A few months ago, I decided to write about living with a fistula.
Little did I know that it would become one of the most-read pieces I’ve ever written! So I wrote about it again for crohnsdisease.com; and decided I would do a post on here too all about living with a fistula and living with a seton drain.
I asked lots of you to take a second to fill out my big Fistula survey to share your top tips and advice to help others.
The response was HUGE! So much so, that this post couldn’t possibly cover it all- so I’ve narrowed it down to 32 of the best gems and words of wisdom I received around living with a fistula and living with a seton drain.
You might also want to watch my fistula video below of my own experiences with one if you’re currently living with a seton drain and fistula.
I hope this helps anyone newly diagnosed.
It is with excitement that as a type, I finally heard back from my MRI; which stated ‘no evidence of any perianal disease.’
In other words, for now, at least, they couldn’t see any evidence of a fistula on my scan. I say ‘for now’ as I feel it’s something that always lives with you mentally; and that you’re conscious of creeping back up!
So I really do hope that if you’re new to life with a fistula or even if you consider it part of your life, hopefully, this will still offer you some guidance.
Here are 32 tips from fellow fistula sufferers on living with a fistula and a seton drain…
1.Try and find a light-hearted way of dealing with it. I named mine after Sesame Street characters which not only made it easier to have an open conversation about the fistula with my friends in public but also made for some amusing sentences!
2.Have a backup supply of antibiotics with you if you go away so you can at least be getting any infection under control before you get to see a consultant again.
3.Make the best of the good days; don’t overthink it; try and get support and remember many can and are being fixed.
4.Stand up for yourself and fight for appropriate care. Don’t accept ultimatums, and don’t let anyone cut anything without clear, complete, understandable explanations.
5.baths baths…and bathe some more! Sitz baths are so important
6.Tumeric stings when applied topically, and has zero anti-inflammatory effect.
7.Join a message board with others who understand. Most relatives and loved ones just don’t understand, nor do a lot of health care providers.
Get therapy if you need it. This condition can not only cause issues physically but it can cause depression as well.
8.I can’t stress how important it is to find something that makes you comfortable even if it’s just for a short space of time it will help you get through it.
Baths, Sudocrem, a heated blanket and pain relief were life savers for me. Also don’t be afraid to get a seton! After about 2 weeks you’ll forget it’s even there and they do work! Be kind to yourself!
9.Use a hand-held shower head for cleaning and a cool hair dryer for drying.
10.Use lots of barrier cream to soothe the irritation.
11. Be aware of treatments available and ask questions of your consultant, don’t just accept any treatment without understanding it can achieve.
12.Keep it clean – wet wipes are your friend, but make sure you dry the area too. You can use Vaseline around it too to help the skin drying out. They’re incredibly common – even in those without IBD.
13. Rely on those who love you and care about you. Share your struggles with them. And don’t ignore symptoms or let anyone, including a doctor, feel like you’re making a bigger deal of it than it is.
14.Take it seriously. If it becomes a hardened and hot area it is most likely infected or abscessed and in need of antibiotics.
15.Don’t be afraid to ask questions or embarrassed – your specialist/consultant/surgeon sees them regularly. I’ve even had GP’s who totally get it.
16. Just because you have one doesn’t mean you can’t live a normal life. It is hard at times but it does get better.
17.Whilst it’s scary, it can be managed and life can adapt to a new normal! Mine is permanent with a seton, but I am currently pain-free without drainage currently and functioning well.
18. There are plenty of treatments available, but sooner the better is key to stop complications
19. You may have Crohn’s Disease and need to talk to a gastroenterologist about getting a colonoscopy or MRI imaging to get a real diagnosis, not just see a surgeon who wants to cut everything.
20. Advocate for yourself. If something doesn’t feel right, question it. Trust yourself and listen to what your body is telling you. It will be a rough recovery, so make sure you have a lot of support.
21 Read up about it as much as you can when you get diagnosed. I think not knowing enough may have contributed to prolonging my recovery.
22. Don’t under-estimate the time it takes for your body to heal. Even if you feel fine, just keep salt bathing and taking it easy. Rather do it too much than too little. I cannot reiterate that enough!
23.I got into a routine of drawing a warm shallow bath every morning and night and making sure I mixed in a large helping of table salt (you can get large 5kg bags pretty cheap – just get someone else to carry it home!)
24.I also bought small Dettol antibacterial sprays that fit in your bag so you can spray during the day and feel like you’re doing some good as you have to live your life! Lastly, you need to get over being squeamish about it. Squeezing it in salt water is the best thing to do.
25.Try and stay POSITIVE & know there are success stories. Try to have FAITH & always try and focus on the positives in your life.
26.For rectovaginal fistula, I would say use panty liners. I didn’t know about them for years but once I found them it made me feel so much more confident.
27.Heat packs are amazing!
28. Those who love you and care about you want to know what is going on.
They can’t help you or begin to understand if you aren’t open. Sometimes I go into a “clinical” mode when describing it – so as not to make things too graphic or uncomfortable for those I am sharing with. I only share the gory details with those I am closest with.
29.Get your friends and family to come with you to your hospital appointments so they have a better understanding. If you can’t say it in person tell them over text it might be easier.
30.I showed diagrams as I couldn’t communicate properly what it was- so this might help.
31.The Facebook group “living with obstetric fistula” has been a lifesaver for tips and advice
32. Abscess/Fistula Support for Women on Facebook. is another great facebook group- a great group of ladies from all over.
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Good tips on dealing with Fistula – seems to be aimed at mainly anal ones. Did you have many participants with abdominal ones like me ( enterocutaneous fistula )
I have an abdominal fistula right beside my stoma. I’m finding out not many do. Mine is due to surgery I had in 2016.
I have one due to surgery also. It is my second belly button just a little above the original belly button.
Hello that was great. Have been part of group for a few years now. Here is my Facebook group for those that believe in healing through prayer and faith. It has b web a joyful place for many women suffering. It is a closed group as well. Here it is seeking God’s joy through prayer for women struggling with fistulas.
God bless you and yay on being fistula free❤️
Great tips for surviving with the fistula. Do you have any recommendation of the hand shower for fistula patients? Thanks in advance for your help.
I had dealt with anal fissures and fistula for several years. I also found not bending forward and not lifting any weights (aka don’t put pressure on the abdomen also useful). And of course deep breathing just to reduce the pain. It’s a tough ailment to deal with
The only non-surgical procedure for the treatment of an anal fistula is Fibrin Glue Method. If the symptoms still continue, surgery might be recommended to treat the anal fistula.Dr. Sadir Alrawi, director of surgical & Oncology services at Alzahra Hospital in Dubai. The offering services include surgical oncology facilities such as Colorectal, Breast oncology, Head& Neck surgery, Urology, Gynecological Oncology and many more. Being best oncology surgeon with best team in Dubai, Dr. Alrawi promises to deliver best advices to oncologist patients
Anal Fistula.
I just got home from having Seton surgery.
I am devastated! I don’t know much about this…..I am very scared.:(
Thank you for all your advice. I will keep researching.
How are you doing now? I just had my Seton put in 2 weeks ago.
Me too today am devastated and very scared any advice please karen
I have a colostomy for 17 years. All went. It was due to abscesses on my colon. About 12 years I had a surgery for anoth abscess. It went. But later had another one form. It burst open. Was rusted to hospital. The surgeon left. It open. It still drain and odor is terrible. Any suggestion how to care for odor
You should see your doctor if you have persistent symptoms that suggest you may have an anal fistula. Your doctor will examine your anus and gently insert a finger inside your back-passage (rectal examination) to check for any signs of a fistula.
Your article is very enlightening. You are doing great job mate.
This is such a great post for those suffering with Fistulas.
Regular Sitz baths in Epsom salt have been a life saver. Also, stool softeners, This has helped me tremendously. I go back to the Colo-rectal Surgeon next week (9/29/21) He said previously I will potentially need 3 surgeries. The first surgery a Seton was put in; the swelling is now a lot better.
I developed an anal fistula despite the fact that I do not have Crohns or Colitis and it is making me miserable. It regularly swells up and aches before bursting into a painful open sore. I take regular sitz baths and try to keep it clean with wipes and such but now that I am pregnant I cannot take any anti inflammatories and am in pain. Any advice?