Fistulas and uncontrolled gas passing

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Beanermama
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/29/2008 10:33 PM (GMT -6)   
skull  I am new on this site, yet an old hat with CD.  My current problem is uncontrolled gas passing through my Rectal/Vaginal Fistula.  It seems if I breath in, I fart out. Silent but so very deadly. Very embarrassing. I've tried GasX(simethicone), doesn't work. I am wondering about the charcol caps.  Does anyone have any ideas?  Diet is not an answer, it doesn't matter if I fast or gorge, it just seems that as long as I'm breathing, I'm farting.  My doc just patted my knee and said "Oh, don't let it bother you!"

AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/29/2008 11:17 PM (GMT -6)   
Don't you feel like whacking the Dr when they say something as totally insensitive as that!
 
I understand the embarrassment. You're happily sitting there and then get up to go somewhere and .................. I find if I burp a lot, it does help when the thing is playing up as it seems to take the pressure off. I just joke after I belch and tell everyone that 'I'm a delicate flower' !!
 
I also have handy hand cream that has a perfume so I rub it onto my hands when the fistula smells. You get to the point that you don't want to eat in public or even with family. Close friends and family understand but....  I find the worse offender is the meat and 3 veg meal, as well as apples and onions (am allergic to sulphur). Have less of a problem with Thai and Indian food for some strange reason. Perhaps it is the chilli that helps? Don't know. I also eat oats and yoghurt in the morning and that seems to help. I think it's just hit and miss in finding what makes you windy but somedays no matter what, it plays up. I think stressful situations don't help us either.
 
I did have surgery on the 6th August to repair the RV fistula using a new form - neuralised bovine plug but unfortunately it came out after 10 days. :( At least it was a total failure as the Gynie Dr is willing to try again as it is less invasive then the other options the GIs were giving me (6 months on a bag and a 70% success rate).
 
In fact the GIs never bothered to do exploratory surgery on me, only the Gynie did and she showed the photos to a top Gastro Prof here in Aust who said the advancement flap repair the other Gastros wanted to do was too severe and should only be the last resort when all other options have failed. My Gynie is thinking of doing a combined surgery option to improve my chances and am now waiting on a referral to see another gynie specialist so that the 2 can work together.
 
Don't know if any of the above helps but you're not alone in the embarrassment stakes. Me, I've had it for over 8 years but was misdiagnosed until 2005........ Since then have been searching for options to repair it without a bag. Flagyll/Metrogyl is commonly used to heal it but of course, I'm allergic to it ;(   Am now on 6MP and have read research about using the drug to repair it. They've had success when people take it for 1 year at 5 to 10mg for every 1kg (2.2 pounds) you weigh but have worked out I would have to drop another 17kgs (am already classed under weight with a BMI of 18.5) or would have to double my current dose. Ah well, will keep on trying.
Take care
Bron 

SouthPaw33
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 8/29/2008 11:56 PM (GMT -6)   

Don't have the uncontrollable gas yet, but I'm sure it is coming. My dr. did make a similiar comment to me about my latest rectal fistula. He basically told me that I was a man and to deal with it. I had never wished this disease on my worst enemy, but last week I came close. I have had several fistula's in the past, but this one is making my life miserable.. It is to the point where I have to lay on my side or tummy if i want to rest.. I can't stand for a long period of time because of my leg problems and I can't sit because of the you know what.... so I'm kinda screwed until well it seems like forever. Long story short.. My current gi is completely lost with my case so he is referring me to another gi.. only problem is I can't see that gi until sept 25. I normally get the french tube to drain the rectal fistula's, but they come back as fast as the drain. So they won't drain it and they won't give me another dose of humira till the other gi sees me. September 25 seems like 100 years away right now! I did go to my family doctor yesterday though and she has IBS and she perscribed me something called Analpram. It helps numb the pain for a short while, but it has some steroidal ingredients in it... so beware if you use. Also I have been having another problem that I wonder if you or anyone else has. Sometimes I will have the urge to go potty[ sorry about the lingo... have a toddler in training] and I will go and nothing but gas comes out.. no movement just gas. it has been happening alot lately too. Sorry that I havn't been much help though. I will also be prayin for ya and hope you find relief very very soon!

 

 

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/30/2008 12:37 AM (GMT -6)   
That is called tenesmus -- the feeling of needing to go but nothing except gas/a tiny bit of mucous or blood comes out. Happens a lot when I am bad. Sometimes some pretty painful spasming with no production. It's so frustrating!

I do get bits of gas through my fistula, and sometimes it makes a squeaky sound, almost as if letting air slowly out of a ballon. It's not fun at all...
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 12:46 AM (GMT -6)   

Hi Southpaw33

Drs can be so insensitive. I'm sure if he had prostate and had to have his testes removed, he wouldn't appreciate it if you told him to be a man and to deal with it. Also people (my parents included) seem to confuse fissures with fistulas until you have to SPELL out exactly what it is. 

Yeah, passing gas only can be an issue. You start to think you've had a ghost poo! (oh my how we discuss these topics that we wouldn't in a face to face social setting!!! LOL)

I hope you don't start the gas side of things. Having a fistula is bad enough, being socially embarrassed by noisy or smelly gas when it's unexpected can be mortifying.

Cheers

B


Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 8/30/2008 3:36 PM (GMT -6)   
man, the r-v fistula is the worst aspect of the disease for me. It leaks stool, passes gas, and makes my sex life miserable. I have no answer for you but a heck of a lot of empathy. Yes, the gas from the r-v stinks too. yuck. I had much luck with 6mp and it did close for a while--but I got allergic to the 6mp. When my D is bad, the r-v fistula kicks up big time and hangs out for a while. Itchy, smelly, darn gross.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 9:12 PM (GMT -6)   
What sex life!?? I feel like a vestial virgin. Funny thing is that in the last 3 months I've had to do 3 pregnancy tests as am on a clinical drug trial and had surgery (failed) to repair the RV. Kept telling them that if it was positive they bigger get ready for the second coming as there would be no other way I could possibly be preggies.
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


Beanermama
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 9/5/2008 8:55 PM (GMT -6)   
Thank you all for your comments, I have learned just from this post about the plug,(thank you Aussie), I'm a bit pissed I had to hear about that on the internet and not from any of my compassionate docs. I am divorced and actually have had decent sex but none of it being spontanious and believe it or not my ex husband is the only one who knows I have this fistula problem. My last boyfriend and I have been together for the last 6 years, he knows about the CD but I am still too embarrased to tell him about the fistula, he just thinks I have a thing about cleanliness, (have to shower before sex). I also have a fan going in every room to try to blow away the gas when I have company at the house, otherwise I stay down wind! Again, thank you all, it is so great to have an outlet to laugh and cry with people who really understand. Hope to stay on this site to repay your kindness with my knowledge and experience of over 35 years of living with CD.
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