Need to fix my fistula what worked or didn't work for you?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

AaronMSB

AaronMSB

Joined
Dec 18, 2012
Messages
38
Hi All,

I've been a long-time lurker on Crohn's forums but this is my first time posting to one. I am determined to fix my fistula. Short of fast forwarding 10 years when stem cell therapy had cured this disease, I want to know what you have done and if it worked. What treatments are you looking into? I'll start.

I was diagnosed with Crohn's in 2003 and put on but have symptoms dating back to 1997. My first abscess appeared in 2003. Entocort, 6MP, Asacol, Cipro and Flagyl. We opened up the tract, twice (essentially fistulizing it) and I packed it with gauze strips. That didn't work so I used a cutting-seton. By 2005 it had finally dried up and was not active for about 1.5 years. However, it never healed and would bleed from time to time. Then it formed another abscess and a couple of other fistula tracts opened up. I came out of Crohn's remissions at that time also. I was put on Entocort, 6mp, Flagyl, Cipro, pentasa (which was terrible because the little balls of it got into my fistula), and eventually Remicade.

Things started getting better, but very slowly. My fistula would oscillated between active and in active but I would have periods of several months where I felt great. Then at the end of last year I was diagnosed with Hodgkin's Lymphoma. I got chemo (which does wonders for Crohn's by the way) but my fistulas got very angry when I wound up in the hospital for having no immune system. I went off all the other drugs.

Fast forward to today. I'm 6 months in remission for my lymphoma but my fistula become active about one every 6 weeks. I get an infection, go on cipro and flagyl for two weeks. Wait two weeks, get an infection, go back on the antibiotics.

Right now I'm looking into having another seton put in, participating in a clinical trial for stem cell research, visiting the Mayo Clinic in Minnesota and visiting the Cleveland Clinic in Ohio to find some relief.

I would love to hear any advice. Have you had a fistula for 9 years that you want gone? Let's work together, maybe we can make it happen.

Thanks,
Aaron
 
That's great! I'm really glad that's working well for you. Had you tried any other TNF-inhibitors before that?

kronic said:
Humira helped a lot for me, a month so far in and much better.
Click to expand...

Those drugs make me a little nervous, because I've had hodgkin's lymphoma and the chemo already puts me at higher risk of cancer. Drugs like Remicade and Humira carry with them a small chance of non-hodgkin's lymphoma so the docs don't seem to think the two are related for me.
 
AaronMSB said:
That's great! I'm really glad that's working well for you. Had you tried any other TNF-inhibitors before that?



Those drugs make me a little nervous, because I've had hodgkin's lymphoma and the chemo already puts me at higher risk of cancer. Drugs like Remicade and Humira carry with them a small chance of non-hodgkin's lymphoma so the docs don't seem to think the two are related for me.
Click to expand...

Only had asacol before stating humira. Had a seton surgery a couple months ago and then humira last month. Still on humira and antibiotics right now, works great on all of the crohns symptoms... started because of the fistula and it has helped the rest of my symptoms as well.

Not sure about the lymphoma if you already had it... I would be pretty nervous too, but get a couple opinions and if docs say it's ok its ok. I had a big infection down there and they didn't start it until they were sure it was almost 100% safe to start, they don't mess around because they would get in trouble if you get sicker.
 
Surgery didn't work for me either, had surgery twice, one of my fistulas is 7 years old. Have been on so much cipro and flagyl that I now get sick thinking about it and those don't really work for me either. Wish I knew the answers.
 
Last edited:
Hi Alli,

What types of surgery did you try? Have you investigated fistula plugs or fabrin glue at all?

Since you are in Ontario, you might be close to this Doc that my GI wants me to see at the Mayo Clinic in Minnesota. http://www.mayoclinic.org/bio/10640339.html (Though I know that Ontario is big and the main population centers are far away from Minnesota)

AlliRuns said:
Surgery didn't work for me either, had surgery twice, one of my fistulas is 7 years old. Have been on so much cipro and flagyl that I now get sick thinking about it and those don't really work for me either. Wish I knew the answers.
Click to expand...
 
AaronMSB said:
Hi Alli,

What types of surgery did you try? Have you investigated fistula plugs or fabrin glue at all?

Since you are in Ontario, you might be close to this Doc that my GI wants me to see at the Mayo Clinic in Minnesota. http://www.mayoclinic.org/bio/10640339.html (Though I know that Ontario is big and the main population centers are far away from Minnesota)
Click to expand...

I had them laid open the first time and second time I had setons placed, my surgeon removed the setons, probably prematurely but at the time I was not diagnosed, so it was though the fistulas would just close up. I'm not close to Minnesota at all, closer to Syracuse.

My GI wants to try Remicade, but I don't have approval from insurance, so I'm guessing I will have another surgical consult soon. See my GI on Friday.
 
Aaron...
I started Humira 2 years ago this month..about a 2 months after I started Humira I was feeling great!!
 
That's awesome, Mary!

Maybe Humira would work for me also? I was on Remicade for a long time and as far as I know they are pretty similar drugs. It helped a bit (less frequent infections) but my fistula never healed entirely. I'll ask my doc if he thinks we might have better luck with Humira.

Mary:) said:
Aaron...
I started Humira 2 years ago this month..about a 2 months after I started Humira I was feeling great!!
Click to expand...
 
I've been lucky enough to have 3 fistulas on my rear end for years but normally they became in flamed swell up. I'd go get flagyl see if that helped normally afew weeks on it would clear them up to the point of lumpy scar tissue, if not have it laced and packed. Right now I'm counting my blessings that I haven't had to need anything else done.

Humira is supposed to be the ticket to healing them, and my doctors all want to see me on it for them. Good luck!
 
Hey All,

Just as an update, my surgeon recommended a double fistulotomy which my GI was not to pleased with. In the search for answers I sent my records to a Doc at the Mayo Clinic in Minnesota. Hopefully he'll take my case and I will have more for you all in the not-to-distant future.

Aaron
 
Another update for y'all. I visited the Mayo Clinic in Rochester, MN in March. Its an amazing place to get medical treatment. I accomplished in 4 days what would have taken 4 months in Austin.

Consult with Edward Loftus Jr., two rounds of bloodwork, colonoscopy, oncology consult, surgical consult, two setons placed and one peroxide treatment of a third fistula. They were able to say with all but 100% certainty that Remicade and/or 6mp caused my Lymphoma. They out me on methotrexate,mgavr me their card and sent me on my way.

Been on methotrexate (MTX) for 3 months now. Should be kicking in. My fistulas are still aggravating, but they are starting to dry out. Some openings are closing and others are opening up along the seton path. Hoping for the best here but concerned that either the MTX won't work or that my liver won't be able to take it. I do like that I can inject myself in the privacy of my home and don't have to spend 3.5 hrs in an infusion clinic. That part feels good.

Any of you have experience with Methotrexate?

Aaron
 
Had Humira 2yrs didn't seem to help! Remicade 1 treatment and ins sent me a bill for $1600 so that's over! On 6mp for 2yrs now thefell the same. Have 2 bad fistuals killing me Surgeon doesn't want to do sugery says it will might me weaker in that area? What that means I don't know? So good Luck hate this freaking pain!!!!!!!!!!!!!!:(:(:(
 
Met with my GI in Austin today to talk to him about this 3rd fistula that just opened up. He had nothing useful to say other than to keep at the antibiotics (7 months straight now) and to call my experts at the Mayo Clinic. I'll follow up with them this week.

Doc also said that we may be forced back on to TNF inhibitors again but I personally really want to avoid those and keep my chances of recurrent cancer as low as possible.

Anyone hear of any interesting trials lately?
 
I've had my fistula for about 9 years now. It drains externally out the inside of my butt cheek, not too far from my anus. (Nice to meet you too!)

Not sure what the tract is exactly, but usually fluid or blood, not stool. Remicade did wonders for it. Kept it closed forever. Went off for three years to have a couple of miscarriages and finally a baby, and then a flare brought it roaring back again.

Trying Humira now, and three months in, it ain't doing much. Also on cipro and Flagyl, which I was on for years when I was first diagnosed.

Waiting for surgical consult, which will probably take a while, though I am reluctant to go that route.

My understanding is that Remicade is the best of the anti-TNFs for fistula healing. I'm done with it because of infusion reaction. I can totally see why you would want to avoid them, though my GI thinks the lymphomas are coming more from 6mp and imuran than the anti-TNFs.

Glad you had some luck in Minnesota. Hope the are able to continue to help you.
 
Last edited:
Thanks for the feedback, lgpcarter. I just sent a few messages to my Mayo Clinic docs about this. Hopefully they'll get back to me quickly. When I spoke to my GI in Austin we had the same conversation that we've had over and over again. "Perianal disease is just super tough, there's no rhyme or reason to it and no real way to predict when or how it'll be a problem, surgery is too aggressive, keep taking the antibiotics and hope for the best."

Blah blah blah. Wit's end...all that mumbo jumbo. Feeling pretty helpless about it all.
 
Got my Mayo Clinic recommended pelvic MRI today and sending it fedex to my doc in Rochester for arrival tomorrow morning. Since three days ago when I wrote the above, I developed yet another draining hole in my ass. Crossing my fingers for answers tomorrow.
 
I have a seton still in, and also am on Remicade, and flagyl. Now my GI put me also on Amitriptyline. Anyone else on Amitriptyline? Does it help? I was on Humira, but it stopped working. At first it worked great, but then just stopped. Remicade, is okay but not working great. What a terrible disease Crohn's is. Just eats away at you....kills you slowly. Someone has to come up with a cure for this, or better treatment.
 
Amitriptyline is an antidepressant and some doctors think that these drugs can help with IBD and similar conditions. It doesn't looks like there have been any formal studies on it, but the National Institute of health has this on its site.

"Based on our findings, it is not possible to state that antidepressants have an impact on the course of inflammatory bowel disease. While they appeared to have a positive effect in 16 patients in five studies, because studies were neither randomised nor blinded, it can still be argued that the outcome may be due to chance. This systematic review therefore provides insufficient evidence to conclude that antidepressants are efficacious for the treatment of psychological co-morbidities or somatic complaints, which do not respond to conventional therapy in IBD patients. However, the data certainly do not rule out efficacy, and warrant further properly designed randomised controlled trials." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1599716/

Also, here's another forum on this site that talks about anitdepressants and Crohn's good luck.

barkbbdog2 said:
I have a seton still in, and also am on Remicade, and flagyl. Now my GI put me also on Amitriptyline. Anyone else on Amitriptyline? Does it help? I was on Humira, but it stopped working. At first it worked great, but then just stopped. Remicade, is okay but not working great. What a terrible disease Crohn's is. Just eats away at you....kills you slowly. Someone has to come up with a cure for this, or better treatment.
Click to expand...
 
Thanks for asking, lpgcarter. Upshot was that they think that the new fistulas are actually from an old abscess/tract that just found a new path of least resistance out of my body. This was a tract that they actually couldn't find the internal opening for when the were putting my setons in last March. I didn't know that the two setons they put on we're both for my old fistula and it's many tracts and not for the (then) new one.

Anyway, the gist of all of this is that there's nothing that they can do for me right now other than what we're already doing right now. If this new fistula becomes an abscess again, then we can have another surgical intervention. Basically they told me that unless things get worse (silly me, I thought they were getting worse) I'm just supposed to cross my fingers and hope that this unpredictable disease gets better.

Bigtruck. I haven't found any stem cell treatment outside of clinical trials. I'm not adverse to clinical trials, but so far I haven't found any that will take me with my history of cancer. I have to wait through 4 more years of remission first. I'll look through that forum though and see what I can find. Thanks for the suggestion.
 
My fistula experience so far. Basically I'm in the same boat as many here.

I Developed an abscess this January (lovely way to start off the new year!) and perianal fistula diagnosed. Had abscess drained in ER. Tried Cipro and flagyl on two different occasions with no signs of improvement. Had a seton placed for continued drainage. It doesn't drain as much these days and the pain has subsided nearly completely, but I still have my moments of irritation. It's more just an annoyance than anything at this point. I've been taking Humira, one pen every 14 days since March this year. I honestly don't feel as if the Humira is reducing inflammation / abscess or healing the fistula.

I'm still weighing my surgical options of "unroofing" (fistulotomy?) or to wait for the possibility of getting better insurance coverage that will pay for Remicade. I'm pretty concerned about reactions and side effects though. My CRS and I have what seems like the same conversation every few months since I've been prolonging surgery because I feel its outcomes are too unpredictable. This last visit he mentioned only unroofing the fistula tract up to the sphincter muscle as to avoid incontinence issues. Previous visits he never mentioned such accommodations. I hope he's not just coaxing me into going under the knife.

None of the options seem enticing. I guess the negative risk factors go right along side the hopes for success. I've been trying to take up a low inflammation diet by reducing Omega 6's and increasing Omega 3s, but I think that is a long shot in terms of its association with putting Crohn's in remission, but it's really all I can do within my sphere of influence. Regardless, I figure it couldn't hurt to eat healthier.

Wish I had some advice, but nothing seems to be working for me either. Except this annoying red straw running through my bum cheek.
 
Hello long time Crohnie. I was diagnosed in 97 after I had a anal fissure, Had surgery and never got better. Lots of vomiting and D finally got diagnosed. Maybe a year or so later I developed a periananl fistula. Then over the next few years I had 3 or 4 abscesses and fistulas. Tried lots of anti biotics, fistulectomy nothing worked. Then I tried the newly approved Remicade I think it was 6 months old at that time did the 3 infusions and Fistulas healde greatly. Then they came back and I was put on Remicade every 8 weeks. Fistulas would come back every once in a while but Remicade plus Cipro and Flaygl usually healed them. Was in remission for about 8 years on Remicade about 10 years total.
Then about 4 years ago Remicade quit working. I started Humira, no relief peri anal abbcesses returned. In dec of 2011 I had a fistulectomy, drained abbcess. Still lots of pain from fistula. Unable to work got fired blah. March of 2012 I had to have emergency surgery for a tear in small intestines caused by a fistula. I then decided to have a temporary Colostomy. Fistulas healed Crohns symptoms mostly subsided. Dec reconnect and not even a week later the nasty fistula came back. Im having a no cutting Seton put in place early September. Surgeon said most other fistula surgeries probably wouldnt work. Also when they reconnected my colon they had to remove 6 inches of rectum cause of all the wholes. Said it looked like swiss cheese, sorry i know its gross. Only other option would be permanent colostomy. Last scope didnt show active Crohns but I still have super D, im on 2 different meds just for the D. Limotol and Questran plus hydro, Humira, 6mp, and a hand full of vitamins and supplemants. I also drink Ensure and Gatorade. Im still tired all the time, im legally disabled because of all of this. Im hoping to go back to school and eventually work from home. From oct 11 through most of 2012 I was on Cipro Flagyll combo and it did nothing, also Humira has done nothing for my Fistulas. Anyone have Fistula relief on Cimzia ?

Has anyone had any luck with the fibren glue pug surgery or the flap ??
 
aruschmann said:
Has anyone had any luck with the fibren glue pug surgery or the flap ??
Click to expand...

I haven't tried it, but everyone I talk to (including the corectal surgeon at the Mayo Clinic) says that the glue and flap don't really work on Crohn's patients because inflammation can come back at any time. Fibrin glue has a success rate of a little over 30% for Crohn's patients (see source below). It all depends on the complexity of the fistula, and even then there doesn't seem to be any guarantees that it'll work. Still 1/3 of patients see relief so maybe it's worth trying? If you do, please let us know your experience.

http://www.ncbi.nlm.nih.gov/pubmed/20178792
 
Everyone seems to have these fistulas (fistuli?) around their bum!
Want to find out peoples' experience with entercutaneous fistulas but it seems they are not very common.

I currently have a fistula connected to my ileum that drains out of my lower abdomen. Doc wanted me to start Remicade, but my test for tuberculosis came back positive so I have to take a 3 month course of antibiotics for the TB before I can think about starting Remicade. What determines the chances of a fistula being healed through meds alone? (output amount? length of tract??)
 
Yea my colo rectal surgeon dosent like to do anything other than setons for ibd patients. Said the same about 30% sucess in IBD patients. I had a non cutting seton surgery last week. Still quite sore and lots of drainage. Dejabu I had great luck with Remicade healing my fistulas and putting my Crohns in remission for over 9 years . Then Remicade quit working and ive had active peri anal fistulas for 4 years. The only other thing that has worked was a temporary colostomy (8 months) . As soon as I had the reversal Fistulas came back within 1 week. Good luck with these horrible things
 
Thanks to everyone who's contributed to this thread!

Seems like folks are pretty much in 3 categories.

1. Fistula cleared up using TNF Inhibitors like Humira or Remicade.
2. Fistula cleared up using TNF Inhibitors but came back eventually.
3. Nothing has worked and doctors are contemplating surgery or other interventions.

I've been doing a lot of research on Adipose Derived Stem Cell Treatment. (Thanks to bigtruck). It looks very promising, clearing up 80% of Crohn's Fistula, pretty much the best success rate so far. It doesn't seem to be available (unless you're as a private beauty clinic in California looking to use it purely for vanity) but there are some studies coming through.

Video
http://www.youtube.com/watch?v=_2-BqTEtXVs&feature=youtu.be

PubMed
http://www.ncbi.nlm.nih.gov/pubmed/23006344

Here's some more research I found out of Spain.
http://www.ncbi.nlm.nih.gov/pubmed?term=Garcia-Olmo D[Author]&cauthor=true&cauthor_uid=18694359

I've tried to find some clinical studies here in the US for this stuff but none of them will take me due to my history of Lymphoma. I would urge each of you (In categories 2 and 3 above) to check out clinicaltrials.gov and see if there's anything you might be eligible for. In the meantime, I'm going to be lobbying folks at the Mayo Clinic and here in Austin to see if we can at least get the medical community talking about Adipose Derived Stem Cell Treatment here in the US.
 
bigtruck said:
My consultant tells me somewhere in Madrid is leading the way in this treatment.
Click to expand...

Your consultant, eh? Sounds fancy!

Yes, the researchers are:
Garcia-Olmo D, Garcia-Arranz M, Herreros D.
Hospital Universitario La Paz, Servicio de Cirugía General, Paseo de la Castellana 261, 28046 Madrid, Spain. [email protected]

Maybe I'll send them an email real quick and see if they know anyone in the states working on this.
 
I emailed the Dr. in Spain and he replied within a few hours. I asked about a timeline for their trials and to see when Adiposed Derived Stem Cell Treatment may be available for us. Here's his response.

"Indeed we are working in this line! Results are encouraging and, in some way, successfully. Nevertheless we need more data prior to a disseminated use. Now we are involved in five clinical trials that will be finished at the end of 2014. I'm sending our last paper about the use of cells in Crohn's fistula. I hope you can improve in the near future your quality of life by the new options!"

So he didn't make any promises, but the paper seems promising.

I also spoke the Mayo Clinic about this new treatment and they said that they are starting a clinical trial soon on it. I'm going to try to get in, but most likely they won't let me in because of my history of lymphoma.
 
Hello. I am in a similar boat... been suffering from a HORRIBLE fistula for years now and I'm determined to do what I can to get rid of it. I have a complex horseshoe fistula so fistulotomy is not an option. I have lost track of how many times I have been in the OR for seton placement and incision and drainage. I've been on Remicade on the highest dosage for over 3 years now and on and off of cipro and flagyl but nothing seems to work to heal this sucker up.

Finally this summer my GI and surgeon decided I should try an ileostomy to allow my fistula rest. I have to say that although it hasn't healed up completely, it is so much better and I don't dread the idea of going to the bathroom and irritating the fistula. I have adjusted well to my ileostomy and prefer this so much over the pain from my fistula. About a week ago (2.5 months after my ileostomy surgery) I had the flap procedure. I am on antibiotics and have a lot of swelling but it looks like two sides of my fistula have been shut down. I have almost no drainage but it is still too early to determine if this is a success.

I feel like my ileostomy has really helped reduce the painful symptoms of my fistula and I pray for the day that I can be rid of the fistula. I definitely prefer a life living with my ileostomy over the chronic pain and constant drainage of my fistula. I am also hoping for success with stem cells in the future and I hope all of us fistula sufferers get relief. Good luck!
 
DGG, how are things looking now? Did the flap procedure heal well? Does your doctor think that the the ileostomy is something that could be reversed at some point? Please keep me updated. I'd love to hear how it works out.

Here's a quick update for you folks on where I'm at. I tried to get into the stem cell trial at the Mayo Clinic but they wouldn't take me due to my history of lymphoma. I still have about 5 fistula external openings that stem from 2-3 internal openings. The methotrexate has had a chance to kick. It doesn't seem to be doing a whole lot other than making me extremely fatigued and foggy headed. The doctor seems to think it's helping though, because I'm only having three bowel movements a day and not 10.

Anyhow, we seem to be in a holding pattern and I'm feeling pretty whiney about it. Thanks for listening and proving me a place to vent. Been getting pretty depressed lately and not sure if it's side effects of just legitimate sadness. Passing the 10 year mark on my diagnosis. Sheesh, would have thought I'd see more progress...
 
Thanks for the update, Aaron. I am in a bit of a holding pattern as well and it does indeed suck.

Probably not helpful, but I don't think that depression is one of the side effects of methotrexate.

Laura
 
Im in the same boat myself, having good days and bad days. Ive heard that our intestines take serotonin out of the brain and that can leave you feeling depressed from the lack of serotonin in the brain. I also have my down days but I try to remain positive and stay thankfull to be out of the hospital
 
Another similar story here. Crohns patient for over 30 years and fistulas for over 10. Experimented with Remicade, once, flared up within days. 6MP for many of my younger years only to have it cause portal tension in the liver.

About 5 years ago, my GI recommended Humira and that was fabulous. It didn't close my fistulas, but it gave me energy. I was able to tolerate the pain from the bottom.

My story though differs a little when I was diagnosed with adenocarcinoma in my fistulas last year, one year ago to the day. I of course got a second opinion and biopsy, results were the same. Both surgeons recommended a permanent colostomy and removal of the cancer in the anus. This required the rectum to go too. I had 5 weeks between the stoma surgery and the removal of the rest. During that time, my fistulas reduced in size, and the pain was gone.

Neither of my surgeons, nor the GI or Oncologist could really say what caused it, though they all believed it was from years of scar tissue and Humira. I've scoured the web to find a similar story, but have not found one.

I guess I was the unlucky one (then). Getting cancer and all. I really had no choice about getting a bag. In an odd way, I wish I got a bag earlier, minus the C. Living with fistulas is the pits. That's no more and so is the cancer. Found out last week.

Best of luck to you.
 
Hi Aaron and others suffering from fistulas. It's been 6 weeks since my flap procedure (and I had surgery to get my ileostomy 2 months before the flap) and so far my bottom is feeling so much better. My setons were removed when I had the flap put in and as of now I'm feeling great. I still get a small amount of drainage but it's hardly noticeable. I am still on flagyl and my surgeon suggests I stay on it for at least a few more weeks. My surgeon hasn't yet used a scope to look inside to see how the flap looks since she doesn't want to disrupt anything. My ileostomy is a loop ileostomy and the plan was that if the flap works it can be reversed. I am also on remicade at the highest level, every 6 weeks.

I have to say that I am in no rush to have my ileostomy reversed. I have adjusted really well to having the bag and since I'm feeling so well I don't want to risk having all of the fistula issues come back. In my case I feel like having my ileostomy really helps with my rectal issues and I would rather have it than go back to having constant pain and discomfort.

As for feeling depressed, don't know about the link with medicine but I can say that when I first developed my fistula I was in the most horrendous pain and I stopped sleeping because of it. I didn't know I had Crohn's then and I was also pregnant so I couldn't get any sleep meds or strong antibiotics prescribed. Long story short... I ended up clinically depressed and went on antidepressants which helped. I am a very positive person and had never experienced any issues with depression before this and I think having chronic pain and discomfort can lead to other issues. It helps to know you're not alone and I still pray that one day someone will come up with a cure for fistulas.
 
Thanks for sharing everyone.
Any updates from anyone? It's been a long time since the last post but I figure I may a well share my story to:

I was diagnosed with UC at 18, struggled with it for a few years, in and out of remission, tried a lot of meds including pentasa, imuran, pred and a few doses of infliximab/remicade but at about 21 "opted" for a colectomy and reversal j-pouch. Pouch was great for 5+ years but then about 18 months ago developed and abscess that had to be drained and it was then determined as perianal fistulae, 1 involving the urethra (I'm a guy, it seems a less common occurrence in males) which lead to having a catheter for about 8 months (not fun..). 1 seton put in place also. The are was seriously sore for a few months, it was a while before I could sit properly again.

For the 1st period of treatment it was mainly antibiotics (flagyl, cipro) but the fistula didn't close at all. At this stage I had never been diagnosed with Crohn's so I went to another gastro to get another opinion, (surgeons only really think surgical solutions).

Did some bloods and my CRP level was high, sign of inflammation so I started Humira and imuran and (also rifaxamin for a period), I could see the area gradually getting better very soon after starting and after a few months the fistula involving the urethra closed over, (I still had the seton in the other one) CRP level came down and MRIs showed up good so bye bye catheter, hallelujah.

All good for about 4 months but then the same fistula hit back, swelled up in that area and eventually forced through the skin. Given it's tract this meant that when I'd pee some pee would come through the fistula, not cool. Tried upping the Humira to weekly and upping the imuran dose but no joy. This exit point on the skin has healed over but now the tract is internal going from the the rectum/pouch linking up with the urethra. This means I sometimes get gas and occasionally worse coming from places where it shouldn't! But I actually feel fine and quite healthy and no real pain, which is great but also makes it harder to understand this crazy disease.

Recently had bloods done again and CRP is back up again at 21. My Gastro suggested I give Stelara a try. I've only had the 1st 2 loading doses but no miracle yet, I'm not that optimistic about it to be honest. I guess the next step might be to consider infliximab/remicade but since I already had a few doses of that years ago before the fistula saga it might not be a wise option, then I guess I might have to consider the ileostomy option. I had one for 9 months before and I know I'll manage just fine with it but had just hoped that would be a choice that I would have to take a bit later in life.

I'll let you know how it goes for me.
 
Hello,

I had surgery to get rid of my fistula connected from my ileum to my lower abdomen as the infliximab/aza combo did not work. I had the surgery March last year and it involved a bowel resection.

It has been almost a year since the surgery and I have never felt better. I have returned to university to finish my degree having had to drop out, and I am this moment very happy.

So for me surgery was the only thing that seemed to work.
 
Okay, folks, this convo has come back to life so I'm going to give you an update.

The depression is gone! My hunch now was that it was stress related. I was getting married, buying a house, do WAY too much work, not having fun, and Crohn'sey on top of it. Bad mixture. Glad it's all cleared up.

As for the perianal disease. It PERSISTS!

My two setons are still there and they aggravate me (shift around so that the knot is going into the open wound) on an almost daily basis. I have been off the antibiotics for the most part for about 7 months now (though I did go back on for 10 days when I got an infection about 2 months ago). So the infections aren't continuous like they were but still come and go.

The methotrexate keeps my flares pretty well under control. Still can't eat what I want, but hey, who can? I still get tired the day after I do my injections, but two cups of black coffee and some cardio seem to do the trick.

So, my fistula isn't fixed. Serous fluid, blood and fecal matter coming out of it on a pretty regular basis. It itches regularly (like I want to shove a bottle brush up my rectum and start scrubbing) and everyone now and then I get some anal spasms.

But it's much better than it was. heh.

Anyway, I'm still on a quest to fix this thing, but right now it's tolerable. My doc thinks that's the best we can hope for. I disagree with him, so I'm going to keep looking for answers.

Thank you to everyone for your help and support so far. KEEP IT UP!
 
AaronMSB said:
Hi All,

I've been a long-time lurker on Crohn's forums but this is my first time posting to one. I am determined to fix my fistula. Short of fast forwarding 10 years when stem cell therapy had cured this disease, I want to know what you have done and if it worked. What treatments are you looking into? I'll start.

I was diagnosed with Crohn's in 2003 and put on but have symptoms dating back to 1997. My first abscess appeared in 2003. Entocort, 6MP, Asacol, Cipro and Flagyl. We opened up the tract, twice (essentially fistulizing it) and I packed it with gauze strips. That didn't work so I used a cutting-seton. By 2005 it had finally dried up and was not active for about 1.5 years. However, it never healed and would bleed from time to time. Then it formed another abscess and a couple of other fistula tracts opened up. I came out of Crohn's remissions at that time also. I was put on Entocort, 6mp, Flagyl, Cipro, pentasa (which was terrible because the little balls of it got into my fistula), and eventually Remicade.

Things started getting better, but very slowly. My fistula would oscillated between active and in active but I would have periods of several months where I felt great. Then at the end of last year I was diagnosed with Hodgkin's Lymphoma. I got chemo (which does wonders for Crohn's by the way) but my fistulas got very angry when I wound up in the hospital for having no immune system. I went off all the other drugs.

Fast forward to today. I'm 6 months in remission for my lymphoma but my fistula become active about one every 6 weeks. I get an infection, go on cipro and flagyl for two weeks. Wait two weeks, get an infection, go back on the antibiotics.

Right now I'm looking into having another seton put in, participating in a clinical trial for stem cell research, visiting the Mayo Clinic in Minnesota and visiting the Cleveland Clinic in Ohio to find some relief.

I would love to hear any advice. Have you had a fistula for 9 years that you want gone? Let's work together, maybe we can make it happen.

Thanks,
Aaron
Click to expand...
First of how the hell did you get stem cell therapy? I go to Yale for 15 years and all the stuff you have had I had stem cells WOW! Want to try! They don't do it asked and not rich enough to find somewhere to try it. Was on Remicade but had to stop co/pays where any where from $500 to $3800. Have Blue Cross . When I was first found out I had Crohn"s they want me to go to Leahy in Mass and Cleveland to see Fazio for second opinions but Yale has done all of my work. Just had seton put in last Monday still draining down my back side hoping it will help see Dr next Tuesday. That was in one I still have to others. Let you know and good luck! Wow stem cells I can i sign up for that trail? Is cause you had cancer. They got me before first Yale look at me never exam me or anything he man you have 6 months to live if you don't rip out colon now! Had bad 2 months and J-pouch for 14 yrs but have never got better either. Sorry for the run around lost my head with stem cells! Not crying I'm 50 years old work and active and just sick of being sick!!!!!!!!!!!!::thumright:
 
Irish86 said:
First of how the hell did you get stem cell therapy? I go to Yale for 15 years and all the stuff you have had I had stem cells WOW! Want to try! They don't do it asked and not rich enough to find somewhere to try it. Was on Remicade but had to stop co/pays where any where from $500 to $3800. Have Blue Cross . When I was first found out I had Crohn"s they want me to go to Leahy in Mass and Cleveland to see Fazio for second opinions but Yale has done all of my work. Just had seton put in last Monday still draining down my back side hoping it will help see Dr next Tuesday. That was in one I still have to others. Let you know and good luck! Wow stem cells I can i sign up for that trail? Is cause you had cancer. They got me before first Yale look at me never exam me or anything he man you have 6 months to live if you don't rip out colon now! Had bad 2 months and J-pouch for 14 yrs but have never got better either. Sorry for the run around lost my head with stem cells! Not crying I'm 50 years old work and active and just sick of being sick!!!!!!!!!!!!::thumright:
Click to expand...


I was NOT able to participate in the stem cell trials. The explanation I received back from them was that because I have a history of Lymphoma, no trials will accept me. The treatment for Lymphoma, plus just having cancer in the past, increases my chance of getting cancer again. Because of that increased chance, they won't let me participate in the studies because they won't know if I got cancer from the stem cells or from all the other reasons.
 
That Sucks never had cancer buy have lost my immune system . Just looking for help like everyone else!!!!!!!!! Pills diets and such cost to much so try to eat the best I can and otherwise. Going on Humira again because if I go back on remicade my body could shut down.Oh we'llLife!
 
I just wanted to let you all know that please look into ksharsutra treatment for fistula. I was 20 when I had my fistula after an abscess n had the worst year of my life. Kshar sutra helped me and cured it completely. I m 24 now and hadn't had fistula for the past two e year. My fistula was 2 cm and so it took only a month for the trestment to be complete.
 
Preeti! So glad something worked for you. Started a little research on kshar sutra and it looks to me like there are several types. Can you please describe your treatment in a little more detail?

Preeti said:
I just wanted to let you all know that please look into ksharsutra treatment for fistula. I was 20 when I had my fistula after an abscess n had the worst year of my life. Kshar sutra helped me and cured it completely. I m 24 now and hadn't had fistula for the past two e year. My fistula was 2 cm and so it took only a month for the trestment to be complete.
Click to expand...
 
Hi...I had had a surgery for abscess which had healed and later after 6 months it started blowing up again which later developed into an fistula.. My doctor recommended me to a surgeon who insisted on flap surgery.. But after reading about it and knowing that there is always a chance of it coming back I didn't go for it.. I suffered for a whole year and during this time I came across another doctor ..she was a dermatologist who recommended me to a new doctor this procedure.. I was very scared but made it a point to visit the new doctor.. I m so glad I did..it was a very small surgery.. The doctor inserted a medicated thread into the fistula and tied it..like a seton..it was Medicate and he would call me every week to tighten it..I had the surgery in the morning and went home in the evening ..resumed college in 3 days.. and it involved no cuts , only a small scrap of skin that had dried up over the fistula was peeled..the doctor sent that skin for analysis to check for other infections and luckily I had none.. The reports came a week after this procedure.. The medicated seton was tightened every week.. It cut through the skin as it tightened and the medicine healed the wound in the process as it drained any pus capsules.. I was recommended a fully vegetarian diet while the treatment was on going..I was also asked to take a sitz bath in warm water and after that an oil was given which was Medicated that had to be applied to my fistula opening..as I said my fistula was 2 cm it took me 4 times to get the seton to cut through and come off on its own.. I was asked to take walks everyday for a minimum of 10 minutes so that any pus could easily drain.. There were patients whom I got to know who had fistula a that were 10-12 cm lon g and it would take them 3-4 months minimum.. But the process is easy as compared to other surgeries as the chances of re occurrence is nearly nil.. I was also recommended an Ayurvedic tablet that had to be taken twice a day..I don't remember the name of the oil and tablets but I ll look through my prescriptions and let you know so you can research more..
 
also the change of thread is a 5 minutes procedure.. The doctor opens the knot of the old thread and ties the new thread to it and pulls the old thread out and in the process it is replaced by the new thread.. He then cut the knot and tied the new thread tighter than before..I was also given an option to take pain meds after thread change which I didn't as the pain would usually go away in a few hours...I highly recommend this to all you people who suffer ..it is much safer easier to manage and effective..I feel like my dermatologist was my angel in disguise who sent me to this kshar sutra treatment..
 
I've had fistulas over the years with a couple of surgeries to allow them to drain. I didn't know that the surgery would leave my sphincter basically shot and now unless the stool is quite dry I have a lot of incontinence. It's really tough to have this and go to work (especially as a teacher!).

The fistulas have not been a problem at all since I went on Remicade, but I would caution anyone about surgery since that has made my life a lot tougher. Ask the surgeon about potential incontinence afterwards.
 
Hey ..the chances of inconsistency is extremely low in case of longer and severe fistula a and in case of simpler ones like mine it's nil..I urge every one to look into it..it has healed so many people..you all don't need to suffer again and again as with regular surgeries..kshar sutra dates back several centuries and it's the most effective
 
I have never been offered Humira or Remicade. The first thing i had was a rectal ulcer. This started up 2 weeks after a vaginal hysterectomy not sure if it was related to that apparently not. By the time anyone listened to me enough to look it was the size of an egg. Subsequently, a fistula formed in 2011 and I had a "lift" procedure as it was through my sphincter. This procedure tries to get it to collapse on either side. Fast forward to 2014 the same fistula has returned with a vengeance. New doctor too. I have had Seton's in since September. From September to October i created a new fistula below the other one. So back to the OR for Seton #3. In January they did an advancement flap but i am in so much pain and pressure daily its driving me insane. So they are sending me back to the original surgeon who did the lift procedure as I am not having any luck and I am in pain (they look at you like you are just a pill seeker and I am so not). I just want to know am i ever not gonna be in pain and if not i want a colostomy. I cannot take this every day of my life it has wore me down emotionally and physically. I drain enough ooze to fill a diaper every day. How about culturing this stuff to see what antibiotic will work. I am allergic to Cipro and Flagyl dont work.

Now there is a track through the flap and the lower fistula has extended...ugh
 
I did have a cutting seton (like a non-medicated version of what you're talking about) back in 2003. I actually worked pretty well and I wasn't bothered by the fistula for quite some time. I just came back and wasn't a permanent fix. I've since heard from doctors, including the ones at the Mayo clinic that generally speaking people don't do cutting setons any more because they are no more effective than the non-cutting ones and have greater potential side effects. I'm glad that you didn't have any bad side effect, Preeti.

Preeti said:
also the change of thread is a 5 minutes procedure.. The doctor opens the knot of the old thread and ties the new thread to it and pulls the old thread out and in the process it is replaced by the new thread.. He then cut the knot and tied the new thread tighter than before..I was also given an option to take pain meds after thread change which I didn't as the pain would usually go away in a few hours...I highly recommend this to all you people who suffer ..it is much safer easier to manage and effective..I feel like my dermatologist was my angel in disguise who sent me to this kshar sutra treatment..
Click to expand...
 
Wow, Chrissyinct. Thanks for sharing with us. I'm sorry that you are in so much pain. I, for one, actually know what kind of pain you're in. If your doctor doesn't believe you, time to get a new doctor. It's amazing to me...the multitude of responses to perianal disease.

Is your fistula caused by Crohn's? If so, I'm really shocked that no one has offered you TNF-Inhibitors (like Remicade). Another reason you might need a new doctor.

I really wish you the best of luck. Please keep me (us) in the loop on how you're doing.

chrissyinct said:
I have never been offered Humira or Remicade. The first thing i had was a rectal ulcer. This started up 2 weeks after a vaginal hysterectomy not sure if it was related to that apparently not. By the time anyone listened to me enough to look it was the size of an egg. Subsequently, a fistula formed in 2011 and I had a "lift" procedure as it was through my sphincter. This procedure tries to get it to collapse on either side. Fast forward to 2014 the same fistula has returned with a vengeance. New doctor too. I have had Seton's in since September. From September to October i created a new fistula below the other one. So back to the OR for Seton #3. In January they did an advancement flap but i am in so much pain and pressure daily its driving me insane. So they are sending me back to the original surgeon who did the lift procedure as I am not having any luck and I am in pain (they look at you like you are just a pill seeker and I am so not). I just want to know am i ever not gonna be in pain and if not i want a colostomy. I cannot take this every day of my life it has wore me down emotionally and physically. I drain enough ooze to fill a diaper every day. How about culturing this stuff to see what antibiotic will work. I am allergic to Cipro and Flagyl dont work.

Now there is a track through the flap and the lower fistula has extended...ugh
Click to expand...
 
I have tried Remicade, Humira, etc and have spent most of the last year in pain. I've finally found relief through a treatment called LDA, low dose immunotherapy. I can give more info if you want! I know, like everything it may not work for everyone, but it's kind of been a little miracle for me.
 
Yes that is it! My fistula was so bad... I had kind of given up on everything and really didn't believe this was going to work. I was ready for an ileostomy. This treatment is more on the "natural" end of things, but that doesn't mean it's not super powerful. I had done my fair share of natural things (SCD diet, acupuncture, etc.) but nothing has made as big of a difference as this. It's sort of hard to find doctors who will do it but if you google LDA doctors you should find a directory. And again, I know how frustrating it is when people tout something as "the cure." It may or may not be. But I think it does make a lot of sense, had a great success rate, and can't really do much harm.
 
@polar bear I noticed a difference the day after the shots. Within two days, I had almost no drainage. But then for the next three weeks it was a little bit of a roller coaster. Some days would be great and then some days I would basically feel like I was flaring again. This is apparently common and good and means it's working. Once I hit the three week mark, I was back to where I was when Remicade was working (I eevntually developed antibodies to Remicade but it almost closed the fistula while it worked.)
 
And more info:

I still would consider myself to know very little about how it works but this is my basic understanding. LDA shots are a combination of tiny doses of lots of different antigens-- they can be airborne allergens, foods, bacterias, yeasts-- each shot is tailored to your specific disease and whatever your specific immune system may be reacting to. The antigens are mixed with an enzyme that binds to your T-cells and basically resets them to stop over reacting. I personally receive a shot for airborne allergens, a shot for food intolerances, a shot for yeast, and a Crohns/colitis shot. The idea is to try and cover any of the many things my body may be reacting to.

You get the shots every seven weeks (apparently this is the life cycle of T-cells?) you have to be on a pretty strict regimine and diet durig the days surrounding the shots. The shots can cause you to flare off and on for the three weeks after due to stimulating your immune system. But, it has never been found to cause any real, serious side effects. So that's pretty awesome. Dr Shrader and Dr Vincent are the main leaders in this treatment in the US (it has been done in Europe for many years,) but there are doctors all over doing it now. You can find them in an online directory.
 
I don't have a cure for a fistula, but virgin coconut oil has reduced my symptoms to almost nothing.

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.
 
I've asked my doctor to look into this before I try it. Basically if he tells me it won't hurt me, I'll give it a shot.

James80 said:
I don't have a cure for a fistula, but virgin coconut oil has reduced my symptoms to almost nothing.

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.
Click to expand...
 
Hi Everyone,

Fast forward to the bottom if you just want some advice.

Here's an update on my case. Will do a brief review before jumping into the new stuff.

I'm a 32-year old male diagnosed with Crohn's of the terminal illium and perianal disease in 2003. Had one serious fistula that that eventually became tolerable and controlled under Remicade and 6-mp. This was after trying asacol, pentasa, steroids, and probably a few things I'm forgetting. Then, in 2011, the Remicade/6-mp combo gave me Hodgkin's Lymphoma in my groin. 6 months of chemo every other week and one hospital stay/blood transfusion later, cancer was gone and I went on Methotrexate to control my Crohn's.

It controls the bowel symptoms but my perianal fistula got worse. I had my original fistula which had developed several smaller tracts around it and then I had on develop on the other side of my body. Had several setons placed, but each time, things got worse afterward.

Then, due to the chronic inflammation in one of my perianal fistula tracts, I developed squamous cell carcinoma INSIDE one of the fistula tracts. My doctors are all quite stupefied but I'm being treated with 4 months of chemo (once a month) and 34 radiation treatments.

Right now the jury is still out on the perianal disease. I've finished all my radiation and have one more chemo treatment left. There's still too much inflammation to know how my fistula tracts faired the radiation. I have learned a few things though that I think might help some of you heal your fistulas.

1. Silvadene (Silver sulfadiazine) is a topical antibiotic ointment. They give it to burn victims and radiation patients. It's very soothing and I do think it's helping to clear the active infection that I have had since June, 2015. Ask for a tub, not a tub.
2. Hydrocortisone suppositories help to reduce the intense itch that you get with fistulas. They also help to lubricate bowel movements to help them pass the tract more smoothly. I also think that at the suppository melts, it passes into the fistula and limits irritation and cleans out fecal matter.
3. The kind of gauze you put between your cheeks matters. The woven, all gauze sponges work the bet to wick away wetness and also pull out dead flesh to promote healing.

Ask your doctor for all these things. If they say they can't give you the gauze, just tell them that you're a chronically ill patient any they will make tons of money off you. They can afford to give you a whole package of gauze so you know you're getting the right thing. Then you can probably order it on Amazon. That's what I do.
 
AaronMSB said:
I've asked my doctor to look into this before I try it. Basically if he tells me it won't hurt me, I'll give it a shot.
Click to expand...

I never thought I would become one of these people who doesn't necessarily listen to his doctor.

I always told people to just do what the doctor tells you.

I just tried coconut oil on my own, and it has been a godsend. My doctor doesn't think that my lack of flareups has to do with coconut oil. He thinks it's a placebo effect. (I find this attitude a little frustrating).

I can tell you this: when I stop using virgin coconut oil suppositories, I get another flare up (pain, tons of discharge, it hurts to walk). When I put in a coconut oil suppository after every BM, I have 0 pain, and I have minimal pus discharge. I do have some oil discharge though, and use toilet paper to collect it.

I just read your story. It's a nightmare. I wish you the very best in your healing.

Have you considered a fecal transplant for the Crohn's? I'm convinced that this will be the future of treatment for Crohn's, so long as the pharmaceutical industry doesn't destroy its success.

The very best to you!
 
Thanks, James. I would love to hear a little about how that conversation went with your doc. Hearing you say "I never thought I would be one of those people..." actually gives me encouragement. On these forums, without being able to look someone in the eye, you don't know if they are—for lack of a better word—a nut or not. I don't think you're a nut, but coconut oil suppositories has an incling of nuttiness to it.

I've looked into fecal transplant some for sure. Kinda got turned off when I realized that the only way I'd probably be able to do it is to find a donor and make it happen myself. Might revisit once the rest of this mess is over.

Thanks,
Aaron
 
AaronMSB said:
Thanks, James. I would love to hear a little about how that conversation went with your doc. Hearing you say "I never thought I would be one of those people..." actually gives me encouragement. On these forums, without being able to look someone in the eye, you don't know if they are—for lack of a better word—a nut or not. I don't think you're a nut, but coconut oil suppositories has an incling of nuttiness to it.

I've looked into fecal transplant some for sure. Kinda got turned off when I realized that the only way I'd probably be able to do it is to find a donor and make it happen myself. Might revisit once the rest of this mess is over.

Thanks,
Aaron
Click to expand...

I know that coconut oil seems a little out there. Here is my rationale: It is an excellent wound healer, it is an anti bacterial, and an anti fungal. It's something we would ingest anyway, so I didn't see sticking it up my other end as a dangerous thing.

Regarding the fecal transplant, there have been a good number of studies that show that fecal transplants have been improving outcomes in people with c difficile, UC and Crohn's. It makes perfect sense. Patients (who have been taking too many antibiotics) have lost their helpful gut flora. This imbalance allows for other less desirable bacteria to take hold without the others to keep it in check. The body reacts to certain negative strains with inflammation.

I'm not a doctor, and I don't understand most things. But I just feel that doctors/medicine has taken a much too complicated direction with things. Also, the taboo aspect of fecal transplants has prevented people/doctors from taking this route.

I know I can seem a little crazy for thinking this way, but I think that doctors have overcomplicated things/done harm with putting patients on months of antibiotic therapy, without considering the importance of gut flora. We always go to antibiotics, and forget that antibiotics might be causing our gut inflammation.

People in the medical field are starting to understand the importance of this gut bacteria balance. So I think that fecal transplants will be the way to go, despite the extreme nature of the procedure.

All the best, as always. :)
 
Thanks for your kindness in sharing
Where do you apply the silver?
What kind of fistula do you have?
I have had challenge with infection also
It's very frustrating
I am told by a cranial sacral therapist that my lymph drainage is slow and that might be why antibiotics have a tough time reaching the area.

I asked my Dr about a local cream antibiotic such as metro gel (flagyl) but she said it would not get into the bloodstream.
She said I could put hydrogen peroxide in a sitz bath but I get conflicting advice on this. Wound care dr says it may help with infection but will also hinder new cells from forming
I am on my third week after plug surgery.
Can you please post an Amazon link to the guaze you use?

The nurse puts in a script with a medical supply company so I get it shipped to me and insurance covers it... May be worth considering for convenience.

The wound care dr has me use silver alignate pads on the external wounds.

I am glad the coconut oil is helping you James.
I am hopeful it will eventually help close the fistulas.
My very best to both of you, sending thoughts for good health and healing.
 
I have fistulas that run from inside my rectum/lower colon through to external openings on either side of my anus.

I put the silvadene all over the area. Right on the fistula openings. Though I'm using it to treat radiation wounds also so I also put it everywhere I have damaged or missing skin.

I shop around, but these are the current best deal on 12 ply woven gauze sponges. http://www.amazon.com/Medline-Carin...121_img_2?ie=UTF8&refRID=0VBGPPNY9D0ZP1MAKCM7

One thing I forgot to mention is that I'm also using Domeboro astringent to help dry out the radiation wounds. This may also be helping the fistula. It's very soothing also but stings at first.

Hang in there and thank for sharing what you work with. One of these days we'll figure it out. :ybatty:

earthshine said:
Thanks for your kindness in sharing
Where do you apply the silver?
What kind of fistula do you have?
I have had challenge with infection also
It's very frustrating
I am told by a cranial sacral therapist that my lymph drainage is slow and that might be why antibiotics have a tough time reaching the area.

I asked my Dr about a local cream antibiotic such as metro gel (flagyl) but she said it would not get into the bloodstream.
She said I could put hydrogen peroxide in a sitz bath but I get conflicting advice on this. Wound care dr says it may help with infection but will also hinder new cells from forming
I am on my third week after plug surgery.
Can you please post an Amazon link to the guaze you use?

The nurse puts in a script with a medical supply company so I get it shipped to me and insurance covers it... May be worth considering for convenience.

The wound care dr has me use silver alignate pads on the external wounds.

I am glad the coconut oil is helping you James.
I am hopeful it will eventually help close the fistulas.
My very best to both of you, sending thoughts for good health and healing.
Click to expand...
 
As an Amazon Associate we earn from qualifying purchases.
earthshine said:
Thanks for your kindness in sharing
Where do you apply the silver?
What kind of fistula do you have?
I have had challenge with infection also
It's very frustrating
I am told by a cranial sacral therapist that my lymph drainage is slow and that might be why antibiotics have a tough time reaching the area.

I asked my Dr about a local cream antibiotic such as metro gel (flagyl) but she said it would not get into the bloodstream.
She said I could put hydrogen peroxide in a sitz bath but I get conflicting advice on this. Wound care dr says it may help with infection but will also hinder new cells from forming
I am on my third week after plug surgery.
Can you please post an Amazon link to the guaze you use?

The nurse puts in a script with a medical supply company so I get it shipped to me and insurance covers it... May be worth considering for convenience.

The wound care dr has me use silver alignate pads on the external wounds.

I am glad the coconut oil is helping you James.
I am hopeful it will eventually help close the fistulas.
My very best to both of you, sending thoughts for good health and healing.
Click to expand...

Thank you earthshine for the good wishes. I don't think the coconut oil will solve this. It just helps to reduce symptoms until I go in for a more serious fix.
 
earthshine said:
Have you noticed a difference with the turmeric?
Click to expand...

It seemed to dry it out at first, but I stopped using it because I was afraid that it would get worse. Now just the pure virgin coconut oil.

I haven't been diagnosed with Crohn's yet. My GI specialist thinks I will get it though, as a random fistula is very rare. But I'm afraid of the horrible ways they treat anal fistulas for people who have (or could have) Crohn's. Only meds?! all these antibiotics and immunosupressants? And it rarely works. I'm not feeling very encouraged at this moment.

Sometimes I want to convince him to send me to a surgeon to just have it laid open, but I know for people who could have Crohn's it's not always the best option.

Sometimes I think I'll just live with what I have - as the coconut oil keeps it from getting worse (I hope). I don't know...
 
James
I also had a GI workup which is negative for crohns.

However my surgeon has expressed concern that this fistula is bad.

I wish that Kshar sutra treatment could be available in U.S.

From what I understand of the process it makes sense. I hope this plug works but if not I will see if a dr in India can help me.

Does your fistula go through the muscle?

Do you do other things to help build your system?

I take probiotics and digestive enzymes. I am taking a break from l glutamine but will start again in a couple weeks.

I also take a supplement called Seacure (fermented fish) that my naturopath recommends. She said it's like bone broth in a capsule. I eat seafood but avoid other meats, otherwise broth would probably be better.
 
earthshine said:
James
I also had a GI workup which is negative for crohns.

However my surgeon has expressed concern that this fistula is bad.

I wish that Kshar sutra treatment could be available in U.S.

From what I understand of the process it makes sense. I hope this plug works but if not I will see if a dr in India can help me.

Does your fistula go through the muscle?

Do you do other things to help build your system?

I take probiotics and digestive enzymes. I am taking a break from l glutamine but will start again in a couple weeks.

I also take a supplement called Seacure (fermented fish) that my naturopath recommends. She said it's like bone broth in a capsule. I eat seafood but avoid other meats, otherwise broth would probably be better.
Click to expand...

I'm just very healthy in my diet. veggies, fruit, organic mostly. Fermented foods, kim chi and yoghurt. I try to avoid garbage. Like I said my doctor hasn't yet seen the Crohn's, so I can eat what I want at this point.

My fistula does go through the small sphincter. I guess it's okay to lose some of this muscle, but not too much of it.

At least current treatments for Crohn's patients avoid surgery. Maybe this is a good thing.

Have you heard of the strategy used in South Korea? Apparently they attach stem cells (which have been generated from a fat sample) to a synthetic plug, and they use that plug in the fistula. There has been a very high success rate. Maybe a solution will be coming.

At least you've had the plug treatment. That one makes the most sense to me! You're lucky your surgeon did it for you! I really hope it works for you!
 
James80 said:
I don't have a cure for a fistula, but virgin coconut oil has reduced my symptoms to almost nothing.

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.
Click to expand...

Hmmmm.....this is interesting to me. I use coconut oil for everything and it seems to be my cure for most things that bother me. I use it on my cold sores, skin and add some to my food. I use to rub it on my hemmies for relief and it helped alot. I just got a seton a few weeks ago and besides sitz baths and my meds I don't do anything for it. I would hate to irritate it more!! So suppositories work for you eh?? ( fellow Canadian here lol) Honeslty putting anything up there at this point makes me nervous!
 
valb said:
Hmmmm.....this is interesting to me. I use coconut oil for everything and it seems to be my cure for most things that bother me. I use it on my cold sores, skin and add some to my food. I use to rub it on my hemmies for relief and it helped alot. I just got a seton a few weeks ago and besides sitz baths and my meds I don't do anything for it. I would hate to irritate it more!! So suppositories work for you eh?? ( fellow Canadian here lol) Honeslty putting anything up there at this point makes me nervous!
Click to expand...

Yup. It has saved me. As soon as I stop using the suppositories I get flare ups. When I'm using virgin coconut oil (Nutiva) I have no flare ups and no pain. Only drainage. You should try it!
 
James80 said:
Yup. It has saved me. As soon as I stop using the suppositories I get flare ups. When I'm using virgin coconut oil (Nutiva) I have no flare ups and no pain. Only drainage. You should try it!
Click to expand...

Ok thanks!! Since my colectomy that is the only area showing inflammation. Worth a shot!!
 
valb said:
Ok thanks!! Since my colectomy that is the only area showing inflammation. Worth a shot!!
Click to expand...

I'm going to start looking into the SCD. I know it seems a bit like a long shot, but apparently people have had positive responses with this (selective carbohydrate diet). It's pretty hard core, and you have to be on it for a long time. But if it dries up my fistula, I think it's worth it... All the best to you. Let me know if coconut oil helps.
 
James80 said:
I'm going to start looking into the SCD. I know it seems a bit like a long shot, but apparently people have had positive responses with this (selective carbohydrate diet). It's pretty hard core, and you have to be on it for a long time. But if it dries up my fistula, I think it's worth it... All the best to you. Let me know if coconut oil helps.
Click to expand...

Ok so I gave this a shot this morning. Made my coconut oil suppositories. At first it felt soothing then started to burn and sting a bit. That happen to you? Didn't last too long but still wondering. I think I will do it just before bedtime for a few days and see what happens. If it helps make me more comfortable and it's soothing then maybe I will do it a more often.
 
does anyone know why fistulas drain mucus and blood? is the mucus from the digestive tract only or it possible its from within the tract itself only? had plug surgery about three weeks ago and wondering about the amount of mucus discharging?
 
I've got a fistula that is coming from the right colon and comes out the skin by my belly button. It too bleeds some times and has a colour of yellow, white,brown or pinkish sometimes. I was told that some of it was stuff from my bowel. And the blood is most likely caused by the fistula tract collapsing and then opening back up. The white color is usually infection from my understanding. Maybe get them to do a culture on the stuff that's leaking to make sure it's not some kind of infection or bacteria.
 
valb said:
Ok so I gave this a shot this morning. Made my coconut oil suppositories. At first it felt soothing then started to burn and sting a bit. That happen to you? Didn't last too long but still wondering. I think I will do it just before bedtime for a few days and see what happens. If it helps make me more comfortable and it's soothing then maybe I will do it a more often.
Click to expand...

This sounds like the same experience as another person who did it. I would suggest keep putting one in after every BM. Maybe there will be a period of transition while the tract heals a bit? Try sticking to it for a week and let me know, if you're willing. I figure that if coconut oil is something I can ingest, what's the harm in using it in the other end? haha
 

Similar threads

L
Seton
Replies
0
Views
913
LittleBluebird
L
A
Fistula and Abscess 😡
Replies
7
Views
1K
asadmom
A
L
Isolated Perianal Crohn’s - new here
Replies
1
Views
612
MrWheat
M
T
Amateur observations: Non-surgical ways to prevent/cure fistulas.
Replies
0
Views
2K
tim73
T
C
Atypical Crohns
Replies
2
Views
876
Chrissie47
C

Latest posts

Back
Top