Meet & talk to fellow OstoMates 20,338 members

New illeostomy

Posted by Newbie0504, on Tue Jun 25, 2019 7:29 pm

In 6 days I undergo surgery for an illeostomy I was told yesterday I feel i have no time to mentally prepare I feel I am going to wake up butchered damaged like no one will ever want to be near me again! 

Reply by honestabe, on Tue Jun 25, 2019 8:44 pm

Wrong, been there! Will be ok! Steve

Reply by Newbie0504, on Tue Jun 25, 2019 8:57 pm

Thank You!

Reply by JSI2511, on Tue Jun 25, 2019 9:38 pm
Hi, Newbie0504,

I'm sorry you have deal with this health situation! I know it's shocking news to absorb, but you will get through it. Will your ileostomy be permanent or temporary? I received my ileostomy in Jan. I had one years ago & didn't expect to have one again, but here I am. Mine will be permanent as I am having my j pouch removed July 3rd. Whether permanent or not, you will adapt - just be patient with yourself & allow yourself to feel whatever emotions pop up, in order to process the change.

Try to walk as much as you can once the nurses want you up and walking. It will help a lot with recovery. You should have an ostomy nurse who will teach you how to change your bag. Ask any and all questions you have - the nurse is there to help you. You can also see if the hospital has a support group, if that's something that you think may interest you.

Usually, no one will be able to tell you have it, unless you tell them. And your family and friends should be there for you. Lean on them for emotional support & also help during recovery.

Just remember you are not alone & you are stronger than you know! If you have specific questions about recovery, products, etc, I'm happy to try and answer as I'm sure others will too. I'm new to this site and have seen lots of responses on different topics with good tips & words of encouragement! Everyone seems very friendly!

Best wishes to you!

Reply by Puppyluv56, on Tue Jun 25, 2019 9:41 pm


We have all been in that terrible place and we have all come out on the other side of surgery to find we are happy to be alive. I know it does not seem that way now but there is a lot of support for you. Hopefully your family and friends will be with you, if you allow them too. There is a full life to be had after surgery. An Ostomy cannot hold you down!

 Prayers and hugs for you! 


Reply by Riva, on Tue Jun 25, 2019 10:29 pm
I went through the same sudden dilemma as you five years ago this coming July 7th. You will get through this. It is a total learning experience from what Ostomy products, what foods, what exercise you can do. The bottom line: this surgery does not define who you are. You will be able to travel, swim, live, love and enjoy your life . Connect with an Ostomy support group in your area as well as an OSTOMY wound care nurse. Again, you will get this this. Best of luck😎
Reply by Cheekymonkey111, on Wed Jun 26, 2019 5:50 am
I had a similar experience 6 months ago had only one day notice before having the op. I decided to try and embrace it as I had spent months in hospital and forgotten what it was like to be well. I cant add anything that hasn’t already been said above apart from try to stay positive as that’s what I found helped when getting used to mine. I’m 6 months down the line and back to normal and well again thankful for having the surgery.

Good luck get well soon and there’s always plenty of help and support on here x
Reply by Bagface, on Wed Jun 26, 2019 6:33 am

Newbie-I completely  agree with puppyluv. When I had my emergency surgery, I had no clue that I would wake up with an ileostomy. I was more curious than anything else and not upset about it at all. I had the ileo for 6 months and it didn't hold me back from doing anything. You'll be fine. I've learned a lot from this site. Best of luck to you!

Reply by Newbie0504, on Wed Jun 26, 2019 8:14 am

Thank you so much Jennifer mine will be permanent I had my entire colon removed 1 year ago except for the rectum I am not a j pouch candidate it’s just so much in such a short period to absorb but I will make it through! Thank you for your kind words they really helped❤️

Reply by ron in mich, on Wed Jun 26, 2019 9:01 am
Hi newbie have your surgeon make the stoma stick out at least one inch or you will have problems with getting a good seal with the wafer part of the pouch and skin issues.
Reply by Johnsonk2, on Thu Jun 27, 2019 10:29 am

Best thing to remember is your life WILL get better. Yes it's a scary thing, yes there will be pain, yes it's a HUGE adjustment but in the end you will be OK. Keep in mind there is people out there who have been there and will help guide you along. A few words of advice. Look up videos on youtube of ostomates there are tons of people who show you what they do, this might help calm some of the unknown. Once you have your ostomy call all the major vendors and ask for free samples, these companies are great and very helpful. You don't have to stick with what the hospital sends you home with, this is something I didn't know at first. It will be a trial and error in the beginning to find the right equiptment for you.

Good Luck..

Reply by panther, on Thu Jun 27, 2019 11:31 am

Can understand you being worried it's a normal reaction we all go through. Yes it will take time to accept it but you will get there in your own time don't rush take it hour by hour at first then day by day and week by week. After seeing your photo if anyone was mad enough not to fall in love with you they need there head looking at by a DR!!!

Reply by anonblu, on Thu Jun 27, 2019 3:09 pm

Hello there,

Alan here. I just wanted to encourage you to keep a positive mindset. I know this is quite hard to do with this sudden life changing news. Please think of it this way. It’s not the end of the world. You will have a full life and be able to be active still. Yes, it is a scary thought to think of having such a surgery with little time to mentally prepare and it is a different life having a ostomy. However, you have a support system here if not your family and friends. 

I also recommend that you speak with your surgeon and or gastro about how you’re feeling. They should be able to provide some comfort. 

I’m sorry to hear that this is quite sudden of a situation. 
Chin up, be strong and think positive. 

With much kindness 



Reply by tcfolsom, on Thu Jun 27, 2019 3:50 pm

I had dealt with chronic colon problems for 2 decades. I had a permanent colostomy last fall, and you know what? I have my life back - and you will too. Its amazing how your confidence will be boosted whan you are no longer in pain or in panic mode. It will take a little adjusting, and finding the products that work best for you and your body, but chances are you will look back after 6 months and be very happy with your decision. Use all the support people and vehicles you can - don't be afraid. My ostomy nurse hepled me find the right products that now, 10 months later, work so well for me that I don't even think about my ostomy any more. Its just there. I know its hard to believe, but seriously - you are going to feel great soon!


Reply by BeachRN, on Fri Jun 28, 2019 11:57 am

You are very encouraging and positive. I feel the same way. Are there any ostomy groups in Naples Florida. I spend my Winters there. October-May. Thank you. Regards BeachRN

* Please, do not post contact information like email, Facebook or Twitter accounts, or phone number. These will be removed by the Administrator.
All times are GMT - 4 Hours
Currently online: 19    
3 members & 16 visitors
lovely (f)