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Fistulotomy

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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

I had a fistulotomy a month and a half ago. They said it was about 30% chance of it being successful. The fistula end is right at my rectum so I had a seton ring that had to be replaced every 6 months. Last time I had it replaced the PA said I had a lot of granulation around my rectum and they wanted to clean it up and possibly repair the fistula. 
The surgery went okay. Painful recovery, of course. I went in for a follow up about 2 weeks later. The PA probed around to see if it was healing and told me to come back in 3 weeks. I went back last Thursday. She probed around and said the wound was still really deep but not infected. Then she said she was going to treat it with silver nitrate. I don’t know how many of you have had silver nitrate sticks used on you. My ostomy nurse uses them to burn granulomas off around my stoma. Yes, I said burn. The ostomy nurse uses liquid lidocaine poured over the area to numb it first. The PA at the surgeons did nothing to numb me before sticking the silver nitrate sticks into the wound in my butt!!  So very very painful!!  And I gave to go back in 2 weeks to do it again. If this thing doesn’t close after all that, I may cry. 
Just a little story for anyone feeling sorry about what they are going through. 😊

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 421
 

Liza, I’m sorry to hear this. Why on earth would they not numb the area first! So thoughtless! I hope you remind them if you have to go through this again. You have already been through a lot; they need to make you more comfortable, not less. Sheesh! 

Laurie

Just a semicolon


   
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VeganOstomy
(@veganostomy)
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Joined: 11 years ago
Posts: 4372
 

Posted by: @squeakyandliza

I don’t know how many of you have had silver nitrate sticks used on you. My ostomy nurse uses them to burn granulomas off around my stoma. Yes, I said burn.

Yeah, I've had them. They are basically chemical burns! It works wonders when it works... just painful for no good reason when it doesn't. 😓 

Fistulas are so hard to treat, and I'm sorry that you're going through that right now. I hope it heals up for good!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

@tigerlily 

They said the only lidocaine they have is in injection form and that would hurt more than the silver nitrate. 

they said this should help healing and prevent infection. 

Another thing, as long as I am complaining (haha). Does anyone else find it annoying when the people who gave you your ostomy ask about bowel movements. She was asking how I am cleaning the area after bowel movements. And if I had had any difficult or painful bowel movements. Haha

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1557
 

@squeakyandliza  ... like you haven't been thru enough Liza... something like that would make me avoid treatment all together.  Could they not have applied the freezing to the skin area & shoot it in anywhere it may need to go topically. Even partly frozen has to be better then no freezing at all. I winced fiercely reading your post & yes, you have bragging rights on complaining about these fistula & the treatment!!!! Ugh! It's so barbaric! I can't imagine. My heart goes out to you my friend!! 

** Hey, have you heard anything from John since Christmas ... anything at all? Please tell him I'm thinking about him & still  praying for him too!! 

Linda


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

I have a question. What are the signs of a fistula with an ostomy? 


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

@chelly 

I have had my fistula for 17 years and only had my ostomy for 6 years. Back in 2007, I had an abscess on my right butt cheek, close to my rectum. I went to a surgeon to have it lanced (it ended up bursting the day before my appt). He put in a drain tube in his office and ended up putting in two others surgically that year because they kept coming out. He said the infection started deep inside somewhere and was the size of a small football. The fistula, as I understand it, was the infection tunneling it’s was out to my skin on my butt. It drained most of 2007 and then I just stopped following up with the doctor. It would drain or bleed occasionally. Then when my colon was removed in 2018, they asked me about it (the original surgeon was no longer around) and out in a seton to keep it open so it wouldn’t get infected again. Now they are trying to close it. I hate the seton replacements every six months so I was willing to give it a try, but I’m not exactly loving this either.

When I think back to 2018, the fistula hadn’t closed up in 11 years, what was the point of the seton?  But anyway, what’s done is done. And Crohn’s sucks. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

Wow! I'm so sorry you are going through this and for such a long time. Thanks for explaining. I keep hearing about these fistula but never had one.


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

@chelly 

I guess they are pretty common with Crohn’s. If I would have gotten it later, it would probably have alerted someone that I had Crohn’s and maybe I could have gotten on medication sooner and saved my colon. But it must not have been as well known back then. 😕

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
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Posted by: @chelly

I keep hearing about these fistula but never had one.

You don't want one! LOL I've had several, and they are awful to deal with.

Posted by: @dlkfiretruck

** Hey, have you heard anything from John since Christmas ... anything at all? Please tell him I'm thinking about him & still  praying for him too!! 

I've been giving him space and avoided contacting him since the last update, but I worry about him every day.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 421
 

@veganostomy I heard from John a couple of days ago. He had a full body scan last week that took an hour; he’s waiting for a meeting at the hospital in 2 weeks. He’s eating well but still underweight. He said it was quite a storm that hit Ireland, but he didn’t mention any damage, so I’m guessing they’re okay. I told him that his buddies on VO have been asking about him; he said that he really appreciates the support here. 

Laurie

Just a semicolon


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

@veganostomy 

Me too. John is constantly on my mind. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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(@squeakyandliza)
Joined: 6 years ago
Posts: 1036
Topic starter  

@tigerlily Thanks Laurie. I’ve been really worried lately. I told him he didn’t have to respond to my messages if he wasn’t up to it, but then I started to really worry, so I’m glad he let you know he is okay.

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 

@tigerlily Thank you so much for that! I really appreciate the update, and I hope his scans show positive results.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

@veganostomy oh  no! Definitely would not want one. I guess you could say i have a curious nature and always wanting to learn it really sounds like a horrible experience to aquire one of those.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 600
 

@tigerlily so glad to hear an update. Prayers and good wishes going out for John.


   
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Tony H
(@tony-h)
Joined: 8 years ago
Posts: 336
 

That's great Laurie about John ,not a day goes bye that I don't think of him ,

 

Hope the silver nitrate worked for you Liza ,only saw this now ,can't believe you had no local or even sedation would have helped ,

I still remember my first colonoscopys 45 years ago with no sedation and that was hard, can't imagine how painful the silver nitrate must have been ,

Anyway hope it did the trick and you are recovered. 


   
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