Fistulas for women...the faint of heart beware!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/19/2008 6:56 PM (GMT -7)   
Does anyone have any experience with fistulas?  I've recently had a fistula that ended up coming through to my girly parts.  So my bowel contents started coming out of the wrong exit.  Has anyone had this type of fistula?  I had surgery but I still have a ceton keeping the fistula open for now.  But it's horrible because now I'm constantly leaking.  I have to wear big cumbersome pads to obsorb all the fluid.  The dr. says this is normal until he goes in and puts a plug in the fistula.  Anyone have any brilliant ideas about how to make the situation more tolerable?  Even fistula success stories will make me feel better!
 
Sorry for such a yucky topic, but 'tis my life!
 
Cheers
lavender


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 2/19/2008 7:46 PM (GMT -7)   
Are you on Remicade?

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 2/19/2008 7:47 PM (GMT -7)   
I had fistula's but not in the same area and Remicade cleared mine up.

LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/19/2008 9:28 PM (GMT -7)   
I just started back on Remicade. I was on it a year ago and had a weird reaction. It scared me off. But my new Dr. recently put me back on it. I have my second infusion tomorrow. Remicade is supposed to clear that kind of thing up, right?

Cheers
lavender


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 2/19/2008 9:37 PM (GMT -7)   
I have a fistula -- perianal, not rectovaginal, but it drains right at the vaginal opening, so I can empathise.  I had the seton removed for a clinical trial I was in, but it still drains (which is preferable to it closing and needing to be cut again).  It's no fun and I have no real suggestions.  I wear cotton right next to it so that it doesn't make more a mess than necessary.  Sometimes it drains more than other times.  I wish you the best!  It's not fun, but you're not alone!

fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/19/2008 9:57 PM (GMT -7)   
Hi Again, LavenderBlue...I did say that I've experienced many things over 25+ yrs. I've had an intestinal/vaginal fistula for approx. 3yrs. In fact, it seems that it formed after I stopped the Remicade. I must say that I was a tad upset when I discovered that, what I at first assumed was breakthrough bleeding, was actually waste! I thought...noooo...what numerous tests/surgery are they going to put me through now? I don't think that my GI really believed me until he received the results of a barium enema which I was having for a separate issue. Anyway, the decision was to wait & see. Fortunately, I didn't have continual problems with this...although, eventually having an ileostomy may be part of the reason. I'm still routinely asked if I'm having any discharge but so far, so good. Hopefully, Remicade will do the trick for you. Again, best of luck w/ your upcoming infusion & if all goes well, careful w/ the Chinese food (I used to get really sick from Chinese...I learned that if I ate it in very small portions, I was able to better tolerate it...very common w/ Crohn's...many won't eat it at all, especially the vegetables & soy sauce). One good thing about an ileostomy, I can eat a wider range of foods, including Chinese! tongue
Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/19/2008 10:08 PM (GMT -7)   
Thanks fuzzy. They're planning on pulling my seton and putting in a plug after my 3rd remicade infusion. I'm just crossing my fingers that it doesn't re-infect. And yes, I'm totally laying off the Chinese!

Cheers
lavender


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/19/2008 10:24 PM (GMT -7)   
Thanks for the chuckle, LavenderBlue! My apology but I am laughing at you. Actually, it's because you sound just like me...sure, you'll lay off the Chinese food, for now...that's because the thought of it still makes you cringe (I'm just guessing here). Wait a few months & I bet you'll start craving it...as I said, it 'always' made me sick, meaning that I continually ate it! Should the cravings take over, just remember, try small portions...this really helped me. I expect that you'll do better w/ this infusion (if you're really nervous, ask your doctor about receiving Ativan). The Benadryl really bothered me (jitters & all that...the mild sedative effects of the Ativan would offset this & it's mild enough that you can drive after). Just an FYI. tongue

Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)


lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/20/2008 5:49 AM (GMT -7)   
My daughter had surgery in Nov for rectal fistulas. She notified me that they have come back. The Dr. called in an antibiotic and they will address it tomorrow when she's under for her endo & colonoscopy. I guess I wasn't aware that they keep coming back or do they never really go away. BTW, she LOVES chinese!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/20/2008 8:08 AM (GMT -7)   
i have perianal disease so i have rv and rectal fistulas. I didn't have an extremely large amount of drainage but i did have drainage from my girly parts. I thought it was blood too. But pantyliners have been sufficient, but expensive b/c i have to wear them everyday. I have about 5 setons in different places down there.

We thought remicade would work, but because i'd been taken off of it a few years ago when i developed a staph infection, my doc says i probably developed an antibody which caused it to be less effective so it didnt work in closing the fistulas. I decided to get the ostomy tempororarily due to the pain. I couldnt take it any more. We're hoping my fistulas will close with allowing my bowels to "Rest". I am also taking humira and i hope that will assist.

I know how embarrassing and frustrating they can be, but the severity differs for everyone, some people have rv fistulas that dont get treated b/c they are able to deal with minor issues with them. If mine had stopped at just air coming thru i would have been fine. but once the stool started passing thru It became embarassing i was constantly worrying about smell and forget intimate situations. I hope u find relief
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


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/20/2008 3:01 PM (GMT -7)   
haha fuzzy. you've caught me. I'm you in disguise!

thanks for the laugh back!

cheers
lavender


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/20/2008 3:07 PM (GMT -7)   
thanks for the book reference chas. I'll look into it. I pretty well stay away from fiberous foods. but i cave on other stuff.

praying4healing, i'm worried about the remicade working too because I took a year off from it. I don't have humira to go to if it doesn't work because i've already tried it. but i've heard there is a new drug similiar to humira that is about to hit the market. Does anyone know what it is called?

and good land! i hope that the fistula doesn't come back after the surgery!

cheers
lavender


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 2/20/2008 4:53 PM (GMT -7)   

The new drug similar to Humira might be Tysabri, it's not really new but it's newly approved for Chron's; newly approved as approved a few weeks ago!  It can cause sudden brain infections or whatever and severely disable or kill you though, so it's only available through a specially monitored clinical program.  It's also supposedly like $2800 for each month's infusion so if your insurance doesn't cover it I don't know anyone who could afford that on their own.

Another drug is Leukine, also not new but newly in testing for treating Crohn's, it's only in stage 2 clinical trials right now so it'll probably be a while before that one is used for Crohn's.

There is another drug in stage 3 clinical trials called Certoilzumab Pegol, I believe you have to complete stage 4 clinical trials before a medicine can be approved, but am not sure.  The drug supposedly works well and is tolerated well but there is no data comparing it to the other similar drugs like Humira yet, so who knows if it'll be a "better" drug or just another similar one so there are more choices.  Either way it sounds pretty promising so I hope we have another medication available to try eventually.


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/20/2008 5:47 PM (GMT -7)   
thanks map lady. this was really helpful!

cheers
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/20/2008 6:12 PM (GMT -7)   
I have had a r-v fistula that has been on and off active for 5 years. At its worst, I had full blown stool coming out of it which was so upsetting and very, very uncomfortable--especially itchy. More often, it's gas or mucus/blood/liquid. Of course, it's the most active when my Crohn's is the worst. The craziest is that when I try to stifle passing gas, it comes out the front even louder! Sitz baths with salt were very helpful. My gyn also suggested a hand held shower attachment to spray around the area. The key being to keep the area very clean. If in a restroom away from home, I'd twist up a tissue or some toilet paper and move it up there pulling out stool or whatever until the area was clean. My r-v is right at the opening of the vagina. At it's worst, I also added pau d'arco (an herb) to my sitz bath. When the disease in under control, I have very few r-v symptoms. My gyn said absolutely no tampons during my periods as this would keep stool/bacteria in the vaginal tract. Luckily I haven't had too many issues during swimming season. I do where a lightdays everyday--but it makes me feel even fresher even on days I have no r-v activity.

I felt very sorry for myself (and sometimes still do) until I read about Oprah's Fistula Foundation for women in Ethiopia. Very sad stuff.

Best of luck to you!! Hope the r-v settles down.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


IFlyBonanza
New Member


Date Joined May 2007
Total Posts : 2
   Posted 2/21/2008 7:48 PM (GMT -7)   
I've had an rv fistula for the past year.  It's gross and it sucks.  I just started on Remicade about 3 weeks ago, and, because my stools are now more firm, the poop doesn't come out from my v, unless I have diarrhea.  I still pass gas through it, though.  I've found that using Tucks pads helps a bit.  Also, I shower with a soap for sensitive skin.
 
HTH

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/21/2008 7:55 PM (GMT -7)   
thanks map lady that was very helpful! lavender, even tho the remicade wasnt as helpful for me the second time around. they said it was still giving some help to controlling my crohns, mayb that will b the case for you!
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


crohnie42
Regular Member


Date Joined Dec 2006
Total Posts : 371
   Posted 2/22/2008 7:58 AM (GMT -7)   
had a recto EXACTLY like the one you described for over 5 years.  Humira was the ONLy thing that closed it.  Remicade did not help me
Michele
~~~~~~~~~~~~~~~~~
 
Female Dx'ed with Crohns Disease in 1992
Been on every med for crohns that exists
Several Fistula surgeries
Dx'ed with Colon Rectal Cancer March 2007
Dx'ed with Stage 2 Vulvar VIN
On Chemo and Radiation for 6 weeks
Using Humira with excellent results
IN REMISSION~~~!!!!


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/22/2008 2:48 PM (GMT -7)   
Thanks everyone. I feel better and worse at the same time! I've only had my fistula for about 4 months, but it sounds like this could go one for years!

sammies, i have many of the same problems as you described, including the gas issues!

has anyone had a plug put in? did this help? reinfect? make any difference at all??
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 2/22/2008 6:46 PM (GMT -7)   
I was diagnosed in Jan 06 as severe to moderate CD. I was immediately started on Remicade prior to my resection in July 06. Built antibodies to the Remicade and was put on Humira. Now this is something you may/may not want to hear. I've never had a fistula or absess due to being on these drugs. So I'm trying to say maybe, just maybe their is some hope in the Remicade for you. Also, since I've never had one I'm probably not the best to suggest this, however, as far as the drainage goes you can go to your local pharmacy and ask if there are any specific sized surgical sponges you could use to help with the absorbtion issues. I would change them very often since you would be using them in the vaginal area too. Just a thought.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


cdc906
Regular Member


Date Joined Oct 2004
Total Posts : 58
   Posted 2/26/2008 2:16 AM (GMT -7)   
I know I am way late to reply, but I had a RV Fistula (3 years last December).  No medications cleared it up (Flagyl, Cipro, Remicade, etc.).  I have not had a flare since starting Remicade in July 2006, and because the fistula was not causing serious issues, we left it alone.  The drainage caused a severe pelvic infection at the end of last year, so we did the plug.  It came out 2 days after the surgery.  The tract for mine is very short and so the likelihood of it working was apparently not very good.  However, my surgeon has pioneered a new version of the flap, taking tissue from outside into the rectum while keeping it connected to blood supply.  Even though my Crohns was not active, the disease had injured the tissue inside, which is why the flap has had a lower success rate in the past.  I am proud to say that finally (4 weeks later) my fistula has closed.  I had resigned myself to living with it and I just hope his new technique will help others feel better about themselves like I do.  Only downside, I got a stupid Crohn's flare after the surgery so it took a little longer to heal, but even that is getting back under control thanks to my Remicade.
 
I hope you find something that works for you!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 9:54 AM (GMT -7)
There are a total of 2,733,001 posts in 301,075 threads.
View Active Threads


Who's Online
This forum has 151228 registered members. Please welcome our newest member, Acro1010.
318 Guest(s), 11 Registered Member(s) are currently online.  Details
damo123, RDP74, tickbite666, AnxiousTexan, NiceGuyEddie, iho, NiceCupOfTea, Melg, Fairwind, snowboat, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer