Share Facebook
Crohn's Disease Forum » Surgery » Fistula Success Stories » Advancement flap surgery on Tuesday FINALLY


06-28-2014, 06:53 PM   #1
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Advancement flap surgery on Tuesday FINALLY

This is kind of long, lol, sorry

Well, I FINALLY have my advancment flap surgery scheduled for Tuesday July 1st. My issues have been going on for a little over a year and I am really excited that this could be the beginning of the end. For those of you who don’t know my story, Ill fill you in really quick…

I had my wisdom teeth pulled on oct 31, 2012. They put me on pain meds (norco) without warning me of the side effects. Needless to say, I took too many of them, it made me constipated, and one day I had a BM and strained too much and then had EXTREME PAIN everytime I used the bathroom after that day. I went to a GI and he told me I had hemmeroids and gave me creams and suppositories for about 3 months. They helped while I was taking them, but as soon as I stopped, the pain was back. I had a small pea size bump back there that kept getting bigger and more painful until one day it was the size of a grape and I couldn’t walk. The GI sent me immediately to the CRS and he numbed me and drained it and told me I had a fissure. So it made sense why it felt like I had GLASS coming out of me every time I had a BM. He prescribed more creams and a month or two went by and I was still in pain daily. So he did a fistulotomy. He said I might need a seton, but thankfully I didn’t because the fissure was superficial. He said the healing would be 3 days, but over a month later and I was still in pain. Then one night I got a really high fever and a weird pressure like pain right under my tail bone so I went to the ER (On October 31, 2013). Turns out the fissure turned into an abscess. So he drained it and put in a seton.

The pain was so bad and I couldn’t sit or stand for too long and I was miserable. They told me wait 6 weeks. During those 6 weeks I discovered this site which got me through my hard time. After 6 weeks I went back and the CRS told me he wanted to change the seton to a rubber one because he thought it was causing me uncomfort. Went under for surger, and woke up find out he found another fistula and put a second seton in (this was beginning of December). I was so despressed. Now I have to deal with 2 of these damn things?! Well, the pain STILL didn’t stop, and I was still getting stripes of blood in my stool. I was scheduled for surgery for February 10th to see if he could take out the setons. Well, I woke up to find out, not only did he not take out the setons, but he ADDED ANOTHER ONE. That makes 3! And this tiem I was in the hospital for 5 days because they found some weird bacteria. While I was in the hostpital they put a picc line in my arm to I could administer my own meds. I just kept getting hit harder and harder. I was super depressed and it was extrememly hard to see an end in sight. He told me he would take out the setons in 3 weeks. I went home from the hostpital and woke up and had a BM and all of a sudden blood starting pouring out. I was home alone so I FREAKED out and called and went to the ER. The blood stopped about an hour later and the surgeon said everything was fine.

So, 3 weeks came, and we scheduled the surgery, and then the next day he called me and CANCELED the surgery and said that his advisor recommended that we wait SIX MONTHS to take them out. Well, I spend the next few days crying my eyes out. Now I have to deal with this pain for 6 more MONTHS?! As the weeks went by, for the first time in a year, I started to feel better and better. The third seton was what I needed apparently. I was finally able to work out again, and live my life as normal as possible with 3 setons. SO, here I am 5 months after my last surgery, feeling better then I have all year. So I have high hopes that this advancement flap surgery will be my last one. The CRS informed me that there is 80% success rate. Im very nervous but I am hoping for the best since I feel so good now. I will keep a diary of my healing after the surgery because there is not too much info about that! Any prayers are definilty appreciated on Tuesday.

Those of you on the begnning of this mess or even in the middle, hang on, it does get better. I had no hope left after all of these surgeries and all of this pain. But I made it through and I finally feel great. It does get better!
06-28-2014, 07:21 PM   #2
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
· Stoma
Oh my, what an ordeal you've been through. My heart goes out to you.
I hope it works.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
06-29-2014, 05:25 PM   #3
Polar bear
 
Join Date: Nov 2013

My Support Groups:
@justbreathe8, you are in my prayers for a successful surgery and speedy recovery.
06-29-2014, 09:06 PM   #4
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Good luck with the surgery! I really hope it's successful for you.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
06-29-2014, 09:14 PM   #5
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Thanks guys I really appreciate it! Terrified would be an understatement. I feel like my life depends on what happens Tuesday.
06-30-2014, 12:44 PM   #6
Cookie
Senior Member
 
Cookie's Avatar
 
Join Date: Jan 2009
Sorry to hear of your troubles justbreathe. Sounds like you've been through a lot. I just wanted to post and help ease your mind a bit about the surgery. I have had it twice (not sure if it was the same fistula or a new one the second time around, but they were very close in location). The recovery is not that bad. Plan to do very little physical activity for at least a week. Both times I took a two week LOA from work. Feel free to PM me if you have any questions. Do you know if your surgeon is planning an aloe reinforcement? I had this the second time but not the first and I have had no problems with the fistula since. I think it may have made the difference.
__________________
Diagnosis: 2003, Crohn's colitis, peri-anal Crohn's
Current meds: Remicade, Imuran, Prednisone (tapering)
Previous meds: Cipro, Flagyl, Canasa, Asacol, Lialda, nitroglycerin (topical for fissure)
Surgeries: 2 flap advancement surgeries for complex fistula
07-08-2014, 03:58 PM   #7
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Just wanted to give a quick update…Im a week out of surgery today. They told me before the surgery that I wouldn't have to stay the night, but I ended up having to stay for 2 nights (and couldn't pee so I needed a catheter, yuck). THe surgeon was able to take out all 3 setons and sew the flap. He also cut the superficial fistula he said. He had me on a liquid diet for a week and on constipation meds so that I wouldn't have to pass any stool passed the surgery area. The pain wasn't TOO bad, it was worse with some of my other surgeries. So now a week out, I had my first BM which i was terrified to do, but there was no pain at all during it and it seems like so far Im okay after it. We will see what happens from here, but so far, things are going as well as they can.
07-08-2014, 07:49 PM   #8
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
Just wanted to give a quick update…Im a week out of surgery today. They told me before the surgery that I wouldn't have to stay the night, but I ended up having to stay for 2 nights (and couldn't pee so I needed a catheter, yuck). THe surgeon was able to take out all 3 setons and sew the flap. He also cut the superficial fistula he said. He had me on a liquid diet for a week and on constipation meds so that I wouldn't have to pass any stool passed the surgery area. The pain wasn't TOO bad, it was worse with some of my other surgeries. So now a week out, I had my first BM which i was terrified to do, but there was no pain at all during it and it seems like so far Im okay after it. We will see what happens from here, but so far, things are going as well as they can.
Thats great news! What kind of flap did they do? I am also suffering with abscess and fistulas:-(
07-08-2014, 07:54 PM   #9
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Thanks! I'm still really worried and every little thing that I feel freaks me out :/ I had advancement flap surgery... He took tissue from other part in there and sewed it over the 3 internal fistula openings. I hope it works, I'm so done with dealing with this.
07-08-2014, 07:55 PM   #10
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Do you have setons?
07-08-2014, 08:52 PM   #11
Polar bear
 
Join Date: Nov 2013

My Support Groups:
Hi justbreathe8, sending you healing prayers for a speedy recovery....
07-09-2014, 05:48 AM   #12
Flarkie
 
Flarkie's Avatar
 
Join Date: Jul 2014
Hi,
Yes I have Setons. I have been sick with these fistula's and abscess For more then two years. They operated me 51 times and no result. Besides the Setons I also have a colostomy.
At this point they want to use the gracillus muscle to close the abces. This is also a flap surgery but I guest different from yours. Hopefully the advanced flap works out For you!!
07-09-2014, 06:59 AM   #13
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Oh wow, I'm sorry you have gone through all of that! These things are terrible and I wouldn't wish them on my worst enemy. Has the colostomy worked to help heal the fistulas? When do they want to try that surgery?
07-25-2014, 03:16 PM   #14
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Well just saw my surgeon today so I figured I'd give an update for anyone who wants to read it! lol So Im 3.5 weeks post op. Ive had a lot less pain, and am able to get around more without having to sit down from the pain. My last appointment, my dr said I should not eat any fruits or veggies, or nuts or seeds, so I have been sticking to that. In the morning after a BM (I have one every morning) most days I have some brown "drainage". although Im not really sure that its drainage, rather maybe just my body clueing out what is left in there after a BM. And then after that I start having yellow drainage for the rest of the day. It is very little, but its still there. I can tell from my bi weekly pictures that I take of myself (lol, only people who've been there would understand) that the outside fistula opening has closed up which is why I was concerned about the yellow stuff coming out.
Anyways, the CRS did an external exam with a lot of pushing around that area and I had zero pain. He then did an internal finger exam, pushing on some internal spots as well, and again I had 0 pain. Well, 0 pain from that, but lots of pain from where I was biting my hand, while he was examining, lol. So yah, he confirmed my thoughts, and he said there there was no sign of fistulas and that everything looks great. He told me the drainage Im having is just the internal wound healing. (I hope he is right) He took me off all restrictions, and told me I should take a couple sitz bath because it relaxes the muscle and promotes healing (He had previously told me not to take them, and now since Im further along he recommended taking them). I have another appointment in 2 weeks.
I am very happy, and what a way to start the weekend! I still plan on taking it easy for the next few weeks. After coming this far, I don't want to over do it and mess anything up! I will report back! Hopefully this thread will one day be moved to the fistula success stories once I can say for sure that Im healed.
08-09-2014, 02:56 PM   #15
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Okay, I CANNOT believe Im sitting down to type this right now…the surgery was officially a SUCCESS!!! In 3 days, I will be 6 weeks post surgery. I saw the surgeon yesterday for a checkup, expecting him to say, okay, keep your fingers crossed still and Ill see you again in two weeks. Well, he did the internal exam with his finger and I was okay, then he put some kind of plastic intstument inside there to see how the flap looked. Then he started taking a bunch of pictures and a video. After he was done, he was like, give me a high five! (so I did) and then he said, well, looks like I do not have to see you back again unless you feel like something is wrong. And I was like, wait, WHAT? Did I hear you correctly? Ive been seeing you AT LEAST once a month for the past year and a half and now I NEVER have to come back?! And he said yes, the flap had worked and the place where he cut the muscle was dented (which means the fistula didn't reform) and that I was good!! So of course, I started bawling my eyes out, I could not believe it. and then he said, "don't cry, your going to make me cry" as his face got all red and I saw his eyes tear up. It was definitely one of those unforgettable life moments. So I said thank you, (not only for fixing me but now my butt is sure to be famous from all the pics he has taken lol) So yah, thats the end of my abscess/fistula story (at least I hope so!) Crazy. A year and a half ago and after all 5 surgeries, I started losing hope more and more that I would never be okay again. Right now I have a TINY bit of yellow stuff that comes out, but he said thats just from the dent in the muscle that is almost healed. okay THE END! If you have any questions, feel free to comment, or send me a PM and I will do the best to help. I wish you all the best of luck dealing with these terrible things. Hang in there and keep looking up
08-09-2014, 05:11 PM   #16
Bmwife
 
Bmwife's Avatar
 
Join Date: Jul 2013
Location: Cairns, Queensland, Australia
Brilliant!!!! What great news 😀😀
08-09-2014, 05:47 PM   #17
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Thank you!!
08-09-2014, 06:09 PM   #18
MrsW
 
MrsW's Avatar
 
Join Date: Jul 2014
Location: Australia
That is great news! Where was your fistula?
08-09-2014, 07:31 PM   #19
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
I had 3 anal fistulas
08-09-2014, 07:52 PM   #20
Polar bear
 
Join Date: Nov 2013

My Support Groups:
So happy for you!!!!
08-09-2014, 07:58 PM   #21
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Thank you!!!
08-09-2014, 09:40 PM   #22
theOcean
Moderator
 
theOcean's Avatar
 
Join Date: Jan 2014
Location: Toronto, ON, Canada

My Support Groups:
Oh my gosh!!! I'm so happy for you. This is such an awful thing to struggle with and you BEAT IT! Here's hoping more of us can have the results you had.

And know what this means? It's time to move this thread to the success stories section!
08-10-2014, 08:06 AM   #23
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Thanks ocean!! Woo hoo!! Yes, I really hope to read more people having success stories!
08-16-2014, 08:35 AM   #24
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Awesome news! So happy that the flap procedure was successful for you.
__________________
Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
03-20-2015, 06:08 AM   #25
justbreathe8
Senior Member
 
Join Date: Jan 2014
Location: chicago, Illinois

My Support Groups:
Ill share my update, as its been a while. I had my 3 setons removed in July of last year and had advancement flap surgery as well as a fistulotomy. They were both a success. Kind of expected to go back to "normal" but here I am almost a year later still having to have gauze between my cheeks daily because of irritation and terrified that any pain I feel that its going to come back. It sucks. I know this is a good problem to have compared to the alternative, but its not what I expected. We are trying to get pregnant and I know I will need a c section, which I never wanted. I guess its the best of a bad situation, but still a bummer. It has changed my attitude though, at least that is positive. Whenever Im having a bad day I just tell myself, well this time last year…. and then I am thankful for where I am at now. Maybe more time will completely heal it, we will see.
Reply

Crohn's Disease Forum » Surgery » Fistula Success Stories » Advancement flap surgery on Tuesday FINALLY
Thread Tools


All times are GMT -5. The time now is 09:10 AM.
Copyright 2006-2017 Crohnsforum.com