Never Told About Fistula

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Never Told About Fistula

Postby queenofpain » 22 Oct 2013, 10:09

I had LIS in October 2011, 2 years ago this month. I will fast forward to late May 2013 when I began to unexpectedly experience pain identical to that when I first experienced my fissure, seven years ago. This recent pain lasted all summer, only lately beginning to moderate a few weeks ago. My CRS was out on leave this summer, and I saw another CRS in the meantime. The second one said everything looked normal on the outside. Strangely, I saw him during a small window of time when I wasn't in pain.

I saw my regular CRS yesterday, and he said the pain is from the area being too tight (overuse of over-the-counter products such as Miralax and a bit of M.O.M. I told him I can't get off these products until I heal more). He said this is not the same as spasm (before he told me the pain was spasm). I'm really confused. I think he's clearly wrong. Before my fissure, I had irritable bowel sydrome, with constant watery bowel movements which NEVER led to pain, even when I had a rare normal-sized stool. At any rate, he did a digital exam, and said all was normal.

That aside, I was handed a paper with my medical information upon leaving, a new procedure. I noticed by current diagnosis it read, "fistula-in-ano." I had noticed a sore spot these past couple of months, and tried to tell the CRS about it yesterday, but he dismissed me. I asked during the visit whether I had a skin tag, and he said he just did an exam on me, and that I didn't. I felt there was something sore these past couple of months, though, that was causing pain or spasm.

Here's my question: Why didn't the CRS tell me I had a fistula? Is it possible it healed a lot over the summer, and he didn't think it was a big deal? I thought a fistula was worse than a fissure. THIS IS SO CRAZY!
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Re: Never Told About Fistula

Postby ravians » 23 Oct 2013, 01:03

HUYVERY STRANGE BEHAVIOR OF UR CRS. SO NOW WHAT'S UR PLAN . GOING FOR SURGERY OR WHAT. n can u tell me details of ur symptoms . did u feel soiling of ur clothes or any discharge of stool right after bm.
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Re: Never Told About Fistula

Postby queenofpain » 23 Oct 2013, 07:25

Thank you for your reply, Ravians. I didn't have any of the soiling or discharge you speak of. Just pain this summer that is similar to the standard pain that goes with a fissure. I thought this was a very strange setback, given that I had been doing relatively well since December 2011, with a few setbacks, but nothing of this length. The only difference is that there seems to be a sore spot, and a line that felt tender this summer in the perianal area. I've been doing a lot better, though, for several weeks, but still "am walking on eggshells," and have been in some minor pain now because of the digital exam.

My plan is to try to get the female resident who was present during the exam to reply by email or phone regarding the fistula. There has to be a reason why it wasn't even mentioned. I also think I will switch to the second CRS that I saw when this one was on leave. My impression of him is that he is detail-oriented and listens.

I'm so done with this, and just want to be out of pain after seven years! Thanks, again.
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Re: Never Told About Fistula

Postby ravians » 23 Oct 2013, 15:16

sorry to hear about ur pain n all the psychological n mental distress u R suffering from, but as u might b knowing that it's the dilemma of all anal problems sufferers.
as far as ur plan is concerned if 2nd crs gives u more details then it's obvious that u should c him.
for me it's strange that u never got any discharge from that fistulacz if it's connected to anal inside then it should discharge some faecal matter or blood or mucous or pus.
anyway best wishes for u. stay in touch n keep updating.
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Re: Never Told About Fistula

Postby queenofpain » 23 Oct 2013, 15:18

Thanks, again, Ravians. Maybe the CRS had reason to suspect the fistula was more superficial or something. I'm trying to read up on fistulas now. I hope I don't need another surgery.
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Re: Never Told About Fistula

Postby Savaici » 23 Oct 2013, 19:25

I think, queenofpain, that you are very wise to read up on Fistulas. As far as I am aware, they very seldom heal on their own, but sometimes antibiotics do help.

It's very strange that the CRS said nothing about this, and I would definitely follow up on it. You will find quite a lot to read on here about Fistulas and also posts from members who have had one.

All the best to you!
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Re: Never Told About Fistula

Postby queenofpain » 24 Oct 2013, 07:51

Thank you for your kind reply, Savaici. Ironically, I was doing well for a few weeks before my appointment on Monday, and after having the digital exam, am now experiencing the sore spot on the right side that I was feeling all summer (minus the degree of pain/spasm?), or, at times, as if a pin or needle is being stuck in the area. I thought maybe something happened with the LIS site (scar tissue), but am now wondering if a fistula developed. But how could this happen almost two years after surgery? I was doing so well. I thought abscesses and fistulas developed early on. The site closed about six weeks after surgery. At any rate, I left a message at the CRS's office for his resident's contact information (she was present, and I'd rather communicate with her). I still don't get why the CRS didn't mention this. When I asked if there was a skin tag he said he just did an exam, and there wasn't. I asked about a neuroma, and he said that that was myth. You can get a neuroma on your foot, but not in this area. He didn't go on to say, though, "But, it seems a fistula has now developed." He just told me to get off M.O.M. (I use relatively little) because the area should be stretched. The number one cause of stenosis, he said, is liquid stools. I don't feel that that's what's going on, though. Something has the sensation of being sore at the LIS site, or a pin prick, as I said. At any rate, I'll post when I get an answer. Thanks, again.
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Re: Never Told About Fistula

Postby ravians » 25 Oct 2013, 00:44

how r u now hope ur pain bcz of digital examination have subsided. r u still taking miralax. did u take it before n after ur LIS . actually I m also using it from past few days but I am afraid that I may not get dependent on it. so want ur opinion n experience .
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Re: Never Told About Fistula

Postby queenofpain » 28 Oct 2013, 09:35

Ravians, guess what? I received a voice mail from the CRS's nurse this a.m., and she stated that the girl who did the computer entry made a mistake: I don't have a fistula. I hope this is the case, and they told me they cleared it out of my records. The resident who was present during the exam will probably call me today or tomorrow. I was hoping this was a mistake because I asked the CRS at the time if I had a skin tag (I was trying to figure out what was causing pain), and he said I didn't, and that an MRI or x-ray to uncover anything is a waste of my money. He certainly would of mentioned a fistula. I am doing better, but something is irritated in the area, and mildly tender to the touch. I think it's the LIS site.

Yes, I've been taking Miralax daily, along with about 1 TBS and 1/2 of M.O.M. I definitely was on Miralax before LIS, and after. I don't see how I would have survived without these. I do need to wean myself from M.O.M., though. The CRS has said a number of times that he doesn't mind my being on Miralax. He said something to the effect that it's not habit-forming like M.O.M.; Miralax just draws water into the bowels. You should ask your CRS, though, to be sure. Eventually, I want to get off of Miralax, too. It burns, and I'm afraid it might be affecting tissue.
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Re: Never Told About Fistula

Postby queenofpain » 28 Oct 2013, 09:52

Savaici wrote:I think, queenofpain, that you are very wise to read up on Fistulas. As far as I am aware, they very seldom heal on their own, but sometimes antibiotics do help.

It's very strange that the CRS said nothing about this, and I would definitely follow up on it. You will find quite a lot to read on here about Fistulas and also posts from members who have had one.

All the best to you!



Savaici, the CRS's nurse left a voice mail today, and said the medical assistant who did the data entry entered 'fistula' by mistake. The nurse said 'fistula' was now removed from the system, but she will inform the CRS and resident. They'll call if they think they need to (the CRS is away this week). GEESH!! I spent a week wondering whether I really had a fistula, or if it was a mistake. The CRS had told me at the visit that an MRI or x-rays were a waste of money (I stated that I wondered whether we needed to do this), so I couldn't understand how he could fail to mention fistula. There's some soreness, and tenderness at the site (in a much less form now than this summer or post-LIS surgery), and I'm thinking that area isn't fully healed, i.e., scar tissue irritation. I am very relieved at this moment to learn they made an error!
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