Well there's a way to have the day go by too quickly...I have spent so much time reading and learning...thanks to such an informative and warm forum.
My daughter was diagnosed through a colonoscopy w/ Crohn's as of 10/11. The summer of 2011 she had complained of a puffiness in her vaginal area, that when pressed lightly, fluid came out of her bum. We took her to a obgyn who diagnosed her with a bartholyn's cycst and she was treated with antibiotics. After three courses and no improvement, she called one night from her dorm in tears...mind you this is her first year away at college - luckily though it's only about 2.5 hour drive - and said that the puffiness in the vaginal area was quite painful and continued to drain so I told her to absolutely call the school obgyn. The doctor at school saw how the area was draining an immediately suggested she see a colo/rectal specialist....
...fast forward to the testing, colonoscopy, etc.. and we get the fistulizing Crohn's diagnosis. (what was diagnosed as a bartholyn's cyst was re-diagnosed as a rectovaginal fistula with the draining happening through the rectum). The first doctor we saw had little to no bedside manner and while my daughter sat there in tears with the diagnosis the dr. sort of coldly told us that we could start her on Pentasa and Entecort and to watch her diet. That was it.
In denial, my husband and I did not accept the diagnosis. Lyss truly has no symptoms of Crohn's. None. She eats extremely well, no weight loss issues, no cramping, very rarely has bouts of diarhea, never even gets sick...etc... so we made an appointment in Boston for a second opinion...she had two MRI's there, the slides from her colonoscopy were sent and once again - Crohn's is the diagnosis. The course of treatment? Remicade. Sort of in a blur I watched as they innoculated her and did a scratch test for TB... but as we were driving home I starting thinking - "how can we start her on Remicade when she has no other symptoms? Was that not too drastic, etc., etc." As you know, your mind just spins....
While at the hospital we also made an appointment to speak to a colorectal surgeon to take a look at the fistula - which she did - and she told us that it was extremely small - that she could place a seton...
So we decided to hold off on the remicade and start with the seton surgery. I will say the surgeon was wonderful. She was great with our daughter - very encouraging - and performed the surgery on February 6th.
What prompted my writing today was a call from Lyss from her dorm asking if she'll ever stop draining.... she was teary a bit (also having her period, so that may be a factor) and said she was still draining and would it stop, etc.. and I just felt so bad for her... I really do wish I could just take it all on and off of her...
Did we make a mistake not going with the one two approach of remicade and the seton placement? Does the seton stop draining?
She did start on the Pentasa - seems to be tolerating that well....
Could she just have a very mild case and eventually the seton will heal the fistula?
I appreciate this forum so much - and I do apologize for the long post...but my daughter's normally sunny disposition is nowhere to be found today...just want her to be happy and well.
Thanks so much!
Maria
My daughter was diagnosed through a colonoscopy w/ Crohn's as of 10/11. The summer of 2011 she had complained of a puffiness in her vaginal area, that when pressed lightly, fluid came out of her bum. We took her to a obgyn who diagnosed her with a bartholyn's cycst and she was treated with antibiotics. After three courses and no improvement, she called one night from her dorm in tears...mind you this is her first year away at college - luckily though it's only about 2.5 hour drive - and said that the puffiness in the vaginal area was quite painful and continued to drain so I told her to absolutely call the school obgyn. The doctor at school saw how the area was draining an immediately suggested she see a colo/rectal specialist....
...fast forward to the testing, colonoscopy, etc.. and we get the fistulizing Crohn's diagnosis. (what was diagnosed as a bartholyn's cyst was re-diagnosed as a rectovaginal fistula with the draining happening through the rectum). The first doctor we saw had little to no bedside manner and while my daughter sat there in tears with the diagnosis the dr. sort of coldly told us that we could start her on Pentasa and Entecort and to watch her diet. That was it.
In denial, my husband and I did not accept the diagnosis. Lyss truly has no symptoms of Crohn's. None. She eats extremely well, no weight loss issues, no cramping, very rarely has bouts of diarhea, never even gets sick...etc... so we made an appointment in Boston for a second opinion...she had two MRI's there, the slides from her colonoscopy were sent and once again - Crohn's is the diagnosis. The course of treatment? Remicade. Sort of in a blur I watched as they innoculated her and did a scratch test for TB... but as we were driving home I starting thinking - "how can we start her on Remicade when she has no other symptoms? Was that not too drastic, etc., etc." As you know, your mind just spins....
While at the hospital we also made an appointment to speak to a colorectal surgeon to take a look at the fistula - which she did - and she told us that it was extremely small - that she could place a seton...
So we decided to hold off on the remicade and start with the seton surgery. I will say the surgeon was wonderful. She was great with our daughter - very encouraging - and performed the surgery on February 6th.
What prompted my writing today was a call from Lyss from her dorm asking if she'll ever stop draining.... she was teary a bit (also having her period, so that may be a factor) and said she was still draining and would it stop, etc.. and I just felt so bad for her... I really do wish I could just take it all on and off of her...
Did we make a mistake not going with the one two approach of remicade and the seton placement? Does the seton stop draining?
She did start on the Pentasa - seems to be tolerating that well....
Could she just have a very mild case and eventually the seton will heal the fistula?
I appreciate this forum so much - and I do apologize for the long post...but my daughter's normally sunny disposition is nowhere to be found today...just want her to be happy and well.
Thanks so much!
Maria
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But I am so sorry to hear about your daughter. :hug: poor love. 
