Enteroenteric or enterocolic fistula - what is your experience?

[cassimw]

My 14 year old daughter was recently dx'd with Crohn's. She has a enteroenteric or enterocolic fistula (I believe it's one or those types). They want to treat with Remicade and possibly 6-MP combo. No mention yet of surgery. So I have some questions for those of you who have been there:

1. Have any of you been able to heal a fistula with medicine or diet alone?

2. If you have had a fistula, how likely are you to get another one?

3. If you do have a fistula and have surgery - is it possible you'll get a new fistula due to the surgery?

I'm sorry if you are reading this and have experience to share, but I am so grateful to you for sharing.

 

[ronroush7]

I have never had a fistula to heal on medicine or diet. I once had one heal as a result of prayer. I don't know if it was due to surgery but I have had two or three fistulas.

 

[cassimw]

Sorry to hear about your experience, Ron. Sounds like you have had a rough go of things. I know experiences can vary a lot from person to person, so I hope for the sake of my daughter that this is not the norm. I'm hoping others will chime in...

 

[Echodog]

Sorry you are going through all of this. I was 15 when I started dealing w fistulas. Before Remicadee, they would try 6MP and maybe a few other things but nothing worked for me. Remicadee was a godsend when I got it. I had 4-5 active fistulas and got into the study. Within a few days things started healing. Unfortunately, when the study ended so did the Remicadee. I ended up having an ostomy which allowed them to heal. They started up again a few years later and Humira worked. It took a few months but it worked for almost 5 years. Since then nothing has helped much..
My advice is to try everything you can before surgery (assuming she is able to handle the fistula) there are a lot more medicines than there were 30 years ago. Hopefully something will work. If not surgery is an option. Surgery won't cause a fistula but unless you are getting an ostomy , a new fistula can form. Good luck

 

[matt82]

Sorry you are going through all of this. I was 15 when I started dealing w fistulas. Before Remicadee, they would try 6MP and maybe a few other things but nothing worked for me. Remicadee was a godsend when I got it. I had 4-5 active fistulas and got into the study. Within a few days things started healing. Unfortunately, when the study ended so did the Remicadee. I ended up having an ostomy which allowed them to heal. They started up again a few years later and Humira worked. It took a few months but it worked for almost 5 years. Since then nothing has helped much..
My advice is to try everything you can before surgery (assuming she is able to handle the fistula) there are a lot more medicines than there were 30 years ago. Hopefully something will work. If not surgery is an option. Surgery won't cause a fistula but unless you are getting an ostomy , a new fistula can form. Good luck

I too have a abscess and I'm pretty sure a fistula. The abscess drains out the tube but another spot has opened up beside my belly button. I'm hoping to start on humira next week and I'm praying it heals the fistula. It's nice to see someone else has had some success with humira

 

[Echodog]

It took awhile but it helped. Stay strong

 

[cassimw]

Thanks everyone. Echodog - I'm glad to hear some treatments gave you some relief for a while - especially the Remicade - which my daughter gets her first treatment of tomorrow. Sorry about everything that happened afterward - how terrible! Thanks for your advice about trying everything before surgery. I'm definitely going to keep it in mind going forward. Matt82- Sorry to hear about your issues too. Hope Humira helps.

I keep hoping someone will post that they got on Remicade and they lived happily ever after forever and ever - but I'm starting to get the picture that this disease and fistulas don't generally work that way. I'm trying to live more in the moment and cherish the good days.

I appreciate all of your support!

 

[Echodog]

I think my fistula problems are a little more extreme than most. I know a lot of people have had great success with Remicadee and been fistula free. There are people that have had success using 6MP. You have to keep trying until something works. There's a really good chance that , had Remicadee been available after the study ended, I never would have had to go through half of what I have. Unfortunately, once I went off of it ( after the study ended the drug company refused to give me more until was approved by the FDA) it seemed to no longer work when I got it a year later

 

[matt82]

I think my fistula problems are a little more extreme than most. I know a lot of people have had great success with Remicadee and been fistula free. There are people that have had success using 6MP. You have to keep trying until something works. There's a really good chance that , had Remicadee been available after the study ended, I never would have had to go through half of what I have. Unfortunately, once I went off of it ( after the study ended the drug company refused to give me more until was approved by the FDA) it seemed to no longer work when I got it a year later[/QUOT. Sorry I messed something up here with my post. Was suppose to go onto another fourm and accidently posted on here

 

[Crohniefor30]

I have fistula's that started as abscesses. After seton placement surgeries, I continued to have problems with crohns of my colon and surgery is not performed when disease is active poor wound healing). Setons are placed to prevent further abscesses from developing, as it keeps the pus from accumulating and allows it to drain out. You can always get an abscess in a different place, and a fistula can develop from it. My GI thought I should try Remicade, and after a couple years of suffering, I finally had my first remicade infusion (I put it off because I was scared of the side effects). Wow, this drug is amazing. What a change. I now feel like I suffered through years of crohns because I didn't think I needed it. Normalizing symptoms is quite common with crohns. We think we can live this way, because it's our normal. I know Remicade doesn't work for everyone, but well worth trying.

 

[Echodog]

It worked miracles for me when I was in the study. Unfortunately I be a,e allergic when it was approved a year later. I had luck with Humira as well. Since that stopped working I've been on Cimzia, stellara and can't remember what else all with no luck. Probably going to have to either have an ostomy next month or hope for a miracle. I've got at least 3 sights draining and they never stop

 

[ronroush7]

Cimzia worked for a while with me, then failed . I developed an allergy to Remicade. I am currently on Stelara. Best to you.

 

[Crohniefor30]

New medications are always coming out. I think that if you can deal with the fistulas before they become fistulas (just tracks) this disease would be easier to control. Our bodies naturally try to fight the infection by moving it out. Unfortunately, by the time symptoms appear, is usually too late. I was also thinking about the ostomy. Anything that can help you have a "normal" life.
I wish you much luck with your fistula problems. Keep up the fight.

 

[Echodog]

My issue is the ostomy. I've had them 2 times - when I was 19 and when I was 30. I'm 46 now. Both times, I had a few years of normalcy. The problem for me was it felt like I traded one problem for another. I just was never able to get used to the bag. It was uncomfortable, and as a musician, physically, it didn't do me any favors. That being said, I'm out of options and gas.