r-v just getting worse

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sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 9/4/2008 12:31 PM (GMT -7)   
So I'm on humira and it's the end of month 2. Things don't seem to improving much but I am better than 2 months ago. However, b/c of all the D, my r-v is just plain AWFUL. Stool pours out of it before it pours out of my bum. It just seems to be getting worse. Any advice?????? I just don't know how to handle this! shakehead
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 9/4/2008 12:31 PM (GMT -7)   
ooh--I mean my r-v fistula
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 9/4/2008 3:55 PM (GMT -7)   
hey. i feel your pain. I have a rv fistula that has been open for 10 months. It was simply awful. constant drainage that burned my bum and gave me a nasty butt rash. can't go swimming, bike riding, practically anything. and I felt like everytime i stood up i got a woosh of new stool pouring out. about 2 months ago I started to develop an abcess. So i went to my gastro and he put me on Cipro and Flagyl to get rid of it. Wouldn't you know that it helped my fistula too! Granted, it's still open, i can tell when i make funny farty noises out of it. But it has almost completely stopped draining. and the antibiotics also firmed up my stool. I have 2 bm's a day now instead of 15. It has been awesome. I feel like an almost normal person again. And I had a surgical checkup yesterday and the fistula is now starting to heal, finally! So, I don't know if you've tried antibiotics, but you might see if you can do a round to see if it helps. Just be aware of the possible side effects. I haven't yet had a problem, but there are those on here that have.

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: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 9/4/2008 5:30 PM (GMT -7)   

When I had mine, I was put on high doses of flagyl and cipro, and I was also on remicade. 

I know you are going to think this is crazy, because I did at first also, but my ob/gyn suggested that after I get out of the shower, I dry that area down there with a blow dryer on cool.  After it was completely dry, he wanted me to put on a coat of crisco.  So, I thought what the heck...it's not going to hurt, so I gave it a try, and it worked wonders for the irritation that the constant drainage causes.   I would also wear a pad to catch the drainage.


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 9/4/2008 5:54 PM (GMT -7)   
wow chroniemom - if i was a newbie i WOULD think that was crazy! But since I know CD, I know that anything goes! That is some great advise that I will try if my fistula starts a-leakin' again. I already wear the pad, but the dryer and crisco? sheesh, never would have thought of that.

Cheers c-mom, that's brilliant.
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: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/4/2008 7:19 PM (GMT -7)   
I've actually had an r-v scar down and my doc. patched it. I couldn't sit for over a week which doesn't sound bad until you have your first meal...standing or laying...totally sucked (plus, I was in school and had to stand in class!). However, it was worth it.

Beanermama
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 9/5/2008 7:24 PM (GMT -7)   
I very much feel your pain & humiliation. I have had my rv for almost 29 years. This is my 3rd month of Humira and it seems nothing has changed except I seem to have constant gas expelling now, where before it was just every now & then. I am incontinent of stool at least 3 or 4 times a week! I have been wearing a pad always but when the fistula first developed (after giving birth to a 10# baby) I was so inflammed & infected I couldn't sit, walk or even take care of my first born. My OB/GYN after 2 failed surgeries and more lotions and potions that did nothing but more harm, told me to try Raw Honey. I went home, bathed and slapped that honey front to back (talk about a sticky mess) put on a pad and went to bed. That night, my husband dreamed that bears were coming to attack me and I dreamed of bees and ants eating me alive, but two days of the honey (and it has to be raw) my skin was healed no more infection or inflammation! A beautiful natural cure. I have sinced used it to heal many things! I am sure some visitors wonder why I have a jar of honey in my bathroom, but no one has ever asked. Try this, I swear it works. Good Luck!

justarose4him
Veteran Member


Date Joined Feb 2004
Total Posts : 730
   Posted 9/6/2008 5:43 PM (GMT -7)   
Hey everyone .. I dont mean to sound ignorant ...but I was told with my march colonsocopy that i have 2 r...v fistuals ....but you all are saying that yours are outside ??? Am I understanding right ?

I mean would I know it ?? right away? feel it ..see it ? I feel so dumb ! But ... I wear a pad every day because I do have discharge from both areas ...like yellowish brownish ...it was more before my last Cade treatment ...but its still there ... and now I just had some major diarrhea ... good thing I am home because its uncontrollable ... the first one seemed like it came out from the front...but I am really not sure ...there was sooo much !

Anyway back to the R...v...'s .. how and where might I need to be checking for them ....

Thanks
Dx with Crohns 25 years ago
1 surgery ; 16 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  cymbalta, dIovan HCT, tramazone,
Remicade, FML (eyes ; steroid ) , Restasis (eyes)   
 

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