Boyfriend's Fistula

[jaymejojo]

Hello all - I'm new to the forum so excuse me if if don't know all the in's and out's yet.

My boyfriend has been dealing with Crohn's for several years. But just within the last couple years he developed a fistula on his lower abdomen (we call it his second belly button). Unfortunately, his job does not provide insurance and we cannot afford to get him an individual plan at this time. So we self diagnosed and treated the fistula without a doctors care (stupid I know). Finally early this year he finally agreed to see a doctor. Our diagnosis of a fistula was correct and he was placed on Sulfasalzine. But he still has regular flares (swelling, draining, and irritation). Is there anything else we can do to keep him comfortable? I am so afraid that it will become more problematic. I don't want to accrue a huge doctor's bill - but if it doesn't get better, I'm going to force him to see a doctor again.... they did mention the possibility of surgery.

 

[Jennifer]

Hi and welcome to the forum!

Where are you located so we can try and see if there's something in your area that might help?

If he has Crohn's and has a fistula and its not getting better with the Sulfasalzine then it might not be the right med for him. He may need a combination or meds or something different entirely. He needs a GI so he can get the proper treatment he needs. His health comes first before income.

 

[jaymejojo]

We live in NorthEast Kansas - I don't mind taking him to the doctor but he thinks that the meds are managing it.... I don't think it is normal for him to have a flare once a month (with discharge, swelling, pain). I think he has just lived with it for so long he doesn't think about it anymore! :eek2:

 

[Jennifer]

Would he be willing to join this site? He'd be able to read lots of stories where people are in the same boat. Not being on the correct meds will cause episode after episode and chronic inflammation can cause scar tissue over time which could lead to a blockage and many other complications in the future. Hopefully he wont wait that long to see a specialist.

 

[jaymejojo]

I'll try but he is stubborn - even more so about his Crohn's.

 

[2thFairy]

Ugh! My husband was extremely stubborn about health stuff, especially his asthma. Well, that is until he nearly died from it. He almost didn't make it after an overseas flight... they barely had enough time to land the plane and get him to a hospital. He now takes care of himself in all aspects.

Hopefully your boyfriend will be willing to join the forum (and see a doctor) and it won't take something that drastic to make the difference.

However, welcome to the forum! You are a special person to want to help him out like this!!

 

[jaymejojo]

Would any of you be willing to talk about medications?

While he is currently on Salfasalazine (sp?) it's obviously not working. In the fistula section there have been so many discussions about different types of medicine available I'm a little overwhelmed. I seen people mention Aza, Remicade, etc... What would be a good next step?

(also on a side note, I have Antiphospholipid syndrome and systemic lupus, so fortunately I know a little bit about immosuppresents etc. I can't imagine how hard it would be to figure out all these meds without that background)

J

 

[Jennifer]

First step in my opinion is make an appointment with the GI. Nothing will get done until he sees them. Before the appointment write down all symptoms and questions (including medication suggestions) and bring everything that's written down up with the GI. A good GI will listen to everything on that list and answer all questions. Everyone's case is different so depending on what's happening inside (along with what's causing the fistula) will tell what meds would be best for him. If he isn't comfortable with his current GI (is he the one who prescribed the sulfa drug for the fistula and left it at that?) then you may want to consider finding a new GI (may need another referral from his GP).

 

[stevereds]

sounds like he needs anitbiotics too, like, flagyl and cipro.... I had a belly fistula... eventually I had to have surgery to fix /remove it. I would get him to a good GI Doctor, fitula's in your belly arent anything to play with it..in my opinion.

 

[Aussie]

Hi Jaymejojo, I would strongly recommend your boyfriend sees a doctor who specializes in Inflammatory Bowel Disease! Fistulizing Crohns has a worse prognosis and the longer untreated inflammation is allowed to linger in the bowel, the higher the chance of permanent damage to the bowel.

To his fistula in more detail - when talking about Crohns fistula, there are two main types. Firstly perianal fistula (around the bottom), these are treated with antibiotics, setons and biologic therapy (ie. Infliximab or Humira). Internal fistula, however, are completely different (ie. Entercutaneous fistula - which your boyfriend has) almost never heal spontaneously and almost never heal with medical therapy, they need surgical resection.

Good luck.