does this sound like a fistula?

Hi fq,
Unfortunately, for me, passing gas was the first symptom I experienced. Then the discharge began, very slow at first that, like you, I was unsure if I was spotting. My fistula did make itself known though pretty quickly. I would say within a few weeks I was passing what was obviously stool. It became very irritating and uncomfortable.

Where are you experiencing discomfort? Is it high up, or closer to the opening? If it is closer to the opening, you may be able to see it with a mirror. On the other hand, sometimes they are so small, it is very difficult for the doctor to detect.

There are tests your surgeon can do to try to locate a possible fistula. If you still are experiencing this consistently, I would make an appointment for a consult.

Good luck!

Colleen

thank you Colleen. what u describe is exactly what I am feeling now. Started with gas, now some spotting.

can i ask u some questions?

1. when was your takedown?
2. i understand if takedown is close to when you notice a fistula, then the fistula is likely due to surgical reasons (and not Crohn's). Is this true? If so, do you think that the surgeon could have been responsible in some way or that it is our own bodies reacting to the surgery? Just trying to understand if it could have been avoided?
3. What have you done about your fistula? Do you take medication or did you get surgery? did you have to go back to a temp ostomy? do you just live with it?
4. I think mine is higher up. I do not see anything close to the opening. What is done in this circumstance?
5. I know when I sit down, change positions, or get up fast, i feel air/discharge expelling, and some gas "bubbles" come out. Did you experience this?

this is very distressing and depressing. i think if i do have a fistula, i will just go back to the ostomy.

thanks.

5 and 1/2 years ago I had my colon removed and jpouch created the same day. My surgeon severed my ureter and cut a hole from my jpouch to my vagina. I immediately had surgery to repair the ureter and over the last 5 and 1/2 years I have had several surgical attempts to close the fistula. Twice they thought it was healed, had takedown and both times within 24 hours the fistula reappeared and I went right back to the ileostomy. Three months ago today I had a complete redo with Dr. Remzi in Cleveland. Yesterday, I had a vaginal xray and a pouchogram. So far, both show no fistula. Dr.Remzi is putting me under anesthesia this morning to give a look. I can't go through another disappointing takedown. I am very nervous about it, but don't want to live with the ileostomy anymore. Also, with the surgery 3 months ago, Dr. Lucas (plastic surgeon), used tissue from inside my leg, next to my vagina, can't see the scar with underwear or bathing suit to use as extra protection. There has to be a better way. These fistulas are very frustrating to say the least.

dawn, it sounds as if you've had a very difficult time with this. How disappointing and frustrating for you. I hope things work out for the best and your last surgery was a success.

fq, here are some answers to your questions:

1. when was your takedown?

I actually had a healthy pouch for 10 years before this fistula appeared. I was told it was caused by an abscess (anal) and that my pouch looked fine.

2. i understand if takedown is close to when you notice a fistula, then the fistula is likely due to surgical reasons (and not Crohn's). Is this true? If so, do you think that the surgeon could have been responsible in some way or that it is our own bodies reacting to the surgery? Just trying to understand if it could have been avoided?

Having done searches of the forums when I first started having fistula issues, I did notice most were detected shortly after surgery. There does seem to be a correlation, but you would have to ask your surgeon. I don't think it's something that can always be avoided, unless the surgeon makes a mistake (as it seems the case for dawn58). As for a Crohn's diagnosis, there are also some on the forum that have had that end result. I found it to be a select few, and they seemed to have issues with recurrent fistula's. I was not given a Crohn's diagnosis, and my gastro and surgeon didn't seemed concerned.

3. What have you done about your fistula? Do you take medication or did you get surgery? did you have to go back to a temp ostomy? do you just live with it?

Initially, my surgeon did an EUA and put in a Seton drain. We then moved forward with the repair a few months later (in April). I opted to go back to a temp ileostomy. Statistically, chances of it healing properly and the repair being a success, goes up dramatically when you go this route (as I was told by my surgeon). But it depends on what type of repair you opt for (there are several different ways to repair). I had my takedown in July, and have not detected any issues thus far. Only time will tell if the repair was a success, unfortunately. But, I had several procedures before takedown to "test" for leaks and was given the green light.

4. I think mine is higher up. I do not see anything close to the opening. What is done in this circumstance?

In terms of repair,I don't think it matters where the fistula is located. I just think if it's lower, there may be less irritation to the vagina, as stool is not running all the way through it.

5. I know when I sit down, change positions, or get up fast, i feel air/discharge expelling, and some gas "bubbles" come out. Did you experience this?

I did experience this. Mostly at night, when I would lie down to sleep, air would come out. I could feel it. I pretty much knew what it was right away, but was in denial for a few weeks. Once the stool started, that was it, and I called my gastro.

There are several fistula repair success stories on this board, so don't lose hope (If, in fact, you have one.)

I hope this helps! Don't hesitate to PM me if you have any other questions.

Good luck and keep us posted!

Best,

Colleen

Hi,

Hate to say this but it does sound like one, there are many ways they can diagnose it but I was more than happy to be knocked out for my tests lol. The good news is it sounds small which means you may be able to get away without having to do to much to it. They are pests and very hard to fix and surgery can often cause more problems however im NOT saying surgery cannot fix them, numerous people have had succsessfull treatment via surgery. Personaly I think if you can get away with it, the least invasive treatment the better.