The first time I saw my stoma

Guest Post for WOCN Society Blog

I was very honored to be asked by the WOCN (Wound Ostomy Continence Nurses) Society to write a guest post for their blog. These nurses are a great resource for anyone going through surgery to get an ostomy and I am so appreciative of all they do. This blog reflects on what I was feeling right after my surgery and what I hope others will understand about what that experience is like.

It’s a very strange feeling to wake up after a major surgery and to find something foreign attached to your body. And I knew it was going to be there. (I can’t imagine what it would be like for those who went into emergency surgery and did not know what they were going to wake up with.) But I have to admit, I was pretty good at ignoring the bag that was hanging off of my stomach for a few days, before it was active and when the floor nurses were taking care of emptying it.

But then came the day when the WOC nurses came to see me.

Prior to my surgery, I had been given a lot of information about the surgery and about ostomies and I was also given an ostomy bag to take home. And sure, I held it up to my stomach to see where it would hang, but I didn’t actually stick it onto myself or practice cutting the opening. So when the WOC nurses came to see me, it was all new.

stephanie hughes stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonI remember so well that moment they pulled off the bag and there it was: my stoma. It was the first time I had really seen it, other than a few glances at this red circle inside my new bag. I could see how big it was and how far it stuck out of my stomach and how… scary it was. I think I held my breath for the first minute, but I kept it together while the nurses were there, trying to focus on asking them any questions that I had. My ostomy was pretty active during this first changing, so I just dove right into some of the difficulties with managing one. The WOC nurses were great and showed me how to clean the area and about some of the accessories that would help me take care of it.

But once they had gone, I broke down. I sat there with my husband standing next to me and just cried. It was the first moment of feeling like “what have I done?” and being truly scared of how this would impact the rest of my life. Even as I’m writing this, I feel the tears coming to my eyes because I remember so well that feeling of loss and of helplessness in that moment. But I don’t think the nurses realized exactly how I was feeling. I’ve gotten pretty good at hiding pain and emotions over the years.

And I had great nurses all along the way. The nurse I had before my surgery spent a lot of time with me and walked me through the process of picking my stoma spot. I previously thought that my stoma would be low, as in below my pant line. She took the time to explain to me about placement and why it matters. She helped me to understand why the spot we picked was the best spot. And I still think it is.

stephanie hughes hospital surgery colectomy stolen colon ostomy blogAfter the surgery, I had two nurses who came to see me and help me with that first bag change. They came back a day or two later and let me change it so I could get used to doing it, but they were there to help me figure it out and remember all of the steps. They were kind and open to any questions I had about the bag itself and about living with it.

Even after going home, during one of my first bag changes I saw some blood, which of course freaked me out. I called the WOCN department and someone told me that it was entirely normal to see some blood, but if it got worse to come back to see them. She helped alleviate my fears and that was actually the only call I ended up making.

I know I’m not the only one who has felt lost coming out of surgery. And that’s what I want others to understand. When someone goes through this surgery where a part of them is taken away, it’s almost like a death in the family. You immediately feel like your life is changed and there’s no going back to the way it was. A piece of you is forever gone. That’s a hard reality to come to terms with.

And that’s what I think is so important for the people taking care of these individuals to understand. Even if the patient is very prepared for this surgery and even excited about going through with it, nothing can prepare you for what it’s like immediately afterwards, when you’re in a lot of pain and on a lot of medications and there’s this squishy red thing hanging out of your stomach. So understand that they are likely having a difficult time adjusting.

Keep telling these people know they are not alone. There is a great support group out there, both in-person and online. Reinforce that there are lots of bag choices and they don’t have to stare through a clear window at their poop for the rest of their lives if they don’t want to. Keep helping them discover all of the great places to look for tips and tricks on living with an ostomy.

But mostly, just keep taking the time. Take the time to help them feel comfortable and try to understand what they are dealing with. Take the time to talk with them about how placement of the stoma may affect their experience. Take the time to make them feel like they are the most important person in the world. This may be just another day for you, but for us, it’s the day that changes everything.

21 thoughts on “The first time I saw my stoma

  1. avital

    Stephanie,
    Very nice post, thank you. You’ve described my experience w my lovely stoma. Like you’re saying, although I knew that it will be there when I wake up, seeing it is totally different. .overwhelming. .I look at my stoma as a life saver, otherwise I can’t go on. .
    Hope you continue feeling good and help others as you do now, it’s priceless!

    Reply
  2. Lauri

    I remember the exact same feelings and my surgery was over 20 years ago! It’s wonderful to have the stoma nurses contact information handy, even years later to answer questions
    and issues that come up along the journey. I have found my gaestro dr. and surgeons are not the experts in stoma care. Thank you to the amazing nurses who specialize in wound ostomy care. 🙂

    Reply
  3. Molly

    Stephanie you do such a great job of explaining things to those of us who have not had to go through what you have. Keep up the good work!! You are amazing in my book!

    Molly

    Reply
  4. nadine

    I got my stoma/bag back in 1992 when I was 20 years old. At first I could not look at it without retching. Then my mom reminded me that the anus is not known for being a looker 🙂 She was reading this book at the time that said people should name their stoma…as a way of acceptance. So I did. All of my family and now my husband know who ‘Fred’ is. I still think Fred is ugly, but I think he has given me a much higher quality of life…so I love him anyway.

    Reply
  5. Kishor Badhe

    Kishor
    Stephanie Nice job.
    I had my stoma 12 years back. When I first saw it had no feelings at all. I looked at as it is some thing different which I never imagined. I was numb. the post operative pain was excrusiating for first 3 days.
    The adjustment to the stoma for the individual lot of support from the family and friends. I owe to my wife Vaijayanti who stood by me. It was because of her I was prepared to get operated.
    It is a very different experience to get adjusted to whole new thing Anatomically, Physiologically and Psychologically.
    As I stay in rural area of India where the expert guidance is not easily available I have to learn by own trial and error how to take care of stoma. Now I well adjusted to it.
    I will always state I you need to undergo this surgery get it done life after is beautiful.
    Good day. Kishor

    Reply
  6. milissa

    Great post. I agree that even looking forward to the surgery does not mean you won’t have some misgivings. I have had a surprise one and planned one. In 2002 I had surgery for a resection with no bag expected. Complications a week later meant emergency surgery and a temporary colostomy for 3 months. Needless to say I was not happy. Although I did come to terms with it. In 2012 I decided to have the ileostomy after years of pain and diarrhea. This was I was prepared for but it was still somewhat of a shock. Something I did different this time was an epidural instead of a pump for pain. I loved having my mind clear.

    I always enjoy your posts. Keep writing and informing.

    Reply
  7. Anne D

    Thank you for sharing your story. I had similar experiences with my family and I also cried :-(. I am lucky to have an excellent supportive family who have helped me along the way.

    Did you have any complications soon after you were discharged?

    Reply
    1. Kishor Badhe

      On the 10 th post operative day I had obstruction. the pain was severe. My surgeon who had a great experience wanted to be conservative. then at the same time I had anaphylactic reaction to Ciprofloxacin wih laryngeal oedema. I came out of it. I prayed GOd for the relief of obstruction and some how he listened to my prayers and was relieved on the 3 rd night.
      after that I had no problem.
      Good Day. Kishor

      Reply
    2. Stephanie Hughes Post author

      I didn’t have any complications after discharge. Just had to take things slow for a while. I’ve had a couple of concerns pop up along the way that I reached out the the nurses and doctors for, but thankfully all things that could be easily dealt with.

      Reply
  8. Pól

    I can’t thank you enough for writing this, it kinda makes me feel ‘normal’ that other people had the same experience when first seeing their stomas.
    You’re a brilliant woman Stephanie and have inspired me so much by reading your blog. Thank you.

    Pól

    Reply
  9. Nancy Gibson

    I agree with you. I was excited to go into surgery knowing I would wake up with a permanent ileostomy bag. I was excited that I would not have to run to the bathroom 30 times a day and to have the diseased/abcessed/inflammed intestines out of me. But after I got home and settled into my “new normal”, it hit me hard as I contemplated all of the new supplies I will need for the rest of my life and the stoma I need to continually take care of. I’m still thankful but once in a while it hits me again about getting used to my ileostomy bag. My Home Care Nurse warned me that I would have ups and downs and I’m not alone and that helps.

    I appreciate your website. Thank you. I’m still trying to name my stoma:)

    Reply
  10. Liz Cooley

    I have had my colostomy about 25 years.. My question is – if I know I’m going to have to change my bag I try not to eat much the night before and then I wait about 10 o’clock the next morning to change. I usually set my alarm about 8:00 AM and then I have a couple of Diet Coke and some peanut butter to calm down my ostomy before I change.. Is there an easier way?

    Reply
    1. Graham Eatt

      You pretty much got it right, for me nuts can cause minor gas so only on weekends can I eat peanut paste. I find anytime after eating my stoma can get active, so just be prepared. My stoma only gets active for around 10-30 minutes then its finished. I can change my bag anytime I wish if I know when its going to be active. Although if I have 2 large meals in a day it could mean trouble with gas, blowout,constipation and active in a change. I change pouch every 2 days so second day I take greater care, even adding extra cresant shaped bands to save bag till due time. Showering with anything more than warm water can weaken adhesion. My biggest enemy is onions as I can get gas in less han 5 minutes. Garlic not as bad….I hope here suggestions help somebody…😀😀😀😁😉😉

      Reply
  11. Sue Molenda

    Great job, Marci! Keep sharing your story. It makes us feel less freakish and alone. 😜❤️❤️
    I took great pleasure in showing my new, grotesque alteration to close friends and relatives, once I grew accustomed to managing it. I was a little OCD about keeping it clean, though. Every few minutes, I’d run to the bathroom, check for poop, pop off the bag, and thoroughly clean it. This went on for weeks until I realized I was spending dlmost all of my time in the bathroom, wiping tiny bits of poop off my stoma, cleaning the bag until it was spotless… Over and over and over. I had to switch to opaque bags. Only then could I stop obsessively checking and cleaning the bag, and let it fill… Or… At least wait fifteen to thirty minutes before emptying and refilling the bag wth water and rinsing and rinsing and rinsing until the water ran out clean. By then, all the warm, soapy water would have softened the adhesive, allowing poop to leak under the wafer.

    I needed a new plan. Disposable bags, bags I could not drain. But still… I would pop those off and wipe out every little glob, and snap the empty bag back onto the wafer.

    Finally, Coloplast invented the one piece, opaque, closed end, disposable Mio pouch! It is glorious! I never touch it until it’s full… Unless the poop is firm and lumpy, and then I sculpt it to lie flat and blend into my body’s contours.

    By now you have guessed my secret. Having an ostomy has driven me completely insane!

    But it’s fine. Being nut beats being dead. It’s even a tiny bit entertaining to others.

    So I’m telling my insane tale of cancer, colostomy, and complete lunacy in my upcoming book, Anal Cancer is Really Sh*tty. It’s cathartic for me, and I hope it’s comforting to some others, and entertaining to all.

    http://www.analcancerisreallyshitty.com

    Reply
  12. Mike

    Thank You Stephanie for honestly sharing your ostomy experiences. I’m searching for a local support group as I face upcoming ostomy surgery to reverse a 20 year old J-pouch that’s caused ongoing chronic problems. Your posts give me hope for a better life after surgery!!

    Reply
    1. Robert James

      Hi Mike, for me it’s been 22 years with the J-pouch. I have just recently been diagnosed with colon cancer again. This time I am having an ileostomy. Surgery is this coming Wednesday and I am certainly scared of the changes coming.

      Reply
  13. Cynthia LaClair

    Unexpected diverticulosis. Resulting in ostomy for three months. When I first realized…and I was so sick it took weeks, I wanted to just die. I had no idea how I could ever live or return to work with it. My family kicked me out of that state of mind. And I did. I did everything I could do to get healthy in the 3 – 6 month timeframe my surgeon gave me. I did yoga, I went back to work, I did everything as before. And the reversal was done 3 months later. I am 4 months post reversal and back to my former life.

    Reply
  14. Deborah

    My ileostomy was elective. In fact, my actual response to my GI giving me the choice between yet another medication trial or surgery was “I want off the roller coaster. Let’s do it!” I filled my time and head with every YouTube video on people changing, cleaning, advising on, and reviewing products for ostomies. It was still odd seeing my stoma for the first time. Knowing I would have to have a completion proctectomy, there was a hollowing feeling of finality as I watched Stannis the stoma squirming. But we are friends now and I’m alive!

    Reply

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