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tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 241
   Posted 2/12/2011 1:06 PM (GMT -6)   
My surgery is set for the 24th.  An bag, (not sure of the proper name), for at least 12 weeks.  Really nervous.  I just don't want to be embarrassed or ashamed in public.  Although, I can't imagine worse than what I have gone through so far without.  How is it dealt with?  Does it show???  Ugggg.  Thank you

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/12/2011 1:15 PM (GMT -6)   
    I can understand your concerns.  No one was more scared than I.  I had a total colectomy with end ileostomy last June 28th due to ulcerative proctitis.  I will have the bag forever.  It doesn't show and I wear all my clothes that I wore prior to the operation.  I'm not going to lie and say it is a snap.  Like all operations, and this one is a biggie, it takes awhile to recuperate and make adjustments.  But, take it from me...I feel 110% better!  I suffered with ulcerative proctitis for twelve years before finally taking the bull by the horns and decided to go ahead with the surgery.  My GI doctor did NOT want me to have the operation.  All he wanted was to try more and more meds....I went through them all...6MP, Remicade, Humira, all the rectal meds and I was prednisone dependent for two years...ugh, that medicine does a number on ya.
     What are you suffering from...Crohn's or UC or something other?

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/12/2011 2:39 PM (GMT -6)   
When you have some time go through some of the different threads here as there is so much information shared by so many that I think you will be a lot less anxious after you read some of them.

This is a great place to come to get answers, support and understanding.

7 weeks ago my husband had his permanent ileostomy and like Christine says this is major surgery but with each passing day you feel better and better. The pain and discomfort gets less and less each day which you cannot say for the suffering you have been enduring prior to surgery.

He just left the house to go get the mail and take a walk...should be gone for 1/2 hr or so. 7 weeks ago he couldn't even take the chance to walk 1/2 block without having a rest room nearby!

Try not to worry too too much - the important decision has been made for the surgery and everything else will fall into place.

Even if it is only a 12 week situation you still need to approach this as well informed as possible on what to expect and how to change and empty the wafers, pouches etc.

Before the surgery hubby and I went on different manufacturers websites to learn as much as we could and also on you tube believe it or not there are wonderful people demonstrating and showing how to change and care for the bags. It took all the mystery away and by being so informed it was not shocking at all as we knew exactly what to expect. I truly feel this is a good way to approach this to take away alot of the anxiety.

Hubby took to it very well and has adjusted easily to it. Actually you have to, so it is easier on yourself and psyche to accept it and deal with it especially when it is a permanent situation. In part...this forum and another one has definitely played a big part which helped me to help him make it easier too.

He suffered too long - had no life - and it is time to make up for lost time and get back to enjoying life which is what he intends to do and is doing. Good Luck!!
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

hopein3s
New Member


Date Joined Feb 2010
Total Posts : 14
   Posted 2/12/2011 3:04 PM (GMT -6)   
I just had a total colectomy surgery 2 weeks ago on Jan. 31st due to UC with another surgery coming up in May to make a jpouch. Still feeling very sore and had to go home from the hospital with a catheter. As far as the bag goes I was VERY nervous about it! But when I woke up it was not as scary as I made it out to be. Right now being 2 weeks out I'm dealing with a yeast infection under the skin barrier but it seems to be getting a little better. The powder I got with my my ostomy supplies and a yeast infection powder is my best friend.

I really haven't been out in public, still recoving at home, but I don't think anyone will be able to tell you have one. What I wish I would have done is contact ostomy suppliers, coloplast, hollester, etc. And have them send you free samples of everything they have.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 2/12/2011 7:33 PM (GMT -6)   
I had permanent ileostomy surgery in November. I cannot see my appliance under my clothing at all unless it is something really sheer and tight. Now that I am three months out, I wear all the same pants and shirts as I did pre-surgery. At first, my surgery site was sore so I wore baggy stuff. The key to being able to wear you normal clothing is having your stoma put in a good location.

I am lucky in that I have only had one leak since surgery (due to drainage from my incision getting under my wafer) so I was pretty confident and comfortable going out in public right away. It was more exhaustion and pain from surgery that kept me home for a while. The hardest thing for me was getting efficient at changing the appliance. It took me so long at first and I got very frustrated, but now I can do it in 15 minutes.

It is a difficult surgery physically and psychologically, so you just have to be patient with yourself and allow yourself to be a bit scared and unsure sometimes. I was excited for my surgery and still had a period of time afterwards where I grieved the loss of my colon pretty hard. I just took it day by day. However, I feel so much better now and have no regrets.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 2/12/2011 7:44 PM (GMT -6)   
I had mine for nine months and found it to be much easier than I thought it would be. Only had 1 or 2 leaks the entire time and I really didn't feel self-conscious at all about it because you really couldn't see it. I mention this all the time but my kids didn't even know I had it, that's how inconspicuous they are. If I was wearing a light fabric or something like a t-shirt I would wear a Bella Band over the bag. They are made for pregnant women but they are like $15 and really hold the bag tight to you. They also really conceal any type of lines or indentations from the stoma or bag. Good luck!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/12/2011 9:47 PM (GMT -6)   
it won't show, i promise!!! i've had mine for almost four years and the few people i have told have been, like what? for real? one lady didn't even believe me! I still wear the same clothes.
When you wake up in the hosptial you will have on a clear bag, and your output will probably be bright green, do not worry it will not stay like that! and you can get a bag with a cover, so you don't have to look at it! that freaked me out to no end!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/13/2011 12:04 AM (GMT -6)   
I had my surgery six weeks ago on Monday. Tonight I actually went out to dinner and to see a band! After dinner I went an emptied pouch because I am still self-conscious, but I look in the mirror and you can't tell. Emptying it in a public bathroom was no problem. I bring flushable wipes--it's easier for md to clean with them.

I had a hard time getting used to it and had lots of leaks, but that's because I had the wrong type of appliance due to my stoma being a bit retracted. Once that was straightened out, I was fine.

Get lots of samples!!!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/13/2011 10:17 AM (GMT -6)   
The hospital will outfit you with what they commonly use and depending on your stoma if you need a flat or convex wafer. It will be a little trial and error to determine what works best and what you feel the most comfortable with.

Hubby has the Hollister New Image 2 piece set up and the only thing we have changed is going from the drainable pouch with the clamp to the drainable pouch with the lock and roll velcro closure that he likes better.
These pouches also have the filter which doesn't work and last as long as you might use the bag itself for. So far no leakage or problem with them. We are currently trying to decide if we should order the lock and roll pouches without the filters next order. He needs the convex wafer and also uses either an eakin or adapt ring which has worked very well.

We have samples of the moldable wafer from Convatek and have not tried it yet.

If you have someone who can also observe and learn the process to assist you that will be a big help. AFter discharge we had a total of 11 visits from a home health nurse to check on his incision healing, vitals and basically observe the changing of the wafer to make sure he/we were doing it correctly. In the beginning the nurse did most of it and I assisted as it was easier for him to lay in bed that first week or so. He basicially does it all by himself (with a little help from me as his back is quite tender as it kind of went out of him during his recovery) still but that won't be necessary forever.

After you heal and feel stronger and so happy to no longer have all the pain and discomfort the UC gave you, you will find that it is easier to accept and adjust to then you thought.

As I have said...really do as much research as you can before the fact to best prepare you and your mind so it is easier on yourself ultimately.
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

bellypooper
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/15/2011 1:03 PM (GMT -6)   
I highly recommend visting a stoma nurse before surgery,wear clothes you normally wear, they can mark a place that will work best with the kind of clothes you wear. you are lucky to have that option,alot of us have emergency surgery and have no say in where it is placed. good luck to you!!!
think positive, live life to the fullest!!!

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 2/15/2011 3:36 PM (GMT -6)   
tia
It is not totally true than nobody will know you have a pouch. Another person that is an ostomate might pick up the signs, only because they know. A slight rustle from the bag will go unnoticed except possibly to one of us. Same for the slight bulge from gas. Just wear loose clothing and you will be fine. I saw a guy at a flea market that was wearing a tight tee shirt. It looked like he had a gun under his tee shirt......but I knew better.

Dan

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/15/2011 3:41 PM (GMT -6)   
Hi tiaeight -- my surgery is also scheduled for the 24th. I've been asking a lot of newbie questions and getting great responses on this thread
http://www.healingwell.com/community/default.aspx?f=33&m=2023433

best of luck.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/15/2011 9:57 PM (GMT -6)   
dan makes a point, if i saw something like that under someone's shirt I might think, oh an osotmy, but before i had one i never walked around looking at peoples stomachs saying, hmmm i wonder if they have an osotomy?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 241
   Posted 2/16/2011 3:34 PM (GMT -6)   
You all are great! My surgery is due to Chrones and a fistula that is fighting me like crazy! Thank you soo much for the support. I love this forum. Next Thursday, Barnes Jewish Hospital, St Louis. I'm stll very nervous so if you could just say a little wish, that would be great!!!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/16/2011 4:16 PM (GMT -6)   
You will be much happier! Don't worry about being afraid, its normal, you should be scared! if you haven't been marked for your stoma yet, when you go wear your normal everyday clothes, and be sure its marked at a place you are good with, i know it was already mentioned, but location is a huge deal!
and take some gas-x to the hosptial, lol it will be your friend!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/16/2011 4:55 PM (GMT -6)   
     I also have situs inversus (all my organs are reversed), so you can imagine my anxiety pre-op shocked !  Where most people have their stomas on the right side of the belly button, mine is on the left.  After my operation, I asked my surgeon how many patients he operated on who had situs inversus....his answer, "You were the first."  Gulp..lol.  I know it is extremely rare and consider myself very fortunate that throughout life  I haven't had any major problems relating to it.  The only difference my surgeon said was that he stood on the opposite side during the operation.  LOL!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 2/18/2011 10:00 PM (GMT -6)   
Unless I tell people I have a stoma no one knows I have one, I wear skin tight jeans and tops but make sure they are ones that have small amount of stretch in them. I was lucky my surgeon is very considerate where he has placed my stoma as I am very tall with high waist and made sure it was high enough not to be uncomfortable when I crouched down but low enough so would not interfere with waistbands.

Even when I had to have it resited onto the left side due to abcess round original stoma he apparently spent good 15 mins deciding exactly where to put it during the op (at the time of op it was emergency and as scans at that time 16 years ago not very good didn't know how bad abcess was). Bless him he also makes sure he always cuts around my tattoos so they remain intact as well even though it makes it slightly more involved for him.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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