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02-16-2016, 03:33 PM   #1441
Grant
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Hi all, after my 3rd Inflectra infusion my fistula has improved. No bleeding & definitely more comfortable. I still sitz bath 2 or 3 times daily for 20mins a time with hot as I can bear water & epsom salts. Good news for me thus far.
Rgds
Grant
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1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
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02-16-2016, 03:57 PM   #1442
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Silverbird et. al., There is a very promising cure for anal fistula, in India. Please go through my blog for details.

https://fistulapatient2patient.wordpress.com/
Thanks, I've heard of this treatment and its positive results
Any idea why it's still mainly performed in India? Had it not been scientifically tested enough?
It sounds like another version of what 'we' do with setons (if I remember right, don't have time right now to read your entire blog :P will do so later!, it's about putting some kind of thread through the fistula and pulling it tighter over time, right? Does that not have any implications for the anal sphincter that way?)

That sounds good, Grant! Hope it'll stay that way
02-16-2016, 06:02 PM   #1443
earthshine
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AFS,
Appreciate your sharing.
Has Dr Bhat explained whether this treatment can be of benefit for those with IBD?

Grant,
From what I understand based on limited info I've read online I am wondering if it's the herbs that are used on the medicated thread, which also are for encouraging growth of healthy tissues in addition to getting rid of the tract, that help reduce the concern of incontinence. .
02-17-2016, 03:59 AM   #1444
theOcean
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Thanks, I've heard of this treatment and its positive results
Any idea why it's still mainly performed in India? Had it not been scientifically tested enough?
It sounds like another version of what 'we' do with setons (if I remember right, don't have time right now to read your entire blog :P will do so later!, it's about putting some kind of thread through the fistula and pulling it tighter over time, right? Does that not have any implications for the anal sphincter that way?)

That sounds good, Grant! Hope it'll stay that way
I've been trying to look this up, and Crohn's patients are strangely excluded from any studies that I can find.

Otherwise, the patients are also treated with Cipro/Flagyl just like we are (in addition to the other, herbal medicines). It sounds really similar to just having a cutting seton + LIFT. Studies that I've found say that it supposedly has less recovery time (and less pain?), but it's more intensive in that you have to come back frequently. The main thing studies try to highlight is less potential incontinence, and less rate of recurrence, but I'm also skeptical about that.

What worries me most: almost every single study I've found focuses on how it's "cost-effective", which really shouldn't be the highlight of a formal study. I've gone through every single study I could find, including the ones linked on AFS's blog.

Studies on Kshar Sutra:
(And the relevance to us as IBD sufferers that I noticed)
  • This study only says that patients had follow-up for every thirty days for three months, which really isn't a long time. It also mentions the cost-effectiveness of the procedure. Crohn's patients are excluded from the study.
  • This study is comparing types of thread used for this surgery. It talks about follow-up being every two months for two years, which is better, but doesn't talk about who is in the study. It briefly mentions the "usual advantages like non-recurrence" but it's citing another source, which doesn't seem to exist online.
  • Another study was specifically re: perianal fistula. They excluded people with Crohn's/IBD from this study, as well. Six month follow-up with 2/34 people having recurrence. Doesn't state how many of the patients completed the follow-up. Table 20 for "Salient Features in [Patient] History" includes the best thing I've ever seen in a study, which was a statistic for "operated for fistula by a quack". (This also makes me question the credibility.)
  • This rare one is about someone who had a fistula that went all the way down his leg. No mention of if he had Crohn's or not. This is also linked on AFS's blog.
  • This one argues that it's economical again. This study is actually on a slightly altered version of kshar sutra. No mention of who was excluded/included.
  • This one only seems to exist as an abstract which doesn't give any additional information as a result. Also claims that it's "easily available and cost-effective".
  • This one is a study on various techniques for dealing with horseshoe fistulae. They mention kshar sutra and low/non-reported recurrence. They mention patients with other conditions, but Crohn's/IBD does not appear in this study, either.
  • This study compares it to fistulotomy, but it constantly stresses that it's cost-efficient. Crohn's patients were excluded, as were any immunosuppressed people. The procedure is explained in more detail here, but it still sounds like cutting seton + LIFT, especially since it's still accompanied by Cipro/Flagyl, too. It talks about possible incontinence in the fistulotomy group, but then never explores possibilities with kshar sutra (only mentioning that chances are "low"), and simply says that it's "simple, easy, and safe" and then continues to mention that it's cost-effective.
  • This in-depth study compares a number of different treatments. Interestingly: "In a comparison of 237 patients with fistulotomy compared with 265 treated with Kshara sutra, the healing time was faster in the fistulotomy group (4 vs 8 weeks), the recurrence rate was lower (4% vs 11%) and the incontinence rate was similar." The article cites this one. Still no mention of if Crohn's patients were included in the study.
  • Another study where Crohn's patients and those with immunosuppressed systems were excluded from the study.
  • Dr. Sahu's article (which AFS linked on their blog) also says: "Patients with fistula associated with inflammatory bowel disease, malignancy, tuberculosis and pelvic pathologies were not included."

Summary:
IBD sufferers as well as immunosuppressed/immunocompromised individuals, people with diabetes, history of tuberculosis, etc, were excluded from every single study. I think it would be irresponsible to try it, given that there's no evidence that it works for people with our conditions, and that we are specifically excluded from these studies.

Additionally, AFS doesn't have IBD. They state as much on their blog.
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02-17-2016, 04:48 AM   #1445
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Thanks, you've definitely done your research!

Of course there's (indeed) usually a huge difference between people with IBD and fistula/abscesses, and people with fistulae/abscesses withóut having IBD: the main problem of reoccurance in people with IBD is the presence of a usually very 'weak' and inflammated rectum area/proctitis. Closing up one fistula isn't gonna fix that, that's where the meds come in.
02-17-2016, 12:02 PM   #1446
AFS
 
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AFS,
Appreciate your sharing.
Has Dr Bhat explained whether this treatment can be of benefit for those with IBD?

Grant,
From what I understand based on limited info I've read online I am wondering if it's the herbs that are used on the medicated thread, which also are for encouraging growth of healthy tissues in addition to getting rid of the tract, that help reduce the concern of incontinence. .
Earthshine,

I don't have IBD, IBS, or Crohn's. I do not know the answer to your question. You may want to ask him directly by Email.
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02-17-2016, 12:28 PM   #1447
earthshine
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the Ocean,
I appreciate your sharing these studies! I would be cautious stating "IBD sufferers as well as immunosuppressed/immunocompromised individuals, people with diabetes, history of tuberculosis, etc, were excluded from every single study."

From your earlier comments it seems it is just as you mentioned, that we don't know for a number of the studies whether some of the patients had crohns disease, the severity of their condition, etc.

I don't know for sure, but someone recently told me that Crohn's is not common in India, so I am not sure how they would be able to get a sufficient sample size to test this method.

I have heard of / spoken to a couple people with ulcerative colitis/crohns that were treated by kshar sutra treatment in India successfully with no reoccurrence after 2-3 years. This was after not having success with treatments in the US. I am grateful that they have been given a new opportunity in life.

A couple video testimonials are here, see one by Anthony, and one by Marie: http://www.omayurvedicclinic.com/

I am continuing to do more research on this.
02-17-2016, 12:39 PM   #1448
earthshine
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I randomly clicked on this study regarding anterior fistulas "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2494247/"

It mentions: "One of the patients with a direct fistula had an anal gland carcinoma; there were two patients with pulmonary tuberculosis, etc".

But I could not find anywhere where it specificially mentions excluding these patients, can you? Please correct me if I am wrong.
02-17-2016, 12:43 PM   #1449
earthshine
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theOcean, one more thing I want to add... I just spoke to someone recently who indicated his son (with Crohns) went to India for treatment for a complex fistula. He said entire cost of treatment over course of 6 weeks was $100. $100!

I agree it would be odd to repeatedly mention the cost effectiveness..... but compared to the cost of surgeries/medications offered otherwise, perhaps that is one reason they mention the cost repeatedly.
02-17-2016, 03:12 PM   #1450
theOcean
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I randomly clicked on this study regarding anterior fistulas "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2494247/"

It mentions: "One of the patients with a direct fistula had an anal gland carcinoma; there were two patients with pulmonary tuberculosis, etc".

But I could not find anywhere where it specificially mentions excluding these patients, can you? Please correct me if I am wrong.
The full quotation from the study:
"One of the patients with a direct fistula had an anal gland carcinoma; there were two patients with pulmonary tuberculosis, but the fistulae were nontuberculous. No other special aetiological factors were identified."

It says the fistulas themselves were nontuberculous, since tuberculosis can sometimes cause perianal fistula. (Source here talking about fistulas which are caused by tuberculosis.) The last sentence also says that they weren't able to find any other factors that would cause the fistula, which implies Crohn's would be one of those.

You're right that it doesn't explicitly state the inclusions/exclusions from the study, although you can still glean it from what happened above. But that actually makes me more skeptical, since these really should be explicit about eligibility.

theOcean, one more thing I want to add... I just spoke to someone recently who indicated his son (with Crohns) went to India for treatment for a complex fistula. He said entire cost of treatment over course of 6 weeks was $100. $100!

I agree it would be odd to repeatedly mention the cost effectiveness..... but compared to the cost of surgeries/medications offered otherwise, perhaps that is one reason they mention the cost repeatedly.
But I'd argue that the constant reference to the cost actually shows bias on the behalf of the people writing these studies. I wouldn't trust them. Whenever I've read studies on other procedures, I haven't seen it mentioned, because what should be important is the end-result.

This person states that they have IBD and got this treatment done, but they link to a holistic health site (that they run!) where their experience is posted as a testimonial, with the only sources being ones by the doctor that operated on him, and one article linked to the person who came up with this surgery -- and that article is just a biography, not a study with any proof. They also constantly praise the cost. Another huge incidence of bias where I don't believe this is a real case.

When I try looking up the person who runs the website (and wrote this review) all I get redirected to is links to their site, as well as articles they've written for other natural medicine sites? And additional information that they're massage therapist. I really, reaaally don't think any of this is credible for way too many reasons. No photos of this person seem to exist online.

You can also look at their supposed news articles, which are absolutely hilarious. More sun exposure equals less cancer! Medical community stalking unvaccinated children! No real sources, and just a bunch of sensationalist nonsense.

I also just noticed that you're in the thread this person created.

AFS also posted on IBD Support where the surgeon they cite in their blog actually posts right after them, with all their videos! Also within the same day as AFS posting. Sounds a little dubious, I think.

The same surgeon actually pops up all over the IBD Support forum with the exact same post. Really, really skeptical. Accounts that talk about getting this treatment seem to have no other posts, except to mention kshar sutra to others. They also all seem to leave out any indication of having IBD, and suspiciously have no sources.
02-17-2016, 03:13 PM   #1451
theOcean
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the Ocean,
I appreciate your sharing these studies! I would be cautious stating "IBD sufferers as well as immunosuppressed/immunocompromised individuals, people with diabetes, history of tuberculosis, etc, were excluded from every single study."

From your earlier comments it seems it is just as you mentioned, that we don't know for a number of the studies whether some of the patients had crohns disease, the severity of their condition, etc.

I don't know for sure, but someone recently told me that Crohn's is not common in India, so I am not sure how they would be able to get a sufficient sample size to test this method.

I have heard of / spoken to a couple people with ulcerative colitis/crohns that were treated by kshar sutra treatment in India successfully with no reoccurrence after 2-3 years. This was after not having success with treatments in the US. I am grateful that they have been given a new opportunity in life.

A couple video testimonials are here, see one by Anthony, and one by Marie: http://www.omayurvedicclinic.com/

I am continuing to do more research on this.
The link you posted is also from that exact same surgeon that won't stop popping up on IBD Support. I'm not trusting this at all.

EDIT: Anthony is also the person with the blog I talked about in my previous post. Especially not trusting anything they say.

Last edited by theOcean; 02-17-2016 at 03:32 PM.
02-17-2016, 05:50 PM   #1452
earthshine
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TheOcean,
"You're right that it doesn't explicitly state the inclusions/exclusions from the study, although you can still glean it from what happened above. But that actually makes me more skeptical, since these really should be explicit about eligibility."

I don't read this the same way - could be interpreted from different viewpoints depending on one's frame of reference...

"This person states that they have IBD and got this treatment done, but they link to a holistic health site (that they run!) ... When I try looking up the person who runs the website (and wrote this review) all I get redirected to is links to their site, as well as articles they've written for other natural medicine sites? And additional information that they're massage therapist. I really, reaaally don't think any of this is credible for way too many reasons. No photos of this person seem to exist online."

The person you are referencing is Anthony... I have been in touch with him over email. He is an extremely kind man. I looked him up, and found him on facebook as well... so many photos do exist... I was skeptical initially, but after probing, I could tell he is quite sincere... he has really turned his life around and has been a source of hope and inspiration for me. The way he speaks about the challenges he has been through with the fistula, there is no doubt in my mind that his experience is sincere. He has encouraged me and given me hope in the treatments I have been trying here in the US over the past year. I can tell he wants what is best for me... in the way that someone who has been through this would.

Also, I am not sure where you see constant praising of the cost??

He only says ONCE "We discussed my case, and within two days, I had a CT Scan, MRI, XRays, and Blood Work done (at a fraction of the cost they rape you with here in the states), and it was showtime! "

Which happens to be very true!

"AFS also posted on IBD Support where the surgeon they cite in their blog actually posts right after them, with all their videos! Also within the same day as AFS posting. Sounds a little dubious, I think."

Actually the Dr that AFS mentions in his blog (Dr Bhat, from Bangalore) is different from the Dr who posts on the site right after (Dr Bapat, from Pune).

I am taking the time to respond to this and make corrections as if there is something available that might be of benefit for readers of this site than I think we should give the information with complete accuracy so that they can make informed decisions for themselves.

Last edited by earthshine; 02-17-2016 at 06:01 PM. Reason: addition
02-17-2016, 06:48 PM   #1453
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The full quotation from the study:

AFS also posted on IBD Support where the surgeon they cite in their blog actually posts right after them, with all their videos! Also within the same day as AFS posting. Sounds a little dubious, I think.

The same surgeon actually pops up all over the IBD Support forum with the exact same post. Really, really skeptical. Accounts that talk about getting this treatment seem to have no other posts, except to mention kshar sutra to others. They also all seem to leave out any indication of having IBD, and suspiciously have no sources.
I would like to clarify this incorrect observation: The doctor who treated me is Dr. Ramesh Bhat from Bangalore. You are confusing him with this other person, Dr. Prasad Bapat, who I don't know and have no connection to.
02-17-2016, 07:35 PM   #1454
theOcean
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Ah, you're both totally correct: I did mix up the names of the surgeons, and I do apologize for that. It was because in Anthony's testimonial, he mentioned Dr. Bapat, and I read that most recently. I was mixing that up with AFS's, and I'm sorry. In fact, I think you mentioned not trusting the surgeon who frequented IBD Support, because they seemed greedy. (Which was how I was also viewing this surgeon when I found his posts.)

I also didn't mean to imply that Anthony was an unkind person. I mostly referenced his articles, and his site, because it made me doubt his credibility. Being... directly affiliated with a particular surgeon, to the point of appearing on their website, makes me a little nervous of believing them. It's in the same way that I might not trust the testimonials on a specific product's website, and would like to look elsewhere for (hopefully unbiased) reviews.

I would also like to apologize if I've come off too abrasively in my previous posts. I still feel uncomfortable with pursuing this as a person with IBD, though.
02-18-2016, 02:38 PM   #1455
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theOcean, Your concerns are not unfounded. I would like to give my perspective, both as a patient and now as an advocate, of KsharShutra.

1) Traveling to India and undergoing 6 months of treatment is unlikely to be anyone's first choice. I am originally from India and I hated my stay there for the duration of the treatment. I had uproot my life and move to India.

2) I chose KsharSutra after having been failed by the medical system in the USA. I underwent 6 surgeries in a span of about 10 to 11 months under three different doctors.

3) I saw my CRS in UCSF start to give up on me.

4) I was in pain level of 8 for the most part of my suffering with this disease.

As we speak, a patient from California, also treated in UCSF, is getting ready to go to India to seek treatment under Dr. Bhat. He does not have IBD either. This patient too had been suffering for more than few years before giving up on the treatment choices offered to him here in the USA. My point is that we should definitely seek treatment close to our home. When that fails and when all options have been exhausted, I think KsharSutra may be considered a final choice.

Now coming to your concerns about IBD:

Dr. Bhat wants to guarantee 100% cure for all his patients. For him, anything less than 100%, is a failure. He takes recurrence seriously. From his point of view, patients with Crohn's have a higher chance of recurrence. So having treated over 1500 patients and having learned from his own experience, he has come up with a treatment that is a modified version of KsharSutra with two very distinct features:

1) His treatment is slow. His cutting rate slows to 2mm per week. This guarantees two things: a) Sphincter functionality is preserved b) The wound/fistula heals slowly and steadily from inside to outside.

2) His treatment starts with a big I&D, which is vital to keep the fistula track and EO open throughout the entire duration of treatment to facilitate easy discharge. When discharge is blocked, pus accumulates, and pain shoots up.

So if you have Crohn's, it is likely that you have a higher chance of recurrence, even after undergoing to KsharSutra and getting your fistula healed. While I was undergoing treatment under Dr. Bhat, another patient from Sweden was getting treated as well. This patient had symptoms of IBD. His fistula was very complex, as he had 5 or 6 EO. Dr. Bhat did not offer him the usual 100% guarantee, but still took him as his patient, and treated him. That patient was completely cured about 1 week before my treatment got over. I am not in touch with that patient. But for this patient, recurrence was not a worry – he just wanted all those 6 EO to close and his fistula to heal, so he can return to his normal life.

I have heard and read about this, but I am not sure how far this is true. Crohn’s is not very prevalent among Indians. So you may not find data from clinical trials conducted on Crohn’s patients from India. After my return from India, I approached CRS from both UCSF and Stanford to see if they are interested in conducting clinical trials in the USA for KsharSutra. My suggestion did not even generate a lukewarm reception. The CRS I spoke to at Stanford, was the most enthusiastic, but she too concluded that she does not have time to conduct clinical trials. The best I could achieve was that there may be a very small possibility of inviting Dr. Bhat to USA to speak about KsharSutra at the next medical conference for CRS. If this happens, the awareness may spread. But I am not hopeful.

Good luck to you all.
02-18-2016, 07:26 PM   #1456
earthshine
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TheOcean
I can understand the concern

AFS
Thanks for the write up
03-02-2016, 02:20 PM   #1457
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Hi everyone, I hope your all doing well 😊
I'm hoping for abit of advice. I have Crohn's disease and had a seton placed in October last year for a fistula that is too close to the anal muscles to do anything else to. It drains constantly and often bleeds- as far as I'm aware it's not a cutting seton- I was taken in as an emergency because my GI kept saying it was fine until it got seriously infected and after seeing the colorectal surgeon he got me in the next day with no definite plan of what they were going to do. I didn't find out that I'd had a seton in till I was in recovery and asked someone- I wasn't told how to look after it or recovery time or anything. I saw my GI and surgeon the following month and was told that once the infections gone I could start on either remicade and humira then look at getting the seton out. First question: remicade or humira? What's your thoughts? I then had a MRI scan in January which I'm still waiting the results for to see if the infections gone- I feel my GI is useless, anyone else feel that too? This week I have been very sore- in often sore when I open my bowels and bleed almost every time I do from my fistula but now I'm getting the sharp stabbing pain like I did right at beginning. I'm worried that the fistula is reabsessing! Any thoughts, advice? I'm unsure what to do 😕 Thanks for reading.
03-02-2016, 02:32 PM   #1458
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Hi. I am sorry for what you are going through. If you feel like your fistula is giving you problems call your doctor or get a second opinion. As far as Remicade or Humira, Remicade was good for me until I had a reaction. I will be starting Humira soon. I can't really tell you which would be better for you personally. I hope you feel better soon. Please let us know.

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03-02-2016, 04:36 PM   #1459
earthshine
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Just wanted to echo Ron's comments in that I am sorry you are going through this. Has your Dr mentioned sitz baths? May help with draining and hopefully reduce the pain.
03-02-2016, 05:31 PM   #1460
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Hi Abby,
Sorry you're still not feeling great. My gastro was happy to put me on Humira as soon as my seton was in place. In practice it was around 1 month to sort it out, but there wasn't any question of waiting until some indeterminate time when the infection was gone - rather that if the seton was in place it could drain so that was fine.

Seems like you have been waiting for quite a while for your MRI results - can you chase it up? When's your next gastro appointment? I always try to get my results directly first so I can try to understand them and be prepared before the appointment.

Re Remicade vs. Humira - they were presented to me as equally good and the choice of Humira was mine based on convenience of home injection vs. infusion at hospital. Mind you, I don't think it's worked as yet. I'll have another scan on 14th March so hoping to see some improvement but drainage etc is exactly the same.

Regards your current pain, I would get in contact with your gastro and see if a course of metronidazole would help. Hope you feel better soon xx
03-02-2016, 05:50 PM   #1461
earthshine
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I also take a small amount of p73 oregano oil each day. I was on augmentin but it didn't do much and wondered if it was worsening the candida overgrowth I have been challenged with. Along with it I also take orthobiotics probiotics (min two hour gap)
03-04-2016, 10:30 AM   #1462
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Hi everyone, I hope your all doing well 😊
I'm hoping for abit of advice. I have Crohn's disease and had a seton placed in October last year for a fistula that is too close to the anal muscles to do anything else to. It drains constantly and often bleeds- as far as I'm aware it's not a cutting seton- I was taken in as an emergency because my GI kept saying it was fine until it got seriously infected and after seeing the colorectal surgeon he got me in the next day with no definite plan of what they were going to do. I didn't find out that I'd had a seton in till I was in recovery and asked someone- I wasn't told how to look after it or recovery time or anything. I saw my GI and surgeon the following month and was told that once the infections gone I could start on either remicade and humira then look at getting the seton out. First question: remicade or humira? What's your thoughts? I then had a MRI scan in January which I'm still waiting the results for to see if the infections gone- I feel my GI is useless, anyone else feel that too? This week I have been very sore- in often sore when I open my bowels and bleed almost every time I do from my fistula but now I'm getting the sharp stabbing pain like I did right at beginning. I'm worried that the fistula is reabsessing! Any thoughts, advice? I'm unsure what to do 😕 Thanks for reading.
Hey Abby,
This sounds a lot like what I went through recently/am going through! In January I had a fistula and small abscess very close to the anal muscles. My surgeon drained it and, like you, put in a seton. They stay clean themselves, so there's no really upkeep. That said, when I had my last seton a year ago, my surgeon at that time said to take baths and while in them, just swish the area and move the seton around. Lightly press the skin around it. This can help promote drainage. I have bleeding from the seton site with BMs but it's not excessive and has decreased over time.
Mine too will get sore and painful when I'm having several bowel movements a day. I will get the sharp pains at the seton hole, but they come and go. Like today I feel pretty normal. Do you have any scarring that's still healing?
Though this is my second seton/fourth fistula/seond abscess in 1.5 years, I was only actually diagnosed with Crohn's in January. Right after getting this seton in, they started me on Remicade. My GI said that there were a few options for treatments but that Remicade was proven to be the best for us Crohnies that have fistulas.
03-04-2016, 01:32 PM   #1463
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Thanks so much for replying guys 😊
I've heard a lot of people mention sitz baths but unfortunately I live in a house where we only have a shower- ironically we got rid of the bath not long before I got diagnosed with Crohn's disease. I've tried to ring my IBD nurse the last couple of days but she's been unavailable. Still no letter yet from my GI or surgeon. I was more inclined to go with humira just because of it being easier to just do it at home but I've heard a lot of success stories from people on remicade. Luckily it seems to have eased more today- I've slapped on tonnes of cavilon because it was starting to blister around the fistula. Has anyone not had a seton work?- I don't know what the other options are when your fistula is so close to you anal muscles. I've also noticed it worsen when I open my bowels but unfortunately it doesn't seen to have ever eased and still bleeds a lot. What else can they do? Anyone had other treatments for a fistula? Or has medication just cleared it up for you, or different surgery?
03-04-2016, 01:45 PM   #1464
ronroush7
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You can buy the things you need for a sitz bath at a drug store. It fits on your toilet seat. There is a bag that you put warm water in and let it flow into the "tub" as you are sitting on it.

03-04-2016, 01:47 PM   #1465
hkspence
 
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Thanks so much for replying guys 😊
I've heard a lot of people mention sitz baths but unfortunately I live in a house where we only have a shower- ironically we got rid of the bath not long before I got diagnosed with Crohn's disease. I've tried to ring my IBD nurse the last couple of days but she's been unavailable. Still no letter yet from my GI or surgeon. I was more inclined to go with humira just because of it being easier to just do it at home but I've heard a lot of success stories from people on remicade. Luckily it seems to have eased more today- I've slapped on tonnes of cavilon because it was starting to blister around the fistula. Has anyone not had a seton work?- I don't know what the other options are when your fistula is so close to you anal muscles. I've also noticed it worsen when I open my bowels but unfortunately it doesn't seen to have ever eased and still bleeds a lot. What else can they do? Anyone had other treatments for a fistula? Or has medication just cleared it up for you, or different surgery?
I'm sure you've heard of a fistulotomy, where they just cut it open, and I'll bet that's what they don't want to do so close to the muscles. My old colo-rectal surgeon didn't want to do that so instead performed an advancement-flap procedure where they pull a flap of tissue down over the internal opening of the fistula and sew it, in at attempt to dry out the fistula by closing off where the fluid is coming from. You could asks your docs about that? Colo-rectal surgeons and GIs that specialize or have a lot of experience with Crohn's are the best to go to. Some others just try to solve the problems as they are, not taking into account the fact that you have Crohn's.
03-04-2016, 02:15 PM   #1466
valb
 
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Abby.....I have had my seton now for just over 2 months. First few days were ok then it hurt so much for the next few weeks. It was tough to stand and walk or do anything! Then all of a sudden 2 weeks ago it just magically became better. I don't feel it at all and I forget it's there. Not sjre if it's a coincidence but I started my Humira injections right at the time it started feeling better and I cut a few more things out of my diet. I was taking regular sitz bath up to 3 a day. I just bought a bowl that sits over toilet. I made them as hot as I could stand and made sure I was super dry afterwards and I would put a gauze in between my cheeks to catch any moisture or drainage if any. Now the draining seems to have stopped completely but I still wash everytime I go to washroom and try to not use toilet paper. This will sound gross to some but we have a long shower extension so I just sit over the bathtub and rinse with hot water for 2 min then dry well. It works for me and no issues. Mine is really close to my bum too. Too much info perhaps but we are here to help each other!! Hopefully things get better for you soon. Take care and keep us posted.
03-04-2016, 03:09 PM   #1467
Abbynormal
 
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Thanks spence, that's definitely something to think about! Did that Clear your fistula?
Thanks val- humira is the one I'm heading towards- I'll be asking my GI for it as soon as I can because I can't see how this seton is helping as I didn't have a problem with drainage in the first place! If anything it drains too much- constantly at it. I really appreciate you sharing all the person details- it's easy to say it to other people in the same position. Telling anyone one else and they look at you disgusted or mortified lol
03-07-2016, 01:16 PM   #1468
AFS
 
Join Date: Dec 2014
Thanks so much for replying guys 😊
I've heard a lot of people mention sitz baths but unfortunately I live in a house where we only have a shower- ironically we got rid of the bath not long before I got diagnosed with Crohn's disease. I've tried to ring my IBD nurse the last couple of days but she's been unavailable. Still no letter yet from my GI or surgeon. I was more inclined to go with humira just because of it being easier to just do it at home but I've heard a lot of success stories from people on remicade. Luckily it seems to have eased more today- I've slapped on tonnes of cavilon because it was starting to blister around the fistula. Has anyone not had a seton work?- I don't know what the other options are when your fistula is so close to you anal muscles. I've also noticed it worsen when I open my bowels but unfortunately it doesn't seen to have ever eased and still bleeds a lot. What else can they do? Anyone had other treatments for a fistula? Or has medication just cleared it up for you, or different surgery?
At the risk of sounding repetitive, I post the following. If sphincter muscles are involved, in general a CRS will not attempt the most successful fistula-surgery: the lay open fistulotomy/fistulectomy. Your other choices ERAF, LIFT .. etc. You can go through many of the published literature - available in PubMed and Google scholar - to learn about these surgeries, their success rate, procedure .. etc. There is also an alternative surgery, available only in India, that has an excellent success rate, known as KsharSutra. I underwent this procedure for my fistula and have documented it in a blog. You may want to look into that as well. Good luck to you.

https://fistulapatient2patient.wordpress.com/
03-08-2016, 01:10 PM   #1469
Abbynormal
 
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Hi guys- just wanted to say another thank you for all the replies and to give you a quick update. The pained eased off a it so I went back to work, few more days sat directly on my bottom and it flared up again- sore, bleeding and draining tonnes. my GI's assistant offered to book me an appointment then send it me in the post. So not very helpful- I then decided to call my IBD nurse who said she would get in contact with my surgeon. After a while she phoned me back saying that he was busy and said I should be fine but he'll get me booked in for next next week to see one of his consultants. My nurse suggested that I go an see my GP so I called them. The GP that was working today wasn't my usual GP and had no idea what a seton was so I had to explain it to her over the phone. I wasn't holding much hope for the appointment. Luckily to my surprise she was really good and I'd say that it was infected- she gave me some anti biotics and suggested I not sit on my bottom which is going to be awkward but hopefully will clear it up and relief some pain!
03-17-2016, 03:35 PM   #1470
GABoy
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Hi Abby,

I am just catching up as I have not been on here recently. Sorry to hear about your struggles. As for medication, I started on Humira and it worked for me for over a year. However, I did end up abscessing again. I'm now on Remicade, which has not been perfect either as I'm in a pretty bad flare (I failed Entyvio in between the two).

My understanding is that all biologics work, depending on the individual. Hopefully they find the one that is right for you. Good luck.
__________________
Diagnosed with perianal Crohn's Disease: 12/2013

Surgeries:
Abscess Drainage 10/2013
Seton Placement 11/2013
Abscess Drainage + Seton Placement 4/22/2015
Abscess Drainage 10/28/2015
Seton placement 2/11/2016
Abscess Drainage 2/26/2016
Mucosal Advancement Flap 8/12/2016


Prior Medications:
Cipro, Flagyl, Prednisone, Humira, Entyvio

Current Medications:
Remicaid 6MP and Allopurinol
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