A sad revelation...

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Regular Member

Date Joined Jun 2011
Total Posts : 84
   Posted 12/6/2017 8:43 PM (GMT -6)   
I saw my doctor today and he told me I was finally going on Remicade (pending insurance approval). I asked him a bunch of questions and then finally asked him, "so, assuming I respond well to the medication, how long will it be before I can get the setons out". "A couple of months, at best" was his reply.

I felt like I had been kicked in the stomach. My mistake (as an aside, Straydog, I should have listened) was that I got my hopes up. I was thinking like maybe in a few weeks they could be gone. I can't live like this much more (daily, constant pain since April). My ass hurts all the time. I work in an office, sitting at a desk. It's just not possible and the sad part is that I'm so, so, so much better than I was before the surgery, but I'm not all the way better. So that's my pessimistic lesson for the day - with this disease, I'm going to stop hoping and just move on to coping.

As an aside, I asked him if he ever performed seton surgery and he said something to the effect of "hell no" and I just said to him, "you know, it's amazing to me what they do and how many knots are in there. Couldn't they use some type of surgical apoxy or something else to hold the setons together? Has anyone given any consideration to the minimal number of knots necessary to sufficiently hold the setons together? I've got knots like every 1/8th of an inch. Clearly, an engineer didn't design this?" He looked at me and said, "you know, I never thought about that" and I replied, "you haven't had a knotted string in your ass for 2 months".

Forum Moderator

Date Joined Dec 2008
Total Posts : 16438
   Posted 12/6/2017 9:16 PM (GMT -6)   
I am so sorry you got your hopes crushed. It sounds like a bad situation, but a few weeks, a couple months, maybe they aren't so far off? Maybe you will start feeling great with the remicade quickly, you never know. I am going to remain hopeful for you.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Veteran Member

Date Joined Feb 2015
Total Posts : 881
   Posted 12/6/2017 11:28 PM (GMT -6)   

I haven't had a seton. My CRS just won't do them on me because I have fistulizing Crohns...but everyone in his office (the patients) all talk about how painful they are. Scared the daylights out of me. I am sorry you are going thru this.

My colon looked like a seive. It had ulcers that went all the way thru. I had been in the hospital for sepsis 3 times and had fistulas-external and internal-when they put me on Remicade and methotrexate. (The methotrexate prevents you from developing antibodies and lengthens the timeframe people can usually take it) Remicade healed everything except one fistula. I could feel it working after the 1st infusion. I have been on it about 3 years now. I did develop a soft tissue stricture, pre-dysplasia and now have a colostomy.....but Remicade was and is a very beneficial medication that usually works very quickly.

I hope it works quickly for you.

06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Elite Member

Date Joined Jan 2010
Total Posts : 10555
   Posted 12/7/2017 8:42 AM (GMT -6)   
I've never had a seton, but are knots really that painful? I'm surprised they can't use some sort of glue to hold the string together as well. I dunno if you've considered or tried this already, but would a donut ring cushion help with sitting?
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Regular Member

Date Joined Nov 2017
Total Posts : 43
   Posted 12/7/2017 9:33 AM (GMT -6)   
Stevo, so sorry to hear about all the pain. sad

I currently have three setons for an RVF (rectovaginal fistula, not being sexist but you’re a bloke so might not know ;)) and two abscesses. I look like a badly made sieve.

With regards to the knots and bearing in mind I am a first hand newbie (highly educated through Dr Google though), to me it sounds somewhat unusual. Two of my knots (one on each seton) are showing and I know how much pain they are when they get into the wound. I periodically rotate the circle so the knots are away from any wound entrance. One of the setons doesn’t have the knots showing so they must be lodged inside the wound, away from any nerve endings because I can’t feel that one.

I wonder if your CSR tried to use the multiple knots to secure the seton and stop it from moving? It clearly failed but I can’t imagine any other reason why the CSR would do it. Apart from intentional patient torture! Can you speak to your CSR to question it?
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