I've had a fistula since July 2014 and I hate this thing!! I know we all do.. Clearly. This thing will not go away or get any better!!! I'm told it's a grade 4 fistula. It's bad apparently. I'm told it's very complex. I get that they can't go in there and cut away because it's complex... But isn't there anything they can do? I had a partial fistulotomy (sp) and a drain tube set in December 10 after months of no one doing anything to help. I don't take medicine for it because I'm told it's walled off from my body (what??? It is in my body isn't it.. How is it walled off.. Sure...) so any medicine won't affect it. Seems crazy to me but what do I know. I'm just learning. The drain tube helped but I was told immediately after surgery that it will likely fall out and I shouldn't be concerned. Great. Well it's Feb 15 and the tube slid out quite a bit. A week after surgery it slid out about 3 inches and the stitches ripped out. Surgeon trimmed it so it's more comfortable. Now it's slipped out about about 3 inches and it's causing me so much pain!! It's hanging in just barely and not draining like it used to. Not sure what's going on. I can't move my leg much because the fistula feels so full causing me to walk like a penguin. I always say it feels like a pole running down my butt to my leg. Terrible pain. I can't sit on my butt. I can't remember the last time I saw flat on my butt. Probably July 1st 2014...the day before this mess all started. Any advice with what I could do?? Anything I should say to my doctors?? Any advice at all would be greatly appreciated. I hate this thing. It hurts beyond hurts. I have a high pain tolerance and I just can't take it. Pain for 8 months straight makes me fed up with pain. I have no more patience left... I'm just being pouty I assume. I go though motions where I'm strong but other times when I'm weak and tired.right now I feel tired. Anyway any advice would be great. I hate this thing! Causes me so much pain and frustration. I had to put my schooling on hold for all this and I want to get back on with my life. Help??
Fistula just won't stop!! I hate this thing!!
- Thread starter Nixie128
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Help Support Crohn's Disease Forum:
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I also got a fistula in July 2014 and mines still here too. They are so frustrating and painful! I have been put on azathioprine for mine- not been on it long because it took the doctors that long to sort the test out. I didn't know they did grades for fistulas and I don't understand how it's walled off your body.. Mine opens just about my anus and is connecting to my bowel and it swells and bleeds often! I haven't really found anything that eases mine yet! I hope they get you sorted out soon 
will you have to have surgery on it because medication won't work?
will you have to have surgery on it because medication won't work?When I went to my family doctor she had a report saying it's grade 4.. I had to google it to find anything about that lol. I don't know how doctors are saying it's walled off either . meaning it wont be penetrated by any medicine. Which is I assume why I am not prescribed any medicine. I feel neglected by these doctors around here really. I want medicine. I want treatment. I want a sign that this thing may eventually heal. I assume that I will have another surgery to help heal this thing, but I am really not sure to be honest. I can't live with this pain constantly, it's so bad. My skin where the fistula is feels so thin because the fluid that builds up feels like it's stretching my skin. It's terrible. I sure hope you can find some sort of relief soon also! I always wondered why I wasn't on any sort of Medicine. Doesn't make much sense to me. My doctors, surgeons, colorectal surgeon all say to have sitz baths lol!!!! I hate having to change gauze every 2 hours, having to wear a pad to catch any drainage that the gauze does catch,the odor, the general yuck feeling. Knowing that my body is draining pus for the past 8 months just grosses me out. I've had every shade of drainage it seems, and now I'm stuck at what my doctor is telling me is just pus. Gross!!! I'm 29 and it makes me feel like I'm 90.
My friends are telling me to change what I eat because some foods would cause more pus and drainage than others... Like eat only fruits and veggies, healthy foods. No dairy, no greasy foods.. She's not a doctor, and neither am I, so does anyone know for that's true? It doesn't make sense to me, but.. I don't know. Any ideas?
My friends are telling me to change what I eat because some foods would cause more pus and drainage than others... Like eat only fruits and veggies, healthy foods. No dairy, no greasy foods.. She's not a doctor, and neither am I, so does anyone know for that's true? It doesn't make sense to me, but.. I don't know. Any ideas?
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What's a fistulotomy?
I know exactly how you feel... I'm 24 and it makes me feel old and unattractive- it's a major downer on confidence! It sounds like your do tors are useless... I thought mine were bad enough taking so long to get me on medication where as yours have basically just left you to it! Maybe if they experienced it just for a day they would be more concerned and empathetic!
I know exactly how you feel... I'm 24 and it makes me feel old and unattractive- it's a major downer on confidence! It sounds like your do tors are useless... I thought mine were bad enough taking so long to get me on medication where as yours have basically just left you to it! Maybe if they experienced it just for a day they would be more concerned and empathetic!
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Yeah, I understand how you feel with the insecurities. Having puss drain out of your bum doesn't really have much sex appeal does it? 
so my docs are actually pretty great. I see my GI every six months and he checks the seton and fistula. Since the seton is doing so well they do just want to leave well enough alone for now. Ok, others can correct me if I'm wrong because I'm no expert, but my docs explained (two years ago now so again, I may have this wrong) that with a fistulotomy they would open up the fistula from the inside and allow it to heal from the inside out. It's one of the ways to, theoretically, permanently heal a fistula.
When I first started Humira it helped clear up abscesses that began to form. So anyways, I used to love bike riding and spin class but no cushion can make doing those activities comfortable for me. I stick to yoga and running now. But even running chafes my seton a bit.
so my docs are actually pretty great. I see my GI every six months and he checks the seton and fistula. Since the seton is doing so well they do just want to leave well enough alone for now. Ok, others can correct me if I'm wrong because I'm no expert, but my docs explained (two years ago now so again, I may have this wrong) that with a fistulotomy they would open up the fistula from the inside and allow it to heal from the inside out. It's one of the ways to, theoretically, permanently heal a fistula.When I first started Humira it helped clear up abscesses that began to form. So anyways, I used to love bike riding and spin class but no cushion can make doing those activities comfortable for me. I stick to yoga and running now. But even running chafes my seton a bit.
Yes, they basically cut open the fistula a bit,thats what I was told was a fistulotomy. My colorectal surgeon is great, she got me in for colonoscopy and mri quickly. Surgery was quick too. 6 days is all I had to wait. Everyone else isn't doing a whole lot to help me. It's a lot of sit and wait... But if they had the pain in my ass that I have they wouldn't sit and wait!!! I feel like they just don't take me seriously. I'm told it's worse than childbirth.. (the abscess... fistula) but yet they can leave me to this pain for 8 months... Geez.
My doctors are so bad that I had an appointment with a GI on Feb 23... They cancelled it after I've been waiting and waiting because I mentioned maybe wanting to eventually find a doctor in my own city and not 2 hours away since it doesn't make sense to keep driving so far away for every appointment. Well that was a mistake because they cancelled that appointment and said "you can't have 2 GI doctors.. "... I corrected them and said at this point I have NONE!!!! It's just been miserable.
My surgeon couldn't do a Seton because she couldn't find the" end" of the track.. Or couldn't get to it because it wraps around my anus. I was suppose to get a Seton but instead got a partial fistulotomy and a tube stuck up the track about 7 inches. Thats all she could do. And I knew she had doubts about the Seton but I was hopeful. Don't know what options are out there for me now.
My doctors are so bad that I had an appointment with a GI on Feb 23... They cancelled it after I've been waiting and waiting because I mentioned maybe wanting to eventually find a doctor in my own city and not 2 hours away since it doesn't make sense to keep driving so far away for every appointment. Well that was a mistake because they cancelled that appointment and said "you can't have 2 GI doctors.. "... I corrected them and said at this point I have NONE!!!! It's just been miserable.
My surgeon couldn't do a Seton because she couldn't find the" end" of the track.. Or couldn't get to it because it wraps around my anus. I was suppose to get a Seton but instead got a partial fistulotomy and a tube stuck up the track about 7 inches. Thats all she could do. And I knew she had doubts about the Seton but I was hopeful. Don't know what options are out there for me now.
Nixie I have a fistula as well not as complicated as yours and not my first time either. This one has a seton.
Antibiotics will help!
A if the docs object tell them it's worth a try. What's the harm?
Antibiotics are part of the standard protocol for Crohns.
Flagyl, cipro combination is the first choice. I can't take them anymore but I have been on augmentin now for 6 mos. if I stop iget a little of what you got.
Remicade is the best at healing fistulas but you have to clear the infection first (with antibiotics)
12 years ago after battling a fistula and abscess in the hospital and clearing it with AB, tubes, the docs are like now what some kind of surgery?
I said give me Remicade and the fistula will close, they did and it did.
1week later the Surgeon said get outta here you're a success story you don't need me
Alas nothing lasts forever.
Good luck
Antibiotics will help!
A if the docs object tell them it's worth a try. What's the harm?
Antibiotics are part of the standard protocol for Crohns.
Flagyl, cipro combination is the first choice. I can't take them anymore but I have been on augmentin now for 6 mos. if I stop iget a little of what you got.
Remicade is the best at healing fistulas but you have to clear the infection first (with antibiotics)
12 years ago after battling a fistula and abscess in the hospital and clearing it with AB, tubes, the docs are like now what some kind of surgery?
I said give me Remicade and the fistula will close, they did and it did.
1week later the Surgeon said get outta here you're a success story you don't need me
Alas nothing lasts forever.
Good luck
At the very beginning I was on antibiotics for about 2 months. Flagyl and some other one I can't remember the name. But then doctors all told me to not even bother. Would it be a surgeon/general family doctor/ or a gastro doctor that would give me medicine for the fistula. Because I've seen at least 25 ER doctors, 4 surgeons, two specialists (who specialize in God only knows what.. They were useless) and a colorectal surgeon. Only doc I haven't seen was a gastro doc, and that may be a couple more months before I get in to see one of them. I'm trying to be proactive about this, but I feel like I've hit a roadblock, again. This tube will be gone within a week I imagine, and if the skin closes over all this fluid will build up and I'll be unable to move / function all over again like I was at the beginning of all this mess. I'm in a lot of pain, but I can at least walk, and moved bit with out feeling like I'm going to be sick from pain.
Nixie finding the right doc is crucial. If possible you want to see someone that specializes in Crohns disease at least a GI who will work with you.
They told you not to bother because they had no long term solution or plan and don't understand crohns.
Basically you just keep trying everything until you find what works and that may be a combination of multiple drugs.
They told you not to bother because they had no long term solution or plan and don't understand crohns.
Basically you just keep trying everything until you find what works and that may be a combination of multiple drugs.
I appreciate all the help everyone has given me. I sure wish I already had a doctor who would come up with a long term plan and solution. It seems cruel that people have to live like this with something that seems so simple in the big picture. I absolutely understand this is not the worst thing in the world and I am thankful that this is treatable. But dang!!! I need a doctor to get me on a track to wellness!!
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You can ingest them: 1tsp each day. You can also use them to wipe the fistula area to improve antibacterial protection after each bowel movement.
I have had 2 abscess/fistula surgeries and while it has not healed, it has also never wept or drained pus. I also drink 50mls colloidal silver each day. You could also add this to a sitz bath along with vitamin C to boost healing.
Natural Remedy for Fistulas and Perianal Abscess
The current medical treatment for perianal abscess (which often results in a fistula) involves oral drug antibiotics and manual drainage of infection from the abscess. However, many doctors wish there was an alternative treatment, since it is so hard to get antibiotics to the actual infection site. Oral antibiotics are processed via the GI (digestive) system, so very dilute amounts end up reaching the rectal area. The good news is: We DO have an alternative treatment that delivers a very powerful natural antibiotic directly to the abscess site.
We now have a large number of sufferers who have tested this protocol and nearly all have had a marked improvement, with the majority seeing complete healing. So I have posted the protocol here and if you try it, please post your comments to let us know how it worked, whether you changed or adapted it, etc.
http://blog.listentoyourgut.com/perianal-abscess-natural-treatment/
Nym, your abscess/fistula doesn't drain?? That blows my mind. Mine drains non stop. Probably about 5 tbsp+++ a day. A lot it seems. I know, so gross, but this has what my life has become. Talking about and experiencing gross things. I will give the coconut oil a try, because I'm fascinated with coconut oil anyway, never even thought to use it for this mess I've got going on. Very interested now. Thanks for the information!!
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Very welcome, Nixie. I really hope you'll be free of the messy fistula asap. Add a tsp of the oil to your salted sitz bath before bed ... and sleep (and feel) like a baby! I have solved vaginal thrush with nothing but coconut oil and I'm in no doubt of it's internal benefits. My nails, skin and hair no longer dry, brittle, flaking, itching mess it once was. I also healed a pretty bad wound on the underside of my forearm with coconut and hemp oil. No proud flesh there at all. ♥
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Nixie, has your doc discussed going on a biologic drug such as Humira or Remicade?
Humira closed my fistula in a few days. Mind you, I had 2 fistulotomies and seton placements prior to going on Humira.
Best of Luck
Humira closed my fistula in a few days. Mind you, I had 2 fistulotomies and seton placements prior to going on Humira.
Best of Luck
My doctor hasn't discussed any medicine or anything to fix the fistula except for a Seton surgery which when I was in for surgery she couldn't do, so she ended up shoving up a tube to help it drain, but a week ago my drain tube fell out.... So now I'm left with a hole where the yuck drains out. I see a GI doc this Thursday so maybe he will have some ideas. I'm crossing my fingers
Hi am still new to all this and only found out i have crohns or colitis ( still waiting second test) as after many years of constant toilet problems my doctor finally had a look and found a fistula. My question is can it get that bad that it feel's like its blocking you from going the toilet
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Met my GI on Thursday and I pretty much love him right about now!! Got good feelings about him. He pressed on my stomach and asked if it was tender. I said yes,so now I have to go for a small bowel xray. I had been feeling "swollen" in my stomach for over a week, so when he asked if I was tender I knew I wasn't crazy. I have to go for ANOTHER colonoscopy though. Ugh!! I just had one 3 months ago!!! Ugh. But I'll do it... Because I have to. Doctor said he might prescribe me biologics for the fistula. Because it's a grade 4 intramuscular blah blah blah. So I didn't learn a whole lot about crohns on this visit or how they will fix me up a little, but I'm on the right track it seems and the doc is awesome. So I'm hopeful. Colonoscopy is scheduled for March 23...and it's a 4 day liquid prep... So that's gonna suck pretty hard.. But anything to. Make me better, right??
Sounds like you are having a really rough go of it, Nixie128. I have two fistulas that I had setons in and one that was cut open in December of last year. I have never heard of grades of fistulas, but grade 4 sounds awful.
I am happy to hear that the new GI is talking Remicade. It helped heal and keep mine closed for years. I unfortunately developed antibodies and had to go off, but it was really a miracle drug for me.
I'm also in Ontario, so message me if you want to talk about specific GIs in case we live in the same area.
I am happy to hear that the new GI is talking Remicade. It helped heal and keep mine closed for years. I unfortunately developed antibodies and had to go off, but it was really a miracle drug for me.
I'm also in Ontario, so message me if you want to talk about specific GIs in case we live in the same area.
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The doc is trying to preserve muscle, very important if the do a fistulotomy.
Good Luck
Good Luck
I have a fistula and have had it for about a year now. My GI just DX today though. He wants to do surgery due to the humira is not helping my crohn's or has not done anything for the fistula. We are waiting on the results from my CT SCAN being done Friday. Preparation for resection surgery and will take care of the fistula all at once.
Folks,
If the fistula is classified "low anal" - meaning no inner sphincter muscle involved, little or no outer sphincter muscle - then you will qualify for lay open fistulectomy. LOF has a very success rate in low anal fistula. They totally lay the track open, from internal opening to external opening through the anus. It will heal nicely from inside out.
Patients like us - mine is a high anal Trans-sphincteric fistula - suffer without clear treatment choices. I have had 6 I&D so far. Fistula repair (ERAF, LIFT, plug .. etc) procedure has not even been discussed. Suffering since Nov 2013.
If the fistula is classified "low anal" - meaning no inner sphincter muscle involved, little or no outer sphincter muscle - then you will qualify for lay open fistulectomy. LOF has a very success rate in low anal fistula. They totally lay the track open, from internal opening to external opening through the anus. It will heal nicely from inside out.
Patients like us - mine is a high anal Trans-sphincteric fistula - suffer without clear treatment choices. I have had 6 I&D so far. Fistula repair (ERAF, LIFT, plug .. etc) procedure has not even been discussed. Suffering since Nov 2013.
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Do you make the suppositories with the oil? Does it affect amount of drainage
Hi there, I hope everyone gets a chance to read the following: This has brought my fistula symptoms from extremely uncomfortable and unpleasant to almost 0. I make organic virgin coconut oil suppositories by melting it into mini ice cube trays. I use Nutiva organic virgin coconut oil (cold-pressed, not refined, 62% medium chain triglycerides).
I put the suppositories in a jar in the fridge. (Make sure they are small enough). After every BM, I put one inside - make sure it goes past the sphincter. The oil melts through the fistula and the results are amazing.
I used to get recurrent flare ups, where it would be so painful I could barely walk. I would exude puss for days, and would use toilet paper to collect it.
After using coconut oil, I never get flare ups. I haven't had one since using the coconut oil suppositories. My puss has gone from a level of 10 to .25. In other words I have a tiny amount of puss only on some days. I have no pain. It feels completely normal down there.
Note that my fistula has an entry/exit point that does not pass beyond the anus. If the exit point is past the anus, you will likely have coconut oil coming out the other end. But the coconut oil seems to 1. coat the surface of the fistula 2. disinfect it of bacteria. So it keeps it clean and infection free. Coconut oil is antibacterial/antiviral. This was my reasoning when I decided to experiment with it.
I wish you all the best with this. I truly hope it works for all of you! This has been a real mess, but at least the coconut oil has kept me symptom free as long as I use it every time I go to the washroom. Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
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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
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
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Do you see a surgeon in Canada?
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!
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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/uploads/2014/11/Hyperbaric-Oxygen-for-Perianal-Crohn’s-Disease.pdf
http://www.ncbi.nlm.nih.gov/pubmed/7806829
http://www.ncbi.nlm.nih.gov/pubmed/...nel.Pubmed_DefaultReportPanel.Pubmed_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/resear...apy-in-crohns-disease-and-ulcerative-colitis/
One or two of these articles are not related to hbot- it's a list I put together to review with my dr
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/uploads/2014/11/Hyperbaric-Oxygen-for-Perianal-Crohn’s-Disease.pdf
http://www.ncbi.nlm.nih.gov/pubmed/7806829
http://www.ncbi.nlm.nih.gov/pubmed/...nel.Pubmed_DefaultReportPanel.Pubmed_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/resear...apy-in-crohns-disease-and-ulcerative-colitis/
One or two of these articles are not related to hbot- it's a list I put together to review with my dr
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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.
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.
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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.
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.
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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
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
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!
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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.
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.
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Hi James, how are things going for you?
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?
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?
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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
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
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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
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
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.
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.
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!
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!
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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 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.
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...
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...
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.
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....)
