Fistula without pain

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nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/1/2008 2:57 PM (GMT -7)   
I have mild crohn's and peri anal crohn with fissure since 2003,recently I had swollen in my right labia so I did MRI and today I saw my GI and he said in my MRI they found very small fistula canal extending along the right labia.I was shocked because I fill very good,,no diarrhea, no anus pain,no rectal bleeding,no abdominal pain,nothing!!!is it possible to have fistula and not notice it???
he said I have to start Azathioprine and remicade !! I had plan for pregnancy now I have decided to getting pregnant and after having a baby start treatment for fistula
I hope my fistula stay pain free as it is now and does not get worse during my pregnancy because I do not want to have treatment for fistula while I am pregnant.
Am I making a wrong decision???

nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/1/2008 3:04 PM (GMT -7)   
it was pelvis MRI

nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/1/2008 3:21 PM (GMT -7)   
it was normal MRI of pelvic region

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 7/1/2008 4:03 PM (GMT -7)   
Ash-83,

When I had my Pelvic MRI to find my fistula, they did insert contrast into a small IV in my hand.

Nina-b,

When your GI suggested you take remicade to hopefully heal this fistula was he wanting it done ASAP before it gets any bigger and causes you problems? I would ask my GI and OB/GYN their opinion first and then make my decision. I wish you all the best and hope your fistula closes on its own with Remicade.

Julia

chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 7/1/2008 5:04 PM (GMT -7)   
I am sure that it won't stay pain free forever. I had a fistula tunnel through to the bartholin gland. It was only painful right before it broke through the skin. You obviously caught it early, and the mri is the best test in finding fistulas. Since it is so small, I would opt for a month or so of high dose of flagyl and cipro, then rescan and see if it is closed or is closing.

Also, it is no longer recommended to do imuran and remicade together....I would talk to your dr. about that.

nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/2/2008 2:15 AM (GMT -7)   
thanks for your comments,the things that scares me is that my doctor said that when I start imuran or remicade I must continue them even if the fistula healed because there is a risk it come back again.he insist on taking imuran for me and I can not tell him I wouldn't take it,once I told him and he gets angry but I think these strong treatment is early for me,currently I am on pentasa and it's works really well for me. that's why I have decided to get pregnant first and then have these treatment may be for years!!
I prefer to be on pentasa during pregnancy rather than imuran or remicade.
does fistula get bigger very fast or slowly?

Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 7/2/2008 2:27 AM (GMT -7)   

how coincidental, Crohniemom, I just asked on another thread how to find fistulas!

I've just been diagnosed and I have all sorts of weird pains in my abdomen, sometimes what I eat results in tingling or burning or aching in some areas, sometimes the groin, and this has been going on for years pre diagnosis.  I asked my GI (who found the inflammation, but has little else to recommend him) and he said well, the nerves there are all related.  or it could just be ibs, he said.  I had a sbs which was normal. would that have found a fistula?   is there some sign I might have a fistula?  or should I get an MRI as part of my initial Crohn's workup?  I had an MRI a couple years back for my uterus. would they have seen a fistula or does it need to be done specifically looking for it?  normally I'd just ignore these pains but I keep reading posts about hidden inflammation and fistulas and I'd like to address this sooner rather than later.

any help would be appreciated, thanks!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/2/2008 8:59 AM (GMT -7)   
There have been a few women on this board who have had babies while on Remicade. Stef17 is getting ready to have her 3rd baby. The first two were while she was on Remicade and the if I am not mistaken, she is taking Humira during her current pregnancy. I would take care of the fistula first. The pregnancy hormones could cause the fistula or disease to get worse. I would talk to a high risk OB and your GI more before you make this decision. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 7/2/2008 10:38 AM (GMT -7)   

crohniemom

do you know why it is not recommended that you do immuran and remikade together? I am currently on both but I see my doc next week.  So if it is somethig I should stay away from I just wanted to know.

 

 


lightningbug
Regular Member


Date Joined Jun 2008
Total Posts : 28
   Posted 7/2/2008 11:16 AM (GMT -7)   

Hi Nina,

I had exactly the same experience as you. I actually thought I'd eliminated my UC by removing my large intestine, only to find out 3 years later that the lump on my labia was a fistula from my newly diagnosed CD.  I was feeling great at the time and it completely came out of left field.  Unfortunately, because we didn't realize it was a fistula for quite some time, we treated it as a GYN problem for too long and it got much worse and I needed surgery.  After the surgery I started Remicade and it was great.  I felt like a million bucks for a very long time. 

I too am grappling with having a baby because of being on Remicade/Humira.  I feel for you. 


Do your best, then to hell with it.


nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/3/2008 2:21 AM (GMT -7)   
Hi Lightningbug,
I am so sorry that you have done the surgery for that,before my dr find out that it is fistula they all though it is a GYN problem,So I guess I am quite lucky that they found it is fistula at early stage!

lightningbug
Regular Member


Date Joined Jun 2008
Total Posts : 28
   Posted 7/3/2008 1:05 PM (GMT -7)   
Thanks Nina.  I know that it's hard to find any positives in set-backs like that, but at least if you're gonna get a fistula, you found it in time to be proactive. :)  I wish you all the best of luck and let me know if you ever have questions about fistulae; I happen to be an expert. ;)

Do your best, then to hell with it.


nina-b
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 7/15/2008 5:56 AM (GMT -7)   
Dear Lightningbug,
could you please tell me how long does it take for you to find out the symptoms of your fistula on labia (like pain,discharge....),what was symptoms of the lump on your labia?what was the surgery?I really appreciate if you could explaine more about it,

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/15/2008 7:31 AM (GMT -7)   
Sorry dreamer, I have been on vacation..... From my understanding the incidences of the black box warnings are the greatest when you take the two together.

Illy.....If you suspect a fistula now, then I would definitely have another mri. If you weren't diagnosised when you had your first mri, then chances of them missing a tiny fistula are probably pretty good. It also depends on how good the dr is that is reading it. Fistulas are just nasty little buggers....they can be so tiny and hard to find.

nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 7/15/2008 8:54 AM (GMT -7)   
Can someone describe what a tiny vaginal fistula looks and feels like? I think I might have one, but I need more information.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/15/2008 5:50 PM (GMT -7)   
nruth...If it is really tiny and higher up in the vagina, you might not have any symptoms. Usually with vaginal fistulas, you will pass gas through your vagina, have drainage, intercourse may be uncomfortable....or if it is really tiny you might not even know it is there.

Nina-b...My personal opinion is that if you have a fistula, then you are more than ready for the strong meds. I totally understand your wanting to have a child. And yes, you need to conitnue on the remicade once you start it. The imuran, you can go off of and start again without any trouble, but with the remicade you don't want to stop it unless it isn't working or you have a reaction. Have you tried the cipro/flagyl combo to close your fistula?

nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 7/15/2008 8:37 PM (GMT -7)   
Thanks, chroniemom....I have a very sore little odd looking spot in an area that I can actually see. It sort of looks like a tiny red circle. Since I'm widowed, intercourse is no problem, but I shudder to think how it would feel if it were an option. The thing hurts. I was referred to a gynocologist by my internist about 6 months ago about the problem, and she was of no help. She first said she couldn't find it, and then after she'd she poked around a bit longer it started to bleed. She said she thought it was connected to menopause, prescribed hormone cream, and that was her expert opinion. Of course the cream has had no effect on the problem....and I even hesitate to bring it up at my next internist appointment on the 30th. The doctors I deal with seem to be totally clueless. I've just about reached the end of my rope. I fit into the slot of either everything is connected to menopause and old age or Crohn's. Take your pick depending upon which doctor I'm seeing. Doesn't really have anything to do with whatever complaint I might have.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/16/2008 5:15 AM (GMT -7)   
I understand your frustration with the drs.....my pcp will do that with the remicade. Sometimes, I want to tell her...would you just look outside the remicade box! :) I would definitely bring it up to your internist again, and is there maybe another gyn. you could see?

Is the spot an actual hole?

nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 7/16/2008 8:01 AM (GMT -7)   
It looks like a hole to me. All I know for sure is that it doesn't belong there and it hurts.
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