HealingWell
Search Close Search
☰

Date set for surgery

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/16/2012 6:15 AM (GMT 0)
Hello everyone...Well I have been on a waiting list for surgery and have just been advised it will take place on

30 July ...Now that the date has been set it now seems so real. The thought of a bag (a word I even have trouble saying) gives me the chills. I honestly don't know how I am going to cope having to deal with it. I will chat to the right people and I'm sure they will help a great deal. But how is someone who is scared of the sight of needles supposed to deal with a stoma (The thought of having to see it let alone deal with it is so scary).

I know it may be temporary at this stage (I am a candidate for a j pouch) its still something I can't seem to get my head around. I have had lots of time to get used to the idea and have taken small steps to get used to the situation...I still can't even look at youtube clips....

My wonderful partner is the most supportive man in the world but I can't stop thinking such negative thoughts. Sorry to vent and for sounding selfish, I'm just so unsure.

Posted 6/16/2012 10:31 AM (GMT 0)
You will get used to it. At first I couldn't even talk about it and told almost no one irl. I got it because I had to, and for me, it was a very practical decision, so I decided to go with the permanent ileostomy. As time has gone on, there are many times I have forgotten I have it. I have a really good hernia belt that wraps around my abdomen and the pouch, so I wear anything without people noticing at all. I was just at the pool with my kids in a tankini yesterday and I know I looked like anyone else.

The great thing about an ileostomy is the convenience. You hardly have any urgency to get to a bathroom, and there is no scary anticipation regarding when an "attack" will hit. After living so long in my worst flare ever, I hated having to worry about bathrooms and accidents.

Try to go to a few ostomy support group meetings and meet some people around your age prior to having the surgery. It helps to see real people and realize that their lives are no different than any normal person. I met a woman whose son went to the school where my mom works. My mom never even knew this woman has an ileostomy, and the woman had been pregnant and had a son after ileo, was a boy scout leader, went on camping trips, to all school functions, etc. For what it's worth she is also attractive with a great wardrobe. She just had a bad case of Crohn's, unfortunately, and needed an ileostomy. Speaking to this woman directly helped me tremendously. She visited me in the hospital after my surgery, and we are still in touch. I was amazed at how she could live such a normal life with a "bag."
Posted 6/16/2012 8:02 PM (GMT 0)
Mine is permanent. Had it 4 years and traveled the world. THEN This March the thing quit out on me. Had to hunt for help for 3 months for help to get a revision. Got it and so far so good. But now having appliance issues. We do what we gotta do. You will do fine. We are here for you. Get an Edgepark or Byrams catalog and see what you can get for samples. The first time I looked at my first stoma I passed out, but then I traveled the world. So it is as it is. Your will not likely be permanent. I have mine due to injuries from a GYN surgery so mine not even for disease. We do what we gotta do to live. Rosemary
Posted 6/17/2012 5:15 AM (GMT 0)
My youngest son just told me he cannot remember me being fit and healthy. I never realized how much of my life was taken over by UC. I Was forced to have an ileo when my colon fell apart. I wish I had the operation decades ago. The temp ileo was easy live with, the loop ileo has been tough. My take down surgery is the 26th.
Your quality of life will probably dramatically improve after your recovery. Good luck!
Posted 6/17/2012 1:59 PM (GMT 0)
     I have a permanent ileo.  We all know what you are going through because we have walked in your shoes.   It will seem overwhelming at first, but as time goes by it will become second nature and your overall health will improve.  Prednisone was killing me!  During the twelve years I suffered with ulcerative proctitis I was on 6MP for seven of those years (never kept me in a long term remission).  I then tried Remicade which failed after my 3rd infusion and finally three months on Humira without any change.

     My only regret is that I didn't seek out a colorectal surgeon ten years before I finally had the operation (June 28, 2010).

     Please do not look on youtube......lolololol.  That was the mistake I made and was absolutely HORRIFIED at what I was watching shocked .

     I was 63 yrs old at the time of my operation.  My GI doctor was against it and I had to seek out a colorectal surgeon on my own.  Sooooo glad I did.  I had the operation at Pennsylvania Hospital in Philly by Dr. Robert Fry, head of colorectal surgery at the Univ of Pa Hospital.   I was not a candidate for j-pouch because of my deteriorating health.  However, when I first saw Dr. Fry, I was at the end of my rope and the thought of having a bag did not deter me from the operation whatsoever.  I was just so sick of being sick.    I didn't want to wind up like my  paternal grandmother who died of rectal cancer at the age of 65 back in 1952.  I found out during my hospital stay that nana suffered the same symptoms as I shakehead .

     When I woke up from surgery and looked at the bag, I thought..."How in the world am I going to be able to handle this?"  The doctors and nurses, not to leave out my wonderful ostomy nurse, were wonderful!!!!  I had a nurse come to the house for about a month post op and most of them were very helpful.  Some, I had to inform..lol.  Anyway, take one day at a time.  We are all here to help you in whatever way we can.

     God bless and the best of luck to you.

Posted 6/22/2012 9:35 AM (GMT 0)
Thanks to everyone who has posted ...I really do appreciate it .....one day at a time
Posted 6/22/2012 11:27 AM (GMT 0)
You are stronger than you think you are. The stoma is a means to get your health back, and you'll just do what you have to do. It's totally normal to be overwhelmed and uncertain if you can manage, but basically, you have to so you will.

Since you have a bit of time, I would recommend learning some meditation/breathing techniques -- just general ways to calm yourself. These techniques can help you move through fear and disgust.

When you start feeling better, it's all a lot easier .... being sick makes everything overwhelming...

Hang in. It's hard, but you can do hard things!
Posted 6/22/2012 6:43 PM (GMT 0)
It should comfort you to know that you can't feel your ostomy and will only have to change the bag every few days. I generally leave mine on for 4 days. So you don't have to deal with it constantly (other than ~5 times daily emptying - but you have pooped for your entire life so youre used to that!)

You will of course have several shots and blood draws in the hospital though.. they should put the IV in while you're asleep and then you'll be on painkillers so you'll hardly even feel the heparin or blood draws
Posted 6/22/2012 6:47 PM (GMT 0)
Also if you wake up with a drain in your side... be warned that it feels very weird coming out. sort of like getting your catheter removed (which you will experience earlier) but more intense. Not painful at all.. just very weird. like they're unzipping something inside of you. If you are very afraid of it you can always ask for a one time dose of anxiety meds or an anti-emetic if you think you'll need it
Posted 6/23/2012 6:14 AM (GMT 0)
Some fantastic ideas and support here thank you (I have wondered about tubes and things and its great to have the feeling explained....
Posted 6/23/2012 6:42 AM (GMT 0)
IF your stoma does not protrude from the surface of your abdomen very much, be sure they fit you with CONVEX wafers!  They sent my husband home with standard flat skin wafers and we went through hell with leaking for almost two weeks until this forum told me about the convex type.  They fit much better around the stoma and now we can get 3 days out of a wafer/bag.  But if you look back at my posts, you will read how bad it got....sleeping in 3 hours shifts because we were afraid of leaks.  Even if the nurse or doctor says your stoma looks like it sticks out enough, you might want to try the convex wafer with a belt right away.

The ostomy nurse in the hospital will show you or your loved one what to do(I still change my husband's because he is a lefty and with stoma on the right it is very awkward for him to try to do it himself).  ake them come back and go over it until you feel comfortable that you know how to do it yourself or that your loved one can do it.   Call Coloplast or Convatec ahead of time and have them send you a sample kit...Convatec sends a whole lot of stuff for you to try.  Both companies have ostomy specialists available by phone to talk with you about what to use or how to deal with a problem. 

But overall THIS FORUM is your best source of information.  These wonderful people have really saved my sanity.  No question is too "personal"....they even answered my questions about resuming sex...and at 61 that is a subject most of my generation tend to avoid.  My husband has his reversal in July...we see the surgeon Monday!  

Good luck and you will be in my prayers.

Posted 6/23/2012 11:13 PM (GMT 0)
Thank Donna

I'm also a leftie and did wonder about that too.  I'll do my reserach re the wafers etc, ....good ideas.  Just sent away for a couple of samples too...thank you so much

Posted 6/24/2012 1:50 AM (GMT 0)
Ask your surgeon to put your stoma on the left side. My next door neighbor has a permanent ostomy on her left side. She is also left-handed.
Posted 6/24/2012 5:43 PM (GMT 0)
cfg ,
breathe in and out .... i felt the same way except it was my idea to get the surgery but the 1week prior to it FREAK CITY over here lol. it's a big deal but it gets better one thing that helped me through it was embracing the fact that YOU WILL have a ostomy bag ... i have a website that i made
www.myostomyconfidence.webs.com
i think you will find it a lil bit helpful
journaling also helps alot more than you think ...and besides when this journey is over you can look back and re read it and just be SO PROUD OF YOURSELF even though your freaking out now and you will probally freak out when you see your bag (because i definetly did) just know your partner will be there for you . this suppourt group we will be here for you and whater you "spiritually" belive will be there and if you dont belive in anything the universe will take care of you! ..... i hae my email listed on my profile so if you ever need someone to talk to send me a mesg. im ALWAYS open to talk and share my personal experinces :).....
it will be ok <3
✚ New Topic ✚ Reply