freaking out a little

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MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 4/3/2009 7:48 PM (GMT -7)   
So I was here a few months ago freaking out about my fistula and then I felt better about everything so I disappeared as I tend to do. The fistula runs through my bartholin's gland and one surgeon placed a temporary seton to keep it open and let it drain while they figured out what to do. I waited 2 months with it in so that I could see another surgeon, only to decide that I am going to forgo surgery and try Remicade first.

The thing that has had me in tears for the last 2 nights is that the seton has started to cut through me. I didn't realize how much because I hadn't really been watching it. I looked at it the other night and its about a full inch that it has cut through in just the last 2 months. It is getting dangerously close to my rectum and I am TERRIFIED that it is going to cut all the way through. I can't handle the possibility of being incontinent at 25.

I would appreciate any encouraging experiences/words of wisdom etc. I am going to call my GI on Monday to see what the status of starting the Remicade is and beg for them to cut it out but until then...I'd love for someone to tell me something to keep me from going crazy :(
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/3/2009 8:10 PM (GMT -7)   
I can't really help much b/c I've never been in your shoes. That said, the rectum is a big thick muscle, not just regular old skin. Just cause something can move through skin doesn't mean it will get through the muscle that easily. Are you prone to absesses? If not, can you just have the seton removed/take it out for the time being?
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 4/3/2009 8:15 PM (GMT -7)   
Well that makes me feel a little better but I'm still kinda scared about it. I have pretty terrible luck...but then again, I guess everyone here does :P

I had trouble with the front side closing up and making it abscess so that's why they put the seton in. It has been a week since they put in for the approval for Remicade. I don't know how long it will actually take to get approved but I'm hoping its very soon. I kind of feel like if they won't cut it out by Wed then I will cut it out myself. Hopefully it wouldn't get too bad in the amount of time that I cut it out and they start the Remicade. I don't know, I'm feeling a bit crazy atm lol.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2009 12:31 AM (GMT -7)   
MissCris, I must urge you to please, please, please not take it out yourself. We did hear of a case a while ago where some security guards forcibly removed someone's seton (they thought it was a bomb, or drugs, or something sinister, believe it or not) and the patient's gastro was furious and went public, saying that they could have caused huge and permanent internal damage.

A professional put it in; I really do think that a professional needs to take it out.

Removal aside, all I can say is "ouch". The thought of the seton cutting you so much is horrifying. I hope you can get some help quickly. If all else fails, can you go to the emergency dept at your local hospital?

Ivy.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2009 4:10 AM (GMT -7)   
MissCris -- All I can say is Ouch!!! Is the cut an open wound or is it healing as the seton is cutting?

And Ivy6 -- Ouch! I am outraged that Security Guards would do this. Even if they truly suspected some evil device, I would think they would get a doctor in to look at it and remove it.
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 4/4/2009 7:00 PM (GMT -7)   
I won't cut it out myself. That is awful what happened to that person. I can't even imagine the outrage I would feel...I'm pretty sure there would be dead bodies lol.

The very top part where it started out seems to be healed some but the last half an inch or so is pretty raw. I do feel better after thinking about what Fitzy said. I am still calling up there on Monday to see when it can be cut out and what my status is for the Remicade. Hopefully they will do both this week *crossing my fingers*

Thanks guys :D
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/4/2009 8:05 PM (GMT -7)   
Ivy - I remember that story!! It was in an airport and they thought it was a string attached to drugs. I wonder if the traveler tried to explain or if there was a language barrier where they had no idea. My mom has a bionic knee and she had an ID card stating such w/ a picture of her x-ray. If I ever was to get a seton I would ask for the same to have on me in the event, god forbid, I somehow ended up subject to some kind of strip search. Ugh. So scary.

Anyway, Miss Cris, glad you are holding up. Just to illustrate how unlikely it is to cut into your rectum do a little self exploring. Feel the skin around your girl parts. And then feel how thick and elastic the area around your anus is. Yes it sounds gross but you are desperate. You will notice it is EXTREMELY strong. It is a muscle, not just skin. Compare it to the amount of force needed to rip paper versus the amount of force needed to break your hair tie.

Good luck talking to your docs. Setons shouldn't be tearing skin like that (not that I've ever had one but it just doesn't sound right) so I think an emergency call to your doc is in order.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

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