I have fistulizing Chrons diagnosed 3 months ago. I just found out i have a perianal fistula. I appreciate this video cause i could relate to a lot of it. Thank you.
Thanks Sydney. I live in Napier New Zealand My journey with perianal fistula was over a period of 10 years and many surgical procedures. The failed cutting Seton was a real low point. I was finally fortunate to have a young surgeon tell me that the many previous surgeries were resulting in my becoming incontinant and that he wanted to break that cycle of treatment. He contacted a renowned surgeon Professor Frank Frizelle in Christchurch and arranged for me to travel there. The professor operated and called it a "flapodectomy" where he cored out the fistula and secured a flap of lining then he reconfigured the sphincter from a ring to a "banana" shape. This was in 2003 and thankfully I have been free of any further problems since that time and have lived a normal life since. Your video conveys the pain and loneliness really well. Thanks again
Wow that's incredible. How amazing that a young surgeon had the knowledge and foresight to contact Professor Frizelle. I have never heard of a Flapodectomy. I will look this up. I am delighted to hear you have been free of Fistula's since. That is fantastic. Thank you for watching sharing.
I am trying to holdback tears just watching your video ! I am really struggling to cope with it, mine started 4 months ago & waiting for my first surgery and a seton. It is so comfortable to hear you say how painful it is as I can't explain to anyone or no one understands what I am going thru. Wish you the best of health and thank you for this video.
Hi. Yes the pain is dreadful and as you say people don't understand, people try and be sympathetic but the reality is they don't understand the pain. I am so sorry to hear you are going through this. I really hope the Seton can give you some relief from it. They do work well for some people, they just didn't work for me. I hope that surgery comes soon for you. If there is anything else you would like to know then please ask.
I could say the pain is as if someone sticked a gloving iron in my ass. And sometimes it can take up to a 4 or 5 days before it pops on and brings instant relief... Once i ended up in hospital and they made an incision and i was let home next morning. Its a fkin nightmare really...
@@Psyytrance00 so sorry to hear your ordeal Daniel. I hope you find some relief very soon. I had my seton fitted in December and since then I have ended up in A&E with infections over 5 times. Now finally feeling a little better but still have a lot of abscess still coming out ! Not sure how long this will last. I wouldn’t wish even my worse enemy to suffer this much 😔😔😔
@@atifrana3448 Sorry to hear that. Yes,its a nightmare,as i said. I had it over a 100 times i believe. I had to quit drinking completely and then for nearly 2 years i was alright. Then it came back in full rage. As it wanted to charge me for all that time i was fine. There is a laser surgery,which burns fistulas and they are the main reason why we get absceses all over again. But its freaking expensive ofcourse...
I have a full ileostomy, with removal of all of colon and some of small intestine, as well. Had Ulcerative Colitis, rather than Crohn's. My fistulas and abscesses came way after ileostomy. My problem is that surgeons say I am not a candidate for surgery or the things you mentioned, due to other medical conditions and my advanced age. Doctor just told me to press on abscesses to help them drain, take antibiotic, and go to ER if I to think bladder is blocked. Follow-up surgeon said antibiotics are not helping, either, so I could stop taking them. I have complex fistulas and lots of abscesses, which are draining pus and, occasionally blood from, at least, 5 openings in butt cheek, as you explained. Those openings look awful and like they should hurt, but nothing hurts, so far. Also have clear drainage coming from anus. I wear panty liners, etc. At this very moment, it feels like the abscesses have completed draining, and cannot be felt anymore, as they always were evident before. I don't know if I should feel good about this, or frightened that they are not draining? I know you said you are not a doctor, but I would still value your opinion.
Jeez! Thank you for being so honest again. I found you because I have anal cancer, a fistula with an abscess, which will need to be stiched up before chemoradiation therapy and then a temporary stoma and bag fitted during treatment. Much appreciated for all the info, your diagrams were absolutely fine and I understood perfectly. I’m in awe of your positive attitude. 👍🏻👍🏻👍🏻
Man. You took the words right out of my mouth. I don't even know you, and you've described so much of my time these past years. I am crying as I type this. No one understands. Thanks for sharing. I really appreciate you sharing. Blessings and healing, mate.
Hi. Sorry for the delay in replying. It's absolutely awful isn't it! So many people just don't understand the pain and suffering, and it's so hard to find people who do understand. No matter how much people live and care for you they don't understand as they have never suffered, it's not their fault they don't understand, but it makes it hard for us. I wish I could take it all away for you.
Take care. I was diagnosed last week and went through two surgeries. you must be strong and take in information carefully and make descisions objectively about your care. diagnostic tools such as CT scans and ultrasounds can do alot, but it's a journey to find out about your particular situation and become your own advisor on what is best for your care.
i’ve been going through fistulas for over a year now, just recently possibly have a diagnosis on Crohn’s, you describe what we go through perfectly and explain it thoroughly and better than some doctors to you, thank you so much for this video and the information you have no idea how much it’s helped me.
Hi Rebecca. Thank you for watching and leaving a lovely comment. This is why I do this channel, it is solely here to help people. Fistulas are absolutely horrific. If there is anything else I can help with please ask.
Thank you. This has been extremely helpful. My sons recently had surgery for abscesses and has three setons. He was diagnosed 10 years ago with undetermined ibd. The surgeon said 100% crohns now. This has helped me to understand more on what is going on. I look forward to watching your other videos. Thank you for doing these videos!
Thank you for sharing your story! My mom has been dealing with this for the past 7 months and it’s absolutely horrible. It’s nice to hear that she’s not alone and to hear how well you’re doing. You deserve all the best things life has to offer ❤
Thanks Paul. I have been on a long journey with Crohn's as have many other sufferers. So yeah sometimes the emotions do creep into the videos. But that's me, I always deliver with honesty and I don't hide anything. Thanks for your kind comment.
Thank you for sharing your story. It was very informative and I think it far more beneficial hearing it from a patient rather than the professionals who have never experienced it. I am 29 and currently being treated for my 1st Perianal abcess. Had I&D surgery a week ago and been getting dressing changes and packing every other day and the surgeon said he thinks there is a fistula. I had a colonocopy a few months back which the consultant said showed signs of crohns disease (runs in family) but not been officially diagnosed yet. I am with you when you say the pain is relentless and unbearable and I don't think people fully grasp it when you explain, I was on the highest dose of morphine and it didn't even touch it. Hopefully I can make a full recovery and get a full diagnosis. I may get more in the future but atleast I can be prepared and maybe through treatment and diet/lifestyle changes prevent a couple. Either way, this will be a life long journey and we will see what it throws at me. I
Thanks for watching and leaving a comment. It's interesting as to whether Crohn's is hereditary. It would seem so in your family. I am the only person in my family with Crohn's. However, Cancer has affected so many people in my family. I hope you get the right level care and I really hope things get better for you soon. Nobody ever fully understands the pain unless they have been through it. It is awful. Wishing you all the best.
Thank, you, thank, you!!! I had rectal cancer and developed fistulas at the connection point of the J-pouch. 6.5 yrs ago and last December the doctors finally told me what a fistula is and described it!!! They told me weeks post-op. Hello i was heavily medicated!!!!! And my spouse was to busy living her own drama to help me understand! She os gone now… and time for me to get back my life and live my best life. Yes, your video helps me see that I must get the colostomy! The ileostomy freaked me out…
This is an outstanding and very helpful video. Many thanks to you, Sydney. I am 74 years old now and have had Crohn's since I was 18. I finally had to have surgery -- an iliostomy -- six years ago. I was in terrible pain had lost a huge amount of weight, so I really had no choice. I thought that having iliostomy surgery would be the end of the world, but it actually turned out to be true life saver. I learned to manage having an ostomy bag and my very supportive wife and good nurses and doctors got me past my initial fears. I later developed Crohn's fistula disease, which is no picnic, but I'm learning to manage that as well, although it is an unpleasant struggle at times. I can do pretty much everything I need and want to do and I'm enjoying life much more that I did pre-surgery, that's for sure. So please don't give up hope and always thank your family and friends for their love and support. I wish you all only the best I hope you find that there are better days yet ahead
Hi. Thank you for watching and taking the time to leave a comment. Having a colostomy gave my life back, it truly was life changing for the better. Thankfully I don’t suffer with fistulas anymore since having a colostomy. I did this video to help others. I have fantastic support around me and my wife is amazing too! We are blessed to have such great people around us when others suffer alone. All my videos are here to help as many people as possible. I am glad to hear you are doing well and again thank you for watching
I had no idea how terrible things can get. I’ve had some issues, but nothing like this. It’s just about the worst place to have problems, I think, because of the faecal matter, and the pain. You must be very brave and I appreciate very much the information you calmly and clearly gave to us all. Thank you.
Thank you for your story and honesty! It's refreshing, especially since experiencing these issues can push folks into isolation. I am sure it was hard to speak about this, but it goes a long way for anyone who can identify with these issues. Kudos to you and I am glad that you've taken steps to improve your situation, and that it has improved.
I won't be sorry for ur situation because u r a true champion, u fought with it. U r a warrior. U learnt to deal with difficulty. U have went through a lot. But definitely u will get a good future. Please take care of your self and be strong. ❤
Your video is so honest and brave and informative. It’s not an easy subject to talk about! I live in Namibia, got the crohns diagnoses but have the horrible abscess which swells from a fistula. Here the private surgeon said I had a choice of going to state hospital and dying or I must find millions to remove my bowel and live on steroids rest of my life. So am very much alone trying to manage symptoms via diet amd a live culture probiotic. So hearing your voice makes me a little less lonely. Thank you
I feel your pain brother. My case is nearly identical to yours. I have not been good about managing this with "medical professionals " whom I've grown to distrust. I've opened myself up several times and to date I refuse biologics. I do best when I eat chicken,potatoes and avocado, zero sugar, zero dairy, zero bread/pasta(gluten). Only shitting every other day helps as well. I used to weigh 190lbs. I'm now 155lbs. Dealing with multiple fistula and recently another abscess. All the stress and worry you're talking about I understand completely. I told my wife the other day that it won't be long and I'll probably be shitting in a bag. Which, at times seems preferable. Thanks for sharing your story.
Thank you for watching. Yes I certainly understand your pain, it is strangely comforting when you know someone really understands. But it is generally people who have suffered the same and i wouldnt wish it on anyone. Having a bag was a game changer for me.
Very informative. I have recent diagnosis of Chrohns and psoriatic spondylitis. Have had peri abscesses over the last decade and never realized the severity of them, as I always had them drain and resolve(?). Would have another a few years later and used sitz baths the last couple of times. Read that seton tubes don't usually work. Because I'm on Biologics IV q6weeks, I realize sepsis and infection can be very dangerous with these. Thank you for all the information. Have a great day!!💖
My god perianal abcess. I had one in January! You are right, I couldn't believe how painful it was. At one point I literally started to shut down. The doctors ignored it and said it was a cyst!? Gave antibiotics and over the weekend. Wow. I couldn't walk as it was, but after the weekend that was it. Rushed into ER and removed. They did it awake and it smelled pretty gnarly. The pain though. Damn
Hi sorry for the delay in replying. Yeah they stink don't they! Bloody awful. A number of times I got sent away with antibiotics that didn't work. Once I had a few I would go to the ER and tell them what they needed to do! Thanks for watching.
@@sydneystoma385 no worries. Unfortunately mine is still draining... They suspect I have a fistula, so had an MRI and waiting for the results. A holes can be such a pain in the proverbial!
I was diagnosed with Crohn’s disease 9 years ago, I am currently in hospital waiting on surgery I have 40cm of inflammation and a stricture in my small intestine, which I need removed & possibly will need a stoma, over the last two days I feel like I have an abscess on the cheeks of my bum it stings so bad, I’m in so much pain, this video was so helpful! I’ve subscribed to your channel! Thank you !
@@sydneystoma385 hey I just came back into hospital on Tuesday the 18th and had surgery that evening , it went well and I didn’t need a bag, I didn’t mind either way whatever needed to be done I was ok with, I had a really rough day yesterday with the pain but so much better today! Getting home this weekend my kids will be delighted as there so small, Im hoping I can get onto a new medication soon and maybe now we will get my crohns under control again 😊 love your videos! There very helpful thank you 😊
You have just defined my life for the last 4years . I have a Stomach with 10- 15 fistula in my butt crack and tummy . I hurt so bad I have to walk with a walker . Dr says I can have no more surgery, they done all they can for me . I can't sit more than 20 minutes so I'm basically stuck in my bed .
Sorry for the delay. I am sorry to hear what you are going through. I have had to use a walker before so I understand what that is like. They can't do anymore???? Really??? That cannot be right surely. Have you been somewhere else for a second or third opinion? I feel for you I really do.
I have Crohn’s Disease and due to it I have a colovesical fistula which is a form of enterovesical fistula and goes from my colon to my bladder. I have a loop ileostomy to divert the fecal flow from going into my bladder. I will be having surgery to remove the fistula and resect the bowel. The pain and UTIs have been awful so I am hoping that the surgery will be soon and remove the issue. The original plan was to reverse the ostomy, but with all of the adhesions and other complications, I may have a permanent ostomy.
Hey Kim. It's such a horrendous disease (not that any disease is good). We go through so much. My surgeon told me having the permanent stoma was the best decision I had made, they said they were never going to be able to fix all my fistula problems. Wishing you the best. 💙
Hi, thank you for such a open and honest video. I was recently diagnosed with Crohn’s after a sudden flare up and trip to the ER. I’m on prednisone and Asacol and am now dealing with what feels like a piece of glass stuck 👇🏼 it’s excruciating when having a bm and pain, discomfort lasts all day 😞 I don’t have any blood/pus, just pain pain and more pain. I’ve been doing sitz baths regularly and was applying calmoseptine but didn’t really do much for me. I’m at a loss. Not sure if I should go back to the ER. Any suggestions or tips would be so so appreciated ❤️🩹 I don’t know whether I have a fissure, an abscess or something else.
Hi NiniZ. So sorry for the long delay in replying. RU-vid is only just telling me this comment is here. I am so sorry to hear you are suffering. The pain truly is dreadful. I really feel for you. I like hot baths with salt in them, and I would stay in the bath for at least an hour. It always felt like it helped, but it's only short term relief. Prednisolone is a good steroid and hopefully you are seeing some benefit from that now. As your comment is three weeks old, how are you doing now?
@@sydneystoma385 hi! Thanks for the reply. Fortunately, I healed the fissure at home by taking multiple sitz baths, continuing on prednisone (which I hope to never go on again!), and adding a good and safe amount of fibre to my meals/shakes. It’s a struggle, every day it’s something different, especially now that I’m tapering off the prednisone. Thanks again!
Thank you for this! I’ve had the same abscess cut open three times now, and today my doctor found a fistula.. he wants to put a seton in. I am scared to death for my future. It is so «nice» to hear you say how painful this is, cause noone I know can ever understand.. I feel my life is ruined😭😭
Hi Karina. It's so difficult to explain the pain to people who have never experienced it. I was convinced people didn't believe me when I tried to explain how bad the pain is. I had many Seton's, they can get uncomfortable, I always found hot baths helped reduce the discomfort after a long day. I completely understand you when you say you feel like your life is ruined. I tried not to let it run my life, but it does. I had to know where every toilet was when planning a day out, I was ever conscious about leaking through my clothes, walking became really painful. I had to use ladies sanitary towels for the leaking from the fistulas. It is just barbaric. So I completely get you. If there is anything I can help with just ask.
@@igorkarasik6273 I am still waiting for my seton operation in november. I am really not looking forward to it, but I guess I have no choise. I have heard both good and bad stories.
It sounds like your abcesses really got out of hand. Do they make you wait for surgery in UK? I've had a few perianal abcesses. Each time I call my gastrointestinal surgeon, send him a picture, and I came in that day and he drained it then and there and gave me antibiotics, all well before it got nearly as large as yours.
Hi Peter, thanks for watching. It was obscene how many abscesses I was getting. It really was out of control. The majority of the time yes I would present at hospital and within 24 hours I would be having surgery. This was after having many battles with the Emergency unit who kept trying to give me antibiotics rather than drainage. In the early days I would take their word for it and go home with antibiotics and suffer horrendously. A number of times the abscesses burst themselves, the mess and small was horrific. The antibiotics never touched them, so yes they would keep getting larger and larger. In the end I would go to the ER and tell them what they needed to do. My surgeon is fantastic and I would tell the ER doctors to go and speak with my surgeon about what needed to happen if they didn't believe me. They would always come back and say "yes you are right let's get you to surgery." 😂
Hi there. Here also a patient with crohn and fistula. I had 13 surgeryes untill now. Every month i go, they clean inside and go back home. Now i am hoping the doctors will use the stem cells ,to see an improvement. I am the only one who doesn t complain about the pain ? I am a cleaning lady, working 34 h weekly and no pain...
I had stem cell and that didn’t work for me, the reason I had so much pain was due to the amount of abscesses I was getting in the fistula tracts. I am really pleased you don’t suffer pain and wish you well with future treatments.
What does it mean that it just starts to track? What's causing a tunnel to form? what's it made of? Wouldn't the path of least resistance be the colon? What causes these areas to make tunnels?
The track is generally the tunnel it creates. Why do they form? What causes them? I wish we knew the answer. Most of them start from the colon and work down, hence they get infection because poo will come down them from the intestine.
Fistulas can develop anywhere, I think. They can occur from a cyst, connecting to another cyst, for example. I do not know, I am not a medical person, but maybe they form because the infection is so severe is eats away at healthy tissue until that too becomes the fistula. I think I shall Google the whole thing. So many people suffer from such things, such as pilonidal abcesses. They are abscesses occurring in the anal region and can be terrible. Such suffering.
@@sydneystoma385 I have to have a ride on my ebike later to get used to riding It again for the journey to work tomorrow, I just wish this wind and rain would sod off though
@@sydneystoma385 Also I have a grab bag with spare bags, wipes and adhesive remover at work in my locker just In case I need to change my bag and I cannot get home
Same here. Got my first abcess after starting biologics for over a year. Gastrologist isn't doing anything to help. Appointment with dermo. Question should I stop biologics? Crohns Dx for over 30 years. I know that one of the side effects are potiential of increased infections. Antobotics has helped but leary of Biologics. It hasn't stopped my Crohns flares.
5 months ago I visited the ER in severe pain 5x by ambulance. Sadly the surgeon said it was conversion disorder. I ended up after 2 weeks in pain going to ER dripping in smelly mucus and blood. They finally believed me. I had emergency operation was told it was a massive abcess. I was in hospital 3 days to get white blood cell count down. I have a question since then I have a bm once an hour. I am loosing weight 57 lbs in this year. Exhausted and I needed anti depressants. My surgeon wants to do a fistulectomy in 3 months. I don't want it I heard ppl keep the seton for years have anyone heard same.
I had setons but they did not help me, yes you can have setons for years and if they work then that is great. I would try setons first and give them a chance, but if after a year there is no difference then i would take the surgery.
@sydneystoma385 I'm not feeling pain or notice discharge since after first month. But then I shower 2x a day so I may shower it off. The seton is fairly comfortable I've only noticed a increase in bm up to 8 a day some weeks and a decrease in appetite. I have to revisit the surgeon in January and he will make a decision then. Thank u for the advice appreciate it.
8 bowel movements a day is not nice, you must be getting sore. I found with setons a nice hot bath was great. I am sure you know this but please keep you fluid intake up if you are going to the toilet 8 times a day. Yes food is important but fluids are just as important.
Thank you for your videos! thats is very helpful to understand what to do. i am sorry, did you have only terminal ileum affected by crohn or other area also?
@@sydneystoma385 , i understand( i mean if i get remission in term ileum would it be possible to live with seton in complex high fistula? or term ileum remission does not mean that fistulas wont make any infection/abscesses? if i dont have crohn in other parts. doctors do not give me any forecast, do not know how to live
Hi sorry for the delay. I was often classed as in remission in terms of the ileum, yet I was constantly getting the abscesses in the fistula tracts. I had numerous Seton's and they didnt work for me. I had complex fistulas and in the end there was nothing anyone could do about them.
@@sydneystoma385 thank you for explanation..my crohn started with abscess which transformed into complex fistula and new abscess. at the moment i have seton in it. how do you think, if there would be no new abscesses is it a good solution to live with seton for years? what did doctors say to you? sorry for some many questions, but feel my life is ruined...nobody can understand pain i felt after surgeries. i don not really understand what my strategy should be in such a case...
I had an abcess that had to be cut out of my bum about 2 months ago, it was bad, especially because they have to pack the would for 3-4 weeks after the suregery, im not sure yet if i have fistula's but im praying that i dont
My week at work was brilliant, £2 extra a hour, when I had the stoma operation they told me what I can eat, I did laugh as I do nutrition at work and we devise different menus for our residents some are diabetics some are gluten free and some are lactose intolerant, so when the doctors told me what I should eat I simply said I know as I am a chef who knows what to do lol 😂
@@sydneystoma385 I just thought you have read my information and seriously you are telling me what to eat lol, when I had something to eat it was the soft diet, good god I prepare this stuff at work and now I am eating it, I did think my life had ended at the time 😂
@@sydneystoma385 I am so glad to be back at work, the welcome I got was amazing, I am still on the chemo tablets but no side effects so the doctor said If you are ok get back to work so later In the day I phoned the manager up and said I am ok to get back, next week I am back to my 8am to 6pm shifts, last week i was doing 7am till 3pm 5 days a week I do prefer my 4 days a week as I see my dad to check If he Is ok when I am off, he is 92 and still has all his faculties he is lost without mum as she passed In 2021, I am trained In mental illness, my mum had ahzhiemers and her health went down very quickly, I did community health and social care from 2014 to 2018 but when it is a loved one it is a completely different ball game, at work in a care home I got a senior carer when i applied for the job they knew I was already a qualified care home chef so I got the chef job In a instance better hours and better pay
I spent hours to understand it, I only ended up feeling sick. I have done three times surgery on preanal abscess, can I hope it is not fistula? I am scared honestly
Had a perianal abcess year and ahalf ago and just got one again a few weeks ago went to doctor and it already drained on its own and they prescribed me antibiotics and now i think its forming into a fistula but i dont have any pain going to thw doctor again soon 😢
If you are having perianal abscess regularly there is a strong likelihood you do have a fistula. I hope that is not the case mind you. Glad you are not having pain but certainly worth getting back to the Dr for.
Im having anal fistua but dont know if its abcess the pain is something but im scared of undergoing an operation cos someone said its a 50-50 chance. Im from nigeria.
I feel for you brother i also got my first perianal Abescass it's hurts like hell it popped itself hoping it doesn't develop fishtula can you give tips on how to care
It's difficult for me to offer advice because no matter what I did to try and care for that area I still got lots of abscesses and fistula. I would say hygiene is probably the best advice, keep it clean and regularly check that area throughout the day. Hot baths used to help ease discomfort.
@@krk341 thank you for your concern, however I have Perianal Crohn's and two complex Fistula with Setons and had countless operations and know what works for me personally. All the best to you 🙏
Hi. Sorry for the long delay in replying. Abscess removal and drainage is painful after surgery for a while. It all depends on how much has to be cut out. But the pain is bearable and doesn't take long to subside.
First one i had in 2016. After that i had atleast 100 if not more. Worst pain you can imagine. You can't sleep,you can't walk,you can't sit. No medications helped me and i was going insane. So much i wanted to take a knife and cut it myself. Some nights i had 1 hour of sleep,if that. Please people,if you didn't experience it don't laugh to others,as some people laughed at me . Pain is so intense, its a nightmare.
@@meliodas2690 There is a laser surgery that basically burns fistula,but it is expensive ofcourse. Other than that,i didn't find a way to numb the pain . You can just hope apsces will pop on its own or you must go to a surgery that will just release you of pain,but it won't solve the issue. Which is fistula,chronic condition.
I'm feeling yuk since my fistula formed after an abscess. Had seton replaced and again im feeling yuk. So I think something else hidden. Oh yeah perianal abscess feels like you are dying. They missed mine to begin with. Vile
"Absolutely diabolical, horrendous pain" Man when i was waiting for my first surgery, i said to my wife "babe if we were on the Oregon Trail, youd have to shoot me" She rolled her eyes and said i was being dramatic but man, if you had no treatment, youd want death. Its awful.
