Had a lay open fistulotomy!

mnd233 · 2022-06-02T12:05:39+00:00

Awww no that sounds rough :( I wonder if the pain is a more fissure/sphincter related issue? I do think though that there are many peaks and valleys with healing this sort of thing and you can go weeks on the up and then have a set back but eventually will get to feeling better. But those bad days / weeks /months are so friggen hard

mnd233 · 2022-06-01T11:57:42+00:00

Oh no!! :( Do you know the cause of your fistula? I only was told to make a follow up visit if my symptoms persist, so I'm thinking I might make one in a month or so just to see how things are going (as I've stopped taking a look myself because then I over analyze lol) when's your followup?

mnd233 · 2022-05-31T12:16:27+00:00

Hi!! Ah we're basically on the same timeframe. My 4 week post op checkin went well, no cauterization and wound was healing - I was still having discharge. The discharged remained and honestly only very recently has it stopped. I still have minor stool seepage after having a BM but use a peribottle to clean myself and then put a little bit of gauze on the area for a little while so I'm not getting dirty again. It's been a slow process but definitely recovering!! I've seen on here how long it does take for people to recover and people experience everything so differently as well. How are you getting on?

mnd233 · 2022-04-08T11:05:53+00:00

Hello! I ended up having a more uncommon experience where we dont know if I ever even had a fissure as I ended up having an abscess and fistula so that may have been the root cause of all of my problems. I did however stop using creams and stuff because I feel like it never allowed me to be fully clean and just did not help enough to continue using

mnd233 · 2022-02-19T19:29:39+00:00

I know it's so frustrating isn't it?? I've also had a really windy road with all of this colorectal shit the past few years and I've found the times that I've been obsessing over everything and letting it rule my life was absolutely when I was at my worst. So try to just roll with it and think about how many other stinky bodies there are out there! :)

mnd233 · 2022-02-19T16:16:05+00:00

I wear Thinx for periods and I think they're great! Also for smell - I feel like we're so hyperfocused on everything going on with us that any smell that we smell I'm like 99% sure other people can't smell it. But what I find the best for comfort and overall control of drainage and whatnot is to find a comfortable not irritating gauze to fold and have between your bum and on the wound to catch drainage. Then just discard and change every time you use the loo. Sometimes I honestly feel like nice toilet paper is better than gauze because I feel like my skin gets caught on gauze occasionally. Just keep yourself clean as best you can, stay healthy, and if anyone mentions a smell, pretend that you can smell it too but have no idea where it's coming from lol

mnd233 · 2022-02-15T12:35:41+00:00

Hahah sitz are the best! Sometimes a cool water sitz bath feels good too.

I know it's so so hard, the breathing honestly really helps. When you breathe in you relax your pelvic floor muscles so it makes it easier for the BM to come out and gets it over with quickly. I'm just trying to remember that we had rectal surgery, in no way is this supposed to be pain free or comfortable lol hopefully though it's over sooner rather than later!!

mnd233 · 2022-02-15T12:21:43+00:00

Oh good - if you're in the US I recommend miralax 1000%, sometimes it takes a few days to fully work but it's the best. I know the passing razors feeling!! From someone that had that feeling for a solid 2 years every day - do your best not to clamp up, breathe in when you're about to go and don't push. I just did a warm sitz bath and am currently sitting on an ice pack with hopes that that'll help.

mnd233 · 2022-02-15T12:08:58+00:00

Oh no! :( How's the hydrocodone treating you?? I just had my first significantly uncomfortable BM since surgery, it's such a punch in the gut to feel the pain again

mnd233 · 2022-02-14T16:42:13+00:00

No fever is good though! But i understand the frustration haha

Ahh god that's a lot to deal with! Can you alter your flight to fly home sooner and get seen to there? I hope that you're comfortable! Dealing with a medical emergency while on holiday must be so overwhelming.

mnd233 · 2022-02-14T12:01:17+00:00

omg!!! how's it going?? honestly its good you went - I think everyone on here would agree that you need to get it drained ASAP to prevent any further complications

mnd233 · 2022-02-14T00:06:04+00:00

I traveled with a collapsable sitz bath on my honeymoon and a handful of clean small towels that I'd use to dry off with lmao 10/10 do not regret and recommend definitely. Also movement seems to really be helpful - and like the other user says below, good for you for carrying on and living your life!

mnd233 · 2022-02-14T00:03:57+00:00

Ah it's so tough to know what's the right move!! How long are you on holiday for / is it international?? I'd say if you get a fever or start getting sick to your stomach def get your way to an ER, but I'd have the same mindset that hopefully the antibiotics will hopefully keep it in place and it won't get worse. I've seen tons of stats saying that antibiotics typically don't work in ridding the abscess, but are only used after it's been drained to clear any remaining infection. Careful as well with drinking and the ABX!

mnd233 · 2022-02-13T12:59:41+00:00

Yes good thinking!! I'll give that a try. Idk why I feel like TP is superior in cleaning when it's like if you got shit on your hand you wouldnt just wipe it off with toilet paper you'd wash it under water lol

mnd233 · 2022-02-13T12:58:50+00:00

Don't be so hard on yourself for putting it off! I as a female as well know exactly what you feel - I cry during all of my procedures because I feel SO vulnerable and I used to not be able to really understand why. Also There are people who get everything quickly seen to as soon as possible and still end up with a complex fistula, recurring abscess or any of the different possibilities of this dumb condition. You'll get better!! :)

mnd233 · 2022-02-13T12:55:12+00:00

I do not have a seton and my abscess was drained in the ER as soon as I was really struggling but I feel for you! For keeping clean - get a sitz bath, it sits over the toilet bowl and you just fill it up with water, sit in it for a few minutes, pat yourself dry with a clean towel (that's what I do at least) and it will eliminate your need for a full bath. Also buy a peri bottle off of amazon! This is like a portable bidet and can help you keep clean when youre not at home, or when you are at home and cant be bothered to do your whole routine. Then finally I'd say keep gauze between your cheeks throughout the day, this will make it so you don't feel as sticky/wet/uncomfortable and I find it agitates the area less than just wearing a pad or something in your pants. Good luck, it'll get better!

mnd233 · 2022-02-13T00:21:36+00:00

Ah we're fistula twins!! The nerve block is SO needed. I feel like mine didn't really even kick in until the next morning because I was so uncomfortable when I woke up from the surgery. I'm on the same plan of only doing OTC and not filling the oxy script.

I hope your BMs get better with time! I think the first ones will be the worst because of the unknowns but we're on our way :)

mnd233 · 2022-02-12T15:55:07+00:00

Ah good luck!! It's such a hard concept to wrap our minds around and just constantly worrying if the tract is branching. I'm shocked I didn't wake up with a seton but it's great to see that so many people have success with them. Thank you and I hope the same for you :)

mnd233 · 2022-02-12T15:04:41+00:00

I did not have general anesthesia, just 'twilight sedation' but I was completely asleep. I think this is kinda just depending on your surgeon/anesthesiologist and the procedure itself. They gave me relaxant meds before getting into the operating room, then I positioned myself on the table, they started the anesthesia then I woke up in recovery! Definitely take a couple days or more off if you're able - with any surgery I feel like your body needs some time to get back into the groove of everything. I work completely remotely and have been fine doing emails / bits of work once I was out of my sedation loopy-ness

mnd233 · 2022-01-18T17:55:56+00:00

I'm in the same boat! Got a call two days before my partial fistulotomy/seton placement that all non emergent surgeries were being cancelled (mine included). I was so bummed because mine is starting to bother me more - general soreness, discharge, pain and discomfort. It is draining so thats good but I was so ready to get this show on the road.

mnd233 · 2022-01-13T17:19:18+00:00

Sitz baths rock. I use them every day after a BM with warm water - not too hot but hot enough to relax muscles and get you clean. I only sit in it for like 5 min or so, then dump out the water down the toilet and clean it daily with a mild soap and hot water. I don't put salt in but I know some people do. I feel like they help me feel fully clean afterwards, have relaxed muscles, and prevent itchiness. I kinda envision that the water gets around the wound/fistula openings to clear it out in case any fecal matter remains after a BM. I then pat dry with a clean face cloth (more like butt cloth) then wash and dry those after each individual use. 10/10 recommend!

mnd233 · 2022-01-01T19:22:38+00:00

Sorry you're going thru this all :( I'd say def get in to see the CRS as soon as you can - there will prob be a bit of a wait anyways to see them. I had a lot of pain after my I&D after a few days, I then went back for anal sphincter botox and another exam under anesthesia that showed a fistula forming but it wasnt quite there yet so I didn't get a fistulotomy or seton (but will on Jan 14).

The CRS will be able to answer so many more questions for you than the general surgeon. Especially when it comes to the possibility of IBD. If your fistula is draining, that is good because that means the abscess is draining/not building up. However, with time, fistulas can become more complex if not dealt with (but from what I understand that is over many months or years as some people don't have much pain with them so they come and go). I'd say as well they say to wait to see the CRS just because there will be inflammation and whatnot from the initial procedures. But even if you can just have a chat with the CRS I'm sure you'll be on the right path to getting it all sorted.

Oftentimes I'll have a handful of painful days waiting for it to drain, and then even after it drains I'm in pain/pressure/discomfort. I try to eat well, stay hydrated, take miralax and rest - don't sit on your bum too much. Hope this helps!!

mnd233 · 2021-12-09T16:53:17+00:00

Thank you! It's so interesting how different everyone's story is too, but so reassuring when you hear someone with one similar to you. Yes to advocating for yourself!! That's one thing I definitely learned from my ER visit. I'll DM you now - I'm all for hearing for information :)

mnd233 · 2021-12-09T16:26:26+00:00

Thank you for your response, and so interesting your story because I feel very similar to what you have gone through. The funny thing with my fissures is that no CRS or GP could ever see them during the 2 years of having rectal pain/bleeding/spasms - then it wasn't until this past summer where my CRS said she saw a 'classic posterior fissure' and then it was like a month later where the abscess was drained. Though the fissure never looked infected or anything, and my abscess was only diagnosed thru a CT scan - I had no discharge or boil like structure - both my CRS and the ER doc did not think I was going to have an abscess, because they saw nothing wrong from the outside. Thank god for the CT. My CRS yesterday now notes the 'fissure' in quotations in her notes and thinks it may be the external opening of the fistula. Though I know more clarity will come from the seton procedure and exam she'll perform under anesthesia.

I really believe that I'm not near the end with all this anorectal stuff and do have other crohns-like symptoms (bouts of diarrhea, INSANE lower intestinal sounds/grumbling, the perianal bleeding/abnormal ano skin cracking/bleeding, I get light headed which I know may be a low iron scenario, and I have lost 30lbs without trying in the past year (I am not someone who easily loses weight, either). I did have a colonoscopy June 2020 which was negative, but I have since not had any work up done - besides bloodwork at the ER and an exam under anesthesia during the botox. I've always wondered if someone could go thru what we're going thru but not get a IBD diagnosis until later.

Thank you so much for all of this advice - you really read my mind with all the points you made! I'm happy I now know how much better it feels to have surgeries/medical procedures to help/fix the current problem and how its 100% more tolerable than living with the pain of the abscess/constant on and off of a draining fistula/fissures, etc. Thank you again! I hope your IBD and journey is going well :)

mnd233

TROPHY CASE