Developed a Fistula Around My Stoma - Seeking Advice

Replies
13
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602
Regina15
Nov 22, 2023 10:30 pm

I have a new ileostomy of 4 weeks. Working fine, but I've developed a fistula at the top circumference of my stoma and abdomen. I leak fecal fluid from this area (outside my stoma). I've been concerned about the possibility of peri, but I've been reassured that this is unlikely to happen. However, I've been feeling unwell and feeling hot and cold and weak. I'm on antibiotics but still feeling very weak, hot, and cold.

Regina15
Nov 22, 2023 10:31 pm

Peritonitis, that should say.

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Morning glory
Nov 22, 2023 11:27 pm

I would go back to the doctor for a checkup. Just because they say it's unlikely doesn't mean you don't have an infection going on. You might need a stronger antibiotic. All the best.

Jayne
Nov 22, 2023 11:49 pm

Best to keep an open mind - but do insist on being seen by your doctor/clinician - additional measures may help.

 

There is an ostomy blog which is run by a lady who is well versed in fistulas; perhaps you may look up 'ostomate fistula patient resource.' I guess her site may be within the listing for such a search... I do not have the URL to hand and it may be inappropriate to drop a specific link.

Over the years I have experienced a number of draining outlets within my own body - but each has had very different reasons for their formation... not least of which was a historic bowel perforation resulting from penetrative Crohn's disease, and more recently the result of my surgical experience with the TIES implant device under medical trial.

 

Given your newness of stoma formation - best to keep on top of any concerns you may have and follow these up with your medical team.

 

Good luck... complications can be sorted...

In my own experience, we only get scared of that which we do not understand.

 

Best wishes,

Waves from the green hills of Wales.

 

Jayne

Beachboy
Nov 23, 2023 1:54 am

Go back and consult a doctor. Feeling hot and cold and weak sounds like an infection. I felt exactly the same way before I had surgery.

I was given 4 antibiotics and 1 fungal medicine for 6 weeks.

Good luck.

 

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Rose Bud 🌹
Nov 23, 2023 5:38 am

Oh, please go get a second opinion. You should not be feeling hot and cold. I felt like that and had an infection that became deadly. Thankfully, I made it through.

Axl
Nov 23, 2023 8:01 am

Hello Regina,

Head into the docs and get a thorough investigation of your issue. You need it for your own peace of mind.

Daisy2023
Nov 23, 2023 10:29 am

It's always best to go back to the hospital when you're feeling that way so they can check for infection. I know how hard it can be to go, but you'll be better for it. I had to go back after my surgery due to infection, but the antibiotics cleared it up.

Mysterious Mose
Nov 23, 2023 4:52 pm

I will join the chorus and say please consult with a doctor. I would go to the ER in your area. The last thing you want is sepsis. It's a killer. Literally.

Daniel

IGGIE
Nov 27, 2023 1:18 pm

G'day Regina, you posted your message on the 23rd. It's now the 28th. You should have already been to see the doctor by now. If not, go today. Regards, IGGIE

PatriciaSz
Jan 13, 2024 2:25 am

I have a newer ileostomy and developed a stomal fistula too. My surgeon says that as long as there's no sign of infection, no fever, just go with the flow (no pun intended). It's just a pain because of the irregular way I have to cut the wafer and I'm getting leaks. My skin is not happy. As soon as I get one area looking well, another inflamed area pops up. Luckily, I'm supposed to get reversed in late March.

IGGIE
Jan 13, 2024 12:42 pm
Reply to PatriciaSz

You Surgeon must be joking or Stupid. Get a second opinion. Regards IGGIE

Mysterious Mose
Jan 15, 2024 4:31 pm
Reply to PatriciaSz

I agree with Iggie here. Please talk to another surgeon. Fistulas are not something that is normal or that should be ignored. We are not medical experts here, just an exercise in common sense. As someone who has survived a bout with severe sepsis, I can attest to how close it can bring you to death's door. This may or may not be the case with your type of fistula. But like anything else life-threatening, do not accept the word of one person as gospel. Get a second opinion.

Daniel

Maureen62
Oct 07, 2024 8:50 am
Reply to Regina15

Is the fistula like a sore or wound under appliance area near stoma? If so I can relate and had this happen to me. Would like to hear back from you.