For Chronniemom and anyone else interested.....

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ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 1/12/2008 10:52 AM (GMT -7)   
Well, I had my colonoscopy at Mt. Sinai on Tues. No disease found anywhere but my rectum at 1st glance. Dr. Ullman did take some biopsies in places he thought may have microscopic disease but I won't know the results until next week.
 
I also met with Dr. Alex Ky (colorectal surgeon). She looked at me and told me that my seton was obsolete-it is going to come out but I do have another fistula (that I got after my 2nd remicade infusion) that needs a seton. She is going to place the seton next Thurs. and do some exploring -what fun. She does not think they are connected and feels the seton was put in the wrong place originally. She also said I never should have had the fistula plug surgery. I really hope this will help the remicade do it's job and that I can get some relief. I am basically in the same predicament I was in last year with the added benefit of joint pain from the remi.
 
I'l keep you all posted......Last time I had rectal surgery I was out of work for 4 months so I need all the prayers/good vibes that you guys can manage. I am a bit panicked.
Thanks!


36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

Post Edited (ginger71) : 1/12/2008 11:00:10 AM (GMT-7)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/12/2008 11:32 AM (GMT -7)   
Thanks ginger! I know another surgery is NOT what you want, but it sounds like she knows what she is doing and at least has a game plan for you. What did she mean by your seton is obsolete? Hang in there! Thanks for the update, and keep us in the know....

way2tired
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 1/12/2008 11:57 AM (GMT -7)   
 hi Ginger (guess I fall under the anyone else thats interested lol) Hope all goes well, I will keep my fingers crossed and a prayer said....I noticed that you said your doctor is Ullman from mt sinai, he is also mine, I went to him the first time in november, needed a second opinion. Do you mind if I ask what you think of him? He made a good impression on me, but I would like to know what someone else thinks. Thanks.....

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/12/2008 12:34 PM (GMT -7)   

Ginger,
Sending a ton of prayers and good vibes your way.  Hope the outcome is good new. ((((((((((((((HUGS))))))))))))))))))

Kitt


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/12/2008 12:46 PM (GMT -7)   
Hello Ginger! I'm happy to hear that at least they didn't see obvious problems elsewhere. That has got to be a comfort at least. Yes please tell us what an "obsolete" seton is. Have they developed new ultra-modern high-tech seton models?? Maybe the new ones are sparkle-colored! ;-) Or is it that the fistula doesn't need a seton any longer. Anyhoo, I pray your next procedure goes great and takes care of your symptoms!

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 1/13/2008 8:34 AM (GMT -7)   

Hi everyone-thanks for all the support!

Let's see if I can answer some of your questions....

Dr. Ky meant my seton (she called it obsolete. I found the wording a bit odd, too) was either 

 a.) already healed and should have been taken out

 or

 b.) should never have been put in because it is just under the skin and not connected to the big gaping, oozing mess that popped out where the fistula plug used to be. She will know more when she does her exploratory surgery next week.

Way2tired -

I am very impressed with Dr. Ullman. I met with another Dr. that works with him 1st but he spent at least 30 min. talking with me. I was in the office for almost 2 hours so they really took their time with me and I loved that. He told me that I could not possibly have anything other than crohn's and was shocked about what I had been through. (I am sure he has seen it all,too!)One of my GIs took me off of all my meds and that's when things got so much worse for me. Most GIs should have seen that as a sign...... He was very confident in his diagnosis and gave me many reasons for it, such as the skin tags (both my Drs. here said not necessarily CD related) and the crohnic abscesses that cannot be stopped, among other things. He also picked up on something in my Camera endo results that my own GI did who did the procedure did not. He even saw problems with my seton and knew that was why the remicade is not working. My GI here doesn't even know anything about setons. There's a lot more but this post is already too long. :-)

Dr. Ullman managed to let me know that my current treatment was completely wrong but he was so professional about it. He did not discredit my past Drs. He simply said there were some missteps taken along the way and he said he was so sorry for what I have been through. He seems down to earth and approachable and very friendly. He was very confident that he could help me and did not make me feel like a freak that he did not know how to treat which is how every Dr. I have seen in upstate NY has made me feel. They all keep giving up on me. sad

I am a bit annoyed that I have to drive 3 hours to see a good Dr. but I suppose I am also very lucky that I have an excellent insurance plan (just my $18. copay)that allows me to do it and that I don't have to go all the way across the country to see the "best of the best". Riding for 3 hrs. in a car after exploratory rectal surgery is kind of freaking me out but I'll deal with it.

 I can always count on you guys for support and I will let you all know what happens :-)


36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/13/2008 8:51 AM (GMT -7)   
Thanks ginger! Your dr. sounds GREAT! That apt. had to be so encouraging for you! It sounds like he is ready to tackle your disease and get you to a place where you can have that baby you so desperately want! Let us know how your surgery goes when you are feeling up to it. Would it be possible to get a hotel room for a couple of nights in the city before your ride home?
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