Experiences with Small Bowel Fistulas and Fistulograms

Anybody out there want to share? I am 3.5 months out after an APR with a permanent colostomy. The fistula has freaked me out, and I am hoping others can share their experiences and support. I had a ruptured abdominal abscess 10 days ago. What is it like to have a fistula gram? I am looking at more surgery, which is quite scary. I would appreciate any thoughts anyone has.

RT

Hello

You may find very specific information from Clare Mee, who runs a blog site and has personal experience managing fistulas.

https://tomasthestoma.co.uk/

BW

~ ~ ~ ~ ~Jayne ~ ~ ~ ~ ~

I had a fistulagram last month. My fistula is different from yours, so no specific information there.

But the procedure is fairly simple. It is done by a doctor who is an interventional radiologist. They use a fluorescent dye (it glows when hit by radiation) and a CT scanner that is a bit smaller than the usual one you see. In your case, they will inject the dye into the fistula and use the CT scanner to see where the dye goes.

They didn't sedate me, and it didn't hurt at all. If they need to sedate you, it'll probably be that "waking sedation" because they needed me to move around during the test to get better pictures.

It did not take long... maybe 10 minutes in the test. I spent more time changing clothes and waiting.

What I don't know and may be different for you is how they will access your fistula. In my case, they tried to access it through a drain placed to drain my abscess.

I'm also likely facing another surgery. I'm now 7 months out from my surgery (TPE, a more extreme version of your surgery). It is indeed a scary thing. But living with this fistula is scarier. I've been told I have to wait until a year from my original surgery. I'm pushing back on that hard, but no progress so far.

In the interim, I'm on TPN (total parenteral nutrition or IV nutrition) and severely limited in what and how much I can eat. The idea is to allow the fistula to heal on its own.

Ask me anything. We're traveling similar paths.

And welcome to the board, by the way. 😅

Susan, this was a very helpful response to me. First, about the fistulogram. I was concerned that it would be a procedure causing pain and suffering. I have 2 openings in my lower abdomen where the abscess drains. One is about quarter-sized and the other, right below, is slightly smaller. They had hoped it was just pus, but it is now draining small bowel fluid. I thought that it could heal, and you said they were waiting for you to heal more before surgery, but mine is getting bigger and deeper. It is worrisome to me that I will become septic. But in general, I feel fatigued but not ill. Please tell me how they are treating you in the interim before surgery. I am going to a wound care clinic. I am also struggling to eat due to appetite but have not been given any restrictions yet on food. If I understand correctly, you are not eating to provide bowel rest?

Thank you for any or all information.

I'm so sorry you are having such a bad time. It sounds like they will need to act much more urgently in your case.

My fistula is going from somewhere in my bowel (probably small bowel) to an open area in my pelvis. I had a very large collection of fluid there, and it did eventually make me septic.

It started out draining through the rectal, vaginal, and urethral stumps and onto the bed, the floor, everything. They installed a drain in my pelvis to pull out the fluid. I still get a little leakage through the stumps, but very little. For the most part, the fistula output is captured by my drain.

The drain has stabilized the fistula, so I am not getting worse, and the risk of infection is reduced. I get regular blood work looking for any evidence of infection. Because I'm stable, they are reluctant to act, and it's really a waiting game at the moment.

With fistulas draining to your skin like you have, your situation is much more serious. I imagine the fluid is breaking down your skin and will continue to do so, making the opening worse. I understand your worry, and I hope they find where the fistula is coming from and are able to fix it soon.

I can be a listening ear but may not know much more than you do. But feel free to ask anything or just vent.

Edited to add:

I think I didn't answer all of your questions... need coffee! Lol

Besides the drain and blood work, they are treating me with TPN (IV nutrition). I must eat only low-residue foods and very little of that. They'd prefer if I didn't eat at all, but I haven't managed to do that for long periods. The idea is that if there is little to nothing in the intestines, there will be no drainage, and the fistula will heal. But that takes time; it doesn't sound like you have the time to wait.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I would, if I may, like to make an observation on your last point, Susan - In my humble opinion, healing does take time. And with all of my challenges from 16 to going on 70, one prerequisite I have stuck to is, 'be wary to cut where infection is prevalent' - i.e., I personally feel that timing is singularly important and that to 'rush in' - where perhaps only the 'foolish fear to tread' - is usually something that results in a leisurely repentance - either for being impatient, not listening, being scared, or not understanding.

So with the greatest respect, be true to oneself and do what is right for you, yes - but do not go into a situation lightly - i.e., do your full research and ask as many probing questions - the answers to which, in some cases, may be 'we don't know' - and a medic who is dominantly persuasive needs to provide the track record and full evidence for such advice.

That is the best I feel I can give - hope it may help - in the longer run. I regret I am unable to be more helpful as within my limited understanding, fistula management takes time - but, with perseverance, it can be doable!

BW

J

I appreciate the sentiment. And you're right.

But I have been managing since last September and have already had one extra hospitalization caused by sepsis due to this fistula. I'd rather not survive cancer to succumb to infection.

Not to mention the TPN means I can't travel. I haven't seen most of my family in over two years. None of them are healthy or able to come see me. I cart around a drain that hangs down below my knees, making me look exceptionally strange to everyone who sees me. I can't eat normal food, which seems particularly cruel since cancer treatment and the cancer itself left me with no appetite for the prior eighteen months. I'm just fed up with it.

And I'm whining a bit because I am tired of it and know they are very firm about continuing to wait.

Thank you both for your feedback. Susan, I barely leave the house with a colostomy and draining wound dressing, let alone with a wound drain and TPN. I am afraid of the skin tissue becoming infected, as I should be. I have an incredible amount of empathy for what you are going through. I am very frightened that they would do surgery at all, as my first was 6 hours and I went into shock afterwards. I chose the surgical option before chemo and radiation for a cure, but now I am suffering from surgical complications. Perhaps I made the wrong choice; too late now. I live with some family (daughter and SIL), and the rest of my family are in town, but they are all sick of me being sick and tired of having empathy. I know I bore myself with being ill. I am fearful, too, of surviving cancer to die of complications. I am 73, but I was a healthy 73. Still waiting from last week for the fistula gram to be scheduled. Then I see the surgeon. Waiting with a draining abdomen is difficult. I am barely used to my permanent colostomy. They mentioned the possibility of a wound vac. I retired from the medical field, so I know a little too much about how quickly things can go wrong. The info I have in my career mostly hurts me from a worry standpoint rather than benefits. I am at this point clueless on next steps and just trying to live in the moment as much as possible. I was rehospitalized right after my first surgery for an infection that they never found the source for. Now we all know what it was these months later.

Bless you, Biggly Susan

Understand

And yes, it must be very hard - to have fought so strongly and come through so much to then find the waiting uncertainty and daily containment a very enduring ongoing burden - but Susan, we are stronger than we think - although we often wish that we would not need to be so strong... for in its soul tiring - or so it seems in our here and now.

Clearly, Sue, you are a special lady and I feel for you: especially if, like me, you have set goals along the way as necessary 'step' markers along the path - and, having gathered and mustered your resources to reach these steps, are then set forward markers you had hoped might be the summit prior to a more gentle walk along the top.

Bless you

Best thoughts

Hug-hug

Jayne

I think you are doing amazing. The stoma gets easier to deal with over time.

I would not leave the house much with an oozing wound like you have either. The drain is the main thing keeping me home. The TPN is delivered over 12 hours, and I do it at night so I could leave during the day if I need to.

I'm 63 and live with my husband. I'd be lost without his support. The worst part of all this has been the loss of my lifestyle. I used to be mistaken for 10 years younger than I am. I had that much energy and general good health. Now, I can barely walk. I want to push harder and get my life back, but it feels like the fistula holds me back.

And my fistula is stable, unlike yours. I have all the sympathy in the world for your situation. I can easily imagine how it would feel because it is a common fear of mine.

Don't question your choice to do surgery first. I didn't get that choice; my tumor was too big. But given the option, I'd have done the same thing. In fact, I begged for that option. Radiation can damage the colon, making the surgery more complex, and chemo takes away much of your strength. You might have still needed surgery and been in worse shape for it. Trust that you made the best choice. The outcome isn't what you wanted, but it's still better than the alternative.

We will get through this. I am inspired by you.

Thank you so much. I get my fistulogram on Wednesday.