New Member looking for some answers regarding fistulas

[Gene]

Hello everyone,
I have been dealing with crohns disease related symptoms for about 2 years now, but was not diagnosed with the disease until this last December. I found this site and was hoping to be able to get some questions answered and just have a place to talk about my crohns. To make a very long story short, I have had four surgeries to deal with fistulas that have formed as a result of my crohns and really havent gotten a reprieve from them. I find it difficult to walk, painful most of the time to just get around, and its really getting to me as I find I am just getting slower and weaker. I went from being able to do some impressive martial arts techniques to having to hobble along for the most part over these last two years. I am currently on prednisone, flagyl and sulfasalazine as my medications.

Sorry for that wall of text, I guess what I am really trying to get at is, does it ever get better? Has anyone with fistulas seen them healed and in what sort of time frame? And how could I go about dealing with the depression I get when I just sit and think about crohns and what its done to my life. Any help would be pretty much the best news I have heard in a while.
Thank you.

18 and currently attending college.

 

[danman]

Hiya Gene, you found the right place for getting your information

Fistulas are a bugger.... nothing more can be said about them.
I suffered with them for 12 years with brief periods of remission. Surgery and antibiotics help but perhaps your doc could consider Remicide/Infliximab. it worked very well for me I got 1 and a half years relief.

Try looking in the search option for fistulas. There has been a lot of topics relating to fistulas on here, with a lot of information.

Welcome to the community again

 

[jed]

welcome Gene,

never had fistula's here, but i certainly understand you fall from energiser to couch dweller. never fun, but it can get better.

good to see you here.

 

[My Butt Hurts]

Hi Gene and welcome. Don't apologize for the wall of text - that was nothing. And that's what we're here for. I was going to suggest the search option too. Plenty of info on here about them.

My fistula was manageable for about a year I think after my doc poked a hole in it. Then it filled faster than it was draining and I had to have it surgically removed. It came back in the same spot, but I have been on either Humira or Remicade since then and it has been not noticable for a year now.

 

[Cookie]

Welcome to the forum Gene. I think you will find lots of good info here.

I, too, deal with a fistula, which often turns to an abscess. I have had one surgery to repair a fistula, but it did not turn out to be a permanent fix. So I always have a fistula, that is to say, there is always that hole and I know it is there from the gas that comes through. Soemtimes it is very bothersome...swelling, drainage etc. and sometimes it is just a hole (that I can live with). When it gets very swollen, that is what i refer to as an abscess, but that may be incorrect. I don't know for sure, but it gets to be like a boil and gets really hard and then will drain all at once, so that's what I think it is. This is when it is very sore and hard to deal with. I take lots of baths which seem to help, but yes, it definitely limits my activity and that depresses me because I am an avid runner. Flagyl and cipro are the only things that have worked for me to keep the swelling down. I have tried Remicade. My doc said it has been shown to be great for fistulas and it seems others have had luck with it, but it never worked for me. Currently, I am taking only 250 mg of flagyl as a maintenance and dealing with it.
However, I can't say that it's been working too well lately, and I hate to up my dosage. i'm not sure what the next step may be...tired of trying things that don't work.

I hope you have some good luck in finding relief for yours. Please keep us posted and let us know what treatment you get and how it's working.

 

[kello82]

hey gene
yup, another fistula person here.
i got my first fistula about 6 years ago, i had it opened up surgically (it was very close to the surface of my bum cheek) and then immediatly started remicade right after. didnt have a peep out of the fistula nor any new ones the whole time i was on the remi!
however, i slowly built up a tolderance to the remi and switched over to humira, which didnt provide much relief and more fistulas started popping up.
i was put on flagyl and cipro (am still on them to this day) and had a lot of surgeries b/c an abcess had formed that wrapped around my colon and this was the root of all the fistula activity.
i had setons and penrose drains placed to keep the fistula tracts open so that they wouldnt close off and contain the abcess. finally, the abcess calmed down and the fistulas are just holes now, with a little bit of drainage coming out here and there.
i know that sounds like a lot, but my problem with fistulas was due to the large abcess, and it sounds as if youre abcess free.

well so that was my experince with the little suckers.
i would suggest remi, it worked well for me in controlling that problem and i see that some other people had the same type of experience with it.
also surgeries for placing setons can GREATLY reduce the pain and pressure from them as it keeps the tract open and doesnt allow the pus to buid up.

also i am 19 and SUPPOSED to be in college, but too sick to make it this year. so i know where youre coming from with the sadness of having to just sit around due to your pains. but just remember that you will get back out there one day, ok? thats what i keep trying to tell myself. every little victory is a step in the right direction.

let me know if you have any more questions

 

[Gene]

Thank you for the information and support everyone it means alot to me. I have had abcesses which were operated on and lead to the hole in my leg, I am sorry to hear that I am not the only one, they arent to fun. I think I will take a look into remicade, though i feel flagyl seems to be doing its job. The open drainage is not to bad and much more easier to deal with than another abcess I have had. Thank you all again for the info and support and I wish you all the best in managing everyones symptoms.

 

[TammySue62]

I have been dealing with fistulas for several years now.
You could try Remicade it helps slow down the drainage for
th first couple of weeks.

Also try cipro with flagyl

 

[Stleger88]

I used to have those little Bast**** but they went away thank god once I changed my diet

But welcome to the forums if you have any questions let us know

As far as fistulas I can only tell you whats worked for me and that's cutting out all sugars/carbs/starches from my diet, I don't know if your able to do that but you may want to start yourself on a diet, the "problem foods" of crohns tend to make them about a million times worse lol