Did this happen to anyone else ? - possible fistula

[Czechwife]

Hi everyone. First I am so sorry that we all deal with these issues and how they manifest in our body. I pray for a cure all the time.
My name is Samantha. I was diagnosed with Crohns in 2006 and for a few years I was one pentasa 3000 mg a day. But stopped hurting so I stopped taking. In 2011 I had another scope and he said I looked fine and was bleeding just from stress. He said I might not even have Crohns. What the heck. Lol.

So , here we are. Last year I started noticing some muscle hard area around my buttock near the sit bone and I just thought it was inflammation. If it pushed on it I would get these rectal reflex feeling. It would stop as soon as I stopped pushing. So this brings me to two weeks ago. That same buttock area seemed to have made a boil or abscess. I went to the ER and they said go to a dermatologist. I went and they said it was a cyst. She put me on an antibiotic and warned it could drain. Later that night to ease my pain I sat on a heating pad. Tmi - but it ruptured open and oh my stars blood and more blood came out. Squirted out when I tried just pressing around all sides of the mass. Then it started leaking blood mixed with this yellow clear liquid. This happened two more additional times. I went through rolls of toilet paper and gauze. I've been keeping it washed twice a day with many gauze changes.

Here is the part that worries me and prompted another ER visit. When pushing on the mass to get the residual bleeding to stop I felt that spasm thing again and then started bleeding blood droplets from my rectum (not the abscess) . It almost felt like a regurgitation spasm thing. But as soon as the spasm stopped the blood stopped. No blood with bowel movement or really any pain from that area just the abscess. The ER said its a fistula and are sending me to a surgeon. I'm scared. I'm beyond scared. I don't think any of us want to go through what we face but I am emotionally distraught over this.
The CT scan I had yesterday in the ER showed no pockets. I'm still leaking the yellow watery and little blood from the abscess. I'm trying to rely on my faith and breathing mechanisms to get through this.

 

[Jennifer]

I'm so sorry you're going through this Czechwife, it sounds awful. *HUGS* Sorry for the late reply. I don't have any personal experience with fistulas and the only abscess I've had was due to a complication after my resection, different from what you're dealing with. Have you already seen the surgeon?

I'm going to tag a few people who may be able to offer some advice. Absentminded, xX_LittleMissValentine_Xx, DustyKat, PsychoJane, Pointy_ears, any info you can provide is greatly appreciated.

 

[ronroush7]

Best to you.

 

[It takes Guts]

This sounds similar to what I had. In my case it was diagnosed as a cutaneous abscess. It is a longer recovery period than I ever imagined and now nearly six months later it still is a little sore occasionally. I'm really sorry this happened, it was a huge shock for me, I didn't ever think something so minor could cause so much discomfort and cause a problem for so long ! Next week I find out if there is a fistula as the underlying cause. Fingers crossed.

I'd felt a lump forming for a few weeks but when I went for a routine checkup - they wanted to drain it straightaway, antibiotics were not an option. I managed to talk them into letting me at least go home and come back the next day. It was only a twenty minute procedure but under general anaesthetic and then a dose of morphine once I came round. I was discharged the same day. I did not need any further painkillers.

The wound needed dressing every day for over fifty days - that's a lot of visits to the nurse. Because of the location it was hard to keep dry (Crohns doesn't help!). It's also impossible to change the dressing yourself.

Based on my experience, if this sounds the same to you, this is what I learned- Eat protein to help the wound heal. Try and keep it dry so that the skin heals over. Clean around the area with wipes but let it heal. Getting it wet prevents the healing. The advice on dressings is mixed. Some say those with silver promote healing. Ask your nurse for advice and see if they can change them for you.

I hope this helps. Happy to answer any questions if needed.

Best wishes for good healing !

 

[Absentminded]

Hi, I'm so sorry that you're having to deal with this.

I'm afraid I don't have any advice; I've had 8 Fistulas altogether, but they've either been internal ones or out through my tummy so needed to be dealt with differently and had different symptoms.
I'm sorry that I'm unable to help. I hope you get some relief soon and that your consultants have a plan to get you better.

 

[Czechwife]

Hi, I'm so sorry that you're having to deal with this.

I'm afraid I don't have any advice; I've had 8 Fistulas altogether, but they've either been internal ones or out through my tummy so needed to be dealt with differently and had different symptoms.
I'm sorry that I'm unable to help. I hope you get some relief soon and that your consultants have a plan to get you better.

It turned out to be a fistula. I had surgery Wednesday and they left the abscess cavity open where one end of the seton goes through. So I've been doing lots of sitz baths and resting. I hate having a gaping hole.

 

[matt82]

Hi, I'm so sorry that you're having to deal with this.

I'm afraid I don't have any advice; I've had 8 Fistulas altogether, but they've either been internal ones or out through my tummy so needed to be dealt with differently and had different symptoms.
I'm sorry that I'm unable to help. I hope you get some relief soon and that your consultants have a plan to get you better.

I tool have a fistula that comes from my lower right side and exits just to the right of my belly button. I was just wondering how you had yours repaired or what you did to heal yours? Thanks

 

[Absentminded]

I tool have a fistula that comes from my lower right side and exits just to the right of my belly button. I was just wondering how you had yours repaired or what you did to heal yours? Thanks

Unfortunately I had to have surgery to get rid of mine.
As the fistula was a post surgical complication it couldn't be treated with medication like some can. I lived with the fistula for a year, and during that time it did close up but then it burst again which was pretty unpleasant.
In the end my surgeon and I decided that surgery was my only option.

Do you have a consultant managing your care? Hopefully they will have some ideas of what to do?

 

[Absentminded]

It turned out to be a fistula. I had surgery Wednesday and they left the abscess cavity open where one end of the seton goes through. So I've been doing lots of sitz baths and resting. I hate having a gaping hole.

Although it's not nice, I'm glad that you know what you're dealing with and you've had surgery to begin to make things better.
Sounds like you're doing all the right things. I hope it does the job and you start to feel some improvements.

I know what you mean. I really struggled when I first had the fistula on my stomach, but eventually I got used to it (it's amazing what becomes "normal").

 

[matt82]

Unfortunately I had to have surgery to get rid of mine.
As the fistula was a post surgical complication it couldn't be treated with medication like some can. I lived with the fistula for a year, and during that time it did close up but then it burst again which was pretty unpleasant.
In the end my surgeon and I decided that surgery was my only option.

Do you have a consultant managing your care? Hopefully they will have some ideas of what to do?

Yes I have a GI and she wants me to just go talk to the surgeon to see what options he has. They would like to start me on humira or something along that line of drug. But I keep getting infections at the sites where the drainage comes out of the skin. There is a tube in the abscess that has almost completely healed. But the fluid that comes out now is too thick and it comes out around the tube or the other three holes that open up time to time.

 

[Absentminded]

Yes I have a GI and she wants me to just go talk to the surgeon to see what options he has. They would like to start me on humira or something along that line of drug. But I keep getting infections at the sites where the drainage comes out of the skin. There is a tube in the abscess that has almost completely healed. But the fluid that comes out now is too thick and it comes out around the tube or the other three holes that open up time to time.

That's great hat you have a GI who is on the case. How do you feel about meeting with the surgeon? I know a couple of people who have had great results with Humira, biologics are the best drugs for treating Fistulas and they do often heal them up.

I'm sorry you're having problems with infections. There are some effective medicated powders available which are commonly used for the skin around stomas but might work to help keep your skin healthy.
I used t wear a paediatric Stoma bag over my fistula to catch the output as I had quite a lot; I found that that protected my skin too.

Hang in there, there are ways to treat fistulas like this.

 

[matt82]

That's great hat you have a GI who is on the case. How do you feel about meeting with the surgeon? I know a couple of people who have had great results with Humira, biologics are the best drugs for treating Fistulas and they do often heal them up.

I'm sorry you're having problems with infections. There are some effective medicated powders available which are commonly used for the skin around stomas but might work to help keep your skin healthy.
I used t wear a paediatric Stoma bag over my fistula to catch the output as I had quite a lot; I found that that protected my skin too.

Hang in there, there are ways to treat fistulas like this.[/QUOTE

I'm not to worried about meeting the surgeon. I dealt with him about 6 years ago to have a peranal abscess drained. And it still drains now and then but he has always told me that if it doesn't get worse and I can deal with it to just leave it. Cause operating on it could cause more problems. He is suppose to one of the best at University Hospital in London. And he is the first surgeon I've talked to that wants to try everything before removing anything. The infection is starting to get under controll abit. The problem last time was that I would be in a 4 week course and I would come off the antibiotics and with in a week would have the infection back. This time I'm on 8 weeks so I don't run out. But im also told these antibiotics especially the one is the biggest they have, linezolid, flucanozone, and sulfatrim. Now the fistula is draining really thick stuff. And not as much as it has but a lot of gas or air is coming out. Not sure if that means it's healing a bit or getting worse. I know before. Chunks of food would come out like peas and corn and such. And a lot more draing. Now it's thicker and smells different and no chunks. Just little specs of stuff now and then