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Please help: Life with an ostomy

So I just had a colonoscopy today. They told me that while the medications are helping, I have been on Prednisone for too long and it has caused what they fear is irreversible damage. I have a kind of tube area in the last 5-9 inches of my colon and it is very sensitive and causing all kinds of problems. The doctor flat out told me that he thinks I’m too far gone and that the only option is to get an ostomy. I’m absolutely terrified. That has been one of my worst fears ever since I was diagnosed. I have always been active, when I can, and I want to continue being active. Going to the gym, golfing, playing basketball, etc. Can I still do these things? I don’t know what all to expect but right now I’m scared and I need help.

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  • rhunter67
    2 years ago

    I went through the same fears. In 2008, after two long hospital stays in a short period of time, the doctors told me that an ostomy was very, very possible. I was petrified. I was 29, single and worried about my future. That surgery went well and no bag. However, fast forward 6 or 7 years, I have a ton of major stresses that kick things into gear and pow…I was in and out of the hospital for months and ended up getting an ileostomy. At first I was again petrified by the prospect, but was like ‘fuck it’, I have a child and I have to live. It wasn’t 100 percent I was getting one, but likely. I came to terms with it and when it came, I was ok with it. The first few weeks were rough in dealing with the crap and getting the appliance right to avoid leaks. You basically learn as you go, though I was lucky to have some great hospital nurses (I have been in that wing so many times I’ve known some of them since 2008) and an ostomy nurse who came to my house for a month or so afterwards. But once you feel physically good, you should be able to do just about anything. Worrying about the bag never really goes away when you’re doing stuff, at least for me, and some things like bending over to pick stuff up is a little more difficult cause sometimes you feel like your going to pop it, and getting used to sleeping isn’t fun. It has definitely improved my quality of life and I can eat what I want for the most part, my gut has been fine. You will be ok, and remember better a bag than a box.

  • BaJeJo
    2 years ago

    I have CD. I just turned 60 and have had on ostomy since I was 24 (36 years). I didn’t have much time to fear it- It happened rather quickly after I was diagnosed after lots of suffering and limitations. Since them I can’t think of any serious limitations. I hike, camp, Kayak, raised 3 kids (even had a kid with the ostomy), work, babysit active young grandkids, do yoga and work out at a gym, go swimming, use the hot tub, travel abroad….. It is a big change and can be a bit of a learning curve. My worst times with it were definitely during that learning curve and that’s when the most accidents occurred- all due to human error on my part and a couple of times faulty advice. With time and patience I learned what I needed to with support from nurses and fellow ostamates (subscribe to the UOA association and magazine!) It is a bit of a roller coaster but after the ride I think you will be grateful, happier and healthier with new energy and less worry – just give it time. After 2 years my doctor said we could try a reversal and see how I did. I said no, that my ostomy gave me my life back and the risk of fistulas, fissures and other problems that made sitting, walking, voiding etc all miserable experiences was not anything me or my husband wanted to ever go through again. Best of luck. Fear not and don’t let any setbacks along the path knock you down- you may just wonder what you were worried about and why you didn’t do it sooner.

  • MacDuncanHawkes
    2 years ago

    I feel you, for many years it was my biggest fear too. I was utterly terrified! Then in 2009 I ended up with an ilieostomy . ( that’s the kind from the small bowl to the outside of the body. Versus a colostomy which would be from the large bowel to the outside of the body) I have lived a fairly normal life with mine. If anything my quality of life improved. ( due to not having to always stop something or leave and Dash for a bathroom.) I drive, work-out, swim, bathe, am intimate with my partner, could play with my kids and I even worked as a fork truck operator with it. I promise if you do get one that it is the fear if the unknown that’s scaring you. Knowing the kinds if ostomies and the kind you would most likely have will allow you to start chopping away some of those fears. In this case knowledge is power. There are all kinds of products and accessories available to help you do just about anything in life you want 🙂 You can go on YouTube and find tons of videos of people explaining the how to of it or their personal story. For me that is what really took away alot of the fear. I have had mine 9 years and couldn’t be happier about it. The reality is most people don’t even know I have it unless I tell them. And people I did tell were very supportive Be happy to talk to you anytime about it. Good luck 🙂

  • Brooke Abbott moderator
    2 years ago

    Hi @cgh5059,

    6 years ago I was in your shoes and I was petrified before my surgery. And after, I had a rough time adjusting because I was still so frightened. But let me tell you something, I don’t regret the surgery at all! I lived with an Ostomy while raising a toddler, now I have a J-Pouch. And although they are not without their complications, my quality of life is 10x better! And to be able to be off Prednisone which does horrible damage to our bodies as a whole, is a wonderful thing! I know so many people with Ostomies who are physically active! There are advocates online who are ostomates who swim, play sports, have children…everything! The only thing you can’t really do is eat seeds! But seriously check out some advocates from UOAA, Crohn’s & Colitis Foundation, the IBD Social Circle and Crohn’s & Colitis UK who are active with their ostomies. There are videos from advocates like Front Butt Tuber & Vegan Ostomy who can show you how to change your appliances, avoid skin rashes, what Ostomy guards work best for activities and where to get Ostomy friendly underwear! Surgery always seems scary or like the end of the road, but for us it can really be the beginning of a better life!

    Please don’t be frightened of the Ostomy. Just think about the things you will be able to do while being a healthier person. If your doctor feels this is they way you need to go, trust that this is the best course of treatment at this time.

    ( Team Member)

  • rhunter67
    2 years ago

    Hi Brooke,
    It felt good to read that there’s someone else out there raising a toddler with an ilieostomy. I still have mine for the foreseeable future, but like with you, it’s 10x better quality of life. Just being able to eat comfortably again has made it worth it.

  • Weezie66
    2 years ago

    Having an ileostomy was my biggest fear but after I had mine placed 2013. I finally found out what QUALITY of life meant. I am able do all activities and feel good which is a new thing. It was like a light switch had been turned on. I was a new person. There will be struggles but realize it’s nothing you can’t handle. Good luck !

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