My new stoma :(

[NFS_xtreme]

my new stoma

I HATE IT .... im here in the hospital, been here going on 4 weeks. on the third week i had surgery to remove a diseased portion of intestine. they ended up removing 2 different sections totalling 16inches including the removal of my appendix. due to me being so malnurished, they couldn't complete the resection, leaving me with this stupid ileostomy and a hideous incision with 30 staples. it almost kills me to move, or even cough. it really depresses me that i have to have it, even though it maybe temporary, it still gross, painful, and embarrassing . ....... i just want to wake up and it be all a dream. . . or better yet not wake up at all....

 

[rottengut91]

Hey Cory
I've been exactly where you are right now. Albeit, twenty years ago. When I was 16, I formed an abscess after having my appendix out. They tried for two week to get that sucker to go away. I spent that entire time in the hospital on TPN. At the end of the two weeks, they decided it was time to go in and remove the abscess and do a resection at the time. They prep me for the possibility of waking up with an ileostomy. I was terrified. I remember to this day, the first question out of my mouth when I woke up from that surgery was, "Do I have an ileostomy?" Yes, I woke up with that dredded ostomy. Honestly, it wasn't something I wanted, but it was necessary in order for my body to properly heal. It wasn't always smooth sailing either, but it was only temporary. I'm sure things concerning ostomies have improved some over the years, so there's a good chance you'll have an easier time that I did. But listen, this by far, is not the worst thing that could happen to you. Many people live the lives with ostomies. It will get better. Your body has just been through a very traumatic experience, not to mention the fact that it is still very weak. Give it some time. Try to relax.
There are so many people on here who know exactly how you're feeling right now. Please come here and voice your fears, frustrations and concerns. I truly hope this brings some relief to your life. You've had some rough days leading up to this I'm sure.
I promise, it will get better.

 

[Guest]

hi Cory.... i just wanted to say that like Julie, i've also been where you are, many years ago... i went for a resection, came out months later with an ileostomy and after a battle to stay alive, including a week in ICU. i was so naive i didn't even know what a stoma was before the surgery!!

i also hated it, but the gratitude to be alive was the stronger emotion, and that's what got me through. it was my 2nd chance, many people had worked really hard to keep me here, and i knew i was very lucky.

what i didn't know at that time was just how amazing the human body is.. the acute pain you're in right now, and the scarring... it will all fade, it won't be long before you're walking, bending, etc with ease, and you'll feel so much better overall without that diseased bowel sapping your strength. i cried bucket loads at that stage, where you are now, because of the pain and everything that had happened to me..... if you'd have shown me a crystal ball with a prediction of me in it, 3 months down the line, driving, working, smiling, eating, etc.. there is no way i would've believed it.... but that is exactly how it went.

you will get there Cory, you just need to resign yourself to this period of rest and healing, and look forward to the 'after'.. also, if you haven't done already, ask to have the stoma nurse come and visit you now while you're still in hospital, and tell her how you're feeling. the stoma nurse teams are not just good with the technical side of stoma care, they understand the emotional impact of it all too.

 

[Crohnsie]

I was where you are now 6 years ago, I didn't know what a stoma was at that time having only been diagnosed with crohns 5 days previous but I ended up with one, I was told it was reversable but that didn't make the 9 months that followed any easier, I had to deal with it all very quickly, I got used to it but didn't hate it any less so I know where you are, I wish you a speedy recovery and hope you take advantage of the advice on this forum, seems like there's a lot of great people willing to share their own stories and offer advice, I wish I had this outlet when I was going through it, all the best

 

[NFS_xtreme]

thanks for the support, i guess it just takes getting used to.... i just get depressed easily, i hope the 6 months i have this will fly by

 

[semicolon306]

My first stoma was when I was 19, and I remember the feelings. This is definitely more mental then physical, for most of us. I can remember how they explained it and then waking up and REALLY seeing what happened. Never expected all the pain, staples, and worst of all a clear bag, so you have to see. Everyday you will get better with pain and starting to adjust - IT will happen.

I had mine reversed and then a J pouch, that lasted for many years. June 1st I had to have the J pouch removed, due to some weird situation that happened and is very rare.

This time was much easier and I credit that to having one in the past and the support from the people here. I have found that their is a lot of support hear and in your family & friends. Just remember they do not understand what we are going through and talk and educate them. It helps to talk about this with them, I believe it helps with the healing process.

Since my new one, I have found that there are some great new devices out on the market. These devices make it easier, cover and protect it so well, that NO ONE can even tell I have one. Most people are amazed when I tell them I have one.

If you need anything just ask us on here, we are all in this together and best of luck, you WILL get through this and will be stronger in the end.

 

[Jer's Girl]

Cory, please take some time and go through the stoma support forum. You will find that many people have gone through, and are going through what you are dealing with right now.

I had a temporary illeostomy in April of this year. I went through the same pain and feelings that you are going through. I definitely went through a scary time of depression like I had never known. I never would kill myself, but there were times that I wished I would just die. I couldn't picture living with the bag and being okay with that ever.

But then the pain went away and I found that life was really good with the stoma. I had no Crohn's pain at all. The stoma saved my life, so i realized that I could never regret having it no matter what. I still wanted it reversed, and on Sep. 28. I had my reversal.

Now I am back in pain and recovering from that surgery. I am having a hard time coping (again), but at the same time, I know that i was lucky to have the choice to have the reversal. That is something that not everyone gets. I know that another stoma may be in my future, and although that is not what I want, I know I could get through it and live a long healthy life.

You will get through this too. Since it sounds like yours is only temporary too, please try to see this as a chance to heal and get your body to a place where you don't need the bag any more. You are stronger than you think.

Hang in there buddy. You came to the right place for support and understanding. There are so many wonderful people who have stoma's or have had stoma's temporarily that know what you are going through and can help you through this. I couldn't have gotten through my experience without them.

 

[Hope]

Hey Cory,

I can totally understand the sadness you have. I had gone through 25 long years with crohn's disease, when that day came that I too had to get an Iloestomy done. I had no choice. At that point there were many tears, and recovery was tough...sneezing...walking....moving...talking was sooo tough....ugh...I hear ya. But listen....in a couple of weeks you will be soooo amazed at how far you have come! That pain subsides and you will notice that you will feel better and better as each and everyday passes! In regards to having the appliance, yes, it is not something that most people dream of but hey listen....it will HELP YOU SO MUCH...trust me...it gets easier and easier as time progresses. I have had mine for little over a year now and it is a temp ileo, but, my surgeon recommends that I make it permanent, as my colon is in bad shape. I will make the best decision for me and I know, no matter what, I am greatful to still be able to eat, drink, smile, love, walk, talk see the ocean, smell the flowers, etc etc etc..it will get better!!! Keep your chin up and never ever give up hope!! YOU CAN DO IT!!!

 

[CDDad]

Hi Cory,
Just think, after 6 months you'll be so good with that stoma, and then you'll be ready to give it up. It took me maybe 3 months to get used to this thing. Now after 6 months, it is completly 2nd nature. It's amazing how we can adapt. (mine is a perm)

I'm sorry that happened to you, but you'll get though this. We'll be here for ya! I had the same feelings as you, but things wil get better.

 

[ameslouise]

Not much to add, just wanted to say hang in there!

Things will get better for you very soon!

- Amy

 

[mario]

Cory. I was in your situation 2 years ago. Trust me, it is just a blip! I feel great now. Use your stoma as a healing device. DO NOT GIVE UP! My life is great now and yours will be too!!!

 

[merrywidow]

hugs