Options for the treatment of small bowel fistula in Australia

[Catherine]

Hi everyone

I normally hang out in the parents forum, but it was suggested that I post here as well.

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 completed her 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?

Sarah also no symptoms and is considered in clinical remission.

 

[Jennifer]

Just looked up some quick info for you Catherine since you hadn't gotten a response yet. Sorry for the late response.

In this link http://ibdcrohns.about.com/cs/relatedconditions/a/fistula.htm it mentions Flagyl, 6MP, Remicade, enteral diet and surgery for possible treatments of fistulas. I imagine all of those treatments are possible in your area.

 

[Catherine]

That's ok Crabby

I will look into flagyl and enteral diet.

She is already on aza and appears to have develop the fistula while taking it.

Remicade is not an option at this time.

 

[Mary:)]

When I developed a fistula I was put on Humira right away. That has healed my fistula. From what I was told only the bio meds can help with fistulas.

 

[David]

Hi Catherine, some questions:

1. What sort of fistula? For example, does it go from one part of the small bowel to another? Or is it tunneling elsewhere?

2. Just after where the fistula starts in the small bowel, I assume there is a narrowing of the intestines. Have they attempted to determine if that narrowing is more due to scar tissue or inflammation and how narrow is it?

With those questions out of the way, while she may technically be in clinical remission, don't let them push that crap on you. That she has 30cm of active inflammation in her small bowel and has developed a fistula tells us her disease is very active and anyone who mentions remission and that all is well because she isn't exhibiting symptoms is full of it.

 

[Catherine]

@Mary, will put humira on my list of things to look into.

@David

1. The fistula appears to go from small bowel to small bowel. What they agreed on was it was not on first MRI
- Radiologist believe it is a fistula
- Surgeon understand why radiologist believes it a fistula
- professor believes it a fistula
- GI is going with professor opinion.

Only was of knowing for sure is surgery, surgeon believes he goes in for a look the best action would be to take outthis section of bowel. Symptoms not greater enough for this course of action.

2. the problem is approx 10cm higher than a colonscopy can reach and go for 30cm in total. This is also now the only areas of active disease. I don't believe there is any narrowing

I know her second MRI is considered odd, as it shows the development of a fistula but decreased disease activity.

The GI believes she is not in full remission, but she has no symptoms or she is that use to being sick she doesn't recognise her symptoms as being anything other that normal. Her inflammation markers are in normal range. She is swimming between 6-8 X 2 hour sessions per week. Her weight is in normal range.

She does have Amenia due to low iron. But it has also improved to the high 10s which is much better that low 9s.

The plan is to increase aza when bloods come back allowing the increase.

I have a thread called "MRI -why is one odd and the other interest case" where I typed in the MRI reports.

I would attach but I can't work out how too.

 

[David]

My understanding is small bowel fistula usually occur proximal to some narrowing. If that narrowing is scarring then surgery to remove that section and the fistula is often best. If there isn't any narrowing or scarring and she has no real symptoms/complications from the fistula, then the fistula may in fact be no big deal and can simply be monitored and hopefully the disease can be better controlled to avoid new ones that do cause complications.

But I think I'll page Aussie and see if they have any input for you regarding this entire situation as they know better than me.

 

[Aussie]

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]

Aussie

Thank you for your response.

I'm getting more comfortable with the GI advise to hold steady. Thank for advise on imuran dosage. We awaiting on test results to hopefully increase dosage.

Sarah ended back on pred due to one episode of severe pain which was resolved by pain medication. The pred was started by the emergency room dr.

Our aim for the new year is keep Sarah off pred.

Sarah will no go for the option of EN, she is almost 17 and half and as such it would needs to be her decision.

 

[Catherine]

Sarah aza level are not in range, at only 180 we will be increasing to 125mg from tomorrow and will be increasing further over time if all go well.

 

[Catherine]

Sarah has had two occasions of severe pain, two days part and is back on pred.

She had an x-ray today to rule out bowel obstruction. The gp found her stomach tender and she rate her pain at 6. She is pale. she vomited after leaving blood testing centre. This may have been from the heat in was 37C which is not good when your in pain.

Have also spoke to GI who now believe her pain tolerance is very high. Her disease is now considered severe but her symptoms are normally very mild.

This on and off steroids can't be good.

 

[Aussie]

Hi Catherine, it might be worth striking while the iron is hot, so to speak, and calculate the PCDAI while your daughter is having a tough week (as long as you qualify in the other areas for biologic therapy, ie. 6 weeks of tapering pred and three months of Azathioprine).

Best wishes.

 

[Catherine]

Aussie, gi think their a problem with two pred tapers, they were both longer than 6 weeks but only started at 30mg. She thinks pred needs to 50_60mg. At this point time I can't see point another 30mg taper if doesn't prove whatever it needs to prove.

Will calcuate the index today.

 

[Aussie]

To qualify for biologic, pred dose must be 40mg or more, then wean over at least 6 weeks. Don't understand why someone would start at 30.

 

[Catherine]

She was only 44kg with first taper and at that stage had mild crohn with already chronic imflammation.

Will talk to the gi about increasing current course to 40mg.

Thanks

 

[Catherine]

Spoke GI have gone to 50mg pred for two weeks then taper.

Hope this will get her into remission or at least tick this box.

 

[Catherine]

Sarah is still symptom free. The decision was made to stay at 50mg pred for 4 weeks this was to make sure this taper ticked all the boxes for Medicare.

She no longer has anemia, hemoglobin now in the high 12s. Iron levels on all four components of the iron study are in range.

B12 now in the 400s (thank David).

She is leading a full life studying very hard in her final year if high school and swimming between 12-16 hours per week.

She is recovering from mild case of shringles, only seven spots in total.

:ghug::ghug:

 

[Catherine]

I am posting these links as the both are experts answers on the use of pred when treating fistulas.

Hopefully Sarah will be off pred in the next couple of weeks.

http://www.crohnsforum.com/showthread.php?t=50498

http://www.crohnsforum.com/showthread.php?t=50497

I think Sarah maybe willing to consider EN!!

 

[Catherine]

I haven't update this thread in a long time. We still have not been able to get Sarah's aza level in range and in fact have had some unusually results

After Sarah moved to 125 mg a day she aza levels actually dropped to 18.

She has been at 150 mg for 5 weeks and we are planning to retest aza levels in 3 weeks.
We are currently hoping to increase aza enough to work out whether she is a shunting or just needs a higher dose.

She had a colonscopy in July which visually only showed about a dozen pin size red stops at the ti. Only one of biopsies of these stops showed inflammation.

Sarah is symptom free. Her hemoglobin levels are low normal.

 

[rollinstone]

im glad shes doing well, if you're struggling with the TGN levels, maybe you could ask the GI if he is willing to try allopurinol and reducing the aza dose?

 

[Catherine]

The aza levels need to be higher before they can work out what she body is doing with the aza. Once they are higher allopurinol maybe added.

We have had a opinion of one top Australian researchers on aza. The current plan is to increase aza again if still not in range on the next test.

 

[rollinstone]

I hope it works for her. I'm expecting my 6tgn lvls back soon, I'm going to ask my GI to go onto remicade though, even though my crohns is considered mild, I want to crush it, I think I'll have a better chance at doing so if I hit it heavy early on. (I read on a few places that this may be more effective).

 

[Catherine]

Sarah doesnot qualify for treatment with remicade. In Australia you have to have failed the lower levels treatments first.