Feeling Unprepared for Ileostomy Surgery

Jun 25, 2019 11:29 pm

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

Jun 26, 2019 12:44 am

Wrong, been there! Will be okay! Steve

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Jun 26, 2019 12:57 am

Thank you!

Jun 26, 2019 1:38 am
Hi, Newbie0504,

I'm sorry you have to 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 and 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 and 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 and also help during recovery.

Just remember you are not alone and 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 and words of encouragement! Everyone seems very friendly!

Best wishes to you!

Jun 26, 2019 1:41 am


We have all been in that terrible place, and we have all come out on the other side of surgery to find that 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!


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Jun 26, 2019 2:29 am

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. Best of luck.

Jun 26, 2019 9:50 am

I had a similar experience 6 months ago. I had only one day's notice before having the op. I decided to try and embrace it as I had spent months in the hospital and forgotten what it was like to be well. I can't add anything that hasn't already been said above, apart from trying 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

Jun 26, 2019 10:33 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!

Jun 26, 2019 12:14 pm

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.

ron in mich
Jun 26, 2019 1:01 pm

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.

Jun 27, 2019 2:29 pm

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 are 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 equipment for you.

Good luck.

Past Member
Jun 27, 2019 3:31 pm

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 their head looking at by a doctor!

Jun 27, 2019 7:09 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 an 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


Jun 27, 2019 7:50 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. It's amazing how your confidence will be boosted when 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 helped me find the right products that now, 10 months later, work so well for me that I don't even think about my ostomy anymore. It's just there. I know it's hard to believe, but seriously - you are going to feel great soon!

Jun 28, 2019 3:57 pm

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.

Jul 01, 2019 9:16 pm

And some had no forewarning whatsoever. You're 'butchering yourself' before you have had surgery! Folks are not going to run away from you just because you have an ileostomy. You have more going for you than you give credit for. You know you are having surgery. You have this site for support and you know ahead that you will need supplies. If you haven't already, get a hold of a wound care clinic in your area (and works with your insurance) so you have a place to go for assistance after surgery. I had none of the above as my ostomy was performed on an emergency basis. Now relax, let the doctors move in and take advantage of the R + R.

I have had my ostomy for 3 years now and I find more people want to be around. They're curious and have questions. Make sure you take the necessary time required before you either go back to work or return to your typical lifestyle.

Jul 01, 2019 9:17 pm

And good luck. Hope all goes well.

Jul 02, 2019 4:14 pm


Thinking about you and hoping your surgery has gone well and you are on the mend! Keep us posted when you feel better!


Jul 02, 2019 4:26 pm

Newbie - Hope all is going well.

looking forward
Jul 25, 2019 1:59 am

I know exactly how you feel. It happened to me a few months ago and I am still not mentally there yet. Just hang in and talk to us whenever you feel down. Time passes and you will begin to feel better. The best of luck to you. J

Past Member
Oct 01, 2019 2:53 am

I walked into the emergency room, the next morning I woke up with a bag. It pretty much finished many things. I went into a deep depression, but eventually the pain turns into wisdom. There is a way to lead a full life, and date, and travel, and do everything. Must absolutely know your digestion, everything about it; what goes in, what comes out, how and when. You need to have the perfect appliance, and that takes time. I lead a full life but took years; had I known then what I know now, I would have dealt with this in a much better fashion, experience matters. Last, this is not a communicative disease, or leprosy, or anything contagious, or horrible. It is nature. So, you don't have to tell anyone anything, at any point, until you decide it is time to do so, and would give the person time to know you first, and you need to achieve that level of confidence. I decide when and whom, and why, and it is because I feel as normal as anyone else. I no longer think about it or pay attention to it much during the day; I forget. All kinds of clothing products like ostomy secrets, a shirt on, done, for all occasions. All this takes time, but you will get there, and after reading your post, knowing that this happened just a few months ago, I'd say you are doing great, considering the circumstances, all this will come in time. Good luck.