Seeking Advice and Support for Ileostomy Adjustment

Nov 10, 2022 11:27 am

Hello, I'm Jazmine. I'm 22 years old. I just had my birthday at the end of February this year when I got sick. I was diagnosed with IBD. They couldn't pinpoint if it was either just acute severe UC or Crohn's so they just classified it as both. Anyways, I had my ileostomy surgery in April. I can do try reversal at any point now but my first surgeon said he didn't think the outlook was very good. I go see my other surgeon in February. I can't believe it has already been this long since this all happened. It seems like I was just sitting in the hospital room begging God to make these medicines work. Now here I am months later realizing how much better I feel. I can actually eat! I am so much stronger! I can think so much clearer. My question to you all is, how can I help myself to normalize this? Any tips would be very appreciated. I'm still having a very hard time mentally and emotionally. I panic every time it gets close to the day I need to change. I am so scared sometimes when I take my bag off. I was dealing with a prolapse sort of recently. So you can imagine what it looked like when I took my bag off. Going to the hospital again was very strange. Nobody in my hometown seems to know very much about ileostomies. One thing that bothered me a lot was the fact that they didn't tell me anything before they started touching my stoma. Both hospitals here. I feel like I have to be so careful with my stomach now. I don't have any support groups in my area and I don't know anyone my age or close to it who I can talk to. I'm hoping I can make some friends here! Thank you for taking the time to read this if you did and I appreciate any feedback you guys have! I apologize also because I wrote a book haha- I could go on and on!!

- Jaz :)

Nov 10, 2022 12:20 pm

Hi Jaz - and welcome to this site. I know exactly what you mean by no one telling you anything and no help from anyone. I felt exactly the same and still do. Most of my own ostomy education has been gathered from information on this site for which I am eternally thankful! How great is it that you can ask any question (some totally embarrassing) in total anonymity ???!!! and get multiple answers and then come to your own conclusion in your own time? Quite different from sitting before a doc who barely knows you and being afraid to say anything "stupid" often leaving the office with even more questions than you had to begin with? Here's just one example: In the beginning, I did not know (and was not told) I could actually take a shower with no appliance covering the ole' stoma...yes I took many a shower with my bag on having wrapped the whole paraphernalia in Saran Wrap!!! What a total waste of time and good Saran Wrap. After reading it's okay to get your stoma wet (on this website) I relish the days when I remove the bag and stand under that warm water and let it just run on ole' Seymour (my stoma's name)! Anyway, again welcome to the site. I hope you will find it as helpful as I do!!! There is much to be learned and this site will surely help to expedite the learning process!!! jb

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Nov 10, 2022 1:10 pm

Hi Jaz

I'm still constantly amazed how some doctors know so little about ostomies. I had my ileostomy in 2017 due to Crohn's disease. The surgery literally saved my life. It does take a while to adjust to your new life, but think of the alternative, right? Welcome to the club, my friend! Please feel free to ask me anything about your ileostomy, food choices, support, or even if you just need to vent. You've got this!

Nov 10, 2022 3:20 pm

I was your age when I had my ileostomy surgery.  It'll take you awhile to get used to it, but you will.  It'll be your normal.  You've obviously already figured out that doctors/surgeons know next to nothing about managing an ileostomy.  Sometimes they will site a stoma in a terrible spot, so I hope that yours is comfortably below your waistline and in a convenient place for changing, etc.  You ought to click on 'Premium Content' and peruse all the info gathered there, and don't hesitate to ask questions here.  You'll get answers.  Stay well.

Morning glory
Nov 11, 2022 7:46 pm

Welcome to the site, I had my ileostomy in 1987. I have found that most health professionals know very little about ileostomy vs. colostomy. You will learn much on this site. I think you will adjust in time and it will make you feel so much better.

Words of Encouragement from Ostomy Advocates I Hollister
Nov 12, 2022 2:53 am

Hi Jaz,

First off, you're not alone. Everyone on here will help you any way we can. The important thing is you're feeling better. It's a lot to take in when you first get your changes your life. In good ways and bad. Despite them becoming more popular, ostomies are still an ugly duckling in the medical community. It's hard for anyone to understand all the aspects associated with living with an ostomy unless they have one, so the medical community just doesn't do a good job of educating new ostomates. They go home at 5:00pm and don't give it a second thought, so you'll figure out pretty early on that you are your best advocate for your situation. You can't rely on any medical professionals to understand your situation, despite them trying their best. So simply lower your expectations for the medical community and you won't be disappointed (as much). Welcome to the jungle.


Nov 14, 2022 2:38 am

Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. Also, You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. We're here for you. Best of luck.