Enterocutaneous Fistula: Seeking Firsthand Experiences and Management Tips

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500
Jayne
Feb 02, 2024 12:20 pm

Do any members on this site have firsthand experience following their surgical interventions - after extensive division of challenging adhesions, resulting in bowel puncture holes, mended, or missed - whereby you have gone on to develop a connection between your bowel and the skin which is known as an enterocutaneous fistula? Because I have not had firsthand experience of managing such an undesirable outcome having fecal material seepage or fully blown leakage?

I ask as I have been given the possible outcome scenario as a result of impending, necessary reparative surgery.

This is the second frank question I have tabled following my surgeon's clinical letter, which of course I need to understand fully before signing my informed consent.

I am in awe of the openness and willingness of sharing on here - and have learned - fast - to do the same...

It has already made a personal difference for me since being open following my experience of the TiIES Implant.

I will always speak fondly of Meet An Ostomate for, even those who don't 'do' social media... can become connected and supported in their personal health and emotional understanding by sharing here and having the freedom to visit and also maintain their privacy too.

I iterate my heartfelt thanks!

Hence my requirement for firsthand patient experience along with the emotional consequences of dealing with its day-to-day management.

I really do appreciate the time and willingness to share personal detailed understanding - which I will be so thankful to receive BEFORE THE EVENT

....

If anyone prefers not to discuss the detail on open forum I quite understand......

Very specific links would also be of help..... Some research one is able to access in this respect..... but it is the personal tips and variation plus, of course, the complications that one does not encounter upon main medical sites.

Thank you so much, in a degree of anticipation.

I know of one lady who runs her own blog site and other social media - Thomas The Stoma, and Thomas Stoma - she has thoughtfully shared her experiences and the journey of her own surgeries.... so there is related information and awareness to be found with her resources - but not quite closely enough associated with my own vulnerable medical circumstance.

So yet again may I ask for frank replies so one may be fully prepared..... for it is over 45 years ago since my bowel perforated when I was a much younger woman - and technologies and treatments have now moved on - hopefully!

Thank you

BW

Jayne

Morning glory
Feb 02, 2024 1:53 pm

Jayne, I don't have any experience in this but want to wish you the best. I hope you get your questions answered.

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Jayne
Feb 02, 2024 5:20 pm
Reply to Morning glory

Thank you for your wishes - all positive intent is very helpful at the moment!

Best regards,

Jayne

w30bob
Feb 04, 2024 6:16 am

Hi J,

I had an ECF back before my stoma revision. They're not fun, and the medical community still doesn't have a good answer for why they form or how to repair them. Luckily for me, mine exited right next to my stoma, so I just cut my stoma hole in the barrier a bit oval-shaped on that side when it was active. It ended up closing on its own and was completely gone by the time I had my stoma mod. Depending on where it exits, it can be a pain to deal with. Mine developed when I was obstructing. I could feel it burrowing through my skin as it formed, so it was my body's answer to how to get the shit out when the normal way was plugged. I wish I had more and better things to tell you, and since mine was a few years back, maybe they've made some progress surgically, but if so, I'm not aware of it. I'd ask a few GI surgeons how they'd deal with it before signing on the dotted line. I'm always amazed at how little communication there is between docs unless they work at one of the larger teaching hospitals, which are always at the forefront of modern techniques.

;O)

Jayne
Feb 04, 2024 3:39 pm
Reply to w30bob

Bob

Thanks for the feedback.

I do not know how long your own tract has been defined as 'short gutted' - I'm guessing since the last modification - I am also making the presumption that your surgery resulting in your becoming 'short gutted' maybe was 'planned' so perhaps like me you had some lead-in time to really understand/research the likely possibilities and consequences of such stuff as fistulas and if and when deep vein feeding might become an option?

And I am so grateful for sharing that which you have directly experienced and also that which you understand may occur over time.

I have been reading some of your other posts regarding the electrolytes and maintaining hydration.

 

My own experience - although from 16 years of age back in 1979 - was a severe one - but through experimental treatments under different regimes my tract healed from top down - at the expense of the large bowel and everything below that.

It was only during the last-ditch attempt to rest/save the bowel, with deep line feed below the collarbone and hospitalization for rest and strength build-up to withstand the surgery, that unfortunately the gut perforated a couple of days prior to the scheduled abdominal surgery... and although I have never had ECF with fecal output, I did have gut microbes travel throughout the body which resulted in many years of managing draining sinuses in both legs and other effects.

HOWEVER, I still managed to continue powering myself through life and have NEVER GIVEN UP!

 

It's just pretty hard this time - particularly following my journey with TIES which I had hoped would prepare for the senior chapter of life going forward.

 

What I need to do now is somehow find the strength of belief going forward to will the negative odds at bay - hope that on the day my two exceptionally experienced and top-of-their-game surgeons - working together on my intervention, are able to somehow manage to separate the extensive adhesions in order to free the part of my remaining small bowel that has pushed its way through into what in effect is a renewed hernia in the same position as the ex-trauma site they worked on in Dec 2023 in order to reform a flat temporary stoma and what in effect was very recently recovered peristomal skin which had continued to be pitted with sinuses which had developed during my hosting of and subsequent to my excision of the TIES device.

 

So that is where I am at present.

 

USUALLY I DO NOT DO SCARED - and this 'comes and goes' - BUT SOMEHOW MANAGE TO MAINTAIN A QUIET EQUILIBRIUM IN THE TOUGHEST EYE OF THE STORM.

 

At present, despite losing my stoicism over the Christmas and New Year period, I am feeling somewhat numb but quietly trying to research the absolute edge of what I may find and what I CAN DO to somehow mitigate the risks which seem to be inevitably very high on this occasion.

 

So Bob, I personally extend my gratitude to your frank sharing of your own experience - for whilst one can fortify oneself to a point - particularly here within the Farmhouse amidst rural tranquility - SOMEHOW there does need to be - for me - some active pro-balance that I can work to achieve the balanced state of calmness I need to maintain for the run-up to the theatre.

 

Any personal tips in this respect - for I sense you have been ahead of me - where I find myself so far as some elements relating to our tract physiology.

 

Thank you for taking your time to exchange - This is good for me - I hope it is not burdensome for you.

 

.... The sun helps - so does getting behind the wheel and feeling the freedom of life I currently have.

 

I do have an open pre-log line to my surgeon - but also am so mindful of the hours of devotion he has to his vocation too - so will only use this for very specifically well-researched final cut parameters - as in, he really does 'get it' - unlike some. In this respect, I am fortunate - but as you - and many on here know from the heart of living our lives as we do, there is nothing like an insider perspective.

 

Really appreciate this exchange Bob

Cheers

 

Jayne

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
aTraveler
Feb 06, 2024 4:11 pm

Jayne, unfortunately, I developed an E fistula after having colon resectioning. Initially, after the surgery, I had discharge from the surgical site. I was informed by the surgeon that this oftentimes happens during the healing process and was nothing to worry about. Next, I developed an E fistula that was discharging through the wound site. The effect of discharging in the wound meant there was no way the wound would be able to heal with fecal matter constantly being discharged in it. The amount of discharge was extreme, and my wife and I could not bandage it up to contain the flow. Home health provided nurses to help with bandaging the flow. Ultimately, they were unable to manage it, and I was sent to the emergency room and later admitted to the hospital. It was located near my navel and the rounded part of my stomach, which made management more difficult. For 6 weeks, the hospital staff struggled to find a way to contain the flow. During this time, a secondary fistula developed off of the primary fistula. The solution found was to place a colostomy bag over the primary fistula and bandage the secondary fistula because it was quite small and too close to the primary fistula to put a colostomy bag over it. I was finally discharged to rehab to continue healing and learning to walk. The hope was that the fistula would shrink and it could be clipped or a stent placed in it to allow the wound to heal. Regrettably, I began to bleed during bowel movements, and there was blood in the fistula discharges. I was sent back to the emergency room and readmitted to the hospital. The next day, I was informed by the surgeon that my body was not healing and that it was necessary to surgically remove the fistulas and give me a reversible colostomy. So after 3 months in the hospital and rehab and 100 pounds less, I am living with a colostomy. Because of the length of stay that I had in the hospital and rehab, I received a lot of training on managing my stoma from the wound care specialist in the hospital and nurses in rehab. I have a two-piece appliance, and I can successfully manage with an accordion flange or an adhesive connection of the pouch and wafer. During this journey, I have had to deal with infections and blood clots in my lungs, legs, and arm. There were times I didn't think I would ever return home because I had a stretch where every day there was more bad news, with each day's news worse than the previous day. I pray that I have provided you with some insight.

Jayne
Feb 06, 2024 5:25 pm
Reply to aTraveler

Bless you, sir,

 

Thank you for posting your experience!

 

Clearly, your journey has been a challenging one; I hope that you are finding the blessings of being finally outside the hospital environment - for in this respect we are the fortunate ones. A three-month inpatient stay, including rehab, in pretty well one stint, must have been tough - both for you and your family.

 

Although I am not a medically trained person, like many folk with a long timeline of medical history, one becomes more informed over time - but usually, only by degrees, following the actual 'latest' experience.

This is why, here within MAO, the patient perspective is SO SO SO valuable: Particularly, for us to participate in a firsthand sharing exchange BEFORE an upcoming phase of treatment. The balanced, more extensive view from the point of empathized reality of another, who has lived the consequences - following the clinical explanations - THAT allows for more of an INCLUSIVE UNDERSTANDING :-o

 

Thank you so very much for taking the time to document your own experience - it endorses my own concerns but also may help put them into perspective too.

 

My current surgeons are being openly upfront and do set out the outline of risks that I must consider - and for that, I am grateful.

 

Please, are you able to give an update in any way as to how your experience has affected your ongoing life now that you have left the hospital environment?

From what you have written, you and your wife have an ongoing challenge.

 

I can fully appreciate the scenario of 'learning to walk' again - having done so myself - for back in my twenties when my bowel perforated, I too experienced numerous challenges - some of which, like replacement ankle attempts and the like [- many years later -] have implications far beyond the events of even small holes/bowel perforation.

 

In your own case, I am thinking that your prior bowel history was the setting when upon resection your problems with fistula formation/fecal discharge began.

In my case, I have, generally, been most fortunate for forty years of having a Brooks stoma following my proctocolectomy, for whilst life had its challenges - there was a 'clean' management of a single well-formed spouted stoma. And although one's lifestyle was a 'measured one' - I have lived a pretty full life.

 

I am now at the stage where unfortunately, whilst I have experienced - eventually, following legal recourse in order to ensure the same - good private surgical repair following the explantation of my TIES device and subsequent problems attendant thereto, I now find I am faced with the need for further surgery in that repair ....

..... So as I have extensive adhesions [scar tissue] the net result is a very VULNERABLE BOWEL which with the utmost surgical expertise being employed, there is a very real likelihood of bowel puncture and the all/some/most of the complications you have so experienced within your own situation.

 

I wonder, therefore, "How is life now that you have returned home"?

 

As you appreciate, our circumstances are different and I have far less of my tract remaining than yourself - but, nonetheless, your own experience of discharging fistula management is particularly insightful for me ..... and may, should this occur with me ...... be helpful to know more.

A separate discourse would probably be needed for full appreciation of what wound management was employed - for even within my own deep sinus network discharge around quite an extensive parastomal area .... I only had a consultation with a consulting dermatologist clinician, and practically, was left pretty well to my own resourceful home - house/bedroom confines - to air manage my air healing and applied tapes protections whilst continuing to experience the pain levels that went on for many, many months.

Over time - and I would be interested to learn of timelines - have your fistulas finally healed altogether? Or do you still experience consequences therefrom?

I also appreciate - from your own narrative, that you have had the benefit of specialist wound healing treatment - such professional specialist knowledge and experience must have been so valuable in progressing your healing. For I hear loud and clear the home management challenges too!

 

So often we have so little understanding PRIOR to events - WHAT OUR AGREEMENTS/EXPECTATIONS POTENTIALLY HOLD FOR US.

It is the patient who lives on through the reality of life - long after interventions within the operating theatre.

 

Naturally, I am very concerned, for my personal application as regards my upcoming surgery, because I do understand the very real possibility of bowel puncture - and also the possibility of fistula complications following that ..... not to mention the fact of possible loss of further bowel to the point of vein feeding becoming a necessity.

 

You have mentioned your bleeding, and blood clots, and indeed the consequence of these. Not something to dismiss!

 

Whilst what we are exchanging here is tough call stuff, your very sharing of it provides me with a balance for my concerns - as you appear to have come through .....

 

Hence, I enquire how you 'travel' your journey today?

 

Thank you so much,

with much gratitude,

I send you - and your wife, blessings

 

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

from the Welsh-Mid UK hills

 

BW

Jayne

 

 

... BTW ... I love the 'We're in it together' image of your profile - the cycle of love, care, and connection says it all! :-)

 

 

PS I am not a premium member at present - so my exchanges are all in the public forum - and I do appreciate this and hold no expectation for details ..... So please, do accept my sincere thanks for that which you have shared - I am particularly grateful. TY again.

aTraveler
Feb 08, 2024 2:56 am
Reply to Jayne

How is life now that you have returned home?

• Upon returning home from the hospital and rehab, I was again set up with Home Health. For two months, they provided nursing, occupational therapy, and physical therapy. I have completed the home therapy, and I am able to walk with a cane now instead of a walker. I am now in outpatient physical therapy. I am hopeful that I will be walking without the aid of a cane at the completion of this PT. As you surmised, this has been a very difficult time for my wife and two daughters. We all have attended counseling. I am able to manage my stoma (yuck) quite well. I am holding off on yard work until I am fully healed—don't want a hernia.

 

Have your fistulas finally healed altogether?

• The fistulas would not heal on their own; they had to be surgically removed. It was during this surgery that the colostomy was performed. My navel was also removed—this was a big surprise to me. I still have a couple of months to go before I am healed from the first surgery.

I have a reversible colostomy, but my surgeon said the surgery to reverse it will probably be difficult and will probably involve more complications than my prior surgeries. He said I should give myself a year before making a decision. He said I will probably encounter healing issues again along with additional fistulas. I hope I have answered your questions; if not, ask again.

Jayne
Feb 08, 2024 3:07 am
Reply to aTraveler

Thank you for sharing with us.

I wish you the best possible going forward.

Good luck

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

Jayne