Last week I shared part one of my fistula story.
Today I’m sharing part two. The recovery from my fistula surgery was hands down one of the hardest mental and physical things I have ever done. This was mainly because the pain from natural childbirth was the basis for my previous pain scale but my fistula surgery completely reset my pain scale. After the pain, I also struggled with many unexpected symptoms…
Read on to hear part 2 of my story and what my long term fistula plan looks like…
Disclaimer: There are some pictures of stool on peripads that may be disturbing to some people throughout this post. The pictures are here to provide education to those that haven’t seen or learned about fistulas in their practice.
Part 6: My recovery
For my recovery, I journaled daily, then weekly. Some of the sentences are fragmented while some are very detailed. In my search to find out more information about fistulas, these were the details that I couldn’t find but desperately needed.
Day 1 (Saturday): I was so very tired. I spent most of the day in bed but even holding the baby and changing the baby was hard. I was physically very, very tired. I laid in bed with my eyes closed listening to audiobooks and drifted in and out of sleep. I breastfed the baby as he needed and my spouse did all of the house work and caring for littles. Sitting was a little hard. I took Motrin/Tylenol scheduled as well as gabapentin for nerve pain.
Day 2 (Sunday): I was very, very tired and very dizzy on the gabapentin. I pooped some gauze (much to my surprise) and then a real poop that was mainly formed. Pooping was painful, as expected. I continued to lay in bed and listen to audiobooks in between nursing the baby.
Day 3 (Monday): I was less tired and less sore today but fatigued easily just walking around the house. Pooping with slight pain, but really more fear and anxiety than anything. I had some gas pass through the vagina – not sure what to make of that because the surgeon said I shouldn’t have any of that. Taking Motrin/Tylenol scheduled but less strictly. If I go more than 8 hours without medication there is a big increase in the amount of pain I experience.
Day 4 (Tuesday): Took the last of the gabapentin in morning – overall this really helped with the unexpected nerve pain. Felt better moving around the house. I laid around on my stomach on the boppy lounger – the best discovery I made for a comfortable recovery position yet. My hips were starting to hurt from laying on my side. Had some more gas pass through the vagina but less than yesterday – still not sure what to make of this.
Day 5 (Wednesday): Had more gas pass through the vagina with some small particles of feces. Had a breakdown and cried for 20 minutes because I wasn’t sure if the surgery worked. Had a long talk with my husband afterwards – he helped me smile, brought some humor to the situation, and encouraged me not to give up hope until the whole 6 weeks of healing/recovery was completed. I found two Facebook groups about obstetric fistula and fistula/abscesses for support (I haven’t been on Facebook in 9 years since I last deleted my account but I couldn’t find support anywhere else). I made a new Facebook account and asked to be a part of the groups – requests pending as they are both private groups.
Day 6 (Thursday): I had the worst pain with a bowel movement yet. Had to lay down on the floor of the bathroom with a wet washcloth on my head to manage the nerve pain. Had some actual stool pass through the incision and struggled with disappointment and grief all day even though it’s been 6 days from the surgery. Hubby kept my spirits high with jokes and laughs as much as possible. Tried to distract myself with the beautiful snow, reading and prayer. I did a sitz bath to clean the vagina and tissues even though my surgeon said not to. I blame the Florence Nightingale in me. I only soaked for 5 minutes and felt much better afterwards. Had the worst pain of the week in the afternoon and evening pain. Pain was mainly in my butt cheeks and was clearly nerve pain. I used a heating pad to help the pain but still found myself using mindfulness to work through most of it.
Day 7 (Friday): One week post-surgery. Had a much better pooping experience in the morning – fully formed and less pain. Still had shooting pains for about 10 minutes after bowel movement. I took an epsom salt sitz bath after the bowel movement for 10 minutes and had a dime size amount of stool pass out of the vagina. Although disheartening, I’m trying to stay optimistic and look at ways to promote good healing. I brewed a large pot of ginger tea which is good for digestion health and healing and plan to sip cups throughout the day. I also did some research on using essential oils and found that peppermint, lavender, lemongrass and cardamom are helpful in different ways. Lastly, I found that some good old fashioned icy hot on the butt cheeks helps with some of the soreness from laying on your side so much and the nerve pain – who knew? I also had a little burst in energy and less fatigue today and both of those were a welcomed blessing. I’m planning to continue the sitz baths after bowel movements. At this point, if there’s gas and stool coming through the repair, the repair needs to stay as clean as possible. I’ve also found that I need 6 metamucil cookies a day to keep the stools where they need to be. That’s two cookies with each meal.
Days 8-10 (Saturday thru Monday): Everything seemed to get a little bit better and a little bit worse. For the pain, the pain seemed to lessen overall but was the worst in the late afternoon. Of all things, Icy Hot seemed to help the most with the musculoskeletal pain from laying on my side so much. What got worse was the pooping. Saturday and Sunday I had small dime sized amounts of poop come through the fistula. Monday was the worst by far. I woke up and had 4 bowel movements in 2 hours. This is basically what you’re trying to prevent because every bowel movement causes trauma to the area. I had more poop pass through the vaginal opening that ever before and simply cried every time. I had tried to eat less seeds/food with skins and more protein over the past 2 days and this seemed to have made things worse. I spent a lot of time praying and reading the Bible about the trial I’m in. And I resolved to stop messing around with my diet and just eat normally. I’m desperately praying for a better day tomorrow.
Day 11-14 (Tuesday thru Friday): With post-op day 10 being the worst day so far, day 11 was definitely brighter. Pooping wasn’t such a spastic event for my sphincter and wasn’t as painful as it had been the prior week. I had some general soreness near both sit bones. And I continued to have discharge all the colors of fall – yellow, clear, green, brown, bloody. Day 12 was the best day so far for pain. I was still tired but didn’t feel like I was in pain all day. I had the best day too with minimal gas but still passed stool through the fistula. My pain with bowel movements is almost gone (thank goodness). At this point, I’m mentally preparing to have the fistula long term. I’m hopeful it can still heal but am unsure to what extent it will improve. Day 13 was similar to day 12 – less pain, still passing things through the fistula. Day 14 was a milestone – it was the first day I feel like I could move around the house like normal! I also noticed I wasn’t taking Motrin and Tylenol around the clock to manage the pain.
Week 3 post-op: For the most part I found I could move around the house normally. I could do laundry, the dishes and clean the kitchen. I was able to put the baby in the Tula carrier and go for a short walk with the family. If anything has helped healing, it has been going outside and going for a walk. Your bowels need movement and exercise! I’ve also been continuing to eat a metamucil cookie with each meal to try and keep the stools bulked. I am still having gas leak out the fistula and a very small amount of stool (but only with bowel movements).
At exactly three weeks after my surgery, I had a post-op visit with my surgeon. He was able to do a rectal exam with a scope and assess the surgical site. He was able to visualize the flap and the plug suture sites and said that all the sutures were intact and the tissue was healing well. There was a small area of the flap that had “peeled” back and this was the reason for my continued symptoms. He answered all of my questions with expertise and patience. At this point, the flap could still heal but pooping less would help. He recommended Imodium twice a day. He also thought adding some vaginal estrogen would help since the vaginal tissue was atrophic from exclusive breastfeeding. He blessed return to jogging for exercise but still no weight lifting (lifting the kids was okay). At this point, he wasn’t sure if the fistula was going to heal spontaneously. We also briefly talked about long term risks for fistulas. No, there is not an increased risk for cancer. Yes, you can live with a fistula for decades – the main risks are yeast or bacterial vaginal infections and urinary tract infections. Yes, I am still a good candidate for future surgeries after having more children. And no, the procedure I had done with the plug and the flap doesn’t decrease success of future surgeries. My final post-op visit was scheduled in four weeks.
Week 4 post-op: At one month post-op there are a lot of things going better but overall the fistula is the same. I am still having stool pass through with every bowel movement and gas pass through multiple times a day. I continued the Imodium 2mg 2-3 x a day and have seen the stools bulk more so than before and stopped the Metamucil completely. My gas decreased considerably without the Metamucil. I was also less tired. Yes, I still have a 4 month old baby nursing at night time, but I didn’t feel like I needed to take naps this week. I also started some slow jogging and walking. I didn’t workout for distance at all but set my timer for 30 minutes a day and slowly increased it.
Week 5 post-op: At 5 weeks post-surgery, I was feeling much better physically. I had no pain but continued to have gas and stool pass through the vagina. I continued to do slow jogging and ate whatever I wanted to. I continued vaginal estrogen twice weekly as well.
Week 6 post-op: I did it. I reached the point of 6 weeks! At this point, I am still having the same symptoms as before. I may be having less gas through the vagina but it’s not so much less that it’s noticeable. I continue to leak stool through the fistula only when I have a bowel movement. I do not have incontinence but do have stool pass into the vagina for every bowel movement. I do not have any pain and I was able to resume intercourse without any pain either. At this point, I am not considering trying surgery again in the future any time soon. The symptoms are not desirable but they are manageable at this point.
Part 7: Things I didn’t expect in recovery…
- There are some really bad days and some good days – often times they are back to back.
- Bilateral nerve pain – this pain was worse than any pain I experienced with natural childbirth or otherwise. It’s hard to explain it in any other word other than debilitating.
- There is a lot of moderate yellow/brown/bleeding/mucous discharge that changed every day.
- Online support was the only place I could find support about all my questions and symptoms
- You have very little control have over how the tissue heals.
- You actually have very little control you have over gas and bowel movements.
- Metamucil cookies are actually yummy and I didn’t mind eating them a few times a day.
- You may spend a lot of time in the bathroom.
- Your first poop post-op is actually a large wad of gauze that the surgeon placed in the rectum for support and pressure of the surgical site. This caught me by surprise.
Part 8: Things that helped in recovery…
- Journaling.
- Your close friends and family – they might not know what to say but they can lend a listening ear and a warm hug (I did a lot of chatting on Marco Polo with close friends and family).
- Boundaries – I naturally don’t like being in the spotlight and I enjoy check-ins on how are you doing, but I don’t like being asked “How are you doing?” every day or week. My close friends and family know this and have been amazing. Instead of texting me to see how I’m doing, they have texted my husband who has graciously fielded every check in. This boundary turned out to be really nice for me mentally. I had enough to worry about pooping wise and that takes up plenty of my mental bytes and brain space. My husband simply updated me every day with a: “Lots of people are checking in to see how you are and are wishing you well.” That’s all I needed to feel all the love.
- Finding a support group (see list below)
- I have a funny story about this. I made a new gmail account to access facebook because I’m not on facebook and used the email: myfistulaemail@gmail.com. Facebook allowed me to make the account and then blocked the account because the email name didn’t comply with their “community standards.” Thanks Facebook. I think if I have an anorectal fistula I should be able to use the word fistula in any email form I’d like. And, you shouldn’t disable my account because you’re offended by the word “fistula.” It wasn’t my choice to have a fistula. I had a link to argue against the account blocking and was able to click through some responses and get it unblocked. Anyway, it was really funny their systems flagged the word “fistula.”
- Sitz baths
- I wasn’t supposed to take sitz baths the first few weeks because of how close the stitches were to the anus/vagina openings. The few baths I did take were amazing.
- Icy hot- this helped some of the lower back pain.
- Essential oils (peppermint, lavender) – these helped some of the cramping from the various fiber regimens.
- Ginger tea – this helped relax the bowels.
- The movie Anchorman (it was nice to laugh)
- Metamucil chocolate cookies (I ordered these on Amazon and set them up on Subscribe and Save to show up monthly)
- A child’s book called It Could Always be Worse: A Yiddish Folktale by Margot Zemach (this book helps a lot with perspective and is a laugh out loud read for the parents)
Things that helped me along my journey…
Practice guidelines for fistulas
Reading the practice guidelines for the colorectal surgeons was extremely helpful even if I didn’t understand everything that was in them:
- Clinical Practice Guideline for the Management of Anorectal Abscess, Fistula-in-Ano, and Rectovaginal Fistula (2016)
- The Treatment of Anal Fistula: Second ACPGBI Position Statement (2018)
I tailored my questions based on what the recommendations said and was able to understand the surgeon’s counseling of options a little bit better with this background reading. It’s also important to note this about guidelines: it’s a consensus of sorts from a group of experts in the field that review all the evidence and offer what they think is best practice for management. There’s some grey areas in practice guidelines that can only be filled by a surgeon’s experience or expertise.
I also received some sage advice from a very talented surgeon I know. She said that surgeons are going to have different opinions about interventions and surgery – just be aware that you could ask five surgeons the same question and get a different response. She said across surgery specialities this is also true. I found that to be advise to be tried and true.
YouTube videos
The videos were also very helpful to me because I am a visual learner. I found these during my recovery.
Fistula Webinar (*hosted by a United Kingdom surgeon and extremely educational – he also presents the risks of incontinence in very plain language*)
Rectovaginal Fistulas (a really nice overview done by a United Kingdom provider that has a goal to understand how a fistula affects women, to evaluate training in surgeons and to raise awareness about the condition)
Anal Fistulas (if you’re wondering why these fistulas are hard to treat, this video explains why…)
Other articles
As one would imagine, my internet search(es) amounted to hundreds of hours. There isn’t a lot of there that is helpful to the patient with a fistula and the research varies greatly depending on where it was done in the world and the types of procedures the surgeons utilized.
To me, these were the needles in the haystack and other than the practice guidelines, I read many of these over and over.
- Idiopathic fistula-in-ano (2011, World Journal of Gastroenterology)
- A nice overview of fistulas
- Anorectal Infection: AbscessāFistula (2011, Clinics in Colon and Rectal Surgery)
- A series of pictures explaining the different types of fistulas – see below!
- This article about wound healing in relation to colorectal surgery
National organizations related to fistulas
- Fistula Foundation: https://fistulafoundation.org/
- Operation Hope Fistula: https://operationhopefistula.com/about/
- World Wide Fistula Fund: https://worldwidefistulafund.org/home.aspx
Other websites to raise awareness about obstetric fistula
- Blog: https://sarahwithafistula.wordpress.com/2012/05/02/hello-world/
- Blog: https://mylifewithafistula.wordpress.com/
Support groups for fistulas
Patient handouts
- What is an Anal Fistula?
- Fistulas: Genitourinary and Rectovaginal (AUGS – American Urogynecologic Society, 2018)
Breastfeeding and fistula surgery
Some support group members said that you should wait until you are done breastfeeding to have to surgery from the lack of estrogen to the tissues. I wasn’t ever counseled that way and I don’t think it would have changed my decision. I did end up starting vaginal estrogen at my three week post-op appointment but don’t think I could have started it sooner than about 2 weeks due to the amount of discharge already coming out of the vagina. Regarding all of the medications I took post-op (gabapentin, estrogen, Imodium), I reached out to my local lactation consultant and lactmed.com.
My questions for the surgeons throughout my care…
In case someone is in a similar position, I kept a list on my phone of my questions. I hope these are helpful to someone else.
Initial visit with surgeon
- How many fistulas have you repaired? What types of fistulas have you repaired?
- What is your success rate for fistula repairs?
- What caused this fistula? Was it the precipitous birth? Poor suturing? Failure to recognize depth of laceration?
- What are the details of the recommended surgeries?
- What type of anesthesia will be used?
- What type of pain can I expect? How do I manage the pain?
- What is the expected bowel regimen before or after surgery?
- What is the timeline for repair? Timeline for recovery? How much time off work is recommended? Will I need help with the littles (toddlers)? Should husband take time off work and how much?
- What are the short term and long term expectations? Will the fistula heal with surgery? Will I need more surgeries? What is the risk for recurrence? Who do I follow up with if I have future concerns?
- Are future births possible? Encouraged?
- Would pelvic floor physical therapy help at all?
Day of surgery (these could be asked before as well…)
- What kind of suture and stitching do you use for the flap?
- How long does it take for the plug absorb? Do you sew the plug in place? How do you know if it comes out?
- With recurrence, it is the original fistula or a new fistula?
- Should I expect any stool or gas to come through after the flap or plug after the surgery?
- Is colace recommended?
- What are my exercise limitations? Is walking or the stairs okay? Rest recommendations? Carrying the car seat?
Post-op appointment at 3 weeks
- What happened to the flap anatomically? Are the sutures still in place but the flap moved?
- Is the plug still there? Success of plug long term?
- How long does the nerve pain last?
- Would estrogen cream help the healing? (I asked this because I was breastfeeding – breastfeeding reduces the estrogen to the vagina which could be a factor in healing tissue)
- Should I change my metamucil/fiber routine? Would anything else help to decrease bowel movements?
- Is there a long term risk of cancer if the fistula is not removed?
Post-op appointment at 6 weeks
- What are the long term risks for the fistula if no further repairs are done?
- Are there any long term risks for cancer?
- What are the future recommendations for surgery?
- Risk of abscess?
- Risk of other tracts?
- What long term follow up is recommended?
Cost
As a provider, I think cost is a really important aspect of health care. Cost often sways if people will choose a certain intervention or not. I was very blessed and my care was covered 100%. I did not pay anything out of pocket. Regardless, here’s a list of each intervention and the cost. (At the time of posting, some bills are still pending.)
- COVID test – $56.10
- URO/GYN consult – $247.00
- Colorectal consult – $ 734.68
- Surgery and anesthesia – $7,547.00
Closing thoughts
Surgery didn’t work. What am I going to do long term?
When you have had a fistula for a long time (for me, more than two years now), you think a lot about this question: “Why did this happen to me?” It’s a really powerful question. In short, I think it was a perfect storm and God’s plan for me. By perfect storm, I mean I had the right circumstances to have the injury based on my birth and anatomy. It’s a really hard place to be as an individual trained in birth but it’s equally humbling for what my hands are trained and trusted to do.
Ultimately, I believe in Jesus Christ and that my body isn’t of this earth – we go from dust to dust. I pray that this is an experience that I can use to give glory to God and if anything, the experience has brought me closer to God and the people I love in my life. I also believe that God will do good through this experience and that’s a testament to His goodness.
I don’t know what I am going to do long term, but in the near future I am hopeful the fistula heals or goes back to a smaller size than it was.
Something I would love to offer are some numbers about the incidence of anorectal fistulas in the United States or in the world. The best incidence I was able to find was that in people without Crohn’s disease a fistula occurs in about 1-2 people/10,000 people. (In people with Crohn’s disease, the risk in 1 in 3 people will develop a fistula.) Usually fistulas are more common in men that are middle aged. Often times the fistula develops from an abscess. Anorectal fistulas are more uncommon than rectovaginal fistulas and they are hard to treat. Those facts are heavy and humbling.
My goals are pretty simple – I just want to be able to run again and play with my kids and family. If the fistula doesn’t interfere with those, then I think we’ll get along just fine. The second YouTube video by Dr. Phil Tozer talks a lot about quality of life for women with fistulas – in my opinion, he is asking all the right questions from a shared decision making standpoint.
Don’t assume that obstetric fistulas are extinct from the United States…
With the continually high cesarean section rate globally, I think we’ll actually see the rates increase in the future. Some researchers are following this trend about the increasing nature of iatrogenic fistula in relation to the increasing cesarean section rate worldwide and I am curious to see their continued research.
If you think you might have a fistula…
A journal of your symptoms with pictures is a great start. If you’re worried about pictures on your phone, just use the “hide” feature so you don’t have to see pads with stool next to pictures of your kids at the playground. Next, seek out care from a women’s health specialist. Remember, there is a long road between diagnosis and surgical treatment. Outside of having an acute abscess that needs care, fistulas are rarely emergent although their symptoms makes it seem to the patient like they should be.
I also recommend collecting your medical records along the way. It’s really important to research all of your options and surgeons – that means you may decide to have care that isn’t in your state or country.
If you’re a birthing provider or a birth worker, it’s imperative you understand how to support women during birth and postpartum with extensive lacerations.
Please consider a review fistula warnings signs for women with 3rd or 4th degree lacerations when they are discharged home from the hospital. I also recommend a thorough review of systems during postpartum visits especially for women with 3rd/4th degree lacerations or use of forceps or vacuums during birth. Operative delivery, 3rd/4th degree lacerations and traumatic birth were common themes in many stories of the women in the support groups for fistulas. – often times, these women present to the emergency room shortly after birth with symptoms.
During a postpartum visit, I would phrase the questions like this:
“Do you have any concerns about the healing in your vagina or rectum from birth?”
“Do you have any concerns about peeing, pooping or passing gas since birth?
“Are you concerned at all that you are leaking urine, stool or gas when you shouldn’t be?”
I know these questions seem frank and some women might look at you somewhat horrified, but I found that the women in the fistula support groups were generally scoffed by their provider when they tried to voice these concerns. I also want to mention that this is a somewhat mortifying symptom to bring up with a provider – if a woman is voicing any concern, a full history and exam is likely warranted. If pointed questions are asked, it may diagnose more women sooner.
Lastly, there are many women that I found that have small fistulas and choose to live with them rather than have surgery.
Living with the fistula wasn’t something that I was counseled on and I learned more about life with a fistula post-surgery. If you’re a long time reader, you know I think excellent counseling is something we can almost always improve on in healthcare. For me, I would probably still have decided to try surgery. My fistula wasn’t going to close spontaneously. I don’t think I considered what living with the fistula would be like because I had already done that for two years and it was my daily life. I just hadn’t thought about what that would look like when I was 50, 60 or 80 years old.
Some women say it helps if you name your fistula. I’m considering that – maybe Betty? Right now, I think of my fistula as the “hole in the bottom of the sea” after one of my kid’s favorite songs we sing together.
Thank you for reading my story. Please share with it far and wide.
I’m happy to answer any questions via a DM on the insta (@amidwifenation) or via email (amidwifenation@gmail.com).
Hugs,
Jamie
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