Adjusting to Life After an Ileostomy: Seeking Advice and Support

As you can probably tell by my name, I have no idea of anything going on.  I went to the hospital via ambulance with my hubby tagging along in the car.  This was on July 31st.  I had no idea what had happened to  me...or even why.  I spent the next 30 days in the hospital with either the nurses...aides or whoever would tend to my leaking bag or to do a clean up.  And...need I say anything about the hospital food?  I would have requested a Bud Lite but I knew that  was out  of the  question.



I was told that I had an ilestomy.  What in God's name is that?  What's the difference between that and a colostomy?  I am still having a lot of issues both mentally and physically.  



I  get mad at my hubby because he keeps saying...it's life...adjust.  How in the world do I do that?  I've always been active and out and about being with people.  Now, I just want to sit on my bed with my hot pad on my rear end and watch TV.



Now, not only have I been having problems with sometimes the leaking but now I'm starting to itch and there is no way to SCRATCH!!  HELP!!

it sucks to say your hubby is kinda right at least he is there  and hasnt left and if he is willing to adapt to your new life then you have it way easier then alot of ostomyies do one thing you can do is look for a support group close buy id there isnt any people on here are willing to chat and help you out so dont get yourslef so down that you have to rely on others you are the only one that can pull yourself out of the depression that you are causing you have to look at all the people that are there for you

for leaks and itchy skin try calamine lotion and or anything that takes itching away as far as leaks there are serval things to try depends on the bag you are wearing to trying glues and rings or just heating the waffer with a hair dryer

good lUCK AND WELCOME

hi i also no how  u feel i had an emergency op and woke up with a colosomy that was in may but i have a great husband and family who were all there wen i needed them but u have to be strong i like this site you can chat with people thet hace went through the same thing and it helps you understand please go to the chat room and join in you take care it gets better keep your spirits up x

Hi and welcome to the mad house! But it is a mad house where you can ask anything and there will be someone here that has done that and worn the T-shirt, or leaked all over the bed or exploded in the supermarket or ..... whatever, one of us will have been there!



To start with - the difference between a colostomy and an ileostomy is whereabouts in the bowel the stoma is formed. A colostomy is formed from the colon and the ileostomy is formed from the ileum. ....... the main difference is that an ileo will work most of the time and the output is much more liquid. Once the colon is reached then water is absorbed and the output will be much more solid/formed and can be much more predictable as to when it 'works'.



Hope that answers the forst question and makes some sense - have a look at the 'anatomy apron' video that can be found from this link ...



https://www.meetanostomate.org/index.php?page=ad&action=viewdetailed&view_id=1&id=10



Take care ....



Rach xxxxx

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I agree with Wee Wee...and the single best way to adjust is with people who have similar problems - find your nearest UOAA support group and JOIN!  There are 20 groups listed for the state of Illinois.



Go to www.ostomy.org and look up which one is closest to you - call the person listed - request a certified ostomy visitor and then go to the next scheduled group.  You'll be glad you did.  

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My Ostomy Journey: Keyla | Hollister

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your hubby partly right its hard if the other person doesnt hav one i have an ileostomy so that means bit by bit through CROHN;s disease 8 ops in that 3 reversals no goof but my stoma nurses was so much fun she even asked me wat to calle it  i said "CALL IT" but i said it looked like a blank but then i thought cherry tomatoe so established cherry if u need maybe u keep pouch on 2 long or can u get ileo gel u put it inthe bottom of pouch it soaks up the water a god sent and maybe u need a differnt pouch there are about 6 companys i voluteer in melbourne australia i found out soooo much i use for itching a barrier 3344e  barrier wipe  dont use soap darl. i knew wat was going to happen but was sooo ill i didnt care /have had my last operation my bottom still leaks a bit am told crohns patients dont heal well but pls wen u r better u will find life goes on my first temp. stoma i was 29 so i bunjee jumped didnt like it but did it i also swim been overseas hon u will be bask on your feet i thought i wouldnt get better takes a while if u treat yourself like an alein so will others LIVE YOUR LIFE LOV YOUR HUBBY Ayeah itch drive me nmad so rem u can ring all the copanys and got samples maybe u need a shallow base plate like me i use coloplast sensura 15537 my fam and friend treat me normal but i blame cherry for lots of thing lol good luck me lov hope this helps xx mare xxxxxx

Thanks for the comment WeeWee...I really appreciated your comment.  And to answer what you had said about my husband...yeah, I know.  He is one terrific guy!!!  He helps me when the frustration sets in and when I need help getting an old bag off and a new bag on.  I can't say how great he is...but he is!

Hi, and thanks for your message.   Actually, I'm not really sure just what is going on with me.  I was told by the surgeon that my colon was removed and he performed the  colostomy.  He also said that he didn't know if he was going to  reverse the operation or not just yet and that was the reason he didn't close.



I'm not understanding just what he meant by that.  So, I just go along day after day.

Thanks Pinky.  I went to the website you stated in your message.  I actually found a group that is having a meeting on the 17th.  It is in my hometown which is about 20 miles away.

Greetings dear Mystified and a big hug to you!  There is much support here among us honey and you will learn and grow and have your good times and your bad as the rest of us do but please keep us close, there certainly are some incredible, super friends here sweetie

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  I have had my ostomy for 34 years and still have my ups and downs but I'm a bit too temperamental to let it get in the way of my doing anything I want to do.....I guess I'm a bull-headed little punk about it not getting the best of me MOST of the time, though in the past I had a more difficult time and have written some things in earlier posts regarding such things.  All in all, I'm more grateful for having the ostomy because it has allowed me to continue in life, though it isn't always easy, I wouldn't trade it for the only other direction my life would have taken and I would not be here writing this to you now had that have happened.    I never like harsh words being said to someone in pain or depression, that is all too often a bullet that sends someone deeper down, even if it's not intended to do so, kind words of support and good listeners will benefit people most, generally speaking.   You're going to be just fine and we will help you through whatever you have to dish out

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~Your Doe

Welcome to the forum!  I know how you feel!  I awoke from surgery, with TWO bags hanging off my belly!  Didn't have chrons or anything like that but, I had cancer & the radiation damaged my bowels.

I can imagine it is a shock when you know you're getting an ostomy, but to wake up from surgery and whoop there it is!!!...Another entirely different scenerio!

You WILL adjust sweetie!  I remember going through a very bad stage of depression in the beginning.

People likened it to the grieving process.  There are stages to the grieving process such as anger, denial, depression, etc.  Finally, you get to the acceptance stage.  How long that takes is different for everyone.  Don't let anyone tell you that you should adjust & get over it by now!  It took me every bit of ONE YEAR before I got to the acceptance stage.

This forum is great as well as the United Ostomy Association of America's forum (UOAA) http://www.ostomy.org/forum/index.php

Both of these forums are filled with caring, genuine people with ostomies.  You can ask ANY question, no matter how gross you think it is and there is always someone to help you!

I don't think I would have made it through without these 2 forums! And as an added bonus I've met some TERRIFIC FRIENDS along the way!

(you know who you are!)

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Thanks Janice for the support.  Like you said, it might take a year to get over the fact that you have a bag hanging on the outside of your body, or that you make have a drastic leakage while out in the puplic or even at home.



Different things have been popping up with me since August.  I'm still on the depression pills, but I don't feel like they are helping  me very much.



I just can't understand why my stoma is still bleeding since my August surgery.  Then I did a dumb thing and by mistake, stuck my fingernail in the edge of the stoma and it started to bleed.  Should I call the doctor's office or call the ostomy nurse?

I know that a small amount of blood is normal for a stoma, but I'm talking about like tiny little droplets of blood, like if you were to push a tissue against the stoma. This is because it's a living organ. But, if you're referring to a larger quantity of blood seeping from it - like more than a teaspoon- then it's definitely time to get that looked at!



As for everything else, well, I know that telling you how it's going to get better doesn't do much to help you in your present state - but it does indeed get better. I might be the only person who uses this site regularly who does not have an ostomy, but I am here because my husband has one. He is an ileostomate, and received his due to untreatable colitis. Even though I wish it were under happier circumstances, I am glad to meet you, and hope that our online community provides you with some of the answers and solace that you seek during your recovery!



Liz