New Member jszic - Fistula question

Hi,
I'm a new member. Diagnosed with UC in 99 and had a complete colectomy the same year. I've struggled with bowel obstructions in the past but am now faced with a new challenge...peri-rectal fistula.

I've seen many more threads in the CD area so I decided to post here. The fistula has been draining for about 6 weeks, less now than in the beginning, but my colo-rectal surgeon thinks it's time for surgery.

I am very nervous because in my situation the surgery could compromise my level of continence....not a fun thought at 33. I'm not sure what to expect after the surgery, I may or may not have a Seton placed (it will depend on the track of the fistula). But what about pain, recovery time, frequency of sitz baths, time off work....

Any words of wisdom or advice would be much appreciated!

*You attached to an old post, so I made a new one for you so you get more responses*

Thanks Torranceboy! That makes me feel a bit better. Some of the other posts I read made it seem pretty excruciating.

You said you were hospitalized, mine will be out patient. Any idea what the norm is? How about packing? I've seen a lot of people post things about packing, did you have to do this? For how long?

The surgery is set for 9/1/11, I'm hoping that I can rest over the long holiday weekend and go back to work on 9/6/11. How was the Seton? Did you have trouble with it being uncomfortable or getting in the way of your normal daily activities?

I've had numerous fistula and abscesses.  I have a seton in my fistula, and it has been there since 2006.  Mine was done as outpatient.  He packed it during surgery, but I was told to pull it out the next morning and it did NOT have to be repacked.  I had minimal pain...didn't need to use pain meds.  I was completely back to normal in a week.  It causes me no discomfort or pain.  In the beginning do as many soaks in te hottest water possible as you can.  It promotes healing.  I use 4x4 gauze sponges 12 ply.  I fold 2 in half and place it against the fistula/seton opening.  This catches the drainage and keeps it from irritatng my skin.  I buy these at a medical supply store.  I change it whenever I use the bathroom.  If there isn't much draniage, I'll fold it over and reuse it.  Hope this helps!  Good luck!

 

When he did put a seton in i didn't realize it and found sitting for extended periods of time uncomfortable after the surgery. At one of the follow up doctor visits i explained it to him and he told me about the seton. I couldn't believe i had something in there and didn't realize it. At that point he literally took it out and i felt much better. It never really "hurt", it was just a slight discomfort when sitting. I found/find that I get squeamish sometimes when i sit.

Both times that I was in the hospital for the procedure i was never in overnight. just stayed long enough to make sure i could pee before they discharged me. ;)

My last checkup with my surgeon he said that my fistula track is moving and it looks like soon we will be able to do surgery have a good chance of it being successful.

Now I'm not so sure again...the fistula hasn't drained in over a week! It still is painful at times, not horrible but I notice soreness when I sit too long etc...

I don't want to go through an unnecessary surgery, but I also don't want to ignore a problem that could get a lot worse if I wait and do nothing.

I know the lack of drainage is a good thing and maybe even indicates healing. Has this happened to anybody else? Did the fistula return?

I really just hate surgery, I've had too many already!! I just want to feel confident that I'm doing the right thing! If that's even possible...

I called my CR surgeon today...had to leave a message. I have continued the sitz but without any change in overall symptoms. The question of diagnosis is an interesting one and one that I have a lot of concerns about.

What my CR surgeon has said is that this fistula could represent a fluke occurance and be totally unrelated to my previous history, it could be related to the UC and stem from what little mucous membrane of the colon that remains after my proctocolectomy, or worse case scenario is I was initially misdiagnosed with straight UC but really what I have is indeterminate UC in which case this could represent the beginning of chronic issues with fistula's and potentially issues with my pouch.

I am not on any meds

My surgeon did discuss quite a few different surgical options and the flap was one. He didn't seem enthused about that particular option for me, but really he said that the first step was to figure out where the other end of the fistula was and the track it took, once that was determined than he could better discuss feasible options to take care of it. The surgery on 9/1/11 will either be a straight forward fistulotomy or a Seton placement. If a Seton is placed it sounds like it will be a temporary situation in order to get to a more permanent solution (I.e. more surgery).

By the way...I love your member name. I am also an equestrian, hunter/jumpers. Thank god I have still been able to ride!! It's the one thing that keeps me sane.

Hi, I am a new member also - I have been a viewer for years on the UC forum but it seems like I have Crohn's, not UC

I am responding to your inquiry about incontinence issues - a little over a month ago, I developed an peri-anal abcess that apparently was very deep and difficult to get to along w/anal tears that had me losing copious amounts of blood everytime I went to the bathroom, which was over 10x a day - mainly in the morning

My gastro doctor sent me to a rectal surgeon who repaired the tears and drained the abcess - I still have discharge from the abcess and due to other health issues, he said it would be at least 6 months before it was completely healed - he also said that he believed that I had Crohn's, not UC based on his experience and what he saw

I am experiencing incontinence to the point of where I have given up wearing normal underwear and have bought depends

I had several accidents before I finally broke down and accepted the fact that I cannot control my bowels anymore

My surgeon told me that he would revisit the incontinence issue after the 6 month healing process has elapsed

I didn't have any setons or bands but he had to cut into the sphincter muscle to drain the abcess and then had to go into the rectum to repair the anal tears

The pain was indescribable - I was off work for 2 weeks and kept myself totally knocked out using perocets and loratabs for 6 straight days

Going to potty was a cry worthy experience - it still feels weird - it doesn't really hurt but feels like alot of pressure and get out of my way when the urge hits - I will run you over to get to the bathroom

I hate this disease - I was originally diagnosed in Jan 2008 with left-sided UC - since Jan '08. I have had kidney stones, pancreatitis, phlebitis, gastritis, gastric ulcer

July of '10, developed a blood clot in my calf that required a weeks hospitalization and 6 months on coumadin - came off the coumadin in Jan '11 -

Feb 28th 2011, I had double pulmonary embolisms and a pulmonary infarction and nearly died on my sofa in front of both my husband and 10 year daughter - spent another week in the hospital and had tons of genetic blood tests run on me to find out that I have Lupus Anticoagulant Disorder (I don't have lupus) so I am now on coumadin for life without any guarantee that the drug will keep me from developing more clots

Went on temporary disability and did not go back to work till the middle of May - lasted till the 4th of July when I started hemorraghing blood and experiencing the most painful bm's known to man

Diagnosed with anal tears and abcess - had rectal surgery and back off work for 2 weeks

After my surgeons comments about Crohn's, I have been reading the posts here and I know I have Crohn's - it is probably Crohn's Colitis but it is Crohn's

I have periods where I do nothing but throw up for days on end to be followed by months where I don't throw up at all

I've bled for 4 straight years and my hematocrit level hasn't been over 30 in 4 years - it's usually around 24 and is just now 27 and that is because since the surgery, I have finally stopped the excess bleeding - it is still in the stool but at least it doesn't fill the commode like it used to

Mornings and up till noon are the worst - I can't eat in the morning anymore because I can't make it to work if I do - I love food but I dread eating it now because I know what's going to happen

My daughter doesn't remember me being healthy and quite frankly, I don't remember being healthy either

I am worried about my job but so far, they have been awesome -

I don't like going out in public for fear of what if I can't get to the bathroom

I carry an emergency kit with me of a change of clothes, baby wipes, depends, plastic baggie and I HATE every minute of it

I hope you don't experience alot of pain or complications with your surgery on the 1st

I can tell you I did and still am - the surgeon said that if things weren't better within 6 months that he could go back and tighten the sphincter muscle up to help with the incontinence - I'm scared to death of the pain - it's the worst I have ever felt and I have felt pain from just about every organ that my body has and that is by far the worst

I'm sorry to have gone on and on but this is the first time that I have ever publicly vented to a group of people who know what it feels like to constantly feel bad

Pre-op labs came back OK. All set for surgery tomorrow at noon. Hopefully all goes well and this is all over and done with tomorrow in just ONE surgery!! Cross your fingers, I know I am...

Glad to hear it's over for you! Wish I had a magic remedy for the pain. For me the pain was only for about 2-3 days. Then I was able to sit almost like normal. Going to the bathroom, as you've already found out, is the most painful part! Make sure you don't wipe, and use water to rinse yourself off. Mine took a whole year to fully heal, and close up. I wasn't in any pain at all during most of that year though.

By all means take that pain pill if you need it! Hopefully you'll be like me and in a day or two be feeling a lot better!