Is an Ostomy right for you?

By myjourney

1 min read

I have an ostomy, and I hate it. I will never get used to it. I resent it and I hate that it controls my life. I hate that I am constantly aware of it and that I worry about it every second, minute and hour of the day. I have read some stories on this website and an ostomy seems to have been their saving grace but not for me. If I knew then what I know now I would have never had this done.
So many regrets...

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SusanHU Community Admin
Thank you for sharing myjourney and we're sorry to hear that the ostomy has not been helpful for you. I know you've seen some of the articles on our site and that they don't resonate with your experiences but I wanted to ask if you've had conversations with your doctor about how you feel and how those conversations have gone. We're here to offer support and information but I'd love to know a little bit more if you don't mind! Thank you for being part of our community! - Susan (InflammatoryBowelDisease.net Team Member)
suzan Member
Oh, I feel your pain. I had two and so I understand your feelings about having one. I'm so sorry this has happened to you. My heart goes out to you. My hope is you can find a way to embrace it if it's not reversible. Big Hugs and <3
suzan Member
I just had a thought: I see a therapist who works with chronically ill people, and she's helped me enormously. I do my weekly injections with her and she's helped me overcome many obstacles. I also know a therapist at Doernbecher Children's Hospital in Portland who has an ostomy, and I've thought if I ever have to have one again I'd find him and get his help accepting it. So two ideas for you other than talking to your doctor. I wish I could hold your hand and be there with you. Sending love.
1. Kelly Dabel Moderator
 Thank you so much for chiming in Suzan. So glad that you've found help and that it's helping you feel better. We appreciate you sharing and being part of our community. Kelly, <a href='https://inflammatoryboweldisease.net' target='_blank'>InflammatoryBowelDisease.net</a> Team Member
myjourney Member
Everyone has been so kind, understanding and helpful. Unfortunately, my ostomy, is not reversible. My first ostomy was reversed and the reversal surgery was a nightmare. I became septic which resulted in the third surgery and permanent ostomy. I’ve lost my entire colon and much of my small intestines. The short gut (absorption of vitamins) causes malnutrition and severe chronic fatigue. I have been dealing with this since April 2011. I now have problems with pyoderma gangrenosum (skin ulcers) around the stoma. I am currently taking Stelara, so I am using the most up-to-date treatment. I see a psychiatrist and take anti-depressants. Crohn’s is such a wretched disease. I don’t think the commercials on TV depict how debilitating Crohn’s and IBS truly are. They show “healthy” looking people trying to find a bathroom. Maybe these drug companies need to read <a href='https://inflammatoryboweldisease.net' target='_blank'>InflammatoryBowelDisease.net</a>.
1. thedancingcrohnie Moderator & Contributor
 My heart goes out to you <inline-mention user-id="2238003" username="myjourney"/> . Crohn's is such a hard hard journey. And you are such a strong warrior for pushing through all that you have had to endure. How have you been feeling lately? It's been a while since this post and wanting to check in with you. I hope things have improved. Rooting for you always, Elizabeth (team member)