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Hernia? Abscess? Fistula? Oh my!

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(@momof2)
Joined: 3 years ago
Posts: 37
Topic starter  

O.K. yes it is us again.  So when we went back to the surgeon in December my daughter mentioned some pressure and pain in her bottom.  Not all the time.  He was curious and mentioned perhaps getting an MRI but she was anxious to fly back home.  So we all decided that we would monitor things.  

Fast forward to now and there were a few days she was really uncomfortable and the pain occurred even when standing.  She said it was more of like a pulling pain when she stood.  The whole weekend every time she sat down she said "ouch" and had to sit to one side.  

She has written to the surgeon and he requested an MRI but she can't get one until 2/26 so I am going to break the internet in the meanwhile;) 

The surgeon said it is either a perianal hernia or an abscess/fistula.  Honestly given all her wound healing complications, I am going with abscess fistula but the surgeon says it sounds more like a hernia.  Either way they can fix it.  He said the hernia is super rare…happens in less than 1% of people and maybe 7% of people with a TAP.  So I said, "oh then abscess" to which he said, "she tends on the rare side"…such a talented kid.  

Anyway, I know with IBD abscesses, fistula's etc in this area they usually go through the anus and can leave a seton in but how do they fix these things when you are all sewn up?  Do they open you back up, reach in and fix and then you heal all over again?  To be honest the thought of that is not very comforting given the healing issues she had after surgery.  Can they do this laparoscopically? 

This has to be infection from the slow healing right?  Not due to her Crohn's because she technically doesn't have disease down there anymore. Right? 

I would have asked the surgeon these questions but he was rather keen on talking about a hernia and I got distracted.  

 


   
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Kirsten
(@kirsten)
Joined: 1 year ago
Posts: 56
 

I'm sorry you're going through this! Sounds disconcerting. I don't have experience in this situation, but I have two comments... 

First, I hear "this is very rare," and "I've never heard of that" from doctors and nurses all the time. And then, I hear from peers that they've had many of the same complications/experiences. So, for whatever that's worth. 

Second, there are doctors trying out new surgical interventions all over. In my hospital I'm reasonably sure that would be a fairly complex approach. But I don't know nearly enough about your daughter's situation to say with any authority. I hope the most conservative approach will be most appropriate 🤞


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4375
 

These aren't questions I could answer @momof2, but my word has your daughter been through a lot.

Hopefully, it is something that can be fixed easily by her surgeon, but they should be able to address those questions/concerns with a reasonable amount of detail.

I'd be interested to know how they decide to go about fixing it.

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


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 605
 

Oh wow ,Mom, your poor daughter. It's one thing after another. The stoma hernia surgeons know what they are doing.  Ask and they will explain exactly what they are going to do. Is this also ccf? I had Dr. Petro for my parastomal hernia. Great doctor. If you can get him. 


   
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