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I hope it heals quickly without any concern.

I would get another opinion. Would hesitate to surgery without more confidence that it would help
 
Hi all just a quick question; has anyone had much success with Imuran / Flagyl combo to help manage and close fistulas? I've just been put on Imuran with Flagyl after a course of just Flagyl failed to stop my abscessing and fistulas from pussing. Also how did people fare on Imuran? Cheers.
 
I have never been on the combo together. I have been on Imuran for several years. In the last year, they had to cut the dosage in half because there was too much of it in my blood.
 
ronroush7 said:
I have never been on the combo together. I have been on Imuran for several years. In the last year, they had to cut the dosage in half because there was too much of it in my blood.
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Thanks Ron. What early side effects did you have or continue to have? What dose where you on to have so much in your blood?
 
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GABoy said:
Removed seton today. My NJ CRS says fistula starting to tighten around it, thus indicating healing. I've been told this before, when I was on Humira, and I abscessed again. Praying the Remicade works better.

Strange thing was this CRS says I am not a candidate for mucosal advancement flap because I have Proctitis which probably won't get better. The CRS at Mt. Sinai said that the medication will not heal the fistula and that I will have to have surgery to close it. He suggested the mucosal advancement flap after a period of time on Remicade.

I think I need to just go with the Mt. Sinai CRS as its 2 years and tons of meds with no luck. Any advice from you guys?
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I don't understand why the CRS said Remicade + Seton will not heal the fistula. Perhaps I'm missing something?
 
I think different people have different reactions to medicines. One person might do better on a medicine than another.
 
My CRS told me the seton would never fully heal my fistula, it essentially buys you time before surgery and helps drain it to increases chances of success for surgery.
 
Dear All,
I am 37 year old male and in the beginning of the year I had a developed boil/cyst inside ano canal cause either infection in ano glands or perhaps anal fissure which with the passage of time got bigger and extremely painful. It was very difficult to go to the toilet and even sit down. Went to the A&E and my GP and was given a course of antibiotics and some cream to apply to reduce inflammation, itchiness. Pain and the boil got so worsen I had to visit A&E again was given painkillers and the doctor said that it should erupt on it's own and I will have immediate relief. Luckily the same night after sit baths the boil busted and I had immediate relief. All the abscess and infection got drained and I was very much relieved. I was experiencing some yellow and white discharge sometimes bit reddish in color and doctor said it is normal. For the next few months there was no discharge but sometimes there was a stain on my undergarments. Although there was no pain associated with discharge I sometimes felt damp in the anal area and saw my GP again which referred to me to the colorectal department.
Waited nearly over 2 months to see the specialist and when I saw him he did inspection and said surgery is required because it has turned into a fistula. Luckily he reckoned in my case it wasn't deep and surgery should be fairly simple and was given date straightaway after 2 weeks. In hospital surgery was performed under EUA and was sent home same day. I was told to take painkillers, sit baths, laxatives to ease passing stool. I was in pain for few days but pain gradually decreased. Only in the mornings when I went to the toilet I felt very fast throbbing pain like electric shocks. Went to see surgeon again and he explained I had a insertion of seton because my fistula was quite high and when the located it during surgery it was filled with pus. Now it has been nearly 5 weeks and seton is still there and surgeon tightened it on the other day which was the most excruciating pain I had ever felt.
Friends I would like to ask if anybody had a fistula surgery and had seton inserted. Basically the way seton works is, it cut through the sphincter muscle and gradually drops off whilst muscle is being repaired naturally. Its a long process but I still feel pain especially in the morning although I have no problems passing stool.
How long will it take for the seton to cut through and fall off. Do I need to pull the seton at home. How successful is cutting seton surgery. I put a cottong gauze between the buttcheeks which is bit wet in the morning. Any feedback/information or further comments will be much appreciated and thanks for reading this.
 
g_sing said:
Dear All,
I am 37 year old male and in the beginning of the year I had a developed boil/cyst inside ano canal cause either infection in ano glands or perhaps anal fissure which with the passage of time got bigger and extremely painful. It was very difficult to go to the toilet and even sit down. Went to the A&E and my GP and was given a course of antibiotics and some cream to apply to reduce inflammation, itchiness. Pain and the boil got so worsen I had to visit A&E again was given painkillers and the doctor said that it should erupt on it's own and I will have immediate relief. Luckily the same night after sit baths the boil busted and I had immediate relief. All the abscess and infection got drained and I was very much relieved. I was experiencing some yellow and white discharge sometimes bit reddish in color and doctor said it is normal. For the next few months there was no discharge but sometimes there was a stain on my undergarments. Although there was no pain associated with discharge I sometimes felt damp in the anal area and saw my GP again which referred to me to the colorectal department.

Waited nearly over 2 months to see the specialist and when I saw him he did inspection and said surgery is required because it has turned into a fistula. Luckily he reckoned in my case it wasn't deep and surgery should be fairly simple and was given date straightaway after 2 weeks. In hospital surgery was performed under EUA and was sent home same day. I was told to take painkillers, sit baths, laxatives to ease passing stool. I was in pain for few days but pain gradually decreased. Only in the mornings when I went to the toilet I felt very fast throbbing pain like electric shocks. Went to see surgeon again and he explained I had a insertion of seton because my fistula was quite high and when the located it during surgery it was filled with pus. Now it has been nearly 5 weeks and seton is still there and surgeon tightened it on the other day which was the most excruciating pain I had ever felt.
Friends I would like to ask if anybody had a fistula surgery and had seton inserted. Basically the way seton works is, it cut through the sphincter muscle and gradually drops off whilst muscle is being repaired naturally. Its a long process but I still feel pain especially in the morning although I have no problems passing stool.
How long will it take for the seton to cut through and fall off. Do I need to pull the seton at home. How successful is cutting seton surgery. I put a cottong gauze between the buttcheeks which is bit wet in the morning. Any feedback/information or further comments will be much appreciated and thanks for reading this.
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g sing, I am going to tag DJW. I am also going to tag Lady Organic
 
ronroush7 said:
g sing, I am going to tag DJW. I am also going to tag Lady Organic
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I don't have personal experience with a cutting seton but understand they have high success rates. I know it is painful but it is good that you have great hopes to be healed. Hang in there. Maybe you can take pain medicine a little while prior next visit. I would ask dr before tightening in between visits to ensure proper healing occurs.
 
well it has been 5 weeks and i was told by the surgeon few weeks ago that seton should come out on its own in couple of weeks and it's still there. bit tender and painful to touch. any advice friends?
 
g_sing said:
well it has been 5 weeks and i was told by the surgeon few weeks ago that seton should come out on its own in couple of weeks and it's still there. bit tender and painful to touch. any advice friends?
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I put virgin coconut oil up there. (I make suppositories) This always seems to calm things down for me.
 
g_sing said:
well it has been 5 weeks and i was told by the surgeon few weeks ago that seton should come out on its own in couple of weeks and it's still there. bit tender and painful to touch. any advice friends?
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I think there are others on healing well site that have experience with cutting setons too
 
Hi g_sing. I have had a fistulotomy with three draining setons placed. That was close to two years ago. I recently had a seton removed by my colorectal surgeon. The fistulotomy was a surgical procedure in an operating room and the removal was done in the office. If you are in pain,let your doctor know. I have no experience with cutting setons. Keep us posted.
 
dave13 said:
Hi g_sing. I have had a fistulotomy with three draining setons placed. That was close to two years ago. I recently had a seton removed by my colorectal surgeon. The fistulotomy was a surgical procedure in an operating room and the removal was done in the office. If you are in pain,let your doctor know. I have no experience with cutting setons. Keep us posted.
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Keep us updated.
 
ronroush7 said:
Keep us updated.
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I will.I am so happy the first seton removal is doing well. I was told it will still drain and it does.No new abscesses have formed,a good sign.I will post after the second seton is removed.Hopefully,in a couple weeks.
 
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.
 
hi all. went for my follow up appointment with my surgeon today. it has been 7 weeks since my surgery. last time I was told by the surgeon that I should try to pull the seton at home now and then. he tightened it last time and basically did the same thing today. the pain is excruciating but the surgeon reckons it's good which means the seton is working and cutting through the muscle. he said he don't know for sure how long this seton is going to stay, but periodical tightening and putting tension on the seton, it should work faster. what he said that once it has cut through it should fall on it's own. as such the seton doesn't bother me and there is no pain whilst passing stool. sometimes i hardly feels it is there. but on other occasions when the knot starts rubbing against the butt cheeks the pain is horrendous. i am due to see him in another 3 to 4 weeks. the wound is very clean as he said, no signs of infection, inflammation. fingers crossed and praying for this thing to come outta me. would like to thank everyone who have read my post and replied respectively. i seriously appreciate everybody's input.
 
dave13 said:
I will.I am so happy the first seton removal is doing well. I was told it will still drain and it does.No new abscesses have formed,a good sign.I will post after the second seton is removed.Hopefully,in a couple weeks.
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Dave13,

Good to hear it is going well for you. I had mine taken out a couple weeks ago by my initial surgeon. My history is a little complicated as I went for a second opinion before that. I went back to the second opinion CRS. He felt Seton should not have come out (it had been in since April, but I abscessed again at the end of October even with the seton). The external hole has closed already.

He rx Cipro & Flagyl. he told me not to go for my Remicade infusion if I was having pain. Also, I'm tentatively scheduled for EUA on 2/11. He said if I'm not in pain, we can delay. If I am in pain, we have to do it. So... I'm not in excruciating pain, but it is tender. Looking more and more like I'm back under anesthesia on 2/11. I hate this disease.
 
Heading on the 18th of this month for bowl reconstruction to fix this stupid fistula. I have a really good surgeon and he is figuring on being able to go in a remove some of my colon (where the small bowel joins) and hook it all back up plus clean out the abscess and infection. He said there is only a 7 to 10 % chance I would need a bag for ever but by the looks of things from the ct scans and sigmonocopy he should be able to do it all in one surgery and figures this is going to make my symptoms and quality of life much better. As the disease is only in this part. Just wondering if anyone else has had surgery similar to this? And if so did it work for you? Or what complications were there? I'm just a little worried. Seems to good to be true. I'm really worried about waking up from surgery and finding out I have ne guts left and have a bag from the rest of my life
 
Hi Matt,

That was the first surgery I ever had back in the mid 1980s. I didn't have any complications.
I think what you're feeling perfectly normal.

Sending you my support.
 
DJW said:
Hi Matt,

That was the first surgery I ever had back in the mid 1980s. I didn't have any complications.
I think what you're feeling perfectly normal.

Sending you my support.
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Thanks for the reply. I've had a few people that have now told me how good there surgery has gone and how much better it mad them. It's nice to hear
 
matt82 said:
Heading on the 18th of this month for bowl reconstruction to fix this stupid fistula. I have a really good surgeon and he is figuring on being able to go in a remove some of my colon (where the small bowel joins) and hook it all back up plus clean out the abscess and infection. He said there is only a 7 to 10 % chance I would need a bag for ever but by the looks of things from the ct scans and sigmonocopy he should be able to do it all in one surgery and figures this is going to make my symptoms and quality of life much better. As the disease is only in this part. Just wondering if anyone else has had surgery similar to this? And if so did it work for you? Or what complications were there? I'm just a little worried. Seems togood to be true. I'm really worried about waking up from surgery and finding out I have ne guts left and have a bag from the rest of my life
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Surgery made my life so much better! I went in for a resection of Large bowel. I had a large stricture and it was so painful. My gut was so bloated all the time and when laying flat I could actually feel the bulge where it was. However, once in surgery my surgeon realized and noticex that my entire large bowel was full of disease and decided to remove the entire thing! She was however able to leave just enough at the bottom to attach to my small bowel and not need a bag. So far so good! It was a very long recovery but my quality of life is so much better and pain is rare. My diet is pretty normal but I do avoid many things. Now I just recently developped this abscess and fistula but I believe that is my own fault. I was feeling so good I neglected taking my meds! Now I have a seton and hoping it will be the end of it for a long time again. I know it's not the same surgery as you but just wanted you to know there is hope to relief and a normal life!! Think positive and believe in your surgeon. Mine is amazing and I am thankful she made the decision she made. Take care.
 
Thanks for the reply. I'm thinking I'm maybe worrying too much about this surgery and probably should stop looking up stuff on the Internet lol. My surgeon and GI both seem to say the disease part is mostly located in the right colon and illium and both figure it can be removed with out causing me long term effects such as absorbing stuff. It just worries me that the surgeon says that he doesn't know how much or how bad it is till he gets in to see. I know he can't give a 100% clear answer and has to say there is a chance I'll need a bag for the rest of my life but he said only 7 to 10 % chance. I guess I need to just trust him and hope that he can tell buy the scope and the ct scans. Sorry if I seem to be repeating myself. Just worried of the out come. Right now other then this fistula leaking I feel pretty good. Just really don't want to cone out of this worse off then I am or have been for years
 
Hi all, brief history. I don't have Crohn's. But the past two years I have had an abscess, fistula and fissure. I have had surgery on abscess and fistula. My question is.. If I don't take my Miralax or stool softners one day and have a hard BM the following day, I will be sore in that region for like 2 weeks! should I just accept the fact that this is going to be a problem my entire life?
I am also pregnant so I can't take much of anything.
Does anyone do anything for some relief?
 
matt82 said:
Thanks for the reply. I'm thinking I'm maybe worrying too much about this surgery and probably should stop looking up stuff on the Internet lol. My surgeon and GI both seem to say the disease part is mostly located in the right colon and illium and both figure it can be removed with out causing me long term effects such as absorbing stuff. It just worries me that the surgeon says that he doesn't know how much or how bad it is till he gets in to see. I know he can't give a 100% clear answer and has to say there is a chance I'll need a bag for the rest of my life but he said only 7 to 10 % chance. I guess I need to just trust him and hope that he can tell buy the scope and the ct scans. Sorry if I seem to be repeating myself. Just worried of the out come. Right now other then this fistula leaking I feel pretty good. Just really don't want to cone out of this worse off then I am or have been for years
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In October 2010 I had a very similar surgery to yours. I had the terminal ileum removed, with about 3 ft of my small intestine and the first 6 inches of my colon. I was also told there was a small chance of having a ostomy bag installed, but that did not happen. He connected the healthy end of my small bowel to my colon and I actually felt better right after the surgery than I did before surgery. I had people getting after me for not using the pain medicine, but what I felt was an improvement, so I felt I did not need the medicine. It was the best thing I did in this world of fighting crohn's disease. No regrets at all.
 
DougUte said:
In October 2010 I had a very similar surgery to yours. I had the terminal ileum removed, with about 3 ft of my small intestine and the first 6 inches of my colon. I was also told there was a small chance of having a ostomy bag installed, but that did not happen. He connected the healthy end of my small bowel to my colon and I actually felt better right after the surgery than I did before surgery. I had people getting after me for not using the pain medicine, but what I felt was an improvement, so I felt I did not need the medicine. It was the best thing I did in this world of fighting crohn's disease. No regrets at all.
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Really that sounds promising. I'm hoping for the same kinda out come. And I'm in good health these days other then the fistula leaking. If it wouldn't leak I would be good to go. If you don't mind me asking how did your bowels work after? I've heard that some have not much control for a while. And was it open bowel surgery? And what did you eat after wards?
 
@harper05, I suffer from constipation which is a no no for a fistula. I eat 2 to 3 pieces of dried pitted prunes followed by a cup of water before going to bed. It's my doctor who suggested I tried it and it worked for me. Also, I apply coconut oil at night and after every bowel movement to keep it lubricated. Hope you find relief soon....
 
Hi all!

Also a brief history: I got a perianal abscess when I was 18. Had a couple of surgeries and (short-term) setons. After I moved to another hospital, I got into an experimental stem cell treatment (cleaning the fistula and filling it with a 'glue' containing healthy stem cells, but 50% chance I had placebo, of course.), which did nothing, unfortunately (but if I had the placebo, I still get the 'real' treatment once the results are here).
After that I was put on Remicade, have been for the last 2,5 years. It's calm now (not a lot of pus leaking, not too much drainage of other fluids either), haven't had any abscesses since. So that's a good thing :) But it's still open, and I still feel it (not too painful though, I just feel something is there). I also know it's still open on the outside as well as on the inside, since somethings some gas gets through, which feels really strange :p

DougUte: does it still feel alright? Sounds very promising! I love reading success stories, even though they make me a bit jealous sometimes :p

Harper: hope you're doing well with your pregnancy + abscesses/fistula :)
 
Harper
I wonder if seeing a naturopath or dietician would be of help, to figure out what foods will help soften your stools... I eat coconut oil, take magnesium and avoid roasted nuts. I do soak almonds and other nuts to make them easier for my body to digest. Throw out drain water. Each type of nit has varying soak times, try google for a chart.

I also eat clementines, take digestive enzymes and probiotics in hopes of keeping stool soft.

best wishes
 
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
 
AFS said:
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/
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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 :)
 
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. .
 
Silverbird said:
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 :)
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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.
 
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.
 
earthshine said:
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. .
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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.
 
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.
 
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.
 
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.
 
earthshine said:
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.
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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.

earthshine said:
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.
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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.
 
earthshine said:
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.
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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.
 
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kshar sutra

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.
 
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theOcean said:
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.
Click to expand...

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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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)
 
Abbynormal said:
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.
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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.
 
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?
 
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.
 
Abbynormal said:
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?
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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.
 
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.
 
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
 
Abbynormal said:
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?
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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/
 
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!
 
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.
 
GABoy said:
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.
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Amen
 
My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me to add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
 
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dave13 said:
My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me too add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
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I hope the best for you
 
Abbynormal said:
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!
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Hey Abby...how are you these days? I really hope the pain has eases up for you!
 
dave13 said:
My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me to add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
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Hoping things improve for you Dave. Your discussions & input have always been so helpful to me!
 
Hi valb 😊
I'm not too bad. I'm still struggling with sitting down as my fistula just seems to be rebeling against me. I got my test results back from blood tests and X-Ray's so I can start humira next week. I go in on Tuesday to see my IBD nurse that will show me how to inject it and I will need to do the 4 injection starter booster. So hopefully things will start looking up 👍🏻
 
Abbynormal said:
Hi valb 😊
I'm not too bad. I'm still struggling with sitting down as my fistula just seems to be rebeling against me. I got my test results back from blood tests and X-Ray's so I can start humira next week. I go in on Tuesday to see my IBD nurse that will show me how to inject it and I will need to do the 4 injection starter booster. So hopefully things will start looking up 👍🏻
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Awesome that you are starting Humira. I always feel a huge difference a week after taking the boosters. Hopefully you will too. Not fun doing all 4 shots at once but totally worth feeling better quickly. It doesn't hurt but your injection sites may become really really itchy. Mine used to but I don't have any reaction at all anymore. Good luck!
 
Hi, I am new to this forum. I have a rectovaginal fistula. I have had a seton placement and plan to do the LIFT procedure in May. Does anyone with the same/similar condition have any information on the recovery process for the LIFT procedure? How long and severe was the pain? Was it an outpatient surgery? Did you need someone to take care of you? Thank you!
 
Hi everyone, hope your all well! 😊 So I went for my first Humira injections yesterday and it hurt but I think I was expecting it to be worse. My IBD nurse talked me through it and did the first two so then I did the second two. All in my legs- which are now feeling very sore. They've swelled and bruised and my knees have been hurting that bad that I couldn't sleep! I go back to the hospital on Tuesday 26th April for the next two injections and then can start doing them at home! Seems like a pain with all the blood test but I suppose it's better than getting some of the possible nasty side affects. My nurse was worried yesterday as my hands went really itchy and red but luckily they calmed down about 10-15 minutes later.
 
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Well done Abby. The loading doses are the worst it gets easier. Though maybe you should mention the leg swelling to the nurse? I hope it eases soon. After you've been on it a while you only ha e to get the blood tests every 3 months so it's not too inconvenient X


laLalala- sorry I can't comment as not had the Lift, but sending my support. It was on the cards for me and the surgeon suggested 6 weeks off work for recovery, but I know others here have had it so they will know better than me X
 
Hi everyone,

Long time. Abbynormal, the Humira injections will get much better. It becomes just like anything else, an annoyance, but nothing major after a while.

Lalalala, I have nothing to offer on the Lift procedure. I'm talking to my surgeon about a mucosal advancement flap, as my surgeon prefers that procedure to the Lift.

I wish you all the best and hope that you all find relief with your treatment.
 
Hi lalalal,
I just has surgery today they went in for one fistular and found 2 more so that's a total of 5 I have had.They did 3 with the plug and the colorectal surgeon says the plug is not effective.I had a general surgeon prior to now I have the colorectal surgeon.I had two setons placed today she says lets see how they go she said,the setons only last a year to two years.I guess they can close the tract but if they don't then there is the bio lift surgery.So,I can't answer how you will feel but this is my third surgery now and you do have to have someone be with you because you will be put to sleep.I hope I helped a little keep in touch...Christina
 
Thanks guys, well hopefully I'll be able to sync the blood test with my b12 injection and bloods for azathioprine which they're keeping me on. My legs have light striped bruises across them (bit like a zebra!)
 
Hi Abbynormal,

I don't recall any reaction like you are describing. I would just let the doc know. Good luck with everything and keep us posted.
 
Hi I'm meeting with a surgeon in may to discuss removal of a 6cm structure of the small bowel I'm wondering how successful people have found this op I was going to ask about balloon dialalation but not sure how that works either
 
Hi Abby,

I did not. My experience on Humira was great for a year. Then it didn't work anymore. I had no side effects. I'm sorry to hear that you are.
 
To Gaboy,
Hi there I see you have been thru a lot of abscesses did you have anal fistulars? I am on my fifth one had surgery in Jan and last week both time they went in for one and found 2.I was wondering if you have had fistulars are you still getting them.Any information would be helpful thank you Christina
 
Anne cochrane said:
Hi I'm meeting with a surgeon in may to discuss removal of a 6cm structure of the small bowel I'm wondering how successful people have found this op I was going to ask about balloon dialalation but not sure how that works either
Click to expand...
Did you mean stricture? In 2010, I had an obstruction and had six cm of my stomach removed. It did not send me into remission.
 
christina57 said:
To Gaboy,
Hi there I see you have been thru a lot of abscesses did you have anal fistulars? I am on my fifth one had surgery in Jan and last week both time they went in for one and found 2.I was wondering if you have had fistulars are you still getting them.Any information would be helpful thank you Christina
Click to expand...


Hi Christina,

I have had 2 perianal fistula for nearly 3 years. Counting incision and drainage of perianal abscesses, I've had 7 surgeries. I've had setons put in 3 times. The medication did not heal my fistula and I currently have a seton in which will prevent the fistula from healing. They are hoping the Remicade,calms the inflammation such that I can actually have a mucosal advancement flap procedure. I see the surgeon again in June.
 
Hi Gaboy,
You sure have been through a lot I feel sorry for us all who are fighting this constant battle.I have the 2 setons in place for a week what the colorectal surgeon told me the setons are put in to hopefully heal the fistulars and it allows them to drain so you don't get abscesses.Wow, 7 surgeries that's unreal I don't know how people work and have to deal with these.I see my surgeon on Tuesday for post op.I am in New Hampshire and it's a pretty day here today but,rain tomorrow have a good day....Christina:)
 
I want to let everyone know about how the Specific Carbohydrate Diet (SCD) has helped significantly reduce the symptoms of my perianal fistula.

I used to have occasional flare ups where there would be huge amounts of pus draining. If I wasn't having a flare up, I would have continual daily drainage. The fistula would be irritated and sometimes slightly painful.

I started the diet about a month ago, and started taking a 3 week course of Flagyl and Cipro. Of course these two antibiotics reduced symptoms to almost nothing, but I've been off the antibiotics for a couple weeks now and my symptoms are very much improved.

I actually started the diet about a week before starting the antibiotics and my drainage reduced to about 10% of what it was before the diet. Then the antibiotics reduced it again to 0%.

But now that I'm off the meds, there has been a tiny bit of drainage, but my symptoms are now almost at 0. I'm hoping that this continues. Time will tell, and I'll let you all know if my symptoms continue to stay away!

I hope this diet will be one of many tools to fix this once and for all. You can find the full diet online - you need to follow it very carefully. Do your own research, but no grains, corn, dairy (other than yoghurt you can make on your own), and you're allowed cheese.

Anyways, I'll post again if things continue to go well.
 
James80 said:
I want to let everyone know about how the Specific Carbohydrate Diet (SCD) has helped significantly reduce the symptoms of my perianal fistula.

I used to have occasional flare ups where there would be huge amounts of pus draining. If I wasn't having a flare up, I would have continual daily drainage. The fistula would be irritated and sometimes slightly painful.

I started the diet about a month ago, and started taking a 3 week course of Flagyl and Cipro. Of course these two antibiotics reduced symptoms to almost nothing, but I've been off the antibiotics for a couple weeks now and my symptoms are very much improved.

I actually started the diet about a week before starting the antibiotics and my drainage reduced to about 10% of what it was before the diet. Then the antibiotics reduced it again to 0%.

But now that I'm off the meds, there has been a tiny bit of drainage, but my symptoms are now almost at 0. I'm hoping that this continues. Time will tell, and I'll let you all know if my symptoms continue to stay away!

I hope this diet will be one of many tools to fix this once and for all. You can find the full diet online - you need to follow it very carefully. Do your own research, but no grains, corn, dairy (other than yoghurt you can make on your own), and you're allowed cheese.

Anyways, I'll post again if things continue to go well.
Click to expand...
I hope they continue to go well for you.
 
I'm still waiting for my consultation with a GI specialist in Manchester (17th June) but since the end of February I've been suffering with recurrent pain in the err, backside.

My doctor diagnosed a perianal abscess on 2nd March. It was so painful! I was off work for a week and put on 30/500 codein and fluoxocillen 500mg 4 times a day for that week. It eased by the end of the week but had begun draining. This continued for several days so I went back to GP. Another two weeks of antibiotics and I was less reliant on pain killers now.

8 weeks on and I'm still suffering. It keeps seeming like it heals but there is a definite long lump there. It begins to hurt again then the process starts again. I've seen two different doctors who have both fobbed me off saying it looks like it's healing well.

There is definite intermittent pain relieved when it drains. It drains daily to every other day and is often yellow or bleeds.

I'm sorry for the details, just so frustrated. I've made the decision to leave my GP surgery and go elsewhere as I have no faith in them anymore. My appointment with the consultant can't come soon enough. I know he won't be able to work miracles but he may be able to tell me what's going on.

On the plus side, I'm not getting stomach pain / upset stomach as often, though when it happens it is very, very painful. I'd say maybe twice a week now, which is better that daily!

Could anyone shed a bit of light on this for me? I know I was diagnosed with the abscess but I'm worried it has developed into a fistula. It sounds an odd question but how do they feel. I sometimes have the sensation that gas is passing through it, like a trickling feeling too sometimes.

Never though I'd be posting stuff like this on the web but I guess once you've been prodded and poked the way I have you lose any shame 😉

Thanks

Andy
 
I'm also intrigued as to how you know it's a fistula.

I've got a really bad fissure and am being referred to a surgeon, but recently I've noticed 'stuff' staining the TP in areas where it shouldn't. Repeatedly. Almost refreshing itself slightly. It's only blood and dirty mucous though. Told my consultant and he didn't seem concerned in the slightest...
 
Don't let it go too far. Back at the beginning of 1992, I had an abscess that they went for three months. It got really deep. They had to drain it twice. I hope the best for you.
 
According to my specialist, in can be very difficult to properly diagnose a fistula. In some cases you can feel a track/tunnel going from the lump in further or deeper under the skin towards the rectum itself. In my case he can't feel the track so I am being put under anesthetic for exploratory surgery to determine where it leads/originates. The hole of mine is extremely small but has not closed or healed over in several months now.
 
Hi Starnett,Sorry your having so much pain an abscess is aweful to have.I have a complex fistula which means 2 tracks coming out of one hole they have yet to fix it.I had a surgery in Jan with plugs and it failed now I have two setons placed which prevents abscess and opens the tracks so it drains.I have to have an advancement flap surgery there is a 50/50 shot on that surgery the last one would be a fistulotomy which there is a small chance it could cut in to the Sphinxter muscle and leave me incontinent.Because they cut the track.Sounds like you have the similar situation as far as a fistular goes I hope you get help soon maybe ask if there are any cancellations to get in sooner.Keep us posted....Christina
 
Starnett have you been diagnosed with Crohn's or UC? There is a guy in Manchester called Professor Carlson who is well known to be good in this area especially anal disease, lower GI Coloproctology etc. Manchester is a European Centre of Excellence for Coloproctology. If you have never had surgery & it's early days, you will be absolutely fine ( I've had 4 ops in this area as I wasn't under good care at first), just as long as you are under the care of a decent consultant. Hope the info about Professor Carlson helps, best wishes : )
 

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