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.

[KentuckyBeMommaw]

First I really am glad that you decided to post this on here because I am 43 and I was diagnosed with crohn's colitis in 2005.

About 3 months ago I felt constant pressure from my vaginal area. Is this how this started for you? I didn't tell my doctor because well, I was embarrassed. I was in pain too, very uncomfortable.

I haven't seen anyone talk about this issue either. I signed up on here a while back and just recently been back on doing research and finding people like yourself to communicate with about this disease.

I don't have any desire left to have relations with my husband.  I mean, I miss him but well, the disease and problems such as this gets in the way so I feel you on that for sure!

I didn't have any leakage but the feeling was so abnormal like something was pushing and wanting to pop! Never ever felt that in my life!

What did your doctor tell you about this? I haven't read much about an anal vaginal fistula so I am very curious to know and understand this. I really hope that someone can shed some light on this for you and that you and your boyfriend can get back to normal.

[UncontrolledSarcasm]

Thank you! I now feel less alone! This whole (hole...pun intended)thing is relatively new to me as well. It started with a great deal of pressure which also felt like something was in the way when I had a bowel movement. I don't know if you've ever had really bad menstral cramps, ones where you sat in the bathroom and wished your uterus would fall out....well the pressure was so bad that I thought mine actually was. I complained for awhile about this, but the doc just kept telling me it was from all the swelling in my colon. Eventually the doc did a CAT scan with an enama (yes, that dreaded word). He found that I had a collection of fluid (an infection) very near the end of my colon. The infection chose to tunnel its way out by way of my vagina. It is a small opening that you can't even feel. If you insert a tampon, it would be about a 1/4 of an inch up the tampon that I would notice the leakage. I have taken antibiotic 3 separate time to heal the infection, with the hope that the fistula would close up once the infection was gone. This hasn't happened. As a matter a fact, just today the doctor has put me on a month long course of antibiotic because it opened and drained agian yesterday. According to the doc, fistulas are difficult to deal with when you have Crohn's. I have been on line doing research since the word "surgery" came up. I have found that there are many option.....I have also found that most seem to be unsuccessful. I am not expert, but knowing what I am dealing with, I'd tell you to tell your doc. Since you find it embarrassing, do what I used to do....I'd make a list of problems I was having and when he asked me, I'd hand him the list. It would break the ice and help me find the proper terms to use. The doc actually laughed and asked if I was taking my car in for repair or coming for my checkups. I am lucky, my doc is down to earth and easy to talk to once the "ice" is broken.
  I hope I have helped you out. No one seems to want to discuss this. I however still have that desire and look forward to the brief moments when feel well enough to be with my boyfriend. I am still hoping someone will open up and let me know what I have to look forward to.

[KentuckyBeMommaw]

Oh yeah, the few times that I do menstruat I have extremely bad pain and cramps. Especially this last time, it was just awful and the crohn's seems to be worse during this time as well. errrrr....

How strange to have that feelin "down there", and I don't understand why the antibiotics aren't helping you. Ofcourse I don't know much about this but hm, sounds like your taking so many courses of antibiotics and you should be gettin some kind of relief.

Every time I see my gastreologist I hand him a list too since I don't want to sit there and go thru the list verbally. He always says, Oh no you have another list for me and just puts it in my file and scratches his head......LOL......and we talk for a minute and just says to continue on the remicade. I think I like your doctor better! LOL! I see him in Feb, and I will tell him about this since this has happened twice. I just hope he listens to me. Hm, maybe I should think about switching doctors ey?

Oh yes, you have helped me a great deal, I only wish I could return the favor by knowing more about this. I do hope that this goes away for you and sooner than sooner so you can get back to "business" with your boyfriend for sure! LOL, it's been so long since my husband and I have even tried, I forget! LOL!!

Thanks for being here and sharing all this and being my new friend!

[Hank0303]

If you want to post my email on here, that's fine.  My discussion of my surgeries may help others.  Doctors need to understand that WE know our bodies and WE know when something is not right, even if that's not what they learned in school.  My advice, quit taking the antibiotics.  They will destroy your body.  The more times you take them, the more you become resistant to them.  And then, when you really need them, they will not do you any good.  If you've taken a full course of them more than twice in 6 months, and you see no results, it's time to go under the knife.  Yes, it's scary and yes it's painful.  But, the longer that infection sits in you, the more damage it does.  It's better to treat this aggressively in its early stages if you want to regain some normalcy.  My fistulae did not affect my vaginal area (thank you, God), but it was close.  There are amazing things they can do nowadays with restorative surgery.  I saw an incontinence doctor for a few months, so I could learn exercises.  There are so many muscles involved.  It takes a lot of time, effort and hard work to re-build those muscles.  You have to be dedicated just like you do when you work out.  But, you CAN do it and you CAN get back to normal.  They can surgically repair any damage that has been done, but the rest is going to be up to you.  My husband and I had to go sometimes a full month without sex because I had to heal after surgery.  YOU may have to wait longer, but it will be worth it in the long run.  You certainly don't want to undo what the doctors have worked so hard to repair.  Do you do hot sits baths?  That helps, too.  It pulls the drainage out.  It's this plastic thing that sits down in to the toilet seat.  You fill it with the hottest water you can stand and you sit in it for about 20-30 minutes (until the water gets cool).  It will pull out the drainage, so it does not build up.  They give them to ladies after birth when they've had to be stitched up.  You can get them at a drug store (or ask your dr).  You will also use one every time you have a bowel movement after surgery.  It is VERY important to keep that area clean as much as you can.  It's an area of our bodies that sees a lot of "stuff", so it's hard to keep completely clean.  My other advice, stop ASKING your doctor for help.  YOU pay HIM to work for you.  TELL him what you want from him.  In our situations, you have to lose all modesty.  Put it in his face, tell him how bad it hurts and how bad it affects your life and DEMAND that he do something!  HE would not let himself live that way, why should you?????????

[UncontrolledSarcasm]

Thank You!
I'd have to say that I am not modest. It is way to late for that. Too many people have seen this butt to worry about it anymore...LOL.
I just always think that the doc knows better than me. I guess it is time to step up to the plate and start swinging. You are 100% correct, I pay him!
Thank You Again & Again!

[KentuckyBeMommaw]

Awesome awesome advice! Yeya!!!

[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

[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.  

[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  

[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

[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.

[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.  

[frustrated315]

Thank you for all of your advice......As for the remicade i am in canada so i probubly cant take advantage of that program....and as for the ceton......It has been in since august and i have not been back to see the doc since it finally got so much slack that it broke and as embarresing as it it was my boyfriend had to reconnect the ends for me so it didnt disaper i have called the doctor and they still dont get back to me....it has gained slack again .....so im worried but maybe that is a good thing from what you said.....I am different from most of the people on here symptom wise by the sounds of things as i m mainly symptom free....foods dont bother me.....I do not have diareaha.....They have confirmed that i have it through colonoscopy but i find myslef wondering if that is really what it is????All of the meds they give me cause what they are trying to prevent ..I am allergic to flagil and cepro.. and i find myself thinking if these other meds cause diareaha and sever cramping what is the remecade  going to do to me I cant just stop taking that!!!
They tell me i have aggressive chrohns and yet here i sit waiting????

[Hank0303]

Until last year, I was symptom free for almost 8 years.  All i had was the annoying abscess.  I could eat whatever I wanted, cheese, yougurt, ice cream, salads, etc.  But then, last year I started had constant diarrhea and nothing helped.  The drs keep telling me I am not having a flare and that this new problem has nothing to do with my Crohn's.  It's a weird disease.  Everyone is different.  i am allergic to flagyl and cipro as well as augmentin and keflex.  It makes it difficult to attack any infections.  That's why I ahd to do the cetons.  You really should be seeing your surgeon every two weeks while you ahve those in.  They should be tightening them quite often.  

[Hank0303]

Until last year, I was symptom free for almost 8 years.  All i had was the annoying abscess.  I could eat whatever I wanted, cheese, yougurt, ice cream, salads, etc.  But then, last year I started had constant diarrhea and nothing helped.  The drs keep telling me I am not having a flare and that this new problem has nothing to do with my Crohn's.  It's a weird disease.  Everyone is different.  i am allergic to flagyl and cipro as well as augmentin and keflex.  It makes it difficult to attack any infections.  That's why I ahd to do the cetons.  You really should be seeing your surgeon every two weeks while you ahve those in.  They should be tightening them quite often.  

[verysickandtired]

i am 38 and i was diagnosed with crohns when i was 25. I have been on entocort for 6 months and when i try to get off i get really bad. i also have severe mensral cramps and recently took two trips to er with high blood pressure. i do not know where to start since there are several things going on at one time. I have been having some panic attacks and i am afraid that something could happen to me. I have been trying to tell my doctors that i need help and i dont think they are listening.

thanks,
verysickandtired

[ltgesq]

If you are having continued infection that is non-responsive to multiple courses of antibiotics, then you should be at a hospital having a culture done of the infectious bacteria so they can determine what to put you on.  I have a small area of my rectum affected by crohn's, and an area of my ilium.  I was on prophlactic cipro for a year and eventually became sensitized

I have had crohn's since the 80's but was diagnosed in 94.  I had surgery two years ago, and had a resultant infection.  Like others on this list I am allergic (or sensitized) to many of the commonly prescribed antibiotics.  Some of the best ones are only available via intravenous drip.  Letting an infection like this linger is really quite dangerous as it can eventually cause blood poisoning.


One last note: My father was a physician and recommended that when you were ill, you should always look for a hospital attached to a medical school.  The doctors there generally are more current and more concerned with medicine rather than making a huge amount of money.