My Diary on Fistula

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My Diary on Fistula

Postby Garrod » 28 May 2015, 03:50

Hoping that at some point this will be moved into Success Stories forum, I will give a brief overview of my journey, maybe it will help others... I am 34 yrs old female, no Chron's or similar issues.

August 2014.
Experienced anal pain and stinging, very strong, with perianal lump. After all the googling I figured I might have an abscess, was pretty confident about it, but...

September 2014.
At some point I had a fever for a day or two, but at that point I didn't relate it to the anal issue. Went to a doctor who briefly and, to my taste, carelessly examined me and diagnozed internal hemmorhoids and gave a therapy for that. Had no choice but to trust her. Of course, it didn't heal, but slowly it got worst, lump getting larger and more painful. Had to fix my health insurance issues and going from general practitioner to finding a CRS took time, pain was getting worst, and only got to see CRS in October.

October 2014.
A night before I went to see CRS my abscess broke and started to leak; pain-wise, what a relief! He confirmed I had an abscesses (and didn't want to comment on colleagues wrong diagnoses) and said that instead of doing a surgery on it right now, we should let it leak and see if it heals; and hoping that I will fall in 50% of people who do not get fistula after it. Had antibiotic therapy and potassium-permanganate sitzbaths for 3-4 weeks, through the end of November.

December 2014.
Of course, fistula had formed. Had a surgery scheduled for December 17th. I was silly enough to have some water the morning before so anestesiologist didn't want to give me total, but had only a local anestesia. Which was kind of OK, but a little bit creepy.
It was a simple fistulotomy, with curettage, I stayed in the hospital for two days, didn't have much pain then. Advised to continue with sitz-baths, 3 times per day, once after BM in the morning, and two more times during the day. Cleaning with soap before. No antibiotics prescribed. Didn't have to see the nurse for wound cleaning and packaging, it was enough just to put a large gauze pad.

Pain got worse when I got back home, I wasn't on time with my painkillers, didn't take them every 6hrs, but sometimes later, then it would hurt a lot! All was fine when I took them on a regular basis.

9 day post-op: went for a check-up, doctor said it was doing well, I just had to make sure it was perfectly clean after BM, so no 'poo' would get into the wound. I never saw the wound, but did touch it, and during week #2, I felt under my fingers that large part of it closed, I could feel the new skin. Wasn't sure if it was healing to fast maybe. I never went for a check up after that, because mid-January I went on a trip to the US (I live in Europe), so my doctor said I should just continue to take sitz-baths and if I really want I can get checked by a doctor in the US. I took a trip full of hope it will all be healed and well soon enough. Gosh I was wrong.

January 2015:
Took a long-haul (26hrs) trip, no sitz-baths and shower, was afraid it would somehow affect my healing. A few days after I had some mild pain, probably being tired from the trip and a lot of sitting. The thing is also that I sit a lot (for work) during the day, that may have affected slower healing.

End of January, I could see a scar forming where my wound was, but there was a spot, red-violet and looks like a small protrusion. I figured that was small part that had yet to be healed and closed. It is also hard when I touch, and that area feels kind of irregular (not rounded deep lump like abscess did), sometime feels tight. Discharge and bleeding never stopped after surgery, the amount varied, of course, but it never smelled bad. Discharge yellowish, greenish, sometimes just transparent, sometimes slimey. Bleeding was higher after BM, specially harder ones. Alway light blood. I knew that was normal after surgery, so I just waited that it heals and that discharge and blood stop. And waited. And waited. But things remained the same for months! That small red-violet spot is still there, discharging and bleeding. There was nothing (fever or very strong pain) that would make me think it has become different and that I may have gotten infection. I couldn't tell that, and as I couldn't see things changing I didn't go to another doctor (a huge issue when in a foreign country), so I decided to wait for healing and going back home to see my surgeon.

So finally I arrived 10 days ago, and my surgeon is on vacation. So I have to wait another 3 weeks that he is back. Other surgeons in the hospital would not see me, but just make me wait for the one who did a surgery. Agony continues, so I am still waiting and waiting and waiting to see am I really healing slowly or I have another fistula that needs to be treated.

To be continued....
Garrod
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Re: My Diary on Fistula

Postby msimon » 28 May 2015, 12:43

Hi Garrod. Thanks for the update. I am so sorry to hear you are still struggling and that you have to wait longer yet. That is awful that they won't let you see someone else. I had a similar thing happen here over Christmas, my CRS was away and apparently my only option was to go to emergency (which is at least a 3 hour wait for someone that would probably not be familiar with LIS and such and end up hurting me anyway). I ended up going to my family doctor and somehow she got my CRS's office to find someone else there to take a look for me. After my CRS got back, I eventually ended up getting an unroofing surgery as it would get better on antibiotics but then kept coming back.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: My Diary on Fistula

Postby Garrod » 29 May 2015, 09:24

Hi msimon,
I am really tired of trying to figure things out on my own and with the help of the internet and forum. If I only I could tell if it's going ok or not, I feel as if I need to know either way.
Maybe I will try to get any other CRS see me, just so as they can tell if it's infected and/or another fistula formed; I wound't have anyone else perform another surgery on me, but if I need e.g. antibiotics, I'd have them sooner rather than later.

It's is already a lot to deal with, having this issue for so long works on my psychology, I can't imagine what's it's like for you and others who have to deal with this for a lot longer! How are you doing nowdays?
Garrod
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Re: My Diary on Fistula

Postby Garrod » 18 Jun 2015, 05:33

Finally had an appointment with my CRS, and my bad dreams came true, another fistula tract formed and I am having another surgery on July 9th. He says it is probably because it healed outside too fast...

I guess the wrong-doing from my side was that I dared to travel far away 3 weeks after the surgery, without the possibilities of having an examination. Did all I could with cleaning, sitzbaths 2-3 times per day for 6 months now, but didn't help...

Just trying to stay sane for the moment...
Garrod
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Re: My Diary on Fistula

Postby msimon » 18 Jun 2015, 11:20

Oh I am so sorry Garrod. :hugs: It's just the worst when our fears come true. At least you won't have to wait too much longer to get to solving this issue for good. Are you in pain? Do you have to go on antibiotics? Do you know if it's superficial?
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
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Re: My Diary on Fistula

Postby Garrod » 19 Jun 2015, 10:41

Thanks, msimon! I don't think he knows if it's superficial, but if it developed along the same tract, I guess it is, the previous one was simple. He just scheduled another surgery, so I guess he'll see once he's 'there'.
I am not in pain, no antibiotics; just a bad state of mind, bad timing, dealing with fistula surgeries at the time when other important things in life are difficult to balance (won't start to complain now ;)).

I recall, maybe 2 weeks or so after surgery, when I touched the wound, I felt large part of it closed, I remember I was surprised since from one day to another it felt so different (i didn't look, just touched it), I wasn't sure if that was good or it was too soon? And at that point I was already away and couldn't see the doctor. I assume that was the problem. In any case, it won't help now, but I keep thinking why did it happen, why oh why I have to go through that again....
Garrod
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Re: My Diary on Fistula

Postby msimon » 19 Jun 2015, 10:55

Yes, I hear you. Why indeed did that have to happen? It really sucks. I feel for you. I can;t imagine having to have another surgery back there but as I struggle I wonder if it is just a matter of time. I have read of people on here being told by their CRS to daily stretch their wound so it doesn't close too quickly and make sure it heals from the bottom up. Mine never told me that, maybe because he knows I am such a slow healer ;) I am still not healed! 4 months later...

Maybe the stretching would be something to ask your CRS about for your next surgery, although I suppose you will have more frequent follow ups this time? I can;t imagine it would feel good but may be a necessary evil.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
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Re: My Diary on Fistula

Postby Garrod » 20 Jun 2015, 18:03

There are good sides of being a slow healer! :)
Do you know what that depends on - how fast one heals?
What is it like in your case? 4 months sounds too long. Do you put something on the wound to promote healing?

I've read too about the stretching. My doctor also told me early on to take care when doing sitzbaths, not to sit on the wound because the water, containing antiseptic, cannot get deep enough to clean the inside of the wound. I guess stretching it, during that time too, may help. This time, I think I will definitely do whatever I can to prevent it from closing too soon.
Garrod
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Re: My Diary on Fistula

Postby Garrod » 31 Jul 2015, 04:21

The story continues....

I had another fistulotomy on July 10th. Again spinal anesthesia, managed well, the surgery lasted somewhat longer than the first one, which made me nervous, but the medical stuff there was so awesome and talkative, funny and cheering me up with jokes and chitchat during the surgery, that made me feel better.

Left the hospital on day #5. Had potassium permanganate sitzbaths 5 times per day while there. My wound was bleeding a lot, so doctor wanted to make sure all is ok and under control before I go home. I also had gauze tampons in the wound (it was rather high) that wouldn't fall out on their own easily (they should soak in the sitz bath and just fall out), so he had to pull them - woooow that a horrible pain and an extremely uncomfortable feeling! After that, life is beautiful! I regularly had painkillers while in the hospital, though pain was never really strong. Had painkillers also at home, but again, stopped soon after as there was almost no pain... Had a round of metrodinazole for 10 days. Sitzbaths as usual, 3x per day, after BM is obligatory one.

First check up two days after, which is day #7 after surgery. He says wound looks good and to come back in two weeks.

Apparently, fistula tract had two channels and was somewhat higher, up to the puborectalis muscle (I think?), the main muscle for incontinence, so there was a risk for that. He put a seton in there, that's supposed to fall on its own. I know it's supposed to help with continence, but presumably with draining too, and to prevent that it heals outside first. That was not clear to me actually, different kinds of and different roles of setons....

Went for another check-up yesterday, day #21 post-op. Looks good and clean, he says, should be healed in 4-5 weeks, when also my next check-up is scheduled. A few things bothered me :) here are his answers:

Swimming - can I? Of course, the bacteria in the swimming pools/sea are nothing to what the wound is exposed to during the BM, so if you clean yourself in antiseptic sithbath after those exposures, BM, swimming pool, you'll be fine.

Pregnancy - will I have issues during pregnancy or childbirth because of these surgeries and issues? His answer: If you want to have a baby, go for it, don't worry!! :)


The wound: what it looks like and how it feels. I looked at it in the mirror, every 5-7 days or so. The hole narrowed and healed more rapidly during second week and then kind of stagnated. I never saw a seton thread. Maybe I don't look close enough... so have no idea what's happening with that. Had bleeding until the end of week #1 or so, but the drainage continued, it's yellow, no smell. And some clear watery drainage too. Its amount is reduced with time and as the wound is getting smaller. I also heard here from others it's normal to drain more with seton.

I could start sitting only after week#2, that was a difficult one, given that I have to work (at home though), so working on my laptop while laying on my belly in the bed was not very comfortable! The area kind of feels strange from the inside, like tight or as if I feel that seton... not sure, it's kind of weird. But no pain though.
Garrod
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Re: My Diary on Fistula

Postby msimon » 31 Jul 2015, 11:49

Thanks for the update Garrod. It's good to hear that things are going well...slowly but surely and at least right on track at least as far as your CRS is concerned. I hope things continue to improve. Sorry I can't offer much info as I am really not familiar with this type of surgery. Your Doc's answers sound logical though. As for incontinence, the internal sphincter is the major muscle for that. The puborectalis is the one that holds back solid stool, the internal sphincter is more the seepage protector, if that makes any sense. Try not to worry too much about it. Easy to say I know ;) As for the baby, you could always opt for a c-section...
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
msimon
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Posts: 1343
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Joined: 08 Aug 2014, 19:38
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