Community Forum

I was diagnosed with Crohn's disease in 1996, had 12 inches of my intestine removed & have been in remission until recently.

I have been dealing with anal abscesses & fistulas. I have undergone several procedures & ended up with a seton inserted in the fistula tract to keep things flowing and avoid another abscess.

I have to wear a pad on a daily basis and am in pain.  I have been told I can choose to have surgery, but that is not a guarantee and I could end up with a bag or no control when having to go to bathroom.

Any one else dealing with this complication due to Crohn's?  What do you recommend?  I am so undecided on how to proceed.

 Reply posted for pattybia.

I have had 4 procedures since September, let me give you my rear see if your not in pain.

 Reply posted for pattybia.

 I had rectal ulcer in 2006 the size of an egg.  It was repaired with a laser.  In 2011 I found the fistula the first one.  I had what they call a "Lift" procedure as the fistula went through my sphincter muscle.  One half of the fistula collapsed but the other one didnt so back to the OR in 2012.  I had a reaction to Cipro and ended up in the ER getting epinephrine.  So fast forward to may of 2014.  Guess what? Another fistula.  I decided to try a local colon surgeon cuz the original was 55 miles away.  So on 9/12 I had two setons placed into my "complex" fistula.  It was complex because it was like a tree branch.  Before i got to my next appt i created a whole new fistula.  So on 10/17 back to the OR to place a seton in that one.
In December it fell out and of course it abscessed so he put 5 Novocaine injections into my bum and opened it and drained it.
On 1/9 i had an Advancement flap on the "complex" fistula.  I am in constant pain and I have drainage out the whazoo.  There is a seton in the 2nd fistula.  I have immense pressure with the more activity I do.  If i go to Walmart and walk around I will either be in tears before i get out of there or i will have drained so much i need a bath when i get home.  
So I pissed of the local surgeon.  You call the service he doesnt call back.   His response to me telling him that was "On call is hectic".  His office staff never calls back either and his APRN is rude and violates HIPA by telling my friend who is a patient there that "Christina and I dont see eye to eye".  So I have been turfed back to the other surgeons office.  And in some way im glad.  They are very professional and listen to me.  I see him on 3/6.  I am in constant pain w/o pain medication and we all know how that goes. 

 Reply posted for meggs313.

Thank you for responding to my post.  I am currently not on any meds due to being told what they recommended causes cancer & this coming April I will be 2 years cancer free.  Whatever the drug was is out of the question.  I have been told I could have flap surgery, but need to discuss more with my doctor.  I have 2 sores on either cheek.  Had a seton in left cheek, but came out.  My seton is located directly in my butt and keeps things flowing. I have not done sids bath, too pricey & no real patience or time to soak in regular bath.  Up in there air whether to get surgery or just give this more time.  Scared of surgery, no guarantee.  Has surgery ever been an option for you?

 Reply posted for pattybia.

I just realized you did say where is was located!  I'm sorry!

 Reply posted for pattybia.

Hello,

I have 2 fistulas and have a seton in one.  I have had the seton in place for about 10 years.  The pain will go away eventually.  I know it is hard right now.  I recently developed my second fistula and it still hurts me occasionally.  Whenever they seem to be infected (increased draining and pain) my doctor prescribes Cipro and Flagyl.  This normally clears up the infection.  Remicade is known for healing fistulas and my doctors are currently discussing putting me back on it or putting me on Cimzia.  Are you on any biologic medications?  My biggest piece of advice is to keep the area as dry and as clean as possible.  I'm not sure where yours is located but mine are perianal so it can be a challenge to keep them from getting infected.  As long as your doctor okays it sitz baths (available in pharmacies) help a lot and just regular baths too.  If you have any other questions please feel free to ask me!  I hope your pain eases up soon!