An Open Letter to All Colorectal Surgeons

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To Whom it May Concern (Are you a colorectal surgeon? You should be concerned):

A while ago I was talking with a close friend (I’ll call her Allie) about her latest experience seeing one of the best colorectal surgeons in the country. Allie’s fistula struggle had been a long one, and was complicated by Crohn’s disease. Her quality of life had been so low that year that she finally decided it was worth it to brave the trip to get the opinion of one of the best.

This surgeon gave her good advice, and did a thorough examination, but what they said to my friend has lingered in my brain for over a year now. They told her about a patient of theirs who had a bunch of kids and over ten setons. They told my friend about how active, productive, and awesome this patient was.

Let me explain how problematic this kind of anecdotal story is. Imagine living with multiple bands hanging out of your ass, all kinds of leakage (hours spent keeping things clean), all of the complications that come with Crohn’s disease, and being in constant pain. Imagine these conditions completely changing your entire life–having to quit a career you loved, being unable to do the things you used to enjoy, coping with the deep depression that comes with being in constant pain…

Now imagine a doctor telling you about a superstar woman, living with similar issues, but just rocking life anyway. Imagine comparing yourself to this mythological creature who has kids and a job, yet somehow has energy to go jogging with her bajillion setons just gently swishing along.

Whatever the intentions of the surgeon telling this story, the result is leaving the patient feeling like, “Oh. Great. So I’m just not trying hard enough. What’s wrong with me? Why can this woman be a superstar, but I am a wreck?” The other consequence of telling a patient a story like that is the patient ends up feeling their doctor doesn’t believe them. If you are telling your patient a story about how amazing this patient is doing, who has been through the same kind of thing you are going through, you are also implying that you don’t particularly believe your patient is as badly off as they say they are.

I spent three years with a fistula, went through eight surgeries (not including EUAs and L&Ds), and I don’t have Crohn’s disease to contend with. I. Was. Wrecked. I lost my job, my social life, and on many days my will to go on. I have spoken to hundreds of fistula sufferers, I run an online fistula support group with thousands of members, and I can tell you that stories like the one this surgeon told my friend are rare. More often than not this condition is debilitating, messy, painful, and depressing. I can also tell you that stories like this are very common–so many fistula patients are living with not just the awful symptoms of having a fistula, but with navigating a health system filled with doctors who won’t believe them about their pain levels. This is UNACCEPTABLE.

I urge you to please BELIEVE your patients. They know more about how their bodies are feeling than you do. You would do yourself and your patients a great service by taking the small steps towards learning what your patient is actually going through, and letting them know that you believe them–believe that their pain is real. It’s not that hard, just imagine having a tunnel that’s eaten its way through important bits, and you’re leaking fecal matter into places it shouldn’t, like your vagina. That’s a good start.

And for the love of all that is holy, do NOT tell them about this one superstar patient you have. Not only is it not helpful, it’s psychologically damaging.

Regards,

Leah R. Chatterjee

(And to my dear friend “Allie,” if you are reading this, you ARE a superstar badass warrior)

Aftercare Instructions

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Many of us don’t get proper aftercare instructions after fistula surgery. A friend in my support group shared photos of her aftercare instructions, and they were so good that I had to type them up to share with all of you. I turned them into images so that they can be easily saved and shared from most platforms. Please feel free to save and share them!

Please note that these instructions aren’t perfect, just the best I have seen so far, and they won’t apply to everyone. If you are unsure about your aftercare, I urge you to call your surgeon’s office to have them answer any questions.

(All of this information comes from a handout by Alberta Health Services)

En Español:

Instrucciones de descarga despuès de la cirugìa anal

(Informacion crèdito a Alberta Health Services)

Cuidandando tu àrea anal

1. Toma un baño de asiento tres o cuatro veces al dìa. Limpia la bañera antes y despuès de su baño. No use aceites, baños de burbujas, lociones, o polvos en su àrea anal.

2. Es possible que tenga una secreciòn amarilla en sù àrea anal. Es posible que tambièn tenga sangre en la zona, especialmente despuès de movimientos intestinales.

3. No demore la evacuaciòn intestinal. Vacìa tus intestinos pronto cuando sientes la necesidad. No te sientes en el baño por mucho tiempo. Siempre toma un baño de asiento despuès de la ecvacuaciòn intestinal. Trata de no aser tension ni estreñirte.

4. Use una compresa frìa en la àrea anal para ayudar con el dolor.

5. NO se siente en una almohada en forma de rosquillas. Presionan sobrè la àrea que esta sanando.

 

En Español:

Instrucciones de descarga despuès de la cirugìa anal

(Informacion crèdito a Alberta Health Services)

Llama a su cirujano si tienes: 

* Escalofrìos o fiebre (temperatura sobre 38.5° C o 101.3° F)

* Estreñimiento que no mejora

* Dolor que no mejora con medicamentos

* Cuàgulos de sangre viniendo de la àrea anal

* Drenaje de la zona anal que huele mal

* Sangrando abudante (remojando una almohadilla gruesa en menos de una hora)

* Problemas pasando la orina

** llama 911 si tienes dolor repentino en el pecho o dificultad para respirar**

 

En Español:

Informaciòn de seguimiento para la cirugìa anal

Procedencia: Alberta Health Services

Movimiento intesinales despues de su cirugìa

  • Después de la cirugía, puedes contar con un poco de de dolor con su primer movimiento intestinal. No demore teniendo una evacuación intestinal. Esto solo hace que su materia fecal sea más dura y causa más dolor cuando eventualmente tenga una evacuación intestinal.
  • Toma medicamentos para el dolor 30 minutos antes de evacuacìon intestinal
  • Vacíe sus intestinos tan pronto como sienta la necesidad
  • No te sientes en el baño por largos períodos de tiempo. Esto puede causar presión, hinchazón y sangradura. Siéntate en el baño solo el tiempo que sea necesario para vaciar los intestinos. 
  • Toma un baño de asiento después de cada evacuación para limpiar y calmar su área anal.
  • Trata de no estreñirse o esforzarse con los deposiciones. Debe tener una evacuación intestinal el segundo día de la cirugía. Llama a su médico si está comiendo fibra exta o está tomando laxantes prescritos, y todavía está estreñido.

Cuando tù lleges a casa

  • Después de la cirugía, debe levantarse y hacer muchas caminatas cortas. Levantándose temprano ayuda a recuperar su fuerza, estimula buena circulación, ayuda a pasar gas y ayuda a que sus intestinos comiencen a funcionar. Cuando el dolor se comienza mejorar, aumente lentamente la distancia. Haga que alguien camine con usted hasta que esté firme en sus pies.
  • Puedes aumentar tus actividades como te sientas capaz.
  • Puedes volver a tus actividades ordinaro si no hay dolor.

Cuando llamar a su cirujano

  • Fiebre (temperatura sobre 38° C o 101.3° F
  • Dolor que no mejora con medicamentos
  • Problemas para orinar
  • Coágulos de sangre viniendo de su área anal
  • Estreñimiento que no mejora
  • Drenaje de la zona anal que huele mal
  • Sangrado abundante (remojando una almohadilla de gasa gruesa en menos de una hora)

Fistula Friends: Some Crohn’s and Ostomy support!

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20140209-082021.jpgYou know, sometimes the universe has your back. I’ve been wanting to write about Crohn’s disease and ostomy tips for quite some time, but it’s hard to write authentically about what you don’t know. I could easily gather a lot of info, and provide you with an article you could’ve written yourself with enough Google searching, but that’s not really what this blog is about. It’s about helping you through this with some guidance from someone who’s been there.

That’s why I’m so excited that Jen connected with me recently. She writes a really wonderful blog on Tumblr that covers a lot of ground, and has especially great info Crohn’s and ostomy tips. I particularly love her attitude about it all, and I think you’ll find it refreshing.

Jen’s Crohnic Crohn’s blog!

Jen also pointed me towards this wonderful blog that has great info about ostomy products, tips, info on IBD, and has some great tips for diet and nutrition (especially if you’re vegan):

The Veganostomy Blog

I would really love to give extra voice to these topics (Crohn’s, ostomy, IBD), and I think a great way to do that is to interview several people in the community and share their stories. If you are interested in participating in this (and you may do so anonymously if preferred) please contact me directly at leahruthe@gmail.com

So much love and solidarity,

Leah R Chatterjee

Fistulotomy: a brief explanation

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1. A probe is inserted, and the surgeon will cut open along the entire length of the fistula, from the internal opening to the external opening.

2. The surgeon will then flush out the contents of the now-open tract, and flatten it out.

3. Finally, the surgeon will sew the skin edges of the tract to keep it flat, and ideally the fistula will heal over the course of a month or two into a flat scar.

How to Reach Me

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If you have any personal or private (or embarrassing) questions for me, the fastest way to reach me is to send me a message on my facebook page Fistula Survival Guide (facebook: @fistulasurvival)

You can also send me an e-mail at fistulasurvival@gmail.com, but I don’t check this as often, and it can take me weeks to get through all of the e-mail requests.

Please feel free to write me with questions, advice or tips, feedback, or general support. I might not be able to answer every question, but I’ll do my darnedest to try. Sometimes it’s nice to just have someone who’s been through the same thing to talk to, and I always can find time to do that for anyone who needs extra support.

Happy Friday!

Leah R. Chatterjee