Treatment options for small bowel fistula in Australia

[Catherine]

Hi everyone

I am looking for treatment options for a small bowel fistula in Australia.

My daughter has developed a small bowel fistula while on aza but her area of inflammation is now much reduced to 30cm of small bowel. We are currently waiting on blood tests which will hopefully allow increase in aza dose.

We have spoken to surgeon who would like to see her again in 3 months after she has complete current pred course.

Remicade has been discussed but is not an option as her PDCAI in under 7.

Does anyone know of any other medications which can be used to treat a fistula?

 

[my little penguin]

Hugs
Catherine
You may want to also post on the general adult board as well
Since there are so few of us back here
Still makes me mad about the remicade for you/her
EEN or LDN added to Aza as an extra -- not sure of any studies though .


Good luck

 

[my little penguin]

Oh and an adult irl crohnie I know still has many fistulas even though he has been on remicade for many years so ...,,,,

 

[Tesscorm]

Sorry, no advice just wishes that you can find something that can work on the fistulas... As far as I know, EN insnt known to work on fistulas or abscesses, HOWEVER, my friend's daughter was facing surgery last summer for an abscess/perforation, although GIs did not want to do surgery as she's only around 10, they were adamant that there was absolutely no choice. But, as she'd been quite sick, on TPN and in the hospital for a month, they'd wanted her to strengthen a bit before surgery in the fall. She was put on exclusive EN for 6 weeks (she was also on iv antibiotics). After the six weeks, they couldn't find the abscess/perforation! They admitted they had no explanation for the healing of the abscess or perforation. So, while, EN is not considered a treatment option in these cases, perhaps its anti-inflammatory properties and the nutrition it provides can help the body heal itself???

Good luck... :ghug:

 

[kimmidwife]

No advice I am sorry just wanted to say I am thinking of you guys!

 

[Catherine]

Thanks everyone, Sarah is fine, she has taken her last dose of pred today.

I completely understand why she is not candidate for remicade at this time. My understanding from Dusty is remicade works well for most common type of fistula but small bowel fistula don't usually response as well to medicines.

I am just looking at whether there are other options prior to surgery. Sarah's GI advises me at this time surgery will not be considered as she has no symptoms other than Amenia.

 

[Dexky]

Is the GI concerned with the fistula? If surgery and Remi are off the table, any other options being discussed?

 

[Catherine]

The GI main concern with fistula is her age.

We hope to increase aza after blood test confirming level. The first test appears to have been losted, having blood done again tomorrow.

Opinion is divide on the fistula-
- radiologist believes he saw a fistula
- surgeon understand why radiologist thinks it a fistula
- professor thinks it fistula
- GI going with professor opinion.

What they are all sure is that this fistula was not on MRI from January but on MRI of October but there is also much less disease activity.

Sarah is now considered a interesting case.

Surgeon to review in 3 months.

 

[DustyKat]

Medication may still work Catherine so it is certainly worth a try.

I wonder if the fistula may have been there earlier on but couldn't be seen due to the inflammation?

If Sarah does have a fistula, of the type they suspect, and she has no bothersome symptoms it is not uncommon to do nothing on the surgical front aside from observe and monitor.

Dusty. xxx

 

[Catherine]

I am all for the await and see response on surgery. Sarah is feel great.

The major concern now is her disease appears to be for most part silent.

 

[DustyKat]

Are they planning on regular MRI's as a way of tracking what is happening?

Dusty. xxx

 

[Dexky]

Sarah is now considered a interesting case.

Surgeon to review in 3 months.

I'm sure you'd rather she be an easy, boring case but at least interesting should keep them involved. I hope things remain on an even keel until the review!

 

[Catherine]

Good to be an interesting case without severe symptoms or disease.

Yes they are going use MRI to check her disease activity.

Had blood done yesterday, FBE,folate, iron studies,thiopurine metabolie level.

Hopefully we will get results from the thiopurine test this time. The test was not in the manual but she rang head office.

 

[my little penguin]

Hope the results get back quickly

 

[DustyKat]

Not sure about in Vic but in NSW our thiopurine bloods have to go to Westmead in Sydney. There was at least a 2 week turn around period.

Good luck with all the results!

Dusty. xxx

 

[Catherine]

The first test was done in November, so it should have come back by now.

All I know is this test costs $140 and there is no Medicare rebate.

I will put follow up in the diary for two weeks from now.

 

[Catherine]

Hi Everyone, I just posting Aussie, response below to my questions in the Fistula Forum.

Hi Catherine and David,

In regards to enteroenteric fistula (bowel to bowel), if there is no abscess or stricture, and your daughter has no clinical symptoms (diarrhoea, weight loss, etc) then there is no need to rush in with surgery, and just continue medical therapy. If the distance of the bowel between the fistula connection is only short, then the length of bowel "skipped" is much less likely to cause trouble with malabsorption/diarrhoea.

In regards to medical therapy for internal fistula (not perianal), there is not a lot of evidence, most is for perianal fistula. However, most medical therapies have disappointing results. That being said, if you don't have to rush to surgery, I would optimise medical therapy (ensure Imuran well dosed with TGN around 400 or so) and keep a close eye on the fistula with MRI scanning.

A few quick points, prednisone is good at reducing inflammation, but it impairs mucosal healing, which your daughter needs to fix the fistula. Much better would be enteral nutrition (EEN), although getting a teenager onto a strict EN diet when they are asymptomatic might be a little tricky. It would also be worth looking at retrograde balloon enteroscopy, essentially colonoscopy with a balloon that lets you go a lot further, with this technique, you could easily reach the area of ileum in question and actually see the mucosa and assess the level of inflammation and perhaps see a fistulous opening and look for any strictures that might be driving the fistula.

Best wishes.

 

[Catherine]

I spoken to Sarah about giving EEN a go. She said she could do 1 week but not 8 weeks.

Do you guys think worth getting information for her to look at because she did not give me an outright no.

If we were to go this route, it would have to be her decision as she is almost 17 and 1/2 year old.

Any input would be appreciated.

 

[my little penguin]

I think you need to present her with the options - not to scare her but how much down time would she have with surgery.
Honestly if I was told I had to do EEN as adult - it is very hard to fathom. ....
But tell her if she is willing to try a week and makes it to two then great.
8 weeks is ideal but anything is better than nothing so you just take it one day at a time .
The first two weeks are the hardest.
Then you get in a routine .
Good luck

 

[DustyKat]

I think it is well worth her having a look at the literature and giving some serious thought to giving it a go. I don't see that you have anything to lose, only everything to gain. Even is she says no she is gaining some knowledge and insight into her disease...win/win.

Dusty. xxx

 

[Grumbletum]

Hi Catherine, hope you don't mind me butting in. I've been following this thread with great interest as I also suffered from an intestinal fistula and the treatment path here in the UK is exactly as Aussie described. It did heal briefly on an antibiotic, Imuran, Remidade combo, but opened up again 6 months after my last Remicade infusion.
My case is different in that I did suffer from symptoms caused by the fistula. EEN was never suggested as a treatment option. It's easy to speculate and say I would have given it a go in an effort to avoid surgery, but I really wonder if I would have managed to do it?
My surgery story is here should your daughter ever want to read it. I'm hoping that she might never need to.

 

[Dexky]

Helen, are you on no maint. meds still? by choice? or they won't prescribe?

 

[Grumbletum]

@ Dexky. There was a bit of a mix up and I haven't had my post op review yet. Back to see the GI on the mainland on the 17th. I like not being on anything, but do worry about a relapse. The surgeon said GI will probably prescribe 6mp. But I'm going to ask him about LDN, although I don't think it's regularly prescribed in the UK.

 

[crohnsinct]

I say no harm in trying. You never know until you try. That is how we worked it with O. Didn't talk about the 6 or 8 weeks much because that could be daunting. Started with how about you try a shake. She didn't find it horrible. How about a day and before you know it she was chugging along. O tried it because she was scared of Methotrexate injections. Who knows the prospect of surgery just may be the motivating factor. I wouldn't make the surgery sound scary to get her to try it because it might be down the road anyway but just present her with all the info on both and see what she thinks.

Feel free to tell her about O and how much it helped her swimming. I guess a bunch of that was just her getting better as well but the nutrition is so perfect for an athlete.

 

[Catherine]

Results are back

Sarah aza levels are not in range. Her level in currently 180, we are going to increase to 125mg tomorrow.

We are finally moving forward with our new plan for the fistula.

 

[DustyKat]

Good luck Catherine!

I hope all goes smoothly with the increase :hug: and Sarah responds well.

Dusty. xxx