LDN and perineal fistula does it work?

S

steph0823

Joined
Mar 24, 2013
Messages
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Hi all I am very new to the site so I'm sorry in advance if there is already a thread regarding this. I have a perineal fistula that developed January '10 right after I had my son. I did Remicade for a year which did work wonders but then switched to Humira for the convenience. I went off the Humira around Oct 2012 because it didn't seem to be working. I did a round of Remicade in November but had a reaction to it and then have not been able to try again due to BP problems and ear infections. My question is has anyone had a perineal fistula heal with LDN. I am so worried about the side effects of the Remicade and Humira that I think about it all the time. From what I have been able to find LDN seems pretty harmless and some people have said cheaper? I have a seton in now which doesn't really bother me but I am over the drainage and panty liners that I have to wear for it. Any info or advice would be GREATLY appreciated.
 
No I've not been on anything since November. I am seeing a new GI in a few weeks supposed to be one of the best in my area and I am going to ask him about it. I want to have as much info as possible before I go in there.
 
I had a fistula. It helped confirm Crohns diagnosis. It healed quite nicely on its own while I was on LDN. I don't know if the LDN did anything directly to heal it, but LDN is said to result in mucosal healing. I think that is what happened in my case. The LDN caused the Crohns to go into decline, and mucosal healing took care of everything EXCEPT for the scar tissue that had built up. It isn't like the way you would treat it with anti-biotics.
 
Thanks Kev it's nice to hear from someone who had a fistula and got positive results form LDN. I've got an appointment April 15 to meet with a new GI and I'm keeping my fingers crossed that this might be an alternative to the remicade and humira that I've been taking.
 
Well, I've had great results with LDN. I just try to be cautious about my 'praise' of it simply because I don't want to commit either of the following... I don't want to give anyone false hope that it will work for everyone (only about 89% at best)... nor do I want to sound like some sort of miracle cure peddler. LDN is legit.. it isn't foolproof, there are some risks to it, but for the majority of people with IBD, it offers a real but safer treatment alternative.
 
Thank you Kev for your honesty there are A LOT of people who say that it is the only way to go. I have found a DR in my area that deals in only natural treatments to put the immune system where it should be so I'm going to check him out too. Hopefully I will be able to find a less toxic treatment and more affordable!
 
I am thinking fistulas grow because of stricturing and inflammation of the irritated and/or damaged areas so the unabsorbed intake contents can make their way to the ultimate ejection destination through detours or there maybe other repair reasons. I see it like a river. Although I am well experienced I am not an expert so this is speculation. I had fistulas prior to resorting to surgery or amputation of the bad areas even though I always thought my body was making them for a reason and it wasn't bad. I am always leery of intervention because of altering the body's healing process but chose to go with the medical experts because, well, they are experts. However to me it sounds like ldn may be an aide to the body's repair process as a safe way of intervention of the inflammation process through endorphins instead of destruction from what I read on the internet but not seeing enough expert testimonial.

It is my understanding the medical community isn't using ldn as a mainstream treatment because there isn't enough research on it which could be because it is an open source drug meaning it can't be patented by a single company which will make competition fierce and the price to be charged low. Since this is a cheap drug, although good for the patient and insurance if applicable, it may not generate enough revenue to support the research and liability expenses as opposed to the Remicades and Humira's $30k to 40k treatment intakes per patient. Medical researchers and lawyers aren't cheap you know. God bless the researchers that have done research to date! My thoughts is this is where the government should be pitching in research dollars, regulations, and/or giving incentives for in this situation. I am not a socialist except when it comes to humanitarian principles like this. People do have to make livings and we want the best. It is great there are people to help in need. However, is bigger profits over ethics going on here? What is a super hero worth? What is suffering worth? Any thoughts on this??? http://www.crohnsforum.com/images/smilies/grouphug.gif
 
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Well, unfortunately, LDN is still in it's infancy, so to speak. Although in my case it has passed the 5 year mark. When I think of the relief the past 5 years have been for me, and the absolute hell my life was pre LDN, then it is hard to restrain myself from shouting all the glories of LDN to the world. But everyone must choose their own path, at their own time.

As for fistulas, I really didn't know what or how these things formed. But, when I saw for myself the scar tissue inside of me, it became apparent that this disease... this 'colony' of malicious critters living inside of me... form these 'tunnels' of themselves.. and sometimes they grow outside of the GI tract... yet also grow inside that tract. In the photos of my insides I posted, you can actually see them spanning from one side to the other. Just dead scar tissue now, but if the disease had kept going, a very ominous sign of what was to come if the LDN hadn't put a stop to it. So, fistulas aren't fun. And I guess those photos prove that LDN can... stop.. even heal.. fistulas. Just can't make it like they never existed. I'm not sure if I have clarified things, or made it even more confusing. And, don't ask me where on this site I posted those photos, I can't recall it.
 
My son's GI doc was hesitant to prescribe it. He said there were just as many studies showing that it does not work and the studies have too few people. I just read this thread and think it is worth a try before trying heavier meds once this abscess finally clears up. He has small bowel Crohns but got a peri-anal fistula. They think it is healed but he has had 3 surgeries in 4 weeks to keep the abscess open so it can heal. The penrose drain finally seems to be doing the trick.

Any ideas of what to say when we go back in a month. I would rather start with this and then go to methotrexate if it doesn't work.
 
Steph0823, have you tried LDN? If so, did you have any luck with it? I just spoke to my GI about prescribing LDN, and he said that he didn't recommend it specifically because of the fistula. I would still like to try it, but he's only used it with one patient with mild Crohn's before with no success, and he feels like it would postpone getting everything under control.
 
So far, we are still managing the abscess healing. His most recent two MRI's did not show fistulas at this time. We see him again at the end of this month. For now, we are weaning off Entocort and seeing how his fecal calprotectin numbers look as we do. I am still keeping the idea of LDN in the back of my mind if another fistula develops or if this abscess continues to have difficulty healing from the inside out. Let us know what you do and your results! Best of luck!
 
That's great that they didn't see any fistulas! I was encouraged that my GI had prescribed it before, but I think he's unlikely to even consider it for me because his other patient didn't improve. I'll be moving back to the UK in about a month an a half, so I might see if I could get a prescription from my doctors over there.
 
Hi Everyone,

I am still keeping LDN in "our back pocket" but we started methotrexate yesterday and are hoping to get approval for hyperbaric oxygen therapy to assist with perianal Crohn's. We also see a colorectal specialist as the abscess still hasn't healed (and got a bit worse). We found an adult specialist who will see kids since there are no pediatric colorectal surgeons in our area.

They still could see no fistula on small bowel follow through that would go downward towards his bum. They did find a small one connecting his terminal ileum to his cecum. The final 6cm of his ileum are inflamed and strictured. Sure hope metho works alone. We will add HBO2 or enteral feeds before biologics. I will also hope to try LDN before that time but may need to talk to another doctor to get a script for it.

Let us know how you do!
 
Click on the name of the person you want to private message (located on the left side of the thread area)... a drop down menu appears.. scrfoll down to the second item in the drop down list.. titled 'Send a private message... rest is self explanatory. Okay?
 
Thanks Arrowhead and Kev. I wrote down the name for the clinic. It is only about 30 minutes away so that is anther great option. We see the adult colorectal surgeon on Thursday and hope to hear back about hyperbaric oxygen therapy coverage this week. Based on how all of that turns out, we may try to get in with this clinic before school starts as well.

Has anyone been on methotrexate and LDN?

Thanks again for the name.
 
HAPPY DAY!! That's what my 19mo old says when she's excited lol. After almost a year my Dr is FINALLY letting me try ldn. Hopefully it'll work and I can kick the immune suppressing meds!
 
I had one... it went away. I think, as the disease wanes (thanks to LDN) things naturally heal. However, scar tissue is permanent... so don't expect miracles there.
 
Also have fistulas & currently researching options that may provide alternative choices besides Humira. Never heard of LDN before.
 
Kev, I hope you dont mind me asking but I noticed in your signature it says you started Remicade since the LDN. Did the LDN stop working? My 13 yr old was diagnosed in October and they keep pushing the Remicade. I'd like them to try LDN, but the current Dr flat out refused because she felt it would just delay starting a more "proven" treatment (ie, Remicade). I'm really afraid of the Remicade. My daughter has just had one perianal fistula, which has now closed up after being on Flagyl since mid-October. Other than that fistula, her intestines are not in bad shape, just a few granulomas, and some ulceration near the ileocecal valve. She feels good, the fistula was really the only symptom that bothered her (that is how we discovered the disease). The doctors term it aggressive disease just because of the fistula, and therefore want aggressive treatment. I'd prefer to try dietary/ lifestyle changes along with milder meds like LDN, antibiotics, etc. while keeping a close eye on the disease until she gets a little older (and maybe other treatments will come available with fewer side effects?)
I want to help her heal, but really want to avoid the scary meds, at least for now.
I was really excited when I read about LDN, but at our long-anticipated Dec 23rd second-opinion visit to the specialist in a bigger city, and her refusal of LDN, I just am left feeling kind of lost and hopeless. Two doctors in two different cities, and still all they offer us is Remicade. I'm feeling very sad. :(
 
Hi Snowflakes, My son sounds very similar to your daughter. He was dx'd at age 13 and his only quality of life issue with Cohns was an abscess with a perianal fistula. It was mismanaged and required a lot of surgeries but finally got better with a fistulotomy. He was dx'd because he stopped growing. He has had normal bowel movements (except when on antibiotics LOL) and his illness is limited to the terminal ileum. My guess is that the reason both docs recommended remicade is that it is the most proven treatment for fistulas including the perianal region. I have not gone that route with my son either given the risks and increased risk for cancer with males his age. We will consider it at some point if needed. He is almost 17 now. I'd love to wait for more research about the actual cancer risk.

I think you may want to ask your doc about other med options that are more "main stream" like Entocort or pentasa to control the ulcers in her ileum. LDN is a less proven treatment that we are keeping our eye on to see if evidence based research shows something eventually. I love to low side effect risk profile. I am a physical therapist and have worked in hospitals for 25 years. I understand the difficulty recommending something that does not have evidence based research behind it but also understand as a parent of a kid with Crohn's the beauty of the potential for a positive outcome and the low risk!

I think if I were you, I would try pentasa and/or Entocort and see what happens for a while. If she gets another fistula, then you would know you need to step it up and consider remicade. If not, you can monitor the terminal ileum with a video capsule or small bowel follow through and see how her ileum is doing and hope those meds do the trick. Entocort is a steroid but only releases in the terminal ileum and ascending colon and has a lot less side effects than pred. Pentasa works on the inner layer of the colon and also releases in the ileum to help with the uclers at the surface level. My son did both and then just pentasa. We did have to up him to methotrexate because his ileum got worse and that has done the trick for quite a while. I personally like the older meds that have been around a while and we know more about.

Unfortunately, there is a huge gray area and we have to make our "best guess." The counter argument to what I am recommending is that if you start with remicade, you may just stop the progress of this illness and alter the natural progression of the disease. We just don't know enough as parents or as doctors to say which method is truly better.

I wish you the best in your decisions! All you can do is research, ask questions, advocate and use your best judgment. There is no obvious or easy answer. Believe me, I wish there was as do most of us dealing with this illness!!! Best of luck to you. It is a journey.
 
Hi Snowflakes, I saw your message and the fact you are from Ohio and wanted to reply. My son was diagnosed in October with fistulizing Crohns. He has had one perianal fishtula that is completely healed. He currently is in a flare and suffers from severe stomach pains but yet his blood work and mri came back normal. The doctors are pushing Remicade and we are very hesitant. He is currently on Pentasa and Prednisone for the flare and SCD diet. We have also been to two different practices/hospitals here in Ohio. I just wanted touch base on your case and see how your child is doing.
 
My son always had normal blood markers as well. The ONE and ONLY thing that helps us track his inflammation is Fecal Calprotectin. It is actually amazing how well this tracks when he will start a flare. He has no symptoms except perianal abscess so this has been so helpful for us. He gets it done monthly. I would request this to see if this can help with your son too.

If you are in Ohio, are you near Cleveland? Both the Cleveland Clinic and the Cincinnati Childrens Hospital have excellent reputations for treating Crohns.

Best of luck to you.
 
Hi BoyMama2000,
Yes, we also do the Cal-protectin (fecal stool test) and it always comes back normal too, which is SO odd to me. Even when he is having severe stomach pains. We are up at the Cleveland Clinic and have not been fully satisfied. We also see the Cleveland Clinic's Institute for Functional Medicine. We recently got our results from their tests, which were much more thorough, and there are signs of inflammation. Cal-protectin was normal (16) but others tests they did on the stool do confirm there is inflammation.

I've heard great things about Cincinnati. Wish it was closer for us!

Thanks for reaching out. Hope you case is better. What medications does your son/daughter use?

Thanks!
 
His proximal disease is limited to the terminal ileum and recent small bowel follow through showed no fistulas or strictures but some mild abmormalities that are likely ulcers. Just did perianal ultrasound (normal), abscess healed with drainage in November. No more pain or drainage since so no apparent fistula this time. Abscess was in healed fistulotomy scar so perhaps it was surface only.

Current meds:
methotrexate 20mg, 1 x week injection
folic acid 6 x week (each day but day of methotrexate injection)
pentasa 2000mg, 2 x day
florator and general probiotic
Costco multivitamn
zinc 250mg for 1 month (? if part of fistulotomy not fully healed)

FCP is normally in 160-170 range. Went up to 1100 with abscess
 
Success with LDN

Hi Everyone, I have just joined this group. I really appreciate the honesty and having a safe place to share. I read the comments and I feel your pain. I have been diagnosed with UC and Crohn's depending on the GI doc. I had been on every ASI drug, 6mp, Remicade and Methothrexate over a 30 year period. I have been anemic and in need of iron infusions. Nothing worked for me. I suffered in silence as not to alienate people. To this day, very few of my friends know the horror of the disease and the ones that I've told about cannot imagine how self-conscious I am.

About 12 years ago, the perianal fistulas that I developed were draining badly from several openings, including my vagina. My colo-rectal surgeon was trying out Fistula Plugs with his patients and I was one of the first. I was informed that (if they worked at all) I could not expect more than 5 years. The procedure was combined with a colonoscopy and it did close the fistulas. It was great for just over 5 years and then I had the procedure repeated by the same dr. It was wonderful. The procedure is only a little uncomfortable for a day or two.

Immediately after the fistula plugs were inserted, I decided to stop all of the meds and try my luck with an Integrative Doctor. She was amazing. I was diagnosed with Celiac disease and began eating a gluten-free diet, free of refined food (including sugar) and limiting dairy to mostly goat & sheep products. The combination of diet and supplements, helped me stay in remission for 10 years. For the first time in my life was able to sustain an exercise regimen which enabled me to complete 3 half marathons and raise funds for the Leukemia and Lymphoma Society. I felt like a new person.

A couple of years ago, I was going through a particularly stressful time and I had a terrible flare-up. I had diarrhea about 15 times a day (with accidents I couldn't control). Sometimes, I didn't even know that I was "leaking". I was losing the ability to absorb nutrients and became very anemic. In addition, the fistulas came back worse than ever. I had to change doctors because I was now on insurance for low-income that very few doctors would accept. Fortunately, a relative was able to refer me to a state of the art facility at a famous university. The Colo-Rectal Surgeon was barely able to examine me, much less do anything about the fistulas. He referred to an equally successful GI Doctor. She was lovely but insisted on putting me on Remicade infusions and Methotrexate after several rounds of Cipro and Flagyl. I resisted but that is the only medications she said would offer me relief. I gave in for about a year and suffered with brain fog, chronic fatigue, lost 2 jobs, could barely get out of bed in the morning and lost my appetite. The diarrhea improved slightly to about 8-10 times per day and the fistulas were not as painful. However, I could not think or stay awake. I had a breakdown in her office and said that I could not go on like this and no more immuno-suppressant drugs. Period.

After about 2 months of being drug free. I was in the same condition but stumbled on this forum in my desperate search for relief. LDN seemed my next step. So, I returned to my Integrative Doctor (who said she recommends it to her patients with all auto-immune diseases including MS, IBD, Lupus, Hashimoto, Fibromyalgia, etc. She prescribed it for with a laundry list of supplements and an anti-inflammatory diet. I have been on this regimen for just over 2 months and I am so much better. After 1 month, I noticed a difference in the number of bathroom visits (now 4-5/day), my energy level is back, I can wake up in the morning, my appetite is good and my coloring is healthy. I lost hair as a result of the methotrexate and it's coming back. I can't say which is helping me more but I'm not stopping any of it. I supplement with ALA, L-Glutamine, Taurine (brain), B6, Liquid Vitamin C, B-Complex, Healthy Blood (Garden of Life), Neo-Cell Collagen (mixed with water), NAG (for connective tissues & mucus membranes), sublingual B12, probiotic and digestive enzymes (before meals) on an empty stomach in the AM. After lunch, I take a multi-vitamin, Biotin, Amino Acids, Quercetin w/Bromelain, Omega 3 and CoQ10. Before bed, I mix Alka-Mind Daily Minerals with water, then, 3mg Melatonin, Tumeric, Folic Acid, Bone Maximizer (Calcium/D3/Mag/VitC, Zinc, Vit K), Magnesium (Bisglycinate/Oxide Chelated Micronutrients) and LDN Cream 4.5mg. I know it's a lot of pills but I'm looking for some of them in a combination with others or eliminate others when I'm symptom free.

As for the fistulas, they are draining very minimally. I have already spoken to a doctor that uses the plugs and has offered to fill out the grant request from the manufacturer. It may be a while but I'm hopeful.

Sorry for the long dialog. Since I have experienced positive results, I wanted to share with the group. I hope that I continue to improve over time, that others can get off the poison and experience life without immuno-suppressants. Best to all of you!
 
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