Stoma + Fistula Progression.

This page is for photographs of my stoma and fistulas to help keep track of changes with them and to show others what I have/had. They are not for the faint hearted! ( you have been warned)

Please do not be offended by these photos, they are what I live with everyday and are not going to hurt you. If you think it’s gross and you would rather die than have a stoma (which believe it or not I have heard people say) then I seriously think you need to sort your priorities out! Despite the cons that come with having a stoma and/or fistulas, for many people they are the thing that has stopped you dying! I’m proud to be a person with a stoma. I may hide my bag under my clothes but that doesn’t mean I’m not proud to have it.

PLEASE NOTE: If you are going to have a stoma or having bowel surgery or anything like that in the future or just had it – that doesn’t mean you’re going to end up like I have! I am a rare case! Most people who have surgery to form stomas are straight forward – problem solved cases. Please don’t worry thinking you’re going to have the same problems as me! You  might get a fistula, people do! But I doubt you will get surgical problems like I have. So please don’t panic/freak out! If you have questions about your surgery, talk to your surgeon, colorectal nurse, stoma nurse, GP, a support group or you can even talk to me if you want. I’m always here to help! 

Well, let’s start at the beginning!

[Please note, most photographs are taken during bag/dressing changes so some photos will be a bit more yucky looking than the rest!]

[Hover your mouse over the photo for the month/year it was taken]

Well, I would, but I don’t have any photos of my original stoma (2008-2009) anymore! I must of deleted them.

In 2010 I had three abdominal fistulas.

These fistulas were contained within 3 bags, and the temporary fistula (next to my belly button) was contained with a dressing until it healed up. I had these fistulas from November 2009 until December 2010.

Photo’s from my BIG surgery in December 2010.


This is my stapled up scar from the first operation I had in Dec 2010. I had an ileostomy also, but it wasn’t included in the photo.

Next: After being rushed back into surgery, 10 days after the first operation, three times (i think) for more surgery and wash outs, I was left with an high output ileostomy (due to there only being one metre between my stomach and the stoma end) and 5 abdominal drains.

Without the drains in:

Home, from 10 months in hospital, for good!


check out dem hips yo. OCT 2012.
March 2014. Super weird angle shot but it's labelled for you.

March 2014. Super weird angle shot but it’s labelled for you.









You can still wear cute undies with bags okay? :)

You can still wear cute undies with bags okay? :)



So there you have all of the yucky shots of my fistula progression over the past couple of years.


17 thoughts on “Stoma + Fistula Progression.

  1. You are such a brave young woman. No one should have to bear the amount of pain you have had and continue to deal with. Your positivity shines through. Thank you for sharing your journey. Xx

  2. Thank you for posting all of these pictures. I was wondering what an abdominal fistula looked like because I know someone who has had one. I currently have a pouch-vaginal fistula…so everything is inside and I have no idea what it looks like aside from it being like a tunnel between the two organs. I’ve only had it for a couple of months, because it developed right after my surgery to get an s-pouch and diverting loop ileostomy this April. You have such a great take on life!!! I am so happy to still be alive too! A bag really is not that bad at all :). Seeing what you have gone through makes me stronger, because I know I can get through it just like you! So thank you!

    • Hi Faith,

      Thanks for your comment, apologies for the late reply!
      Whenever I’m at the hospital and it’s a new staff member or Doctor etc meeting me for the first time I’m sure they ask to look at my abdomen just to see what it all looks like for curiosity not for a real medical reason now! haha
      Stay strong and keep your faith up! Hoping everything improves for you soon,
      BedEleven :)

  3. Hey! I just came across your blog there now on Tumblr and already I know i will be checking it everyday! Its amazing to see what you have been through, you really are such an inspiration and such a good writer too! I was diagnosed with severe ulcerative colitis a few months ago and i’ve found it really difficult at times, especially the past few weeks. But just reading through your blog really helps so thanks for posting. Hope your keeping well and I look forward to reading your future posts! x

    • Thanks so much Sara, apologies for the super duper late reply! Sorry to hear about your UC diagnosis, I hope you’re doing well and improving at the moment sweetie! Much love and healing vibes! xo

  4. Hello, 4 years ago I was confined in a hospital for almost a year from intestinal perforation. The feces are all over my system poisoning me and I almost died. They put tubes for the abscess leak at my right abdomen and a colostomy bag at my left abdomen. I still remember the morphine tube that injects in my body every 7 minutes. Eventually, they discharged me and told em to eat a lot of food such as burgers and fats to build up the guts, fats and flesh supporting my intestines. After another 2 years they called me back to reversed my intestines, and now I’m able to crap through my anal. Until now, I got all this scars and it’s not really friendly looking. It messed my head a little bit and got a little addicted to morphine. Thank god for death metal music it saved my life going through the process.

    I am sure, they’ll be able to reverse that but you need to gain weight and try to look for other gastro surgeons for second opinions.

    I’m from New York US.

    You take care of yourself \m/

  5. Hi: my daughter is in the hospital as we speak getting a fistula repair, I’m so thankful for these pictures and so I can understand all about this surgery and know what she has been going praying she will come through this ok ,she has been depressed for a. While now.always tired,headaches no desire for company. GOD BLESS YOU ALL . Brave Women Keep your spirits up.

  6. Hi, I am in the same boat as you I have a colostomy and just developed a big painful sour that is the size of a nickel. It lays right where my wafer toe sticks. It is so painful especially when it leaks stool, and of course then leaks out of the wafer all over me. I am on flagyl and cipro but the pain is awful. How do you keep from going insane? I don’t know how much more I can take? Any advise?

    • So sorry to hear this Kim! :(
      I’m extremely lucky in not having any pain issues with my fistulas, except for when a new one forms (which is rare occurance thankfully) and when my skin is seriously burnt/damaged from my output.
      I would definitely reccommend going to see your stoma nurse, and trying out a few different ways to position or cut your bag so it doesn’t cover your fistula and look at products to use for that too. It will be a long hard road, and it may get worse, but it’s a road that we unfortunately have to take :( I’ve had these fistulas for about 3 years now and it took me a very long time to find a way to keep them covered and keep my skin happy and it’s even harder when the fistulas themselves are changing a lot too. But you’ll find something that will work for you at some point. Don’t lose hope!

  7. Hi Hayley,

    I hope that you still use this site. I have an ileostomy and I have enterocutaneous fistulas and I could really use some advice and just generally speaking, I could use some encouragement from someone who has been there. I had an ileostomy in 08 (27 yrs old) and did well for 6 years. Last summer, I ended up on a ventilator, having 18 surgeries and now, though I’m still making it through, I have a stricture in my ileostomy and abdominal fistulas. Can you please email me and I can give you details.

  8. All I can say is Wow. The more I learn about this type of condition, the more I am amazed at the ability to cope and move on so many of us achieve. I have rectal vaginal fistulas and an Ileostomy – 7 failed surgeries in 5 years. I’m still hopeful that one day I won’t have the bag, but the ability to live life is it’s own reward. Wishing you strength and happiness in this little life we live.

  9. Hello I was just wondering if you could give me some advice on fistula care. My mother is 61 years old. 2 years ago she went septic from a perforated bowl. We discovered she had diverticulitis. After surgery she had the ileostomy. She developed a fistula. A year and 2.months after her Dr. Repaired the fistula along with reconnecting the bowel. She then developed another fistula. As of today she has three fistulas and the ileostomy. One fistula is very close to the ileostomy bag. She struggles daily with bags leaking. I wondered of you had any problems in the beginning and had any ideas. This all has left her very depressed. I know that my email will not be posted but I am going to post it anyways. just hoping to find some ideas. Her nurse has tried many different ideas. Problem is this bag leaks thus leaking onto the ileostomy. Then all the bags has to be changed daily. And she now has an ulcer near the one fistula.

Want to say hello? Or ask a question? Or leave me an answer? Post it in the box below! All comments are welcome but please refrain from using bad language and please don't post spam here! I usually reply to comments within a day or two & I love receiving comments! :)

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s