My best advice for new (and old) ostomates

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I have made an entire blog by talking about things to know and understand in the world of ostomies. But if I had to sum up the most important pieces of advice I have for those living with an ostomy, it would come down to these three things: 1. Have a positive attitude, 2. Build a support system, 3. Learn by trial and error.

what you need to know about ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyThe first two are pretty self-explanatory. Staying positive and making the most of the situation is crucial. Let’s be honest, if you’re faced with getting an ostomy, you’ve been dealt a bad hand. And no matter what you do, you can’t change that. So you have a choice: accept what you’ve got and make the decision to continue to live a happy and fulfilling life or not accept it and be miserable. Either way, at the end of the day, you still have the same hand to play, so might as well make the most of it.

Having support around you makes a big difference, as well. For those of you who have family and friends close by who are positive and understanding, consider yourselves blessed. Don’t ever take them for granted. Even though they may not understand everything you go through, having them in your life will help you continue on when times are tough. But regardless of whether you have that support or not, it is also important to have support from others who do understand what you have gone through. Whether these are friends you meet in person at some sort of support group, or others you find through online blogs or groups, their input and support will be invaluable. For years, I didn’t reach out to anyone about living with Crohn’s disease, and I found out later how much I had been missing out on. All of my ostomy and IBD friends hold a very special place in my heart and I would not give up my relationships with them for anything!

And finally… trial and error. Oh my gosh, this is so important! We all have a different story. We’ve all dealt with different symptoms, taken different medications, been through different procedures, and had different surgeries. No two ostomies are alike.

My goal, here, has always been to tell my story in order to show that having an ostomy does not mean that you have to give up anything in this life. But my experience is not going to be your experience.

I wish I could tell you exactly what it’s going to be like for your after surgery and that you’ll be able to stay off all medication and not have any complications with your stoma. I wish I could tell you that if you use this product and do this or that to the skin around your stoma that you’ll be able to keep a bag on for 7 straight days and never have a leak. But there is no set formula. What works for me, may not work for you or for the next person.

There are so many factors that make a difference: Is your stoma protruding or flush with your skin? Is your output thick or liquidy? Does one ostomy bag stick better to your skin than another? Do you sweat a lot? Are there any creases in your stomach? Does paste work best or a barrier ring?

There is a lot of trial and error involved. I have tried so many different things. When I first had my surgery, I got tons of samples of bags from different companies and different options from within those companies. I’ve tried one-pieces and two-pieces. I’ve tried pastes and barrier rings and stoma powder and barrier wipes. I’ve tried eating at different times during the day. I’ve tried eating and drinking different things. I have tried several options in wraps and belts and other accessories. And you know what? It’s been close to three years now since I’ve had my surgery and I feel like I’m just finally figuring out everything that works best for me and getting myself into a set routine of emptying and changing the bag.

I’d love to say there’s a magic number, two or three years, that it takes to get into that sort of routine, but again… my story is not your story. I am always happy to share the things I have learned and little hacks that I have found along the way, but I hope that no one feels that I have steered you wrong simply because it didn’t work the same way for you.

So for new and long-time ostomates alike, don’t think I’m saying to not get advice from others who have been through this. Many of the things I have learned from others and what they have done has made my life a lot easier. But understand that it may not work the same for you and be willing to try new things. Don’t be discouraged if someone else’s “life-saving accessory” actually causes more trouble for you. Realize that your recovery from surgery may take longer than someone else you know. And while one person may be able to eat all of the raw veggies they want, another one may get a blockage every time they try.

One thing about living with chronic disease and with something like an ostomy is that you get to know your body really well. So listen to it. In fact… that might be my fourth piece of advice.

If you could give one piece of advice to other ostomates, what would it be?

27 thoughts on “My best advice for new (and old) ostomates

  1. Larry Lindsey

    I have learned so much from this site. I have referred friends with pertinent concerns to it. Thanks Stephanie.

    Reply
  2. Debbie Wren

    I am scheduled for ostomy surgery 6 weeks from now. Your blog is an incredible help for me. Thanks so much for all the info!

    Reply
  3. mike

    One piece of advice try to stay away from caffeine or anything gasey few hours before bed if not your b a g fill up with gas and get rock hard in middle of night ..ive found anytime i had a leak thats been the case ..good luck to all !

    Reply
  4. Marilyn (in Ohio)

    I have just found this blog. I’ve had an ileostomy since 2007, was 65 years old . It’s a life change, but your tips are very on the mark. Most of the time I don’t even think of it (except when I spring a leak!!) My best tip is not to overload at a meal – I found this out the hard way. At least that has been my experience. Also if you need to lose weight, do it while you can. I’m afraid my tummy size causes more problems than would normally happen.

    Reply
    1. Marilyn (in Ohio)

      Replying to my own comment! I failed to mention that I had to have a revision in Jan. 2014, from a double end loop to a single opening stoma (the loop part of it had essentially died, quite a long story, but for another time). I am STILL trying to figure things out! I have more leakage problems with this one & now I’m just getting angry. Is it food, weight, supplies….what the h…. is going on with me? So I’m really trying to delve into things to find the right answer for me, YouTube videos, blog articles, etc. Trying to get a bead on what will work best for me. Actually, the professionals don’t seem to provide the information I need, guess the have to keep it pretty generic to cover everybody. If anybody reads this & has any suggestions, please share.

      Reply
  5. Lou Ann Ciesinski

    I am new to this site and have been trying to deal with all of my issues on my own. My family has been very supportive but they cannot fully understand what I am going threw like someone who also has an ostomy. I had my Ostomy surgery about 6 months ago. Within the first month after surgery I lost 20lbs. But I have gained all of that back since I regained my appetite. I have severe back issues and cannot do many exercises so I have been pretty much sedentary which bothers me a lot. It is finally getting nice outside so I am hoping to start walking for exercise but it will be a slow process since I walk with a cane. I have also been having issues with getting my clothes to fit properly with my Ostomy. My pants are snug over the Ostomy and cause issues with the output flow and if I wear my before surgery shirts you can tell I have an ostomy. I am not shy about telling people I have one but i don’t want everyone to be able to see it. Does anyone else have these issues and what have you done to address them?

    Reply
    1. Stephanie Hughes Post author

      Hi, Lou Ann, I’m glad you’re here. I know those first few months are difficult, as you recover and try to figure everything out. I’m sorry you’ve had to deal with the weight loss and the back pain, but it does sound like walking is a good option for you, regardless of how fast you walk. I found just moving however I could to be the best thing. I know you posted on The Stolen Colon Facebook page about clothing options, so I hope you found some good advice there. Please reach out with any more questions.

      Reply
      1. Lou Ann Ciesinski

        Thank you Stephanie. I have found some clothing options I actually made pouch covers for my Ostomy bag and cut a hole in my pants so my Ostomy bag could still be on the outside of my pants. I also bought some baggy shirts to wear. I am not happy about the baggy shirts though and you can tell because of I have gained back the weight I lost. I have ordered some maternity panels to try those in a pair of pants. Hopefully they will work and I will be able to wear my regular shirts again.

        Reply
        1. Stephanie Hughes Post author

          I’m glad to hear you found some good options! I hope the panel will work for you, as well.

          Reply
    2. Anita Webb

      Hello Lou,

      To pick up on the clothing concerns I too have and still struggle with clothing.
      I found that stretchy jeans or linen trousers that are part elasticated work best when u have Ostomies. I chose more floaty option styled tops and have leggings with smock dresses as opposed to firmly fitted pieces of clothing. 😀👌

      Reply
    1. Marilyn

      Mike, I assume the rectum was removed also? Mine was & I still have what I would refer to as a “dampness” around the closed-up site. I’ve always wondered about that. I don’t really have an answer for you, but it should be interesting to see more comment…

      Reply
      1. Marilyn

        I think I misunderstood this question. It seems that Mike might have a urostomy. (sp?). Sorry if I mixed it up!

        Reply
    2. Patsy Gazaleh

      Yes it is. I had a lot about a month after my surgery. I still have mucus drainage 2 years post surgery. It’s hard enough to have to poop in a bag, then your body betrays you and you have to deal with a third opening and more mess. Some people only have this for a little while, other’s it never stops. My GI and surgeon say it’s very common

      Reply
  6. Anita Webb

    Thank you for sharing you’re ostomy views. I have an ileostomy and due to have a bladder bag.
    I’m studying at uni and have chosen to cover Ostomies and body image for my dissertation.
    I’m sure I’ll be referring to your site regularly whilst carrying out my studies.
    Xx

    Reply
  7. Lou Ann Ciesinski

    The past couple of months I have been having issues with stomach bloating and severe pain. I am not sure if it is related to my Ostomy or not. I finally made an appointment with a gastroenterologist and I will see him tomorrow afternoon. I have cut out most of the foods I was eating but it didn’t relieve the bloating or pain.

    Has anyone else had these issues?

    Reply
    1. Marilyn

      I didn’t have pain exactly, but bloating and feeling over full after eating just a small amount. Don’t want to panic you, but mine turned out to be ovarian cancer! Glad you’re having it checked out.

      Reply
      1. Lou Ann Ciesinski

        Marilyn, what tests did they perform to find the ovarian cancer? I don’t have my uterus but I do still have my ovaries.

        Reply
        1. Marilyn

          I started with the gastroenterologist because of the bloated feeling & feeling over full, had an endoscopy which showed nothing unusual, so he ordered a cat scan. Referred to my gynecologist, who did more testing, endometrial biopsy, vaginal ultra sound, then an aspiration of a couple of fluid pockets in the abdominal area. This is where they found cancer cells & proceeded from there. Had a total hysterectomy then started chemo about 3 weeks after that. Still have three more to go.
          I don’t mean to frighten you, but it happens. Oh, I know…I forgot!! I had noticed a swelling to the right of my stoma, thought it was connected with that, maybe a hernia. NOT!
          Your symptoms may be nothing like this, but it doesn’t hurt to find out. Wishing you well….

          Reply
          1. Lou Ann Ciesinski

            Thank you very much. I am hoping it is nothing really bad but with my luck anything could be wrong. Once I find out what is going on I will post an update.

  8. Mike

    Best advice I could give is to be rave enough to ask questions. I remember how I felt there was nobody else who knew what I was going through after my first surgery. I did learn by trial and error but didn’t know there were people going through the exact same thing. I could have saved myself a lot of frustration and not hid from the world.

    Blogs and websites like this are a God sent!

    Reply
  9. Bridget Janiak

    This blog is wonderful – thank you so much! I am going to see my surgeon today to talk about my colectomy surgery (diverticulitis) . I have extensive abdominal adhesions (scar tissue) from previous surgeries – and my transverse colon was perforated over 20 yrs ago with a laparoscopy surgery that had to be stitched back up ( it was a 3 inch cut) I know this won’t be an easy surgery – but I have been putting it off for over 4 yrs – can’t wait any longer. I have been reading over the posts and comments and will be armed with questions for my surgeon. Thank you all for sharing – its inspiring!

    Reply

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