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My seven year old Matt was diagnosed  a year and a half ago.  He started with a perianal abscess from a fissure-- had surgery on that, then developed a fistula.  Subsequently diagnosed with Crohn's after colonoscopy and the rest of the workup.  He gets abdominal pain a few times a week, but besides that and the non-healing fistula he has no other symptoms.  He takes Apriso daily and was on flagyll for 8 months and did well. Was off the flagyll for  4 months, then the fistula got infected again (every time it starts to "heal" and close off at the skin it gets infected-- sore, swollen, red and purulent).  He is now on flagyll, keflex (another antibiotic) and Apriso.
His doctor wants to start him on one of the big time meds-- remicade or 6-MP.  We have not tried steroids or any other medications.
I am very reluctant for him to go on these immunosupressants because of the side effects and because his only symptoms are the fistula...

Has anyone else had luck with getting a perianal fistula to heal???  What diet or medications did you try?
We are seeing a new pediatric GO doc for a second opinion next Friday-- I think Matt will likely need more tests to see if any other parts of his GI tract are involved.
I would appreciate any suggestions!

Reply posted for matts mom.

Rapid Natural Healing through Fasting:

Hi everyone - I suffered from an recurring Perianal fistula (and/or pilonidal cyst/abcess) which was always located on the edge of my anal opening. I tried all the methods to fix this but nothing worked until I tried fasting. Nothing but water for 2 to 4 days (depending on how big the cyst) would get my body eating away at the cyst and usually by the 5th day it was almost gone. It is such a simple process but after 3 days of fasting the body goes into kitosis and starts to feed on itself, eating away at fatty reserves and also misc things like cysts and sicknesses within the body.


I can guarantee this will rid your body of cysts which I suffered for many years. The cysts occasionally reoccur in my anus and as soon as I feel the first signs of a lump down there, I commence fasting with nothing but water and the cyst goes away very quickly.


Another prevention method that helps me is when I get sweaty in the anal area (particularly at a long day at work) I will periodically dry the anal area so it does not remain sweaty. I have found that if I leave my anal area moist it creates an environment which cysts will grow rapidly.


Please try it for yourself and save the embaressement of seeing doctors with obtrusive procedures as draining and drains etc.

Reply posted for cams angel.

Hi Cams mom and Matts Mom,

i am undergoing the samething. How is the process of your kids? Do you have any key recommendations.

thanks

 Reply posted for jlbtjb.

I make 24 hour yoghurt with cream. It has more calories and a milder flavour. It also makes amazing ice cream with egg yolks, honey and flavouring -vanilla or fruit puree.

 Reply posted for Matts Mom.

Heard back from the doctor today.  Matt had the Prometheus Crohn's Prognostic test done this week and it came back with elevations of four antibodies and pretty high risk for "complications" defined as stricturing or penetrating disease.  When he had the initial Prometheus serology one year ago he only had a tiny elevation of one anitibody, so this does not look good.

On the home front- the antibiotics seemed to have helped Matt's most recent flare up, if that is what it was.  The infection seems to be gone.  Matt will be scheduled for a pelvic MRI and MRI enterography to see if they can tell how extensive the fistula tract is and if it looks like he has small bowel involvement.

Hope your little one is doing better too-

Matt's Mom

 Reply posted for alanschachter.

Thank you for the info!  Will order Florastor online.  Checked two pharmacies already and could not find it.

 Reply posted for Matts Mom.

Diet definitely plays a big role in all of this, but I'm wondering if you have considering consulting a woundcare specialist?  Just a thought.....it may be worth checking out.....they may have a different approach, without adding more meds on board.

Good luck.

Lizzies Mom

 Reply posted for Cams Angel.

Hi Cam's Angel-
Thanks for posting.  I am sorry your son is having to go through all that.  It is crazy, isn't it?  I am happy that he is starting to heal up.
Matt saw a new Peds GI doc today.  He will have another Prometheus blood test on Monday.  He recommended Florastor probiotic (said it would not hurt) and prescribed a topical form tacrolimus (Protopic, I think) for one of Matt's fissures that has never healed for years.
Matt may also have to have one or two special MRI tests, to see what the fistula tract is looking like and to see if there is small bowel involvement, and maybe colonoscopy again.  I hope not, because Matt hates Miralax (that is what he took to clean him out for the last colonoscopy).
I am just happy to be talkig to a docotor who seems to be listening and does not want to jump straight to Remicade!  He seemed open to talking about LDN too if it comes to that.
I will pray for your son-- I hope he continues to feel better.  Hot soaks in the tub help too, some--Matt soaks twice a day.
Matt's Mom

 Reply posted for Matts Mom.

Well, looks like we are in the same boat right about now. My son was diagnosed with Chrons earlier this year. he was 6, (he just turned seven) It was a huge battle. We went in thinking that they were going to fix the fissures that he had in his anus but the turned into an ugly abcess. That in turn tunred into a fistula that was big enough for  grown man's finger to go into. We had no idea what happened or where we went wrong. The doctors have been pushing for Remicade since March but we have opted out of that. I'm not in the mood to risky my childs life like that. The side effects are heavy. And I don't think that I could live with myself if I allowed him to get sicker than what he already is.  I looked for alternatives and so far everything is working out. The main goal is to get the fistula to close up. Currently when he poops the poop will come out of the two fistulas that he has. (Or they were) Ever since we started his homeopathy treatment is has gotten better. He was on Silicea 6x which is suppose to dry up the draining and develop tissue so that the fistula will close. We took him off of Silicea and put him on Calc Fluor 6C, he has been on this for almost two weeks and has been doing WELL. The blood has stopped, the inflammation is calmed down and his fistulas are looking good so far. We also changed his Diet. he doesn't eat red meat, pork or chicken. He eats fish, cooked veggies, lots of fruit and LOTS OF WATER. He takes two vitamins a day and a probiotic.  Just something that you can look into.......

 Reply posted for Matts Mom.

My son's GI just told us today that he could discontinue the Flagyl to see if his appetite will improve.  He has lost about 5 pounds since May, and we would really like to get him going in the right direction again.  We are going to do some blood work on Friday, and I will let you know how things are going.  Thanks for the prayers, and we will be praying for a good visit on Friday with your son's new doctor.  

 Reply posted for alanschachter.

Thanks for the dietary information and the ideas for yogurt and smoothies.  I will try to get some coconut milk and make some smoothies for him.  He generally has no problem drinking, only eating.  His doctor gave him some Pediasure to get some extra calories into him, and while he likes it and drinks it well, I am nervous about some of the ingredients like carrageenan. 

Thanks also for the information about enteral nutrition.  I was surprised to learn that it is used in other countries as a first step in treating Crohn's instead of medication.  Our GI never discussed this as an option.  I need to do some more research on it, but it seems like enteral nutrition or partial enteral nutrition may be something that we should try, especially since he doesn't generally have problems drinking things.  Do you know of any good recipes for healthy, tasty, high calorie smoothies that might be good to try?  I appreciate all the information that you have provided, and I pray that your daughter continues to do well.

 Reply posted for jlbtjb.

jlbtbj-
I agree with you completely about the medications and the side effects.  So scary for our children. 
Flagyll definitely can cause loss of appetite, nausea, vomiting and abdominal pain.  My son recently doubled his dose and had to go back to the lower dosage for those very reasons.
I pray your son will start to heal and that the new medication (LDN) works for him.  Please let me know how he is doing.

 Reply posted for alanschachter.

How long were the patients on the LDN in the study?  So far my son's weight seems ok but slowing down-- he has gained two pounds in a year but is getting taller- still in the middle of the growth chart.  Matt's favorite foods are pretty much peanut butter and milk!  He has gotten really picky about food over the past year.  And stomach aches frequently at dinner time.  I know peanut butter and milk are not good on SCD.  We have not tried any diets or probiotics yet.  Our new doctor we will see Friday is big on probiotics though. 
And the doctors we have seen so far really push fiber on us, because if our son even starts to get semi hard stools the fistula bleeds and gets irritated/infected.  I will definitely bring up LDN.

 Reply posted for alanschachter.

Thanks for the information, alanschachter.  I am interested in trying to move my son towards an SCD-type diet, but right now, there are so few things that he likes to eat that I am at a loss where to start.  Gaining weight is an issue for him, and one of the things that he loves and tolerates well is milk.  I am not sure what to use as a replacement for the fat, calories, protein, calcium, etc. that milk provides that he will actually drink and not gag on.  He likes vanilla yogurt (like Stonyfield Farm organic), but I am not sure if he will actually be able to keep the plain, unsweetened, SCD yogurt down.  He gets nauseated easily and has a terrible gag reflex.  (I am wondering if the Flagyl is part of the reason why the eating problems and vomiting have been happening.)  He is taking probiotics (Florastor, Culturelle), and I plan to add fish oil as well.  I will do some more research on the SCD to see what foods he would actually eat.  We are hoping that LDN will work well for him since we really do not want to start Remicade.  Our only question about the LDN is that we have not been able to find much information about it's effect on patients with fistulas.  Since that is the reason that our GI wants to put him on Remicade, we are hoping that the LDN is effective in helping fistulas heal.  Thanks again for the SCD information as we try to make baby steps in that direction.

 Reply posted for Matts Mom.

My son is 10 and was diagnosed a year ago.  At that time, the Crohn's disease was confined to the large intestine, and he was put on Asacol and Prednisone.  He stayed on Prednisone for about a month and then we weaned him off.  He was doing very well until May of this year when he developed the fistula.  Our GI said that Remicade is the only medicine with a proven track record in healing fistulas and did not recommend 6-MP because it would not help heal the fistula. 

Because I was really nervous about the side effects of Remicade, I looked into other options and discovered the work of Dr. Jill Smith at the University of Pennsylvania using LDN to treat pediatric Crohn's patients.  The initial work looked promising and the medication had very few side effects, so I felt that I needed to try it before going to Remicade.  Thankfully, our doctor was willing to try the LDN.  So far he has only been on it for about a week.  He is tolerating it well, but it is too early to tell if it is helping the fistula. 

As far as diet goes, the GI just told us to limit high fiber foods.  Recently, he has started losing his appetite and vomiting sometimes.  He is losing weight because when he does eat, he only eats a few bites before he feels so full that it feels like it is all coming back up.  Because of the difficulties getting him to eat enough, we have been reluctant to try some of the restrictive diets like SCD.  I am afraid that we would have a hard time getting him to eat enough calories to gain weight. 

It is difficult to make these decisions about which treatment to use because you don't know if the treatments will work and because often it seems like the side effects of the treatments are just as bad or maybe worse than the disease itself.  I pray that you have a good visit with the new GI and that you will find the right treatment to help your son.

 Reply posted for jlbtjb.

Thanks so much for replying!!  How old is your son and how long has he been sick?  Did your doctor recommend the LDN or did you bring it up to them?  It sounds like a good thing to try. Do you do any special diet?  I think the new GI we will see on Friday is likely to suggest 6-MP. 

We have felt very alone through this-- no good answers and not knowing what to expect next.

Matt's Mom

 Reply posted for Matts Mom.

Hi Matts Mom.  I am sorry that your son is having to deal with this very difficult problem.  My son is in a similar situation.  He also has a perianal fistula that does not want to heal.  He is currently taking Asacol and Flagyl, but the Flagyl seems to have no effect on the fistula.  We have tried Protopic (a topical ointment) and Cipro, but neither seemed to have any effect on the fistula.  Currently, we are trying low-dose naltrexone (LDN) to see if it will help heal the fistula.  Our GI also wants my son to go on Remicade, but, like you, I am very worried about the possible side effects especially since the fistula does not really seem to bother him that much.  I will let you know how the LDN works and will pray that your son's fistula will heal.