Seton question

[Pain-B-Gone]

seton question

Hello everyone,
Just looking for some advice and personal opinions...

I currently have a pretty severe fistula (for the past 2 years) that seems to be flaring up now after the birth of my new baby girl. The pain is so emense I am now on tylenol 2`s for the pain every other day or so. I was told to get a seton put in as well as being scheduled to begin remicade in the next 2 weeks. I have never had a seton in before and was wondering if it is painful to have in, or does it just hurt a bit at the beginning?

Also is a seton supposed to cut down on the pain of the fistula? My GI dr and surgeon have not been able to give me straight answers and was hoping someone who has gone through this could help out if possible. My fistul has no trouble draining now (or ever) and am wondering if I should bother with the seton since the purpose of it is to allow it to drain. If it is going to cause more pain than I would rather not.
Any advise would be great!
Thanks a bunch

 

[RFarmer]

First off, I had no idea Tylenol 2's existed. Are they prescribed, or OTC?

Seton shouldn't hurt. You already have a developed fistula, so it's not like they're going to be opening anything up. It'll be uncomfortable to clean yourself, but it shouldn't cause any actual pain. Just don't pull on it

Then again, if your doctor didn't specify the type of seton it could be questiontable. There are two types: draining and cutting. Draining setons help to minimize pain, keeping the fistula from closing up and swelling. Cutting setons slowly cut out the fistula, but aren't generally used for Crohn's patients.

If you're getting pain from your fistula (especially enough pain to warrant tylenol with codein), then it could have a problem draining. I know you think it drains fine, but there could be excess fluid in there, unable to escape, and creating an abscess (which is like a big pimple)... A fistula shouldn't hurt a whole lot.


Either way, if it's a draining seton, it shouldn't hurt. You probably won't even notice it until you play with it a little... You'll of course want to bathe it (sitz baths are good: you can get epsom salts and a sitz bath at your local pharmacy). Keeping it clean is a must. But you should be able to ditch the tylenol once it's in.

Keep in mind, your doctor doesn't know the condition of your fistula. You could wake up with some tissue removed or something, because sometimes with UC or CD patients, the fistula kinda wrecks the skin around it. But don't fret. It really is fairly painless, and really does help.

One last thing: Be patient. Your body will take a little while to adjust to your new "piercing"... It could get a little red or itchy, but it just takes time.

Best of luck, and keep us updated.

 

[Pain-B-Gone]

Thanks a bunch Ben,
I was really nervous about this procedure but am a bit more at ease now - I`ll keep you updated!

 

[raindrop]

There's also the chance that Remicade alone will heal the fistulas. If that can happen, then you might avoid scarring from the surgery to place the seton.

Your colo-rectal surgeon will do an exam under anesthesia and determine what type of fistula you have. He or she cannot really know without this exam, which will also include surgery or seton placement.

The first time I used Remicade, my fistulas healed. Back in 1999, though, we didn't know about letting long gaps get in between infusion times, so I was quitting Remicade and then restarting it when fistulas returned. Dumb.

I've had Remicade alone heal and close fistula. And I've also had surgery with setons. The last was in 2002 when I had an exam under anesthesia and sugery with setons. A few months later, I restarted Remicade, and the whole mess healed up well and the setons came out.

If your disease gets under control with Remicade, I think you'll feel better all over and that painful rectal area will quit hurting. I was needing Vicodin because it hurt too much to stand when I had active fistula/abscess problems. I hurt throughout the day and then took the vicodin in the evening so that I could stand to make dinner for my family and put my small child to bed.

While you're waiting to get better, if you need stronger pain medicine, I think it's reasonable to ask for more help, especially when the demands of babies are so much.

 

[Sha0913]

Hi, I had a horribel fistual that would swell to the size of a golf ball b4 it would drain, but the setons drain it all the way and then let your skin heal so that the fistula dries out and heals completely. I had 2 setons placed and they were my life savers. I had them done and then started remicade right after and my life with Crohns has been pretty awesome since then. Hopefully this helps and eases some of your fears. Shannon

 

[Mark63]

Hi,

Go for the seton before you start Remicade. I had the Remi before a seton was installed and the fistula would start to close and form an abscess. Treatment had to stop so that antibiotics could clear the infection and then the whole cycle would repeat again. In the end I developed a reaction to the Remi that was probably not helped by the stopping and starting it so often.

I've now had a seton in place for a couple of years and been taking Humira for over a year. The fistula still hurts, some days are worse than others.

I hope that the treatment works for you. It's a good drug and works well for many people.

Mark

 

[RFarmer]

Thanks a bunch Ben,
I was really nervous about this procedure but am a bit more at ease now - I`ll keep you updated!

Do that Don't be too nervous. The procedure is half meant to relieve pain, remember. Therefore, it can't be any worse than what you deal with now.
Like raindrop mentioned, there is a chance that remicade will heal it, which sounds a little counter-intuitive seeing as the seton keeps it open. The idea is to let the seton make a nice, clean, tunnel like fistula, and then have the remicade close it.

 

[Rivers]

congratulations on your new baby.

Im new to this forum but wanted to wish you well.

I just had a seton drain put in my fistula. The purpose is to help it drain the abscess and to also toughen up the tissue in the fistula tract so it will be ready for another surgery down the road.

I am one week out from when I had my seton placed, I am still sore and experiencing drainage of pus, gunk and some blood but it is healing. Sitting on a heating pad helps as do the warm baths.

Good luck with yours.

 

[Bill41]

After my first one I installed a flex shower head, going to the bathroom multiple times with a fistula or fissure is a pain and sitz baths take too long to set up and are awkward in my opinion...the shower head works great.

 

[Rivers]

The showers heads are great! I also highly recommend sitting on a heating pad or putting one under your bum in bed, its very soothing for pain.

Do most of you with a seton take antibiotics as well, or just take nothing?

 

[Mark63]

A certain amount of pain and drainage is normal for me, so antibiotics only get used if there are other signs of infection E.G. Significant increase in pain, high temperature, generally feeling unwell etc.

 

[totie]

Hello. Congrats on the new baby....

I had a seton put in 3 weeks ago. I had the surgery on a Friday & back to work Monday. I only used the pain medication the day of surgery & Sat. Sun I took one at night since it was sore after my daily normal routine.

The surgery was not bad at all & there was minimal pain, but the sitz baths helped a lot. Use wipes as well to help keep the area clean.

I didn't think it was bad at all & it had my abscess draining & has actual stopped draining so I am hoping to get it out. I should know tomorrow when I go for my 3 week check up.

Oh one more thing I use a dounut at work to make it easier on my butt...

I think you will be fine & NOT in a lot of pain. I am able to do everything as before, it might get a little sore at the end of my day, but I only take one pain pill if I need too.

The only thing and you can imagine is the "relationship part" of my marriage if you know what I mean. We both think at this time it would be painful for me, so my husband is understanding...