Fistula Feelings- Living With A Fistula for 7 Years

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I thought I'd do a video, before embarking on my quest to India for Kshar sutra, to describe what it has felt like to live with a fistula for the past seven years. It's definitely been difficult, but if you have a fistula, I hope you can find something relatable in my journey (except the duration, I hope!), and know that you are not alone. It is something you can live with, though I hope you also can find a cure. I know how painful and devastating it is. I look forward to connecting with you.
If you also have Crohn's, feel free to check out my Specific Carbohydrate Diet (SCD) and Crohn's Story videos. I hope they could be helpful, and there are other resources in the descriptions of those videos too.
For more fistula stories, check out Norma Johnson on RU-vid, especially "taking care of your fistula" man she did a great job of that I wish she was around sooner.
Ok, take care.
With love,
Erica

Опубликовано:

30 янв 2018

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Комментарии : 103

@joesnow998 5 месяцев назад

I wanna say thank you for being so brave and sharing your story.

@AsphodeliaD 3 месяца назад

Hi. The link between emotional and physical health/ symptoms is very well established and your take makes perfect sense to me.

@terranceengstrom8935 10 месяцев назад

Yup. Thank you for sharing your experience strength and hope. Your story is so helpful for us to hear. To know that I’m not alone in these feelings. I’m 41 and single. Which is fine. But every time I meet someone I could be interested in, I immediately think about my situation down below and maybe shy away from getting to know that person. They said the fistula may go pretty high up through the muscle and having a fistulotamy could risk incontinence. Which would be absolutely devastating. I’m hoping my surgeon can figure this out and I hope you were able to get your felt with after all this time. I’ll check out your other videos to see if there was an update. Thanks again!!!

@halevirginia9523 2 месяца назад

Thank you for sharing your story. I don't have IBD that I'm aware of, but I developed an anal fissure that has now turned into a fistula. This is hell on earth.

@gibaniba 3 года назад

Dam you're beautiful! I had an anal fistula that developed into an abcess as well a year ago... However I self diagnosed myself through the internet and realized I had to get it fixed as possible. Here in Singapore the colon/gastro intestinal specialist will diagnose you on the spot and arrange next day surgery. The healing process took over a month and really hurt but I'm so thankful now that I do not have any recurring fistulas or anything of that sort. I swear that fistula came out of nowhere! I thought it was a hemorrhoid at first.. I can't imagine living with a fistula for 7 years... Hope you will get it fixed, I know it's a terrible thing to go through and the support forums for anal fistula are hard to read. You look strong, God bless!

@HackYourHealth 3 года назад

Thank you Albert. I'm glad you were able to get prompt and effective treatment :) that is great news! I know, there are many horror stories out there it is very sad and hard to read, I agree. I had the fistula healed in India about 2.5 years ago in India, shorty after making this video :)

@jamilm4668 3 года назад

Hi Albert. I'm from Singapore too. Had an abscess two years back. It finally drain by itself and quiet down until last year when the abscess came back at the same place. Again it drain by itself but it develop into a fistula thereafter. Often times there's a transparent or light bloody discharge from the fistula. I live with it. Recently I develop another abscess at another place. I'm contemplating to finally see a specialist to sort out my issue. My reluctance to do a surgery back then and now is the fear of pain after seeing how brutal the surgery is on RU-vid videos. Can u tell me how bad is the incision pain? How long does the pain persist until full recovery? Thanks

@gibaniba 3 года назад

@@jamilm4668 Hi Jamil. Apologise for the late reply. The after effects of the surgery was not that bad as I remember it. I was on pain meds but I did not have the need to take it after the third day of surgery. I believe that I made a full recovery after 3-4 weeks. The only inconvenience after the surgery was that I had to take a sitz bath and wipe extra clean after pooping. I advise you do the surgery as soon as possible. It's been about 3 years since my surgery and I haven't had a problem since.

@limhengleong7020 Год назад

As what she mentioned. Western methods of treating fistula with seton doesn't work. Supposedly to drain the pus but it doesn't, it just keeps the tract active. I had done two setons and sick of it plus now my other side is swollen with abscess. Want to go see doctors but the doctors just couldn't do anything except surgery and setons which are totally useless. Living with fistula for 5 years already.

@pramishachand2491 3 года назад

Our experience is so similar to a certain extend. Thank you so much ❤

@siddharthsharma1620 3 года назад

Search dr ashish bhanot on youtubd to get gud fistula treatment

@federicodipace1710 3 года назад

Thanks for sharing this. You are corageous. And I am sure it must have been a journey. I underwent surgery yesterday and let's see whether we can cure it. Take care of yourself.

@federicodipace1710 3 года назад

I am sure that love goes beyond seton or two. I would not have worried but I understand you were young at the time.

@verduzco55 2 года назад

How are you doing? Did you cure your fistula? I’m getting surgery soon😔

@surjitchana4703 3 года назад

Thank you for sharing your story. I have fistula with no abscess or pus or pain now. There was initially little clear fluid drain though tiny pimples and now it seem healed or closed. As per my doc if there is no pain or swelling, we do not need to do surgery. God bless you

@trendarr 2 дня назад

Thank you for sharing your experience. I’m also suffering from fistula and recently got surgery. It was my second surgery😢 I am in Korea. Actually I couldn’t understand perfectly what you said in this video but I could agree how you felt. I also really hope to get better.

@janvillaroel8620 4 года назад

Thank you for sharing your story. God bless you. Its very inconvenient even if I fart it can be painful

@norma9134 6 лет назад

OMG you had your fistula forever!! You poor woman!!!! Your story sounds like mine in some ways. My drs here didn't care about me one way or another either. I had to do my own research, they certainly didn't seem to care or want to help or even know what they were talking about. I also hated my seton. It was long and made me feel gross...I didn't have the bravery to take it out though haha! Looking forward to seeing more videos. You'll be healed soon and you're great to share your journey with the world :)

@HackYourHealth 6 лет назад

Thank you Norma! Yes, I deliberated for months before that :P Yes, I am ready and glad it would maybe help somebody to share my experiences.

@aushomaptoshuvo3570 2 месяца назад

Hi, I am so sorry to hear the hard time. But i am excited to know about your current situation. Like how the treatment and how do you feel now.

@HackYourHealth 2 месяца назад

Thank you I had that treatment 6 years ago now, no trouble since:) ❤

@silversurfer_gaming 3 года назад

Thank you for your story. I suffer the same exact way. I fully understand the issue of trying to walk and limp hiding the pain. I had a fistulotomy 2 years ago and unfortunately it’s come back. I’m back in the abscess pain

@ranaarshi6301 Год назад

How r u now

@living4muhcats289 6 месяцев назад

same here.. been with crohns for over 11 years now... mostly just using metabolic therapy because theyve let me down so many times and only gave me things to try that made it worse. Tried prednisone, 6mp, immuran and was in the hospital freq it was horrible. Trying to live with fistula :( it has changed my life and they never even warned me that this could be a possibility down the road.. ignorant and neglectful in my case

@JoeChanTV 5 лет назад

Useful info 👍🏽

@soniapinto5654 2 года назад

As an indians living in the US and struggling with fistulas, I must say United States hasn't done a great job in treating Crohn's or fistulas since they work with pharma companies to sell drugs without actually trying to find a cure for patients nor are they interested in finding a cure. Also, the food we eat on a daily basis is probably one of the causes of Crohn's itself due to highly inflammatory ingredients and being highly processed. So glad you found a cute to yours!

@HackYourHealth 2 года назад

I 100% agree with you. It's really a shame. Thank you and I'm glad you are aware of this! I hope you can get to India for your fistula too but ideally I hope te treatment also is practiced in Western countries too so people can access it at home. Good luck! :) 💜

@soniapinto5654 2 года назад

@@HackYourHealth thanks! And thanks for sharing your experience as well. Hope you continue to stay healthy

@amygreen1041 6 лет назад

Omg you have balls to take your seton out!!! I wanted to do that so bad

@thedashitoutshow 3 года назад

Mines happen to fall out

@niveditapandey6377 Месяц назад

Hello dear... Are u fine now ? Is it completely cured ? Was the ksharsutra treatment you went through very painful ? pls tell me. I am from India only and have fistula since 1 year. I really fear surgeries.

@jiro7446 3 года назад

Thanks for sharing you story with us am going threw it for a few months. Where did you go to get it done in India and recommendations would be great

@HackYourHealth 3 года назад

I went to Dr Ramesh Bhat in Bangalore. I like the indiranagar neighbourhood and nearby areas best, so I stayed in an airbnb near MG mall and took the metro over to vijiyanagar (neighbourhood) where the doctor is each day for the dressing. Many people stay closer to the doctor but I moved after one month to indiranagar area and liked it much more

@jiro7446 3 года назад

@@HackYourHealth thanks so much for that info. I also joined the Facebook group as well great people. Keep safe and healthy

@Payang13ify 23 дня назад

When i developed fistula January this year i was in an emotional turmoil...i was seeing news and video footages from Gaza..i was crying a lot almost every night during the entire holiday season..i was extremely sad, shocked, disappointed, angry and helpless...now I'm not saying this is the reason why i got this illness but in retrospection I'm sure this emotional state mustn't have helped my body. I'm still waiting for my seton attachment surgery.💔

@vitran8331 5 лет назад

I'm having a fistula too, Have a surgery a year a go, doctor cut the injected part but It seems not work at all, don't feel any serious pain yet, but the fact that It's draining again makes me feel really worried, I'm gonna meet doctor very soon.

@HackYourHealth 5 лет назад

Hi Vi, Sorry to hear that! Good you aren't in pain tho. Yes, it is quite frequent for fistula surgeries to fail, unfortunately! That is why I chose kshar sutra- it has by far the highest success rate. Best of luck! I hope you have a resolution to your problem soon.

@snids3591 2 месяца назад

Getting the surgies is counter productive I promise, I have 5 fucking holes and no one gives two monkeys about your ability sit, walk or sleep !! I will be make noise on the condition i tell you. Til my dying breath. Imagine working two hrs after a surgery where you can’t sit. Bonus points, armpits and groin area too ! Surely it’s spreading doctor… here’s some antibiotics. But thank you, another option provided by doctor humanity

@snids3591 2 месяца назад

Sorry for the language currently 3 days with 6hrs sleep, but 7k people are lying.

@drydenkleesamaniego7353 2 месяца назад

I developed fistula after undergoing LES for my fissure, i consulted the doctor and advised me to undergo another surgery i opted not to now for a year i still have this pain but tilerable and sonetime theres small amountbof blood dripping especially if i have a watery stool..i shave fear what will happen in next years to come..

@nrtnrt6676 5 дней назад

I had a fissure and LIS but i now get really inflamed inside. So much so its hard to pass stools. Just started pelvic floor therapy as my sphincter is incredibly tight. I get no pus at all very very rarely do i get bleeding. Could this be just inflammation due to tight sphincter or a fistula?

@johnsilva4255 5 лет назад

Hey i just started watching your videos! I have Seton drains in right now ! And I’m always in so much pain ! I also have Crohn’s and it has been so hard on me , I’m 18 and I was diagnosed when I was 13 but now my biggest problem is this fistula ! It causes me so much pain and I’m in school and I’m constantly in pain at school , I felt like no one knew what I was going through , can we please talk ? Somehow ? I need help

@HackYourHealth 5 лет назад

Hi John, Sorry to hear what you are going through. I was 19, and also in school with the fistula and understand how horrible it is. I think the best way to get in touch with me is to join "Kshar Sutra For Fistulas" on Facebook and you can PM me, or can email me I don't know if I can write an email in the comments, but there is one posted in my channel description.

@johnsilva4255 5 лет назад

HackYourHealth I’m just seeing this ! I’m so glad you replied, if you could email me it would be perfect , how could I get my email to you ?

@HackYourHealth 5 лет назад

Hi John, I changed the settings- look under "About" on my channel page and you can reach me at that email address!

@76roshanitandel47 3 года назад

hey I hope you are fine now Did you go for kshar sutra surgery in india? and how it is going now do you still have fistula?

@HackYourHealth 3 года назад

Hello, thank you! I am fine now, no more fistula :) I went to India 2 years ago now, and the treatment took 3 months and was effective

@karimarie2831 3 года назад

Thank you for sharing . I’m waiting for my surgery . I’m little worried about it coming back

@verduzco55 2 года назад

Hello how are you doing after your surgery? I’m getting surgery and I’m super scare.

@karimarie2831 2 года назад

@@verduzco55 Hello ! Im feeling much better . I had my surgery it was very painful first couple of days of recovery . I did have a hard time walking the first week of recovery after my second week I was fine and went back to work .

@verduzco55 2 года назад

@@karimarie2831 thank you I got my surgery two weeks ago. I had a laser treatment for my fistula. Hopefully it heels and never comes back.

@smellyfinger23 5 лет назад

Hi, how are you? Hopefully great, any update about the surgery in India, how’s it feeling?

@HackYourHealth 5 лет назад

Hi Jeremy, I did a series of videos while I was there, they are in a playlist on my channel. It all went well, and I have been home for almost a year now with no further issues!

@smellyfinger23 5 лет назад

HackYourHealth congratulations!! Thanks for the info!

@deeb6569 2 года назад

I agree with you!

@bavalanbarath9588 8 месяцев назад

🙌same.......feel I av done surgery, but still if I eat spicy foods, I'll feel a lump then it'll go away on its own..... suffered a lot......

@salvadorestenor7611 3 года назад

Hi im here at philippines.. yesterday the doctor said i have anal fistula.. im worry im 40 years old and single.. but thanks because you have in 7 years?. So im not worry now.. thank you

@sweetiexoxo8670 5 месяцев назад

My mother has a entrovaginal fistular, the surgery to repair failed. They have told her she just has to live like this and it is rough as its very high output. If anyone here has any tips on how to manage it, cream to use or anything i would be so grateful. The healthcare team have absolutely no idea. Currently she is using a menstrual cup to catch the flow. Her skin has broken down in her private area and is very painful. If anyone has any advice I would be so grateful. God bless you all & god bless this brave woman and this amazing video. ❤

@HackYourHealth 5 месяцев назад

If you have the means to pull together, I would recommend seeing Dr. Ramesh Bhat in Bangalore. If she is curable, and she most likely is, he will give her her life back. In the meantime I found sitz baths most helpful. I hope she will heal and all the best to you and your family 🙏

@sweetiexoxo8670 4 месяца назад

Thank you so much for getting back to me. I have brought a sitz bath for mum portable as she is in the hospital and I will contact him. She's very sick. The output is just so much. Thank you so much for replying ❤

@nrtnrt6676 5 дней назад

@@sweetiexoxo8670 Pranicura is a good cream?

@umakumaravel9329 3 года назад

I hv this past 17 yrs ...I'm from Malaysia...I am mom of 2....just I did sinnogram and did lazer to burn the track ....I hope it won't be back again....tq for u sharing ...u tc ...try to eat tumiric and need everyday. Vanakam

@ranaarshi6301 Год назад

How r u now

@tysons8759 Месяц назад

Don’t live with a fistula like I did for two years. Get the damn surgery. It’s an outpatient procedure and not that bad at all. I was out of surgery, on a plane, and back home in less than 5 hours. I was so afraid of fly home the same day I was having anxiety attacks leading up to the surgery. It was a waste of time. I felt no pain leaving the hospital and felt no pain till two days later. Advil every 6 hours did it for me. It worked fine. I was so afraid of the pain during recovery I had my surgeon prescribed oxycodone just in case. The surgeon prescribed me 12. I didn’t take one. I was tripping out of my mind. Don’t let being afraid of pain/recovery stop/postpone your surgery. It’s not that bad.

@calebdonnell2633 Год назад

I’m going through this right now unfortunately. So little answers in terms of dealing with this. Could you or anyone else going through this be able to tell me how you can exercise adequately with a fistula present?

@HackYourHealth Год назад

Epsom salt sitz baths with the hottest water that is comfortable multiple times per day or as needed is what made it possible for me to function.....

@HackYourHealth Год назад

I'm sorry you are having the same problem I know (as do many others who find this video) how awful it is but it is possible to heal

@HackYourHealth Год назад

You can also do stuff like push ups etc that tone the core without much leg movements 😂 others can also suggest things it's a great question!

@calebdonnell2633 Год назад

@@HackYourHealth thank you for this. These past few months have been the hardest period of my life so far, I tend to feel so alone as this condition is not talked about much. I’m glad you have at least got through this and hope to do the same myself eventually.

@HackYourHealth Год назад

@@calebdonnell2633 I understand. You will get thru it Are you in the Facebook group kshar sutra for fistulas? It's really helpful even if you don't go that route, you will at least be able to connect with other people who understand

@dustinmusgrave3934 3 года назад

I absolutly hate this! I had a seton drain a year ago. Was good for a while now its a up down thing. It will imflame then drain. Now its chronic draining. Its depressing asf. And i feel like i cant function

@HackYourHealth 3 года назад

I understand it's very difficult Take good care of yourself, and do lots of sitz baths, if that is helpful to you. If you live in Toronto there is a good treatment in Mississauga at a Chinese doctor...I hope wherever you are you can get a good treatment soon! And until then do your best I know how hard it can be. I'm wishing all the best for you.

@RK_2495 Год назад

@@HackYourHealth hi, thanks for putting this video up. I’ve had a fistula for a few months now. Im in Mississauga, could you tell me where this doctor you suggest is? Thank you

@HackYourHealth Год назад

@@RK_2495 possibly also Mississauga? Lucky you! (To be close by). I will find the link

@HackYourHealth Год назад

@@RK_2495 this is the place: www.naitcm.com/

@RK_2495 Год назад

@@HackYourHealth thank you! Also, is your fistula cured now? And did you go to this place before, if so how was it?

@Steve-oh9tu 3 года назад

Going through the same problems with the doctors for seven years as well. I’ll get an abscess and go to the hospital and wait for two days to get surgery and then have it end up draining on its own. This delayed treatment has caused a fistula for me. I’m extremely upset. And the doctors could care less because it’s just your butt.

@HackYourHealth 3 года назад

I am sorry to hear it is like this for you as well. I think having a fistula is almost worse for the mental state than the physical! Because every person seems to struggle this way and the medical system in western countries, you are right, is very neglectful. It is a sad thing. I think though that there is hope for you, and for everyone. Are you Canadian? There is one TCM doctor in Mississauga who treats fistula patients with great success. Otherwise, the best treatment I know is Kshar Sutra, which so far is only available in India. I know with the state of things getting there may be a daunting task but it is a journey well worth it! It gets better. I hope it won't be long before you are free of this problem. Even after years, it can still be healed.

@Steve-oh9tu 3 года назад

HackYourHealth , in Florida USA. They are probably going to want to do surgery.

@ranaarshi6301 Год назад

@@Steve-oh9tu how r u now

@ranaarshi6301 Год назад

@@Steve-oh9tu so u are completly heal or not?

@ranaarshi6301 Год назад

@@Steve-oh9tu go indiaa there is best treatment of fistula

@brianm6105 5 месяцев назад

What county are you in? Your story sounds like socialized medicine. In the U.S., you just google GI doctors or colorectal surgeons, and you call them, and they can get you in within a week. If not, you call another one.

@snids3591 2 месяца назад

Yes brain 7k human begins didn’t consider walking 5mins down the road. India just more of scenic route. Have some grace

@jchogara563 4 года назад

Fistula is same with fissure??

@HackYourHealth 4 года назад

No, a fistula is a hole/tract with two openings, whereas a fissure is on the surface.

@deepind8151 3 года назад

ofcourse not same I have a fissure

@sohailahmad7230 3 года назад

Hi dear, if you have any research on treatment of anal fistula through fibrin glue kindly guide me as soon as possible please.

@HackYourHealth 3 года назад

Hi Sohail, I don't have any experience with that treatment. The safest and most effective treatment i am aware of is kshar sutra, and there are many others which have varying risks and advantages. There is a fistula support group on Facebook where people may have more experience. Good luck! :)

@sohailahmad7230 3 года назад

Thank you for your early reply, kindly mention the link of Facebook group.

@HackYourHealth 3 года назад

@@sohailahmad7230 I am not in the group, but if you type "fistula support group" into the Facebook search bar you will find it