been finding that the flattest I've found is the Coloplast Sensura Flex, which I am currently loving.

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. You don't necessarily need to right away, it will be easiest to have easy access for a while. Once you are home from the hospital, you can use opaque beige pouches, which hides your stoma and the waste.

5) How long did the surgery last? my surgery was 4.5 hours, due to the friability of my organs due to prednisone.

6) How long were you out of it post-surgery? Normally they wake u within a few hours, but is this situation different? The day is a bit of a blur. I woke within a couple of hours, had a pain pump, and no major pain. Was in recovery unit for several hours, then moved up to my room.

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? about 4-5 hours.

8) Did they give you supplies in the hospital? Yes, and they will send you home with a few samples. My ET rn ordered free samples to my home from the 3 major companies, but you can do this online as well.

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? They are pretty generous with the free samples while you are figuring out what you like. I just switched to Aetna, and have to find out which supplier they will cover. I've been paying out of pocket. The supplier is different than the brand tho, you will be able to get whatever brand you like.

10) How is showering with an ostomy bag? I've gotten good advice on this board, and use glad press'n'seal over my abdomen, and am so thrilled to be able to keep everything dry. So much easier than when I used to have to dry with a hair dryer afterwards. It's not logical at all, but I was always paranoid getting everything wet, that it would loosen or fall off, which isn't true. I enjoy my showers more now. Also makes shaving my legs easier/leaning over without the pouch in the way.

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? Since I may be having a j-pouch and reversal, I haven't shown my kids. We used to be an open-door bathroom house, and now we are not. They don't seem to notice, if I keep it permanently, then I will of course tell them. Since she's a toddler, make sure to only give her the bare minimum of info to her developmental level for a while. She doesn't need to know that you poop into a pouch just yet, lol. I doubt she'd be able to yank it off. It will be secure against your body underneath your clothes. I tuck mine into my undies. Others wear body suits or tube tops.
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


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/1/2009 7:07 PM (GMT -7)   
Kaycie-
I am pretty new at this but I will answer what i can?

1) What does the opening look like?
I assume you mean the stoma. The stoma is the small intestine that is brought out as your new poop machine. It is red - like beefy red and protrudes out. It does change size over time.

2) How does the hole stay sealed around the bag?
The bag is connected to a wafer that is sticks to your skin. The wafer goes around the stoma and the stoma empties into the bag


3) How often do you empty the bag? How BIG is the bag? Does it fit comfortably underneath snug clothing (not that I wear that, just trying to understand)
I empty in the morning- once after every meal and at bedtime
THe bag is not noticeable under clothing. I am wearing baby doll shirts and a lycra tank top underneath to keep things from moving. There are a ton of ways to keep the bag from moving.

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.

I use the tanks but am thinking about buying tube tops also
5) How long did the surgery last?

My surgery was 3.5 hrs. But they didn' t sew me up since my ileostomy is temporary

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 in recovery about 2 hrs and then taken back to room

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?

8) Did they give you supplies in the hospital?
The stoma nurse will come to your room befre the surgery to mark the spot. Then she will come to see you after the surgery to give you supplies and show you how to change the bag. My nurse ordered my first shipment of supplies and explained everything. I also can call her and see her whenever i want. She is part of the surgeon's staff.

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? Most companies will send free samples. My insurance ( Vista) paid for all of my supplies which came to 350.00 dollars


10) How is showering with an ostomy bag?
I shower regularly then dry off the bag- run the hair dryer a bit. I haven't had a problem with that

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?
I have a 5yr old so it is easier to explain things to her. I would tell her that mommy has a boo-boo on her tummy and that it hurts to touch. My daughter has never ask me to see it. It would be hard for her to pull it off.

By the way, I hope you have help at home. You will definitely need it esp. with the little one. You won't be able to lift her for some time and forget about cleaning and washing clothes and all that other fun stuff for a while.

Hope my answers helped. I know others will chime in with their experiences.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 4/1/2009 7:13 PM (GMT -7)   
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!!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/1/2009 7:28 PM (GMT -7)   

Kaycie-

Concerning the pain pump, I was on it for a day and a half. I had an option to keep it one more day but decided to start taking morphine through my i.v. and pain pills. I probably should have stayed on the pump one more day.

 

I was sent home with percocet and now I am on vicodin.

 

 


Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/1/2009 8:18 PM (GMT -7)   
Kaycie,

I've had my ileo for quite a while like some others on this board. It looks like the folks that more recently had their surgeries are doing well answering all of your questions. I just wanted to let you know that the folks on this board are REALLY supportive, understanding and Know just what you are going through .... we have been there.

I've said before, this is like a second family to me. My suggestion to you is once you have made your decision, and I think you have, keep your positive attitude, keep learning about your new upcoming "friend" and how to care for it.... you are asking very good questions. If you don't understand the answers.... ask again.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/1/2009 8:23 PM (GMT -7)   
Okay these have been answered but i am bored so imma gonna do it too!


1) What does the opening look like?-it looks kind of funny, and i think its icky looking, and i touched it for the first time the other day, and it was so gross, lol. BUT you dont see it but like every 4 or 5 days.
2) How does the hole stay sealed around the bag? there is a wafer that attaches to your skin, when you put it on, you will use some paste stuff and then press it to your skin and then use the hair dryer on it for a minute to get it warm then press it on your skin. that will make more sense once you see the stuff.
3) How often do you empty the bag? How BIG is the bag? Does it fit comfortably underneath snug clothing (not that I wear that, just trying to understand) I empty every 3 or 4 hours, just when i pee. There are dif sizes bags. they fit under your clothes and NOONE can see. I wear all kinds of things, even some pants that dont exactly fit, and they are just fine. If you wear something tight, like that or panty hose or whatever you just have to empty more often. NOW you wont want to wear anything tight for the first couple of weeks!
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.-I dont use a tube top i bought a bella band from the maternity store. Covering it is fine, but you wont need too. I do cover mine sometimes depending on what i am wearing, and i also use that to cover it when i have "fun" with my husband, lol.
5) How long did the surgery last?-that depends on the person
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 out of it that whole day
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 dont remember
8) Did they give you supplies in the hospital?-they will give you a few to take home, but they are not the ones you will stay with and you probably wont like them!
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?-all of them give free samples.. Your dr will write you a script, you use something like edgepark or another online company to order them. to get free samples go to the dif sites (ie. hollister, coloplast) and request them
10) How is showering with an ostomy bag?-its the same. I tape mine up on itself (again that will make more sense after you see the stuff) then when i get out i use the hair dryer. I will admit that i HATE drying it off, no idea why, it just drives me nuts, lol. It doesnt take long doesnt hurt, just gets on my nerves, lol. You gotta get it dry or you will get the itchies. I just forgot the name of the things, but you can get these things to put over the flange to keep it dry, when i remeber i will post it, lol.
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? -my son was almost 2 when i had surgery, he assked what it was and what was coming out of it, and i said that's poo and he said, "how did winnie the pooh get in there?" it would be hard to yank it off, its under your clothes, so unless she took your pants and undies off and pulled on it realy hard i dont see that happening! I do tape the top of mine to my stomach so that it doesnt pooch out.

ok as for the bottom thing, that was the hardest thing for me to wrap my head around, i mean, how do you remove a hole???
Anyway, they cut all that stuff out and then they sew it shut. Then they pack it with this guaze stuff and you have that in there for a while. It doesnt feel good, it does hurt but it also itches which drove me crazy! there is some cream you can get from the dr, and i also foudn that wearing a pad and changing it alot helped with the itching. You wont want to put alot of pressure on it, however you may think that sitting on a pillow or soemthign will make it better, it will make it worse, lol. If you are riding in the car and you see some bumps or something coming up in the road, lift yourself up!
Also, you are gonna have back pain at first, if you can, pay attention to how you are walkign and keep your back straight and keep good posture that will help. the reason you get back pain is because you tend to lean forward to compensate for the pain.
Somethign that happened tome that i thought was weird but it is apparently common is that my teeth hurt for months not like a horrible pain just kind of dull. I went thinkign i had an abcess or something. But what happens is that when that tube is in for intuabatin it can bruise your gums and teeth if you have soft gums.
Anyway, any other questions? hope i answered some

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 4/1/2009 10:19 PM (GMT -7)   

My daughter had a temporary ostomy and now has a j-pouch but I can tell you a few things. First of all, the size of your stoma will change. In the beginning it will be bigger then will get smaller over time. We got samples for her but by the time she wanted to try some of them, the openings of them were too big for her ostomy. Also, in the beginning it was kind of "icky" to see. Over time, she (and also me) "bonded" with her stoma! LOL. Once you get a routine going, it gets easier. I have pictures of my daughter from the morning of the surgery (right before we left for the hospital) all the way through her recovery from the j-pouch surgery (thanks to Mark & Megan for the idea). The last bag change before her reconnection surgery we took pictures of her stoma. She used the stoma powder to make eyes and a mouth with the stoma as the nose. It's very funny but, unfortunately, not the kind of pictures you go around showing most people!
The clear bags they use in the hospital are somewhat yucky. The opaque bags are great when you get home. You know the poop is there but you don't have to see it. My daughter felt more comfortable wearing baby doll type tops. Each person is different. Make sure you give yourself plenty of time to recuperate and regain your energy level. Definitely have a good support system in place. It makes it easier.


--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


chelebel
Regular Member


Date Joined Mar 2009
Total Posts : 26
   Posted 4/2/2009 3:14 AM (GMT -7)   
Hi Kaycie glad you have got yourself through the decision making process - gee its a hard one. I am just catching up before I go into hospital. All the best for yours when it comes around. good luck x
Panproctocolectomy scheduled for 3rd April.  Diagnosed Ulcerative Colitis 18 years ago.


Trad
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 4/2/2009 3:47 AM (GMT -7)   
I've had a much better quality of life since my colostomy, Things to think about is the types of foods you will eat just after your surgery, although you can eat anything you want after a while, after the op you need to stick to liquids until the system is up and running then gradually move your way to steaks etc. This took about 2-3weeks for me.

Shop around for different bags you get clear one which allow you to see into the bag, although gross it may help you learn to stick the wax around the stoma when you start. Then my stomach was never regular before the colostomy but now its like clock-work. One change in the morning after it works and thats it. Get confident changing it on your own it is not difficult. The Stoma can bleed a bit and thats ok, serious bleeding would need to be checked out. they can bleed just from wiping it a bit to hard with dry toilet paper etc.

You get daily changes and then bags that can last for 2-5days but you empty them when ever you need this can be helpful at the start as your stomach starts to work it will be very runny and probably could change it 2-5 times a day to be comfortable.

I vomitted a bit after my surgery and it was a bit sore that night, the next day i was ok and went for a small walk with the phyiso. Then spent about a week relaxing. coughing, sneazing and laughing will be sore for a while.

Trad
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 4/2/2009 3:49 AM (GMT -7)   
The problem you might face is telling your little girl why its ok for mom to pass wind while in public but not for her to. you get used to it but expect family to look at you a little strange the first few times it happens

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/3/2009 4:34 AM (GMT -7)   
have you gone to www.uoaa.org? It's the ostomy association website and they have some GREAT links...you can see how a stoma looks, watch someone change theirs, look at all the products, etc...It might be good to get a visual.

Everyone has given you some great information, but I'll just add that it is VERY important to stay ahead of your pain...push the pump button while you have it and then take the painkillers...you will know when you don't need them after a while, but in the beginning don't be afraid!

It won't be long now...you'll be UC free soon!!!!!

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/3/2009 7:06 AM (GMT -7)   
Thanks OHIO!!!! I plan to utilize the pain meds.. my mom is super about talking me through taking them. SHe knows I deny a lot of pain meds.

I don't have UC.. but do, so I'll be happy to get rid of the colon that has been the BULK of the problem since dx!

Thank you ALLLL!!!! I'm actually getting *excited* about my FUTURE after this...is that normal? I keep going.. "WOW...no pain meds.. I can LIVE and not worry every second about all of this..." Is that normal?
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 4/3/2009 7:46 AM (GMT -7)   
yes it is totally normal to be excited. You will probably go from super excited to scared to death in the time it takes you to type im excited or im scared the closer you get to surgery.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/3/2009 8:05 AM (GMT -7)   
Oops...I looked at the wrong signature!  Ok, so you won't be 'cured' so to speak, but as a 20+ year Crohnie with a recent proctocolectomy, life will be AMAZING!!!

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 4/3/2009 5:57 PM (GMT -7)   
Hi Kaycie!

I've had my temporary loop ileostomy since July 2007 (don't you love it...I was only to have my "temporary" loop ileostomy for three months!). At the beginning I had to experiment with several brands of ileostomy products. I stuck with the two piece system for about the first year because that is what the hopsital started me off with. They set me up on Hollister products. My skin could not tolerate them, so my ET Nurse switched me to Convatec. I could not handle those either, so the third brand we tried, Coloplast is what I am still using today. I recommend Coloplast if you have sensitive skin.

I would advise you to call Edgepark Medical at 800-321-0591. Ask them to send you a free catalog. Even if you don't order from them, you can still get a catalog so you can get familiar with some of the products out there. For my sensitive skin I use Eakin Seals from Convatec (which many people on this forum love), 3M Cavilon No Sting Skin Barrier Wipes, and to remove the pouch/flange from my skin - Allkare Remover Wipes. I found the Hollister brand ones smell horrible. I don't have to use the remover wipes much any more because my skin has toughened up (or something). It just doesn't hurt much anymore to remove the barrier/flange. As for the one piece or two piece units for the pouches/flanges, I've been using the one piece system for about the last 10 months and love them. My all time favorite is Sensura by Coloplast. It works well for sensitve skin and really stays in place. Also, they are supposed to not break down as quickly. I also use HdroFrame Hydrocolloid flange extensions (which is basically the same material the flange/barriers are made of). This is better for my skin than tape. If I do use tape, it's 3M Transpore or Micropore tapes (paper tapes that breath).

Just in case your ET nurse doesn't tell you this (which I'm sure they will) - push down on your skin to remove tape/adhesive. Do not pull it off. This will be less damaging to your skin.

One other important tidbit: if you end up getting a loop ileostomy, you may want to ask for a light convexity flange/barrier while in the hospital because with the loop ileostomy, you'll have what they call a "second stoma" which is a distal lumen. This is close to the skin, so you'll need a bit of convexity to "lift" it so you don't have leaks. That is what I found out later when I had so many skin problems. Even if you don't need them, it's better to have a couple on hand.

In 2007, I had AETNA Insurance and loved it. They paid 100% of my medical supplies. I went through Sterling Medical (888-202-5700) for about 95% of my supplies. The hospital had given me the catalog for Edgepark. It was a good thing my supplies were covered at 100% because I went through so many before landing on what works for me. Check out all three of the big suppliers - Hollister, Convatec and Coloplast. Also, Google Images of "stomas" if you really want to see what they look like. It does take awhile to get used to having one, but it does become second nature.

Good luck to you!
Mary

Post Edited (Ohio43) : 4/3/2009 7:08:58 PM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, November 23, 2017 12:47 AM (GMT -7)
There are a total of 2,897,060 posts in 317,964 threads.
View Active Threads


Who's Online
This forum has 157544 registered members. Please welcome our newest member, nancydaviko.
228 Guest(s), 4 Registered Member(s) are currently online.  Details
alunke82, Charlie55, Big Tasty, Labradorite


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.