Advice wanted - Fistulas and attempt pregnancy/adoption

[skr]

I am new to this site and am looking for some advice. I was recently actually diagnosed with Crohns. I had one rectovaginal fistula that was missed diagnosed for a long time as a bartholin cyst. The first fistula is not very bothersome, it is small hole and doesn't drain too much. The new one however, due to where the cut was made when it was drained tends to be quite painful. GI said if these are fistulas, there really isn't anything he can do. He said to try to fix them could just end up making things worse and basically I just have to live with them and as long as they are draining they are doing what they need to do.

My husband and I have been trying to get pregnant for over a year now and the first fistula wasn't too bothersome so it wasn't an issue. Now it has been over a month since we have been able to have intercourse due to the pain this new fistula brings me and the thought of it scares me because I am sure it is going to be pretty painful. My husband is very understanding, but if we want to start a family, we really don't have a choice.

My question is has anyone gotten pregnant with a fistula? do you recommend it? I am sure it will end up with a Csection if I get pregnant. Has anyone considered adoption rather than pregnancy? Has the pregnancy affected the pain of the fistula?

We are ready to start the next chapter of our life, but every time we try to something new pops up with me and this disease. Sorry for the long post, but looking for some advice! Thanks!

 

[Essieluv]

While I don't know your exact situation, I think that's a little ridiculous that your GI said you have to live with two fistulas. There are actually quite a few things that could be done to help those heal up. Are you on any meds? For fistulas, antibiotics like Cipro and Flagyl can be really helpful, and are often short term. Also, hot soaks and some prescription ointments such as Protopic or Metrogel can encourage healing. Setons are another option, although it is a minor surgery.

I can't answer the rest of your question, as I don't have experience with that. However, I just wanted you to know that there are probably treatment options you could try, if that was something you are interested in. Good luck with your healing, and I hope you get the answers you are looking for

 

[Grumbletum]

Hi skr. Just to add to what Essieluv says, I'm surprisef by the doc's attitude too. It might be worth trying to get a second opinion. Have you been or had Re micade at all? Some people have success with fistulas on it.

 

[skr]

I am currently on Lialda and azathioprine. The doctor did mention something about a seton, but then kinda moved passed it (I think because the Crohns is active and he doesn't sound like doing anything with active Crohns is a good idea). He said surgery could cause more problems and basically if its draining its doing what it needs to be doing.

I have read a lot about Remicade in different forums and it seems to work for a lot of people. Doctor has never mentioned anything about meds to heal the fistulas.

 

[dgg]

Hi Skr,
I have suffered horribly from fistulas and I have one of the most complex ones most doctors have seen (called a horseshoe). I can totally relate and I was actually pregnant when my fistula acted up. I had my first fistula a few months after my first child was born and had surgery and healed up so was told I could get pregnant again. 7 months into my second pregnancy I developed a new one very high up and the pain was horrific.
For me it was pretty horrible since it was near the end of my pregnancy so the doctors wouldn't prescribe me cipro or flagyl which have since worked the best for me (I got them as soon as I delivered). My pain was so much during pregnancy that I couldn't sleep and my ob wouldn't allow me to take sleep meds to it really turned into a bad situation. I delivered via c-section for obvious reasons. I don't mean to scare you but I just want you to be aware that if the fistula is problematic while pregnant you will be very limited in terms of what kind of aggressive treatment you can get. Don't get down over this since I think there are several options you can consider. Where are you located? Sounds to me like your doctor doesn't know a lot about fistulas since you're not on the best medications to treat fistulas (all of my doctors suggest remicade as well as cipro and flagyl as antibiotics). I suggest you get a second opinion with someone who really knows about fistulizing Crohns. If you are in the US I can get you the names of a few of the best doctors familiar for Crohns (both GIs as well as colorectal surgeons).
I don't know much about retro-vaginal fistulas but in my case I had surgery to place setons and that helped a lot. I know someone with your kind of fistula who ended up having a temp ileostomy to help the fistula heal and then had an advancement flap and the ileostomy was later reversed and she hasn't had issues. After 5 years of pain even with setons I went the route of an ileostomy and I am so much happier now and completely pain-free. I also had a flap and we are going to wait 12 months before thinking of reversing it (I am in no rush since for me an ileostomy is so much better than constant pain and drainage). My case is an extreme and most people don't need what I have but you should definitely ask about remicade and if it does work I had been told that it is safe to be on during pregnancy. I know how hard it can be to deal with this and it's extra difficult if this is preventing you from starting a family. Stay positive since there is better treatment options available and hopefully you can find some that will really help.

 

[mish2575]

I had a recto-vaginal fistula that closed with remicade. I then got pregnant and had 2 babies. I took remicade through 1st 2 semesters but stopped for 3rd and breastfeeding (only 3 months so i could go back on Remicade). My kids are normal, healthy, smart preschoolers.

Good luck in your decision.