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Facing surgery and scared

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Crohn's Disease
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Posted 1/4/2012 9:22 PM (GMT 0)
Long story short is I have a fistula that is not healing with just the Humira my gastro doctor has me taking. While the fistula is not draining outside my body anywhere it is causing abscesses near my rectum. Once had to be drained by the surgeon and the other burst on its own in the same spot the surgeon sliced open during surgery 6 months or more after it healed and closed up.

But I'm still have lots of pressure in my rectum when I stand/walk and the incision area will swell and get hard then go away, then get hard, so on and so on and then like I said burst through once so far. So the colorectal surgeon is telling me I need to have that portion of my small bowel removed as thats the only way to finally get rid of this fistula. He will also do some looking around my rectum area to see if I have any issues there or if its all just the fistula.

I'm just worried that for one its a major surgery and that in itself is scary but I worry about problems later on down the road. Like strictures and bowel obstructions from the scar tissue that will form etc.

But then on the other hand I hear about how many people feel sooo much better after have this done that they had wished it was done sooner.

Please tell me some of your resection stories, the good the bad and the ugly to help put my mind at ease. My head is just spinning.

I don't know if I should go for a 2nd opinion as this is my second surgeon, but my first colorectal surgeon. I was just seeing the general surgeon that drained my first abscess when I was in the hospital but when he couldn't seem to figure out where the fistula was or the cause of my pressure I thought it best to seek a colorectal.

So I'm just lost and looking for a bit of direction and experience I guess. confused

Posted 1/4/2012 10:14 PM (GMT 0)
I have had two open resections, due to bowel obstructions not fistulas. If you are able to have it laproscopically your recovery will be a little easier. There is pain either way afterwards, but they give good pain meds for that. You should try to walk as much as possible afterwards, as it helps to wake your bowels up and getting them working again. You should stay on a softer and blander diet for a bit afterwards, until everything heals and your body adjusts to the changes. Make sure you get on some kind of maintenance med afterwards to avoid needing a repeat surgery. I learned that lesson the hard way after my first surgery, and ended up needing another surgery only 3 years later. So get back on those meds:) Good luck and I hope your surgery leads to a long long remission for you. Hugs!
Posted 1/5/2012 7:42 PM (GMT 0)
Thanks you Nanners. He said he would try laproscopically but he might not be able to do it that way.
Posted 1/5/2012 8:30 PM (GMT 0)
The fistula is also in your small bowel? Are there any other organs involved?
Posted 1/6/2012 3:32 AM (GMT 0)
Not sure. I haven't really gotten any really clear answers on where it goes because I don't think they know or can see it on any of the CT scans or the barium enemas. They also did a fistologram after the last abscess blew but saw no tract it was a closed off hole where the abscess was/came out.

I have no drainage to the outside of my body either.
Posted 1/6/2012 3:35 PM (GMT 0)

Txgirl30 said...
But I'm still have lots of pressure in my rectum when I stand/walk and the incision area will swell and get hard then go away, then get hard, so on and so on and then like I said burst through once so far. So the colorectal surgeon is telling me I need to have that portion of my small bowel removed as thats the only way to finally get rid of this fistula. He will also do some looking around my rectum area to see if I have any issues there or if its all just the fistula.

So, here's what I'm not understanding...you have problems with abcesses around your rectum and the doctor wants to remove a portion of your small bowel? Unless they have found a fistula in your small bowel (or there is another reason to have resection like stricture, blockage, etc that you need a portion removed), I personally would opt for another opinion. 
Posted 1/6/2012 5:40 PM (GMT 0)
Right sorry was trying to make long story short. Yes they found a fistula after the first abscess was surgically drain. I had to go back and have a drain put in at the time they put the drain in they just thought it was a pocket of fluid that had not drained. So they put in a surgical drain higher up in my butt check.

It wouldn't stop draining so they shot some dye in the drain and looked at it under a CT scan. Thats when they found the fistula track and thats why it wouldn't stop draining.

I had that drain in for awhile. During that time I got on Humira and the draining lessened enough that the general surgeon I was seeing thought it was closed and pulled the drain.

I was fine for about 3 months then the old abscess area/incision started getting hard, would swell and go back down. Along with pressure in my rectum.

Surgeon thought it was another fistula near my rectum. More CT scan, nothing, then a barium enema looking for a track, nothing, also when it popped the second time he ordered a fistulogram, they shot the dye in the hole and saw no track this time. It was a closed off hole.

So they surgeon said he was unsure, maybe there was something left behind after the first abscess that just festered.

So I go home and am good for another month. Then the pressure in my rectum is back. So this time I find a colorectal surgeon. He reviews all my scans that the first surgeon ordered from the beginning of all this.

He thinks I still have the same fisula that they first saw and put the drain in for. Said that after all this time on the Humira and it hasn't healed that surgery is the next step.

But my other surgeon always said surgery(resection) was a LAST resort, he also thought I should see a new GI doctor, that he didn't think Humira was a good idea or good enough.

MY thinking from all the readings I've been doing is that I think there is more that my GI can do for me to help heal this thing BEFORE doing surgery.

I'm waiting on an appt to see her in a couple weeks to discuss what this new surgeon wants to do. I also am waiting to hear back from another GI doc that I had saw for a second opinion on putting me on Humira when I was in denial that I should be on it LOL.

So I'm working on getting second opinions, because surgery worries me that it will end up causing more issues later down the road. Thats why I'm asking about resection experiences here and advice.

Thanks :)
Posted 1/6/2012 6:51 PM (GMT 0)

Unless your doctor clearly said a bowel resection surgery, I would imagine that he meant a fistula/anal/rectal surgery.  Why would they take out part of your bowel if your problems are at the rectum? 

I've read that you can have internal abcesses/fistula connecting two different sections of your intestinal tract or from your intestines to another organ.  Those are the only situations that I am aware of where you would have potential for bowel resection.  The only other type of bowel surgery I have read about is a temporary ostomy to give your rectum a complete rest for a period of time.

Rectal surgery to remove the abcess/fistula tract (the first link below) could also lead to its own complications. It depends on where the track goes and how involved the sphinter muscle is. 

Here's a couple of links with some more background info:

http://www.mayoclinic.org/anal-fistula/treatment.html

http://www.medicalnewstoday.com/releases/42903.php

http://www.radiologyassistant.nl/en/492a8bd748185

 

Posted 1/6/2012 6:55 PM (GMT 0)
And if he is wanting to do a bowel resection, I would get much clearer answers on the hows and whys.
Posted 1/6/2012 8:52 PM (GMT 0)
shocked   tongue i there Txgirl30,

I have been through that whole terrible experience. I got Crohn's in 1977 and as a young girl i had those roughen fistulas until i was in my late 30's. back then mine was not treated properly. My gynecologist (spelling?) kept cutting them open and packing them so they would drain,this went on for a long time, all the soaking and wear dresses because it was sooo painful to wear pants, people used to say i walked like i just got off a horse. (not funny).

Anyway....This went on for years until 2003 i was on vacation with my family and i was in so much pain that soaking didn't even help,then i noticed a very dark grey square like figure going around my usual lump between my rectum and my other girl parts tongue

to the point I had to go home and go straight to the hospital. Different doctor's looked at it this time and said they had to surgically remove it because it was so bad they didn't no where to cut to drain it.

I went through the surgery,they sent everything to Dartmouth,they check the sample three times and said i had Colon Cancer and the reason why i am telling you all this is because my Fistula was not taken care of the right way and neither was my Crohn's... Always get a second or third opinion.

My fistula came right from my colon there were tracks all over the place from all the things they did in that gynecologist office. Thank God they are more up on all these things today then they were back then. Dartmouth told me that anytime mucus/inflammation sits to long the cells get a little wacky  (this is how they expand it to me) and they can turn cancerous and of course that is what happened to mine..Please ask them about this and make them explain it all to you before you make your finale decision.

Be Well,

Timeout

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