surgery= fistula cure?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/21/2008 5:54 AM (GMT -6)   
hi everyone- so I've had an RV fistula since November- it was not found via CAT scan or Gyn. exam, but let me tell you- it is alive & well! Currently, I have the beginnings of an abscess, right in the spot where the fistula is- lately my UC symptoms have been acting up, going to the bathroom a lot, which promotes the fistula to get infected all over again. So anyway- will the removal of my colon & rectum cure this thing for good? And also- worst case scenario with this abscess- it'll either go away on it's own or become terribly painful....right? and then what? It's Friday morning & I don't want to wind up at the ER this weekend which vaginal pain! Darn it......  















































diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/21/2008 6:49 AM (GMT -6)   
You might want to think about treating your current abcess so it does not fistualize. Talk to your surgeon about your current fistula. Without really knowing where the tract is it's hard to say if it will go away with your surgery.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/21/2008 8:20 AM (GMT -6)   
thanks- I feel like what with the upcoming proctocolectomy, i want to get thru that & see if it goes away, the fistula. I have an scrip for ciprofloxacin that I haven't taken- I will call my GI today to see if I can use that in the hopes it'll make the abscess get better. It's always something....

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/21/2008 8:23 AM (GMT -6)   
yes get the abcess treated asap! usually anti biotics help it clear at least temporarily. If you dont ur right, it can become very painful, iv had moments where i couldnt walk for days, had to go to the er riding in the car on my stomach, and had to get them lanced...not the funnest thing in the world
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/21/2008 11:39 AM (GMT -6)   
It took care of itself! I was at the YMCA with my doughter for her swim class...it burst open! Good thing I always wear a maxi-pad! So i ran home & got right into a hot sitz bath, to clean it out. My GI is supposed to be calling me this afternoon. Now my isue is- what do
i do with it now? i can see the hole if I look in a mirror. How do you keep one of these things from becoming infected? I'd like to hold off 'til my surgery (6 weeks) & take care of all this nonsense then.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 3/21/2008 6:06 PM (GMT -6)   
Hi Eva Lou!

I myself have a RV fistula. My first surgery was back on June 21, 2007. My colorectal surgeon went in to do some reconstructive surgery of muscle and nerves. Because of having a baby 21 years ago I had growing problems of incontinence because of a botched episiotomy that caused a 4th degree laceration. My doctor told me that when women get in their 40s you lose muscle use. So, he said he could fix me so I would have more control and put more of a spread between my vagina and rectum. Well, the surgery seemed to go well, but within two days I was in such horrible horrible pain whenever the doctor checked down there and when he went to do my first dressing change. It was the worst pain I have ever experienced. On June 27, he had me back in the surgery room and found that I had an abscess as big as a softball. So, he fixed me up again and put a drain in. I went home on July 5. By July 23, everything fell apart because of the infection and I went back in for surgery. He re-did his work and then gave me a temporary loop ileostomy. My fourth surgery was on October 9. I still had a RV that wouldn't heal. He tried to fix that and also gave me a z-plasty (?) some type of criss-cross stitching. I now have a "bulge" down there. Thank God, I've been married for 24 years and my husband really loves me! : ) When I met with my doctor again in November, I told him the fistula was still there. He looked at it and was just as discouraged as I. He then wanted me to meet with another surgeon in his practice in December, so my husband and I went. That doctor simply told me I needed to wait another 3 months and then look at it again. By that time, I had called Cleveland Clinic and sent "ALL" my paperwork to a female doctor. My husband (who has gone to every appointment with me) and I went to Cleveland Clinic in February. They ran a zillion tests on me. The doctor seems to be very dedicated. I was impressed. So, my fifth surgery is scheduled for May 30 to fix me again. This doctor said if my surgery goes well, I can consider plastic surgery to fix the "bulge" (which is partly edema). Then several months later I can have my ileostomy reversed. My 3-month temporary ileostomy will be more like a 2 years temporary ileostomy.

There is another type of procedure out there that you may want to consider, which I will if I never get myself healed, it's a modified Koch Pouch called the Barnett Continent Intestinal Reservoir. Check out their website www.bcirostomy.com
A nurse you can contact at The Continent Ostomy Center at Palms of Pasadena Hospital is Susan Kay, R.N. She’s the program director 800-336-0789. Very interesting stuff! She sent me a complete packet of info and a CD.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/21/2008 6:44 PM (GMT -6)   

scary stuff, huh? I talked with my GI- he was glad to hear that the abscess had burst- basically, he said if you come into the office with an abscess, they lance it, drain it, then put you on antibiotics for about 10 days. So, he called in a couple scrips for Flagyl & cipro, told me that if I wanted a Bloody Mary on Sunday to wait 'til monday to start the meds, to take sitz baths 2x day, & that's about it. He also thinks my upcoming surgery (proctocolectomy) will cure the fistula. If i was opting for a jpouch, it could mean trouble since I'd still have a rectum. But I"m not going that route, so hopefully things will be fine. I of course plan to tell my srugeon, since I did not have this the last time we spoke. Jeez....what a day though. Now that the fistula is visible, it drains a lot... Good luck, Ohio- it sound absolutely awful, your experience! My fistula is where my episiotomy was too.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/22/2008 8:41 AM (GMT -6)   

A note of clarification, if one opts for a j-pouch the rectum is removed.  The j-pouch basically replaces the rectum.  Anyone opting for surgery to UC should have both the colon and rectum removed.  If that is not the advice given by the surgeon I would highly recommend a second opinion.  UC affects both organs and to be cured of the disease they both have to go.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/22/2008 9:35 AM (GMT -6)   
I thought they kept the rectum in???? So you would use the rectal muscles to expel the pouch contents? In any event, both my GI & surgeon recommend the total proctocolectomy, so I ought to be ok.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/26/2008 6:11 AM (GMT -6)   

Stacie, that's awful- do you still have your rectum? I knew I had an abscess because it was a very sore, raised bump where I thought the fistula was. I didn't know when it burst, per se, but I went to the bathroom & a LOT of gross, pus-sy, stuff was on the tp.... & I kept wiping & wiping & more stuff kept coming & coming...so I figured it out pretty quick! Plus, instead of being sore, now that area was itchy & not very painful. Totally gross.... Not to be too nosy, but how are you intimate? I fear that if I am, stuff will get into the fistula & cause it to become infected. Jeez, if surgery does not make this thing go away.... I can't even think that!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 3/28/2008 5:26 PM (GMT -6)   
I had my ileum perforate in feb 07so i had emergency Sx for that then 1 week later I suffered ileus where my colon didnt wake up so more emergency surgery which I woke with an ostomy. I had the ostomy reversed in june 07, the stoma healed wrong, moron resident got feces from the stoma in my incision and refused to flush it out with sterile saline etc so each Sx I have had since then I have wound infections. I was stopped on all of my CD meds after the 1st Sx in February 07 and was placed on preventative meds (just pentasa) 1 month after the ostomy was reversed. I ws sufferieng from pain and both my GI and surgeon figured it was me just healing.

The stomach pain continued a few days after seeing the docs and I had staples which had been removed 2 weeks prior but a few days before while at the surgeon he removed the nylon sutures and part of 2 of them remained in since they were in me 4 weeks. I removed 1 part that night then a few days later my belly popped like a zit it became infected where the suture piece was, the MD said it would make its way out.

Then about 1 month later my joint pain assoc with my CD returned and my GI called in a 3 month supply of entocort to use if I felt it got severe enough. I used it for about 1 month with no help and the abd pain continued even after the wound infection completely healed by Sept 4th. Around Sept 19th the same area reopened (it was flush against my belly button ) it was a Sunday and my doc was on vacation for the whole week I was instructed to see one of the other MDs there the following day (which was a monday). At that point just pus was coming out, later that day feces began draining from there too. once it had begun to drain that pesky pain I had had for a few months was finally somewhat relieved.

I used Cipro, and other methods to try and let it heal by itself. I went in to the hospital in November had a picc line placed so I could give myself TPN nightly and have minimal clear liquids to see if bowel rest would heal it. The picc line became septic and finally my MD saw that the mucosa came out (it wasnt the first time but the 1st time he saw it) so he knew surgery was my last option. My fistula was enterocutaneous and feces would go through bandages like crazy where I would soil my clothes within a few hours I would wear a facecloth over a bandage which I would also use tegaderm over to help from seeping.

I had a fistulagram to determine what intestine the fistula was connected to as well as a colonoscopy prior to Sx then I had to postpone Sx since I ended up with a cold. I can tell you Humira helped greatly but I had to go to dbl the dose of the traditional dosing and I feel had I gone on the higher dose sooner that may have helped without Sx. I was actually going on humira for my joints and while awaiting insurance approval the fistula came through.

I had my fistula surgery January 11th again I ended up with ileus but it was cought in time to where I had an NG tube for 5 days but that beats an emergency ostomy again. Unfortunatly the pathology showed the fistula was my CD that remanifested so soon after Sx and it was not just a complication of ABD Sx. I had a wound infection again therefore I had to postpone my humira shots. I went almost 2 months without it. When I began it again my GI had me try the traditional dose but I have already been suffereing from pain at the anastamosis site and joint pain again.

I have seen my GI since and have gone back up to 1 shot per week again and if things arent better pain wise come mid april I will be going for another MRI Enterography.

I hope things work out well for you
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/29/2008 11:03 AM (GMT -6)   
Eva Lou,
I had a RV fistula for years and it went away after my proctocolectomy. I hope yours goes away too after surgery.
Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/29/2008 11:50 AM (GMT -6)   
YOU take care! I'm glad you're home... :-)
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 4/1/2008 9:24 PM (GMT -6)   
Dragonfly137927, I just read your posting. I am so sorry you have been through so much. I hope things get better for you. You know, two years ago my sister passed away just shy one month of her 45th Birthday. She had a kidney transplant when she was 17 years old, but it did not work out. So, from 17 to the day she died, she was on dialysis three times a week. Sometimes, it was even 4 to 5 times if they couldn't get all the fluid off her. I'm just so glad I was not going through any of this when she was alive or I couldn't have helped take care of her all those years. It's just amazing what are bodies go through and how much they can endure. When I'm feeling depressed and helpless, I always try to remember my sister's positive attitude and perseverance.

Eva Lou, please let me know how your surgery goes.

I didn’t know I had an abscess after my first surgery. I was just in terrible pain when the doctor looked down there and did a dressing change on me. It was unbearable. He thought at first that I just didn’t have a high tolerance for pain. After the second dressing change, he knew there was something terribly wrong. I believe they smell bad too, because they’re an infection. This would be another indicator.

I hope to God my fistula heals. I’m going for surgery May 30 at Cleveland Clinic. I’ll let you know if Dr. Tracy Hull does a good job.


Take care!


Mary
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