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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistula just won't stop!! I hate this thing!!



 
01-02-2016, 11:15 PM   #31
James80
 
Join Date: Dec 2015
Thank you so much. I think this is what may have helped me in past when I accidentally got coconut oil in the tract (applying it further up on skin, it may have melted along with turmeric into the tract opening). I will try it again.

I am wondering why your tract has not yet healed on its own with the lack of drainage?

When you put suppositories in the jar in the fridge. Do you also wrap them individually? Wondering if they stick together

I have thought about doing the suppositories for awhile, but was afraid.. Thank you so much. Feeling encouraged to try this!

Have plug surgery coming up. Will probably not do this with the plug in. But might be helpful prior to surgery to minimize drainage

If you get a chance to try hbot maybe it will help you.

Let me know if you're interested and I will post a few links here later with respect to studies for fistulas
Coconut oil in the fridge, suppositories will not stick together. It has been such a help for me.

I wouldn't use coconut oil if you have plug surgery. It might dislodge it. (slippery). Maybe use the coconut oil up until the time of surgery.

hbot? what is that? I am interested in anything you can send regarding potential help.

I think the coconut oil disinfects, but it somehow prevents closing it up and healing entirely. When I stop using coconut oil the discharge and pain starts up again.

Thanks for your help!
01-02-2016, 11:57 PM   #32
earthshine
Senior Member
 
Join Date: Jun 2015
I wonder how the oil effects the epithelial lining. Do you have a seton?

Here are a few articles. I think hyperbaric oxygen treatment is a worthwhile treatment to try based on the studies I've read and from speaking to a couple others.

I will post here once I know how it goes for me.

If you decide to try it I would go to wound care facilities at hospitals and see if it can be covered under your insurance.

http://www.ncbi.nlm.nih.gov/pubmed/20628273

http://www.ncbi.nlm.nih.gov/pubmed/2753335

http://www.ncbi.nlm.nih.gov/pubmed/2253542

http://www.ncbi.nlm.nih.gov/pubmed/7774472

http://o2oasis.com/wp-content/upload...9s-Disease.pdf

http://www.ncbi.nlm.nih.gov/pubmed/7806829

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328239/

http://www.ncbi.nlm.nih.gov/pubmed/22693080

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744181/

http://hyperbaricstudies.com/researc...ative-colitis/

One or two of these articles are not related to hbot- it's a list I put together to review with my dr
01-07-2016, 04:16 PM   #33
earthshine
Senior Member
 
Join Date: Jun 2015
i tried the oil for a couple days. How long did it take initially to notice a difference?

I noticed blood (usually don't have this) coming out and wound sites don't look as good as before.. So I decided to stop for now.

Glad it is helping u.
01-07-2016, 06:00 PM   #34
James80
 
Join Date: Dec 2015
i tried the oil for a couple days. How long did it take initially to notice a difference?

I noticed blood (usually don't have this) coming out and wound sites don't look as good as before.. So I decided to stop for now.

Glad it is helping u.
Hmmm...

Hey again. Maybe the blood is simply the coconut oil mixing with the wound. and then the oil seeps out. So perhaps it's just a natural occurrence. I'd stick with it for maybe a week. If you feel an abscess, or pain, just stop. It should have the opposite effect.

I generally find the positive response happens either immediately, or within a few days. I really can't explain it, but as long as I'm using virgin unrefined cold pressed coconut oil, it's almost like I don't have a fistula. The amount I put up there is about the size of a large almond.

Maybe give it another shot. I'm sure it wouldn't be harming anything down there.

I'm actually experimenting with adding a few things into the coconut oil. When it is in its liquid form, I've added some garlic infused olive oil, a couple drops of oregano oil, and now I'm experimenting with some turmeric. (apparently turmeric helps heal wounds, and has anti-inflamitory properties). So far I've had good results. I use the coconut oil as a base, mix the ingredients in, and put them in my mini ice trays. They harden in the fridge, and I pop them out.

Coconut oil might work differently for different people though.

We'll get all this sorted out eventually... Wishing you all the best.
01-07-2016, 07:21 PM   #35
earthshine
Senior Member
 
Join Date: Jun 2015
Hi James80
thanks for the response
i did have an increase in pain, and the wounds appeared agitated... whether it was related to the oil or something else, i don't know. i will hold off for now.

i am glad it is working for you.

mixing antibacterial things in (diluted for sure so as not to irritate the mucosal lining, etc) makes sense.

i asked my pharmacist about this a few months ago... why no suppositories using essential oils diluted in coconut oil exist to heal this type of issue.
01-08-2016, 10:34 PM   #36
earthshine
Senior Member
 
Join Date: Jun 2015
James
Wanted to share this article with you... Do a Ctrl f to find the part about iodine and fistulas.

I have been using potassium iodide along with coconut oil on my skin area.

I haven't tried swabbing yet.

However I know they say iodide kills new sells, along with being antibacterial. I have received controversial input from various providers regarding usage.

http://www.getwellstaywellathome.com/nutritional.aspx?recid=345
01-09-2016, 10:51 AM   #37
James80
 
Join Date: Dec 2015
James
Wanted to share this article with you... Do a Ctrl f to find the part about iodine and fistulas.

I have been using potassium iodide along with coconut oil on my skin area.

I haven't tried swabbing yet.

However I know they say iodide kills new sells, along with being antibacterial. I have received controversial input from various providers regarding usage.

http://www.getwellstaywellathome.com...aspx?recid=345
Thank you for this idea! I might include a small amount of this. You're right about being careful to not put to much stuff up there that might irritate it. I'm being more careful with the amounts of my ingredients. Thanks!
01-09-2016, 12:08 PM   #38
earthshine
Senior Member
 
Join Date: Jun 2015
i heard of one practitioner that does the kshar sutra method (ayurvedic treatment for fistula) uses tumeric on the medicated thread.

if i were doing the suppository approach you are using, I would take care to only use organic, reputable brands, etc.

when i first got sick with an abscess, someone recommended a combination of ghee/turmeric to be applied to the skin area.

keep in touch, let us know how things work out for you. take care.
05-15-2016, 08:52 PM   #39
earthshine
Senior Member
 
Join Date: Jun 2015
Hi James, how are things going for you?
05-15-2016, 09:43 PM   #40
James80
 
Join Date: Dec 2015
Hi there! I'm going much better. I'm continuing to use the coconut oil - it continues to save me daily - keeps it from flaring up. I'm also now on the Specific carbohydrate diet. I've heard of some people who have cured their fistulas over a long period of time using this. It's pretty restrictive - no polysachharides. So no grains or sugars not found in fruits and vegetables. Some people who used the SCD in order to heal their Crohn's found that it actually helped with their fistulas as well. I've been on it for almost two months. Again, I notice a significant decrease in drainage daily. Some days I have 0 symptoms. Other days it gets bad again - especially when I drink.

Diet is a bit tough - restrictive, but I'm dealing with it. If there's any chance it will gradually heal by using this diet, I'm hardcore and willing to stick to it.

Note - the idea is this - monosaccharides are easily digested by the small intestine. Polysaccharides aren't, and continue to the colon. These undigested sugars allow for a proliferation of bacteria - and this bacteria can prevent the fistula from healing. I'm guessing that less bacteria in the colon gradually helps the fistula to heal.

i'll let everyone know how things are at 6 months.

How are things for you right now Earthshine?
05-16-2016, 04:39 PM   #41
earthshine
Senior Member
 
Join Date: Jun 2015
Thank you James
I appreciate the reminder about scd

I was on it for a short while but lost weight. I am not used to eating meat outside of fish and eggs

I might have to try it again though. How do you maintain weight on it?

I have been doing low fodmap diet for several months.

It does help but I am not sure if it heals the gut like scd does or not
05-17-2016, 10:03 AM   #42
earthshine
Senior Member
 
Join Date: Jun 2015
James80
I would also be grateful on your thoughts on the cheese included in the diet, and whether you feel this is ok to have based on your research. I have received controversial feedback from my Drs in respect to dairy. Two say to avoid it due to inflammation concern, one says lactose free is good and of benefit
05-17-2016, 10:08 AM   #43
James80
 
Join Date: Dec 2015
I just eat a lot of what I can eat. But I know eating too much can also make things worse.

I also don't drink Alcohol - it causes a flare up. I don't actually eat a ton of chicken or beef. I eat a lot of eggs. Salads, fruit salad, I make my own almond flour cake. It's not that bad as long as I stay at home. It's when I go out with people that it gets really difficult.

The money I save by not going out pays for the more expensive grocery bill.

I know this diet isn't for everyone (also it can be difficult for some people who are scared of trying certain foods that have caused flare ups in the past - esp. with Crohn's, but for me I tolerate most of the food well. I can't eat the homemade yoghurt - I have a pretty bad histamine intolerance.

I can also eat many kinds of cheese freely, which is great...

I haven't been technically diagnosed with Crohn's, but I find the diet really decreases symptoms of the fistula. - i.e. less drainage. less irritation/itchiness.

So to answer your question - I eat a lot of high fat foods that keep my weight on. It's essentially a paleo diet - so your body uses healthy fats instead of carbs to run on. So lots of avocado, cheeses, oils, coconut, nuts (loads of almonds). Try to get as much protein as possible. Lentils and navy beans (soaked overnight) are allowed.

I'm sure things will gradually get better Earthshine. New treatments are becoming available just around the bend.
05-17-2016, 10:15 AM   #44
James80
 
Join Date: Dec 2015
sorry I hadn't noticed your second post.

Again, I haven't technically been diagnosed with Crohn's (yet). I'm not sure if I have Crohn's. Regarding cheese, I tolerate it well.

The legal cheeses with the SCD are cheeses which have been aged for 30 days or more. So essentially, any cheese which has no lactose in it.

According to the SCD, any sugar which is a polysaccharide causes an increase of bacteria in the gut. Only monosaccarides are legal, as they are digested well within the small intestine. So any cheese which has been aged 30 days have negligible amounts of lactose (an illegal sugar). So aged cheddar (not the kraft processed kind), brie, stilton, the list goes on and on. There are so many cheeses you can have. I prefer raw milk cheese as it tastes better and it's got more probiotics in it.

I really hope this can be helpful for you!

Note that grains are not monosaccaride - so this causes the bacteria growth which can keep the inflammatory action happening.

I don't really know if SCD works for Crohn's. I just know that it helps with my fistula. But there are many people who swear by it!
05-17-2016, 12:52 PM   #45
earthshine
Senior Member
 
Join Date: Jun 2015
Thanks James. I really appreciate it. I have been feeling a bit down lately. I was recently on a course of a/bs but once things are stable again I will slowly start introducing some scd foods in my diet and try to back off grains a bit

I technically don't have a diagnosis of crowns either but a bad fistula. After antibiotics I noticed knee pain and some swelling which had me feeling sad.
05-17-2016, 02:56 PM   #46
bumprump
 
Join Date: Apr 2016
Location: Canada

My Support Groups:
Eventually I want to have this fixed, but being in Canada, I've had to wait it out.[/QUOTE]

I don't understand why you would have to wait, I must be lucky. Went to the emergency room in midlle march (waited 12 hours!). Got appointment with surgeon april 6 had operation on april 19. (québec) Next operation in four weeks . Took care of it quick enough I am hoping that this will diminish the severity and length of this problem. Nipping it in the bud as they say...
05-17-2016, 10:47 PM   #47
James80
 
Join Date: Dec 2015
Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
I don't understand why you would have to wait, I must be lucky. Went to the emergency room in midlle march (waited 12 hours!). Got appointment with surgeon april 6 had operation on april 19. (québec) Next operation in four weeks . Took care of it quick enough I am hoping that this will diminish the severity and length of this problem. Nipping it in the bud as they say...[/QUOTE]

That's excellent. For some reason my GP referred me to a GI specialist. As they are more interested in the whole system, he wanted to rule out Crohn's, but unfortunately it has resulted that I've been sitting here with the fistula for 7 months without definitive treatment. You are lucky they got you sorted out so quickly.
05-17-2016, 10:50 PM   #48
James80
 
Join Date: Dec 2015
Thanks James. I really appreciate it. I have been feeling a bit down lately. I was recently on a course of a/bs but once things are stable again I will slowly start introducing some scd foods in my diet and try to back off grains a bit

I technically don't have a diagnosis of crowns either but a bad fistula. After antibiotics I noticed knee pain and some swelling which had me feeling sad.
I know. My doctor put me on Flagyl and Cipro. It resulted in ringing in my ears which hasn't returned to levels before I started the antibiotics. This continues to frustrate me!

If you decide to do the SCD, you will have to follow it very exactly. But it's okay to gradually get into the diet. But once you're on it, you have to make a serious commitment. You can't cheat at all. The science behind it requires that you follow it with no cheating. I hope that it helps you! I find it helps me for sure.

Actually, I'm going to see my GI doctor tomorrow. I hope he refers me to a colorectal surgeon! I've been dealing with this for way too long!

It will be interesting to see if you find the diet helps you. Don't lose heart. This will one day be all behind us. (You can never use any expressions, as they always link back to our problem haha - pain in the ass, get to the bottom of it....)
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