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Deathly scared of seton surgery

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Crohn's Disease
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Posted 1/9/2016 9:50 PM (GMT 0)
I'm so glad to have found you all. I have been through the ringer. Last year after some fissures (the dreaded blood just on one side of the stool and itchy pain). I started swelling in my bottom near my labia as well. My regular doctor sent me to a back doctor and gynecologist and a chiropractor. I got diagnosed with ischial bursitis and so much more. Anyways about a week before Christmas it finally came to a head and I though yay my torment is over it was just a cyst or boil. I went on some antibiotics and it busted open and holy moly was that a lot of blood and liquid pus. Sorry tmi I know. Well while trying to stop the bleeding I felt this spasm regurgitation feeling and blood droplets came through my anus. I went to the ER and they did a ct scan and it showed nothing. So I got a referral to a general surgeon with a diagnosis of a fistula . I went but the guy was just in there like one minute looked at the abscess that was healing and said the cyst needed to come out and his people would call me and walked out as I was talking. Oh I've never been so pissed in my life at a doctor. So I went to see a colorectal surgeon since I thought they would be best to handle it. He saw something like granulation tissue when he took a scope inside (ow) so he does think I do have a fistula too

I go in Wednesday for EUA and he is thinking due to the location I will need a seton. All I see online is about all the pain and high maintenance these things are. I'm so scared of the pain. I'm so scared of infection and I'm just shaking with fear. The fear of the unknown is literally causing me to be a mental mess. With worry of how long I will need to be off work and how we will manage financially is all too much. Just writing this post is making me tear up. I'm 28 and a female. I was hoping to get pregnant this year but that isn't happening if this has to happen. We just bought a new home a few months ago and I'm just ridden with fear. Any insight ?

Thank you so much.
Posted 1/9/2016 10:07 PM (GMT 0)
I forgot to mention I got diagnosed with Crohns in 06 and was in a flare for two years. I've been in remission ever since. So I do not have active Crohns at this time.
Posted 1/9/2016 11:55 PM (GMT 0)
I'm so sorry. I just went through the surgery on Dec 15th and I'm in recovery. I posted about my journey so far:
https://www.healingwell.com/community/default.aspx?f=17&m=3564671

I'm 33year old female and I can relate so much to your fears.
My first question is did they drain the abscess completely or is it currently draining?
Posted 1/10/2016 12:02 AM (GMT 0)
For me the surgery hurt post-op but they give you pain meds. The worst pain for me was when they drained the abcess. Honestly getting use to taking so many sitz baths and bowel care was harder to deal with then the pain. I've been off work for almost a month and I have a lot of the same fears especially since my job involves a lot of sitting.

I recommend buying a sitz bath before your surgery so you have one when you get home. The yunga brand sitz bath on Amazon is great.

Post Edited (mylifeinflight77) : 1/9/2016 5:08:19 PM (GMT-7)

Posted 1/10/2016 12:15 AM (GMT 0)

mylifeinflight77 said...
For me the surgery hurt post-op but they give you pain meds. The worst pain for me was when they drained the abcess. Honestly getting use to taking so many sitz baths and bowel care was harder to deal with then the pain. I've been off work for almost a month and I have a lot of the same fears especially since my job involves a lot of sitting.

I recommend buying a sitz bath before your surgery so you have one when you get home. The yunga brand sitz bath on Amazon is great.

My abscess drained on its own and it's healed over now but it still feels sore where the abscess was. I'm thinking its filling back up again. Who knows. My boss said she would work with me but I know they have their limit of what they can do to. So I'll know more Wednesday post op. I'm sorry you have to go through this as well. Yes there is Crohns awareness but not for this !! I am fearful of the pain. How much bleeding did you have ?
Posted 1/10/2016 2:47 AM (GMT 0)
That sounds very terrible!
I should know, I've been there!
What meds are you on now???
Is there a reason why you're not going on Remicade?
That's the best treatment to close up fistulas, much more effective than surgery, which has a high risk of incontinence and a very low success rate.
Mine burst as well, drained for about two months, and then became hardened over, and then reopened again. I was not on any meds at the time and my doctor wanted me on Remicade, but insurance refused for 6 months. Once I started receiving Remicade in May 2010, I began to feel amazing and my fistula closed up by July. I never had a seton or surgery. It stayed closed until January 2011 and then reopened. I saw two colorectal surgeons and both said surgery was not worth the risks.
What does your GI, not your surgeon, have to say??? What is your treatment plan?
Keep hope alive!
Even though my fistula is still here more than 5 years later, it didn't stop me from having a healthy baby boy through csection!
Please feel free to post here anytime!
:D
Posted 1/10/2016 3:25 AM (GMT 0)
Welcome to the forum! I'm sorry for what you're all going through. Let me reassure you that having a seton isn't as difficult as a lot of what is said on the internet. I got my first one a couple of months after getting married for a recto-vaginal fistula. For me, it was NOT a lot of maintenance or a lot of pain. Sure, the first few days and week afterwards were sore, but after that, it was a lot like a pierced ear.

I agree with @gypsy, you really should be on Remicade. It is pretty effective for helping them fistulae close and stay closed. Surgery is really not worth the risks - the only surgery I would recommend would be a plug surgery. In it, they put a mesh inside the fistula that is sewn in with dissolvable stitches. As they dissolve, the mesh stimulates healing and the fistulae heals itself closed and the plug/mesh falls out. If it doesn't work (mine didn't, but that's another story) then you can just put a seton back in.

I had healthy baby girl 2.5 years ago via c-section (with a seton in) and am currently 27 weeks pregnant with a boy (no seton, but the fistula is still there - it is just like a pierced ear, so all "healed" around it, so no need for a seton).

Getting a colo-rectal surgeon instead of a regular surgeon is the BEST idea you could do. My regular surgeon once told me that if I ever saw a surgeon who said fistulae were easy to do surgery on and I didn't need a colo-rectal one, then I needed to run away, and fast. He refused to even touch me and did lots of research to find me the best colo-rectal surgeon around.

I would also like to point out that having a fistulae means that your Crohn's is most definitely active. You may not be having a flare in the traditional sense of the word (diarrhea, stomach pain, etc.) but you are not in remission at all to be having an abscess and fistulae. You really, really need a maintenance medication, and Remicade is going to be your best option. I've been on Remicade for almost 4 years now, all through both of these pregnancies, and my babies are doing great. It is pregnancy safe.
Posted 1/10/2016 7:12 PM (GMT 0)

scifigal2k said...
Welcome to the forum! I'm sorry for what you're all going through. Let me reassure you that having a seton isn't as difficult as a lot of what is said on the internet. I got my first one a couple of months after getting married for a recto-vaginal fistula. For me, it was NOT a lot of maintenance or a lot of pain. Sure, the first few days and week afterwards were sore, but after that, it was a lot like a pierced ear.

I agree with @gypsy, you really should be on Remicade. It is pretty effective for helping them fistulae close and stay closed. Surgery is really not worth the risks - the only surgery I would recommend would be a plug surgery. In it, they put a mesh inside the fistula that is sewn in with dissolvable stitches. As they dissolve, the mesh stimulates healing and the fistulae heals itself closed and the plug/mesh falls out. If it doesn't work (mine didn't, but that's another story) then you can just put a seton back in.

I had healthy baby girl 2.5 years ago via c-section (with a seton in) and am currently 27 weeks pregnant with a boy (no seton, but the fistula is still there - it is just like a pierced ear, so all "healed" around it, so no need for a seton).

Getting a colo-rectal surgeon instead of a regular surgeon is the BEST idea you could do. My regular surgeon once told me that if I ever saw a surgeon who said fistulae were easy to do surgery on and I didn't need a colo-rectal one, then I needed to run away, and fast. He refused to even touch me and did lots of research to find me the best colo-rectal surgeon around.

I would also like to point out that having a fistulae means that your Crohn's is most definitely active. You may not be having a flare in the traditional sense of the word (diarrhea, stomach pain, etc.) but you are not in remission at all to be having an abscess and fistulae. You really, really need a maintenance medication, and Remicade is going to be your best option. I've been on Remicade for almost 4 years now, all through both of these pregnancies, and my babies are doing great. It is pregnancy safe.


Thank you so much. I guess I need to see my Gastro once this is over with. I'm going to ask the colorectal to refer me to someone he works with. My old Gastro is in another town and id prefer someone closer. When he looked with the scope in office he said it didn't look like I had Crohns in my rectum. Whatever that means. I woke up this morning with high anxiety. So I had to take some anxiety meds and listen to tv evangelism lol. I know I'll be ok. I just want to be on the other side of it. Life isn't always fair and I guess I'm dealing with stuff spiritually too. It just seems like a lot. I'm weak stomached so I'm scared of a gaping hole.

I'm going to the store before the surgery. Can I ask a personal question? Which way should I squirt my peri bottle ? From the front or from the back ? Thank you for your kindness and help.
Posted 1/20/2016 2:51 AM (GMT 0)
I bought peri bottles from amazon (there was a pack of ~3 for around $3 or so).

I keep one or two in each bathroom.

I find it easiest to squirt from the back. I use the bathroom which has the sink nearby, so I can reach over to refill the bottle easily after a bowel movement if needed. Then I use toilet paper to pat dry (no wiping).

Best wishes to you.
Posted 1/20/2016 3:25 AM (GMT 0)
Ask any question you'd like! That's what this forum is here for! These are not "sexy" diseases, lol. You can't discuss it at the dinner table the way you would cancer or diabetes. Asking your CR surgeon for a GI referral is a very good idea. Not only will it most likely be someone competent, it means they probably talk to each other often and communication flows well between the offices. That's always important.

So Crohn's can affect anywhere in the entire digestive tract. From your mouth, down your throat to your stomach, through the intestines, and out the anus. Your immune system decides to attack the cells that make up your digestive tract. This most often happens in the large intestine, but it can be anywhere. There will be inflammation from the the attacks. So no inflammation or open sores, etc. in the anus just means that he still can't tell. You usually will do a colonoscopy, which can see most of the large intestine. If that is all negative, you might have an MRI to show any inflammation in the small intestine (but that isn't always guaranteed) or you might do a pill cam, where you swallow a tiny camera in a pill that goes through your body and takes pictures (then you poop it out). This can help see if you have anything in your small intestine, but again, they'd really only do that if everything else is coming up negative.
Posted 1/20/2016 9:25 PM (GMT 0)
I had a seton in 2003. It was tender for the first week to two weeks, then I actually felt nothing except a little uncomfortable for 24 hours when it was shortened every 5 weeks. I am not saying you will have the same experience...I just wanted you to hear that it is not always a worst case scenario. Mine was in an area that had no muscle tissue which helped (perianal on left side).

I totally agree about the sitz bathes. I still use mine to help keep clean. I also LOVE my hand held shower head for a gentle rinse. When I had my seton and was tired of sitting on the potty, I would warm up the shower and put the sprayer on a gentle level....very soothing.

I like the peri bottle idea from someone above. I buy travel size saline to take places with me. The saline seems soothing...ask your colorectal guy if that is something you can do too.

I have a sitting all day job....I was lucky and worked from home when I had my seton so I could use a donut pillow at my desk chair without having to explain to anyone. I recommend some sort of
cushioning...and find a reason to get up and move each hour if you are tied to a desk.
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