Newbie w/ mild crohn's + fistula

[puppylove]

Hi everybody,
I've been checking out the forum for a day or so & finally decided to register and post 'my story'...but before I get to that I just want to say thank you to all of you for sharing your stories, tips, advice, support etc... It means so much - you may not realize. I can't stress enough how important it is to have a place like this for practical and emotional support.

I'm a 34-year old woman and I have been battling 'stomach issues' for most of my life but was previously diagnosed with IBS until I got an abscess (which is now a fistula in ano). Most recently, the tests I had done were upper and lower scope (colonoscopy) with biopsies, barium enema, and pelvic MRI. The scope showed only very minor inflammation at the terminal ileum and some inflammation in my stomach as well. The fistula showed up on the MRI which is what 'sealed the deal' for my crohn's diagnosis about 2 weeks ago.

The fistula drained itself about 4 months ago when I was on a short course of strong antibiotics... Then I had 4 months of the fistula being 'gone' which lead my GI doc to guess that maybe it had healed itself(!). Of course I still had nauseau and an upset stomach here and there over those 4 months but I've been dealing with that for the past decade so it wasn't a big deal.

Then, less than a week ago I felt the fistula returning. I had a supply of antibiotics left, so began taking them and felt relief pretty quickly. I'm going to continue taking the antibiotics for a total of 10 days even though my swelling has gone down - but this reappearance of the fistula has got me feeling really down and worried...

The GI doc was trying to persuade me to take azathioprine but I'm really reluctant because: a) I'm worried about the side effects and the 'seriousness' of this medication and b) I want to start a family within the year... My doctor listened to my concerns and didn't try to pressure me (esp. with the news about wanting to get pregnant soon-ish) but he told me to do some more research and think about it. Now that I've done some more reading (here and elsewhere) I'm really worried about NOT STARTING TREATMENT! There is so much discussion about setons and frankly, it scares the heck out of me! I know there is no crystal ball to help see what the future holds, but I'm really worried that if I decide to not take the aza and my fistula becomes more complicated and/or I need a seton in the future - I'll be mad at myself for not having done something... I feel like I'm stuck between a rock and a hard place - I don't know what the 'right thing to do' is re: my fistula.

So, that's my story - any thoughts and/or comments are, of course, very welcome.

 

[scoobydoo]

Thank you for sharing your story. I'm sorry to hear you have Crohn's. I hope you find a good treatment and heal quickly. I probably would take some medication for it, if I were you, as it would probably be easier to manage a mild case than deal with a more serious flare.

I am also a newcomer to this forum and just posted a question regarding treatment for a fissure and a fistula.

I have tried a few drugs and have discovered that it is trial and error, and that different things work for different people. I've had crohn's for 7 years and this is the first time that I have had a fistula from it so I am trying to educate myself about possible treatment options.

I hope to benefit from the experience and wisdom of others and thank those who take the time to post replies. Stay positive!

 

[David]

Hiya puppylove and welcome It's great to have you here!

I can absolutely understand your concern and dilemma about the fistula and starting a family. Regarding Azathioprine, I've been reading this book and reviewing some articles. In one article about Azathioprine found here, they said regarding Azathioprine and 6-MP (basically the same as Aza):

- A study out of Mt. Sinai suggests these medications are safe to use when pregnant.
- If Crohn's Disease is the more serious problem during pregnancy, then using a drug that is less dangerous makes sense.
- A study out of Lenox Hill Hospital found 23% versus 13% of controls experienced spontaneous abortions and 3% versus 0% experienced ectopic pregnancies.
- The male taking 6-MP/AZA may result in increased risks.
- If IBD has been in remission for months or years the author feels it's ok to stop during pregnancy.
- If the male is taking 6-MP/AZA and in remission then stopping the medicine for 1-3 months before conception might be warranted.
- In the end, the author feels there is no conclusion as of yet.

Not all that much help, I realize. But that's basically what the medical professionals have to go on.

If the roles were reversed and knowing what I know, here are some things I would research:

1. Total enteral nutrition. Yes, it can close fistulas and has pretty much no side effects.

2. I would make sure all my vitamin, mineral, and other nutrients are in optimal ranges.

3. I would research the heck out of low dose naltrexone.

I believe those three together would have a decent chance of getting you into remission, especially if you could stick with number one. But if not, then I think Azathioprine is a pretty good idea.

We're here to help you in any way we can

 

[Angrybird]

Hello and welcome to the forum. I too am wanting to start a family very soon and was told with both the Aza (recently stopped this) and the 6-MP (currently on) that I can have children on these - I would just be monitored more than a 'normal' pregnant lady. It is definetly worth looking into the alternatives mentioned though as if you can reach remission and sort out the fistula without a med then that can only be a good thing, just know that you can go on this med if need be.

AB
xx

 

[puppylove]

Hi again,
Thanks for the replies and warm welcome

scoobydoo - thanks for sharing. I wish you luck and good health, and that you find something soon that works for you. In response to your idea that it may be 'easier to manage' a 'mild' case, I'm not so sure that's true... There are many diseases that have been shown to have better outcomes when treated early and aggressively, but I'm not sure there's evidence for that in Crohn's. Anybody else know if that's true or not...?

angrybird - thanks for chiming in. It is reassuring to hear that aza 'may be' safe for use in pregnancy but as David pointed out, there just isn't enough evidence to say for certain either way.

David - thank you for the info! Re: total enteral nutrition, I didn't know it had such a good success rate w/ fistula healing - that is very encouraging!! Does it have to be 'enteral' or can it be 'elemental' ?

~puppylove

 

[David]

I use the two terms interchangeably. As far as I know, yes, elemental would work too. Here's a great book on the subject.

 

[AKPR]

puppylove, I'd love to know how you are doing at the moment and what were your decisions and responses....
I find myself in a very similar situation now.

David, this liquid diet info is priceless! Seems perfect for me! Thanks!

Hope you are all fine!

xx

 

[David]

You're very welcome

Please feel free to post your own story within this forum so we can properly welcome and get to know you