Mind if I join you?

[KLRP77]

Hello everyone.

I have been lurking for a little while reading a ton, and finally decided to bite the bullet and register. I can't believe how much information is here!

I have no official diagnosis as of right now. But I have been having some GI issues that kiiiiiiiiiiiinda make me want to insist that I be tested for an IBD.

A little about me? 35/F/Massachusetts... happily married...


My Story:

I have had "tummy troubles" for a long time. Alternating between constipation and going 6+ times/day... Certain foods would set me running to the ladies room. I always chalked it up to some sort of IBS. But within the last 10 years or so, I have had acute & chronic fissures, a large ischio-rectal abscess drained, 2 more subsequent abscess I & Ds.

After an EUA in 2010, I was DX'd with a fistula, that involved too much muscle to lay open, so I got a seton. To make a long story short, he tightened it a few times, the drainage grew scant, but persisted, and I think he eventually got frustrated by the lack of healing, and cut it out, and after a really long time, the spot healed over. Between 2010 and now, I had a few instances of pain and prickles in the surgical area, but they always went away, so I didn't think much of it, because nothing was draining externally.

Fast forward to this summer, I start having a little more pain/pressure from the surgical area (with one instance of it opening and bleeding for a day) and sore spot on the same side of my girly bits, so I consulted with a CR specialist in Boston because my Primary Care/GYN and I thought it was probably a recto-vag fistula, probably related to the one that previously healed over. She agreed with our hunches, so after an MRI, where she saw my original fistula, I agreed another EUA in September, in which the doctor spent two hours spelunking up in there, and said she found NO evidence of infection or any connection to the rectum or vagina....:yfaint: But she did find re-open and clean out the old abscess cavity (even though there was no infection) & found sinus tracts that almost made a horseshoe, so she "marked off" these areas with setons again, with the logic that any drainage may go thru there?!? (That SUCKED) So, my incision wound has healed up, and since she found no evidence of infection she sequentially removed the setons... but shortly before she removed the last one 11/30, I passed mucus 2x, and started to have some anal/vaginal pain again, and a teensy bit of drainage after a BM from my anus proper. (The Setons did NOT go thru my anus) I mentioned this to her at my last appointment and she didn't seem too concerned, she told me to bulk up, but I am quite concerned about it, as it is not improving. (It's not getting worse, but it's not getting better either)

So I guess I don't know where to go from here. Do I go back and see her again and INSIST that she evaluate me for an IBD? Do I get a new CR surgeon? Do I find a GI? (I have never been to one) Do I go back to the GYN? Do I do all of the above?

IF you have read this far, thank you! I am just so happy to have found "people like me" and people that understand. Ya can't just bring up a fistula at the dinner table, ya know?

I look forward to getting to know you all and supporting you...

 

[David]

Hi there and welcome.

Get to a GI who is well versed in IBD. As soon as possible. It's time for a colonoscopy and biopsies and probably a whole host of other tests.

That none of your doctors have insisted that the cause of your fistulae be evaluated is dumbfounding to me.

Again, welcome The Undiagnosed Club members are an amazing group. You're in good hands.

 

[D Bergy]

Hello and welcome to the forum.

It seems odd to me that with all of that trouble you have no diagnosis.
I certainly would see a gastroenterologist, before things get out of hand.

Certain foods also send me to the ladies room, which is really odd since I am a guy.

If you can handle bad humor, you are in the right place.

Dan

 

[Cat-a-Tonic]

Hi and welcome to the forum and the club! As David and Dan have already said, you should go see a GI ASAP. Your primary care doc should be able to give you a referral. I agree that it's puzzling that nobody ever even bothered to find the cause of your fistulas and abscesses! Those just don't happen for no reason to healthy people, after all and they certainly could be caused by something like IBD. We have a section on the forum for doctor reviews, so you might want to take a peek in there and see if you can find a recommendation for a good GI in your area.

You mentioned that one doctor told you to "bulk up"? I'm assuming then that you've had some unintentional weight loss too? That's another worrying symptom (and another red flag that this isn't "just IBS"). I haven't had fistulas or abscesses but I lost a lot of weight unintentionally from being ill and undiagnosed myself, and I know how scary that can be. I was thin to begin with and was afraid I was going to waste away to nothing!

Good luck, I hope you can find a good GI and get some answers soon. Keep us posted, and again, welcome!