Fistula Free after nine years.....

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/20/2009 4:07 PM (GMT -7)   
Hi,
Guess what..no more fistula for me..today it was operated and removed..turns out it was superficial..only one inch long! I had a complete fistulotomy..a skin tag removed and a subaceous cyst removed. I am so happy..even the nurses were cheering for me..thank you again fallcolors for suggesting Dr. Orkin...he was great. I am so happy to be moving towards the direction of a remission..hopefully. Now i just have alot of pain...tylenol with codeine..isn't quite cutting it. Tomorrow i have to pack my own wound...which makes me nervous..any suggestion on that...and when do i ask for a bigger pain med..i am trying to be a good sport for now...

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/20/2009 4:24 PM (GMT -7)   
Congratulations!!! This is wonderful news :)
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 10/20/2009 6:24 PM (GMT -7)   
What fabulous news!!! I am truly happy for you!! I am so glad you were able to get in with Dr. Orkin. So very competant and such a nice guy too. How wonderful that you could get rid of the fistula! That is such a dream!! No seton!! Was there much of an abscess?? Do you only have the one inch incision?

I think you will have a few days of pain, unfortunately. Just keep thinking about how every minute -- every hour that goes by is one less minute/hour of pain, and one minute/hour you are closer to being healed!! And when you wake up tomorrow you will be one whole day closer! How very exciting!! Celebrate these simple things!

Let us know how you are doing!
Diagnosed with 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.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/20/2009 6:59 PM (GMT -7)   
thanks! i know..one day closer..to being healed..that is the truth! Actually..the incision is quite large..more so in width..because its a piece that is removed from me...it looks pretty scary...it seems less like an incision and more like someone cut out a large oval like circle out of my bottom..it really hurts too...i am trying to take it easy..and not worry about laundry and stuff..i am so nervous about the first time i go to the bathroom..the incision..is open to the muscle..so its not something i want to look at unless i have to pack it...because they removed part of the muscle..for the most part it was low in the muscle.

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 10/21/2009 4:40 AM (GMT -7)   
I know how scary those wounds can be! I also was concerned about going. But it turned out just fine after the first day or two. Praise God! The body knows how to deal with all the stuff that goes on down there. Just make sure you have your pain meds on board when you go. And you have your fabulous shower sprayer so no need to wipe. The first week is the worst, so hang in there. The best things you can do to pass the time and promote healing is to take 3-4 15+ minute tub sitz baths a day and sleep. Sleep the days away and the time will pass quickly.

Take care!
Diagnosed with 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.


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 10/21/2009 11:56 AM (GMT -7)   
Hi froggy. Glad to hear everything went well. Where was your fistula? Can you describe exactly where it was? It sounds like it is right around your anus. I can see why you would be scared to have a BM. What did the doctors say in terms or recovery? Why are you not in the hospital? Which state are you in?

It sounds like you are doing relatively well. I am glad. I hope everything goes pain free from here.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/21/2009 6:23 PM (GMT -7)   
Thanks to all who replied..i am so happy..i just never thought i would not have this fistula..fallcolors..you are right..big open wounds..yikes..scary to look at..thank goodness i have recieved so much good advice on this forum..i am more than prepared..nostra whats up? My fistula was an anal fistula..right next to my anus..it was only one inch big i guess..they took it out and cut part of my muscle..but Remicade..got rid of all the inflammation in my sphincter...it went from being horrible to perfect. I am in Massachusetts...my doctors said..i just need to heal..and be careful of infection..and to pack it..which i am trying..i am not good at it..but i am doing it. I am not in a hospital because it was day surgery...it wasn't that serious..and i woke up okay..and I was able to urinate right away and walk and stuff...they asked me if i wanted to stay when i was having pain..and i said no..because i knew that it would calm down...they also removed my skin tag..which i have pretty much no pain from...and a subaceous cyst..a few inches from the anus..and that only stings if something touches it..i am taking tylenol with codeine..every four hours..even in the night...and i am managing my pain..in fact i am sitting..i cleaned the house, did the laundry, cooked, took care of the kids..back and forth to the bustop..took out the trash and checked the mail...i am still going strong. I did have a bm this morning..and i didn't really have any pain..but a slight spasm after..(i have medicine for that)...i can feel that the fissure has healed..probally because they cut my muscle....and now things are more relaxed..so knock on wood..so far so good..i am trying to stay postive..i have two open wounds...and they are not small...:)

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 10/21/2009 6:35 PM (GMT -7)   
You are scaring me. I know I have a fistula. When I had the colonoscopy, the colonoscope was not even inserted, and the GI said that there was a fistula. Right now, I have bad pain in between my...uh....a@u$...and my testi@le (those words sound bad when I read them). I know that when you start Humira, you cannot have an infection. I wonder if this is part of the fistula and if I would be able to take Humira. I am going to the CR doctor tomorrow and having a barium enema exam and a CT scan Friday. Never had a barium enema exam. Hope it does not hurt. I heard it takes 2 hours. Wow.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/21/2009 8:51 PM (GMT -7)   
NostraHistoria, I agree, it does sound scary, but keep in mind everyones' experiances are different.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 10/23/2009 9:19 AM (GMT -7)   
yay for you frogeleita! I'm in Mass. too- where did you go for your operation? I'm impressed it was day surgery- when I had a surgical consult for repair of an RV fistula, it wasn't very encouraging. the surgeon basically told me the success rate was around 30%, & that it'd be fine to just live with it. Which I do! But....I read the title of your thread & got really, really envious! Happy for you though. I had a consult at Beth Israel, in Boston. I prefer Lahey Clinic & the surgeon I met with there, but at the time of that consult I didn't have the fistula. It was just a proctocolectomy consult.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/23/2009 12:45 PM (GMT -7)   
Hi Eva Lou! How are you? Okay i went to Tufts Medical Center in Boston Mass and the doctors name is Dr. Bruce Orkin..he is the director...if you google him..you will see many people talking about success stories...and that he even works with children. He is very experienced and i must say a shout out to Fallcolors..i am forever thankful she referred me to him. Here is his info...
I heard from a previous general surgeon i loved that the Lahey Clinic...is amazing. But you could always go see Dr. Orkin and see what he says..he explained everything to me and i came out his office educated. I understand you feeling envious..i would feel the same. But i opened up the post to let others know..yes i went through with it..and i am okay...and you also may be able to get rid of your fistula too. My story is so far a success story..and i was told for years that i would have to live with it for the rest of my life. I say give him a call and just go and see him..if you are in the area..its perfect..just see what he thinks may help you. You can tell him that Rebecca referred you! Its worth a try..because their is hope and maybe you can get rid of that fistula and improve your life! Wishing you luck and praying for your health:) hugs!
 

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 10/23/2009 9:19 PM (GMT -7)   
WOW frogeleita! I am so excited for you that you have gotten all of that taken care of!!! I can just imagine the joy and relief you are having!
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/24/2009 12:18 AM (GMT -7)   
thanks misscriss..i am so happy....because i have had this for such a long time..with both of my pregnancys..and so many abscess's...and so much pain..i haven't sat without some type of pain..in a very long time..and i was amazed that after i was told by many doctors..that i had to live with it..that it was possible to remove...and getting the annoying skin tag was great..cause it had an emotional effect on me..as it does others..and my surgeon was nice to remove a subaceous (vaginal cyst)...that was an extra and i appreciate it so much..cause my obgyn would not remove it ...so i am happy..very pleased...and i have told my surgeon twice now..thanks soooo much lol....getting this taken care of and being on Remicade i have a chance at remission..so i have my fingers crossed and i am praying..maybe i can actually go back to school or back to work...someday!

 Crohn's Lupus Hyperthyroid..Pentasa Remicade Fistula removed..skin tag removed!

 


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2687
   Posted 10/24/2009 1:12 AM (GMT -7)   
Yay I'm so happy for you! I had a fistulotomy done several years ago. For me the first 3 days was pretty painful, but after that I felt great! However it took a whole year for that sucker to heal up and close on it's own. Thankfully it wasn't painful! I didn't have to repack mine, after the orignal packing was taken out. That was odd because I could have SWORN it was still there when I removed it. But the area just felt "dead" to me. I had a little bath that I had to put on the toliet that I would soak in several times a day. That was always fun, but it did help. I also agree that the shower was better then wipes.

I wish you a life time free of fistulas!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/24/2009 9:21 AM (GMT -7)   
hi jenn....thats great you had yours removed too! It stayed gone too? Thats the best part! Yes the wipes are hard..because my incision..starts exactly after the anus..i do not want to accidently wipe the wrong part..ouchhh...i hate packing..it hurts...now my incision..is starting to sting..and it stuff comes out..yellow..not sure if its normal...can't wait to heal!

 Crohn's Lupus Hyperthyroid..Pentasa Remicade Fistula removed..skin tag removed!

 

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