Just had 4 seton's put in!!! feels like I've been butchered...

Hi,

First off I have had crohn's since I was 8 years old with a full colectomy at the age of 9. A full re-section at the age of 11 has left me (luckily) without an ostomy. Have been on every medication that is available: Prednisone, Sulpha (allergic), Pentasa (allergic), Cipro, Flagyl, Immuran, Remicade (didn't work) and finally Humira....BINGO!!! at the age of 32 finally something that worked!!! Awsome right??? Well I stopped responding back in October and quickly developed 3 peri-anal/vaginal abcesses...so we treated with the gold standard of Cipro/Flagyl for 6 weeks and all was good... Found out about 1 month later that I'm pregnant...ok a few months earlier than planned but cool....then the abcesses started to act up....crap! Being pregnant the Cipro/Flagyl combo wasn't an option.... To make a 5 week story relatively short, 3 ER Trips, 1 abcess drainage under local (ouch), 1 abcess drainage under general anesthetic (sp??) and then a third abcess (that I drained on my own thank you very much) I (along with my GI) figured in the interest of not losing my job or spending the next 7 months of my pregnancy in and out of the ER that we would put in a well placed seton or two to get me through the pregnancy until I can once again pump my body full of whatever drugs without harming the baby. Had the seton surgery with a spinal (better for baby apparently...not so enjoyable for me =( ). I was told that she put in setons! I thought that was a bit excessive and when I finally had a look was horrified to see that all four run from my anus up to the base of my vagina!!! There is so much plastic covering the entire area that I pretty much spend my entire day cleaning the area, soaking in the tub and feeling kind of like a freak. It has only been a week so maybe I am not being patient enough....but the discomfort is soooo much worse than the abscesses and unfourtunately I can't really go back as they have now made really definate holes from my rectum through the vaginal area. I should probably mention that my GI has decided to retry me on Remicade and I go for my 2nd dose next friday.

Has anyone else had this many seton's placed in the same area??? If so how did you deal?? My boyfriend is really supportive and thinks that it will all be ok eventually....however I can't really see how I will ever be able to have sex again anytime soon!!! I guess it's a good thing that I'm already pregnant!

Thanks for taking the time to read this post.

K

Hey there, welcome to the forum! Ouch, sorry I dont have perianal or vaginal problems so I cant empathsize with you but I can't even imagine your horror of 4 setons! Congrats at getting pregnant (antibiotics cancel out the pill ) but hopefully you get some relief! Most people who get preggers usually dont have many symptoms. You sure are a trooper. When is the baby due? What part of Canada are you in?

BTW Canada has the highest incidents of Crohns in the world...not nice to be that famous .

CONGRATULATIONS!!! (on the pregnancy of course!)
I am sorry about the setons... I have heard about them but no experience myself ... I do empathize though...sounds terrible How are you coping with it is more like the question?? Sounds like your boyfriend is really supportive .. nice to hear!

Welcome... I am sure someone will be along soon to answer your questions

I have had two fistulas, and several surgeries, but I have to confess, I don't even really know what a seton is, although I have been hearing about them more and more on the forum lately. I'm sorry you are having problems. Wish I could help.

Congrats on the pregnancy though and welcome to the forum! you will get great advice here (although not from me today unfortunately. ).

I will start by apologizing that I don't have any experience with a seton. But, I did want to welcome you to the forum and give you credit for being so strong! You have been through so much! I really hope Remicade works the second time around and helps you to feel great throughout your enitre pregnancy and beyond!!

Do you know what you are having? You should bop into the Pregnancy & Crohn's subforum - lots of great info in there!

Hi K,
I had two setons for a few months before my Proctocolectomy. They were just plain torture. It did not help that I was going 15 times a day, and the wrong tug on those strings was so painful.
So I'm sorry to say I don't have any advice to help. I actually installed a sprayer on my water line to avoid any wiping. But that water was so cold! On another bathroom I had a handheld shower head which was nice.

Good luck with the Remicade.

Hi K and welcome to the forum.

Like the others, I don't have any advice to offer on the setons. Wow, you have been thru so much with the fistulae AND being pregnant. You poor thing!

Good luck getting thru the next seven months. I hope you have a healthy baby and an easy delivery.

I hope someone else pops on to give you some advice on the setons. As a group, collectively we've been thru it all so someone should be able to give you some insight!

Hang in there! - Amy

Welcome K,

I have 1 seton in place right now. A hand shower is a huge help for getting the area clean. I also tuck 1/2 of a cotton ball in my rear to stop the seton from jabbing/digging into the surrounding tissue. This also catches drainage. I change this often during the day.

Good luck and I hope you find a treatment that keeps everything at bay.

-Paul

I undertand how you are feeling. I have had three setons placed in the past year. They require a lot of careful cleaning and just when you think you have got everything in the area to your satisfaction there is alway something you have missed or were unable to get to due to location of the setons. The setons are so uncomfortable especially when trying to sit for long periods. I still get some drainage and have to put toilet paper in my rectum to catch the drainage. I understand my general surgeon's rational as to why he felt it necessary to have them and i actually have not had many problems with them since they were put in. My setons are according to the surgeon permanent so i quess i have to deal with it as best i can. Be patient with your little four babies and congrats on your newest arrival

charles.

Hi Just wanted to say that I am sorry you are having trouble whilst pregnant. I had a resection when pregnant so I know how terrifying the whole thing is but hopefully at the end of it you will have a happy healthy baby which will bring you much joy and the horrible bit you are going throught right now will all be worth it.
Good luck x

Thanks for the encouragement....I can't beleive I didn't find this place sooner. Just to answer some of the q's. I'm in Ottawa so I have pretty good access to Dr's for both this lovely illness and for high-risk pregnancy. I'm due mid to late Oct depending on which ultrasound I want to beleive. Thanks for the tips...I did just buy an extendable/hand-held shower head b/c well it has now become necessary and yes I have tried tucking in gauze, however I have a feeling the Dr who did my seton sx made 2 of the 4 too snug...too much pulling when I walk and I can't really fit anything even 2mm of gauze underneath. @Paul or Charles just a question...I had a seton about 7 years ago and it was a really loose loop....these 4 (2 specifically) are completely "fitted" for lack of a better word...I was under the impression that they were supposed to be really loose...are yours???? I want to avoid going back to the ER however I think that's where I'm headed with all this pulling irritating not only the outer region but the inner region as well....Thanks.

NEKO 76. I'm not sure what u mean by tight. Mine are suppose to be permanent so they are pretty secure . They however are loose enough to where i can sit on them and move them around without much discomfort. If u feel that something may not be right always air on the side of caution and consult with your Dr(surgeon). My only problem is that i sometimes get blood and leakage from around the setons. Not sure whats going on with that. Hope the Setons work for you.

chas-chuck

Could those be cutting setons and not drainage setons? Cutting setons are meant to be tight, and they slowly cut through the fistula track over time. The drainage setons I had were very loose. From what I have read, cutting setons are uncomfortable, worse than the drainage ones. Are they made of a rubbery material or more like string?

Hi...no they are definately not cutting setons, they are wide yellow rubbery ones...I actually asked about the cutting setons prior to my surgery as I had just read about them and the Dr said they rarely use these in patients with peri-anal crohns as we just don't heal like someone who may just have a random abcess. I went to ER today to re-check with an actual colo-rectal surgeon and he was surprised at both the amount of setons placed in one area and at their "snugness" (I think he was kind of covering for the other surgeon as the look on his face was a lot less politically correct than his statement..=0.... so I am having them re-stiched this evening to loosen them, hopefully this will rectify (haha) the pain situation somewhat. Thanks again for all of the input from everyone.

Kat

Hello Kat, just wanted to say I sympathize. Setons have been hell. Just went for more yesterday, don't even know yet how many were placed, but it feels like a forest. I am absolutely dreading my first stool visit (hasn't happened yet due to the physical trauma I guess, but it will soon enough).

My past experience is once you overcome the initial trauma, you gradually get used to it. A couple of months and it should be relatively painless and unobtrusive...

Best of luck!