A Bit Personal

[UncontrolledSarcasm]

I am 38. I was diagnosed with Crohn's 10+ years ago. I have been in a flair for almost a year. In the process of trying to get things under control, I have developed an anal vaginal fistula. My GI is telling me that surgery is the next step....he had hoped that increasing my Remicade infusion would help to close this up. I also have a collection of fluid (infection). So not only do I deal with the daily leaking, I have to constantly be ready for that collection to open up and drain. I have been researching the sergical options. And, although I have built up quite a tolerance for pain over the years, I am Terrified. But the question I have isn't one I have seen addressed by anyone. How has this effected your sex life, and once you find the proper fix, can you resume a normal sex life without any adverse effects. I am not talking anal sex, I am talking plain ordinary vaginal sex. All I am really looking for is someone to tell me that it can all go back to normal. I spent so much time dealing with the "nasty" effects of this disease and I need a glimmer of hope that I will not permenantly lose this too. My boyfriend is very understanding, I am the one who misses our sex life since the fistula has appeared.
  Any insight...positive or negative....is appreciated.

[Hank0303]

The setons stay in for a couple of months (it was almost two years ago, so it's hard for me to remember).  They fall out on their own once they have made their way completely through the muscle still tied together.  They work their way through very slowly, so you are helaing from the inside out.  Therefore, when it comes out, you just have that little bit of an opening to close.  As long as you keep it clean, you should heal fairly quickly.  It leaves ugly "divot" scars, but at least they're not open and draining any more.  Remicade does not work for everyone.  I went through two full rounds of it and then started a third.  And, that was all over about 8 years.  I had the same fistula the ENTIRE time.  It did not work for me.  Surgery did.  YOU have to weigh your options.  Just because something is free does not mean that is what is best for you.  And, just because I am telling you I had success with surgery, that does not mean that is what is best for you.  Gather all your info, including benefits and side effects and talk to your dr.  

[UncontrolledSarcasm]

Katta gave you a lot more information then I did. Now go get your medicine! Good luck! Let me know how things play out for you.

[katta]

HERE IS THE INFO ON REMICADE SO YOU CAN GET IT FOR FREE

THE NAME OF THE MANUFACTURE OF REMICADE IS CALL

CENTACOR INC
THE PHONE # IS 866-489-5957 EXT 5628
TALK TO JONATHAN FEDRICK AT EXT 5628 HE IS THE PATIENT ASSISTANCE PROGRAM COUNSELOR
HE WILL BE ABLE TO TELL YOU HOW CAN U APPLY

THAT IS HOW I GET MY INFUSIONS ALSO SOME PHARMACEUTICALS COMPANIES CAN HELP YOU GET YOUR MEDS FOR FREE IF YOU DON'T HAVE HEALTH INSURANCE, I GET MY ASACOL FROM PROCTOR AND GAMBLE PHARMACEUTICALS PATIENT ASSISTANCE PROGRAM
PO BOX 66553
ST LOUIS MO 63166-6553
YOUR DOCTOR HAS TO SUMIT AN APPLICATION

HOPE THIS INFO HELPS

[katta]

well let me share some info with you, first of all remember that everybody is different and i understand your pain and being scare i am only 27 years old and i have had 7 surgeries since 2003 till now just like you i have suffered from tears, abcess, hemorroids, etc i usually am in the hopital every month with a flare up and i have found out that the antibiotics that help me are flagyl and cipro nothing else helps, also i have had a full hysterectomy because of crohn's so you can imagine my sex life was out the window, but believe me you will get better, i am still having some problems not as bad as before surgery because i can not go very long during sex because of tearing and pain but i had a talk with my boyfriend explaining him my symptoms and how difficult is for me sometime to preform he is very understanding but you have to be patience and trust your doctor, surgery sometimes is best way to go believe me i had 7 just tell your doctors your fear and ask him how high will be the percentage of you getting better after surgery if is only to remove the abcess and repair the tear will be worth. ALSO IF THEY PUT A STEN IN TO DRAIN THE ABCESS IT WILL BE REMOVE AFTER ALL THE FLUID IS OUT AND WOUND IS HEAL THE STENT REALLY WORKS BUT YOU HAVE TO TAKE YOUR ANTIBIOTICS IS THE ONLY WAY TO FIGHT THE INFECTION, OTHERWISE THE ABCESS WILL COME BACK.
ALSO I WANT TO GIVE YOU SOME INFO ON RAMICADE SO YOU CAN GET IT FOR FREE, THE COMPANY THE MANUFACTURES THE RAMICADE IS CALL CENTACOR AND THEY HAVE A PROGRAM THAT U CAN APPLY  

[UncontrolledSarcasm]

  Wow, I am glad I did bring this up. I felt so alone. It has really helped me to know that I'm not. I too have a very understanding boyfriend. We are both lucky in that way. And I too am the one who is bothered most by this.
  I have been on antibiotic 3 times in less than 6 months. They aren't doing anything to help. I have read of several people who have had a seton. I understand that this keeps things open so that they drain....but then what? How long does that stay in? Do they ever close up the hole? Will we leak forever?
As far as not being able to afford the Remicade infusions.....who can? They are outrageously expensive. I have health insurance but there is still a deductible that I must meet. I can't even afford that all at one shot. I know there are organizations that help out with these expenses. I don't know where you are from, but maybe you have something like this as well. You apply for a "grant" type of thing. I have a "Copay Relief" program"and a "Patient Access Network" program. I was lucky, I have a sister who works for a hospital and told me about these programs. Look into it. I know a lot of people who are against Remicade, because of the side effects....but it has allowed me resume a life outside of the bathroom.
  I am so glad you found comfort in my posting. I hope your health improves and you can get the treatments you need.  

[frustrated315]

Hi, I am 27yrs old and was diangnosed with chrons about a year ago.. I have been battling with abdominal pain for about 9 yrs unsuccesfully until a year ago last november a large bump showed up beside my rectum, it hurt and so i went to emerge, they sent me home with anti biotics one week later i was imobilized by the pain so back i went, they then drained the abcess and began looking into causes....i have since under gone three drainage surgeries until they have placed a ceton(is like a rubber band) thru the fistula tract (to keep the tract open and draing) so i as well have dily drainage which smells bad......they also have informed me that they think it is tracking to my vagina as well as i have re occuring vaginal infections for no good reason (these also smell terrible) i am still trying to fight and i to feel alone in this so far i am with no success.....and remecade has been disscused but i cannot afford it........My boyfirend is very understanding and has made me see it bothers me more than him but he has the need to understand.....and the more he understands and the more open i am with him the less it is an issue......but im am so very lucky we do have intercourse and have only stopped for a short time after i have had surgeries, some times it is uncomfortable for me...but i hope that will pass in the future thank you for being so open as i have felt so alone in this and it is embarresing......but i also look at it as just another challenge in my life i will overcome someday i just need the right direction