Seton and PAIN!

[okhoney]

Last Wednesday I had a fistula exam under anesthesia and at that time, they put in a seton. On Tuesday night before the surgery, I had a severe panic attack, because I was worried about them putting in the seton (which is exactly what happened). 7-10 days prior to the exam, I started to feel really good. I mean, better than I've felt in 4 years kind of good.The fistula wasn't bothering me, the disease was quiet, and I felt like a I was finally able to live and socialize like a normal 25 year old. I was very concerned that the seton placement would set me back and the pain and symptoms would return. I expressed all of these concerns to the surgeon and to the PA, and they said they wouldn't need to do the seton unless necessary, and that besides that it shouldn't cause a lot of pain. Well, they placed the seton even though the surgeon said the fistula wasn't too bad. They definitely lied about the pain. I have been popping percocet like candy and it doesn't seem to be helping. I have been doing sitz baths and using a heating pad, but the pain hasn't gotten any better. In fact yesterday after work, it was so bad that I couldn't breathe and thought I was going to pass out. I'm upset for several reasons. The first and foremost being that I was feeling GREAT up until the surgery and I felt like I was in control of my life again for the first time in 4 years and now it's gone. Secondly, I was not prepared to be in this much pain. Is this normal? How long does the pain last? I'm really not sure what to do. I feel like I'm in a little bit of an emotional tailspin over all of this.

 

[Lisa]

Sorry to hear that 1-you had something done that you weren't prepared for, and 2 - that you are in so much pain. I would give the doctor/surgeons' office a call at least and tell them about the pain. It is possible that when they did the procedure they messed around with things down there (ok, probable) which is why you have pain - but to me it should be getting better already.....I'd think (I never had one placed - held out and went on Remicade which healed them).

Do they have you on any Crohns' meds right now?

 

[CrohnsNYC]

I'm sorry to hear you are having such a hard time. I have had 6 setons placed total and none have been painful. Uncomfortable for a day or two but not bad at all. I didn't get any painkillers for any of them! I would definitely call and go in to have them look at it. I'm sure they didn't place it unnecessarily, but you should also just ask them so you can at least get some piece of mind that it wasnt for no good reason. Setons can actually be a good thing and help keep abscesses away. Are you on Remicade or Humira to close the fistula? You might want to discuss that as well if you haven't already. That will help close them up and your setons can come out. Good luck and try not to worry too much. Lots of us have these things too!

Beth

 

[okhoney]

I called the surgeon yesterday (from work, in tears because I was in so much pain), he said to go ahead and come in and he would take a look. I went into his office and basically got no answers. He said it didn't look infected or abscessed and no, there typically shouldn't be this much pain; hopefully I'll feel better soon was all I got. He said maybe something fissured when they dilated the area, but he didn't see anything. So in other words, no relief. It's really frustrating as I am still in an extreme amount of pain. Like a 9-10 on the pain scale and the pain killers barely take the edge off. I really don't know what to do.

Right now I'm not on any meds. I am supposed to start Remicade soon, but my GI wanted me to get all of this stuff addressed before starting the treatment. I see him on Thursday so maybe he'll have some answers for me. In the meantime, I am miserable. I really don't understand where this intense pain is coming from.

 

[CrohnsNYC]

Oh, I'm so sorry! Glad that you went, even though you got nothing out of it. So frustrating and annoying. Your doctor is right about getting that stuff addressed first before remicade. You want to be free of infection! I am having that problem right now too. I am waiting to start Cimzia, but got an abscess and now another infection on my leg. I see your in New York. I am in the city and have a great colorectal surgeon but they are on the upper east side. And I can pass along the info if you want a second opinion or want to switch.

Beth

 

[coco1691]

okhoney- it sounds like u have a fissure. i had one 2 years ago. the pain is unrelenting and painkillers barely help. make ur stool very watery like diahhrea. and it should ease a tiny bit in a week. depending on how healthy u r and how well ur body heals. im sorry to hear ur going through this. check if theres any blood in ur stool too.

 

[Gabismommy]

Okhoney.. You sound just like me!! When they told me they put the seton in I was so upset and so sore.. Percocets didn't touch it.. I had been working and going out again. N

 

[okhoney]

UPDATE

So, as it turned out the excruciating pain was from an abscess that was brought on by the seton procedure. They basically said the exam "stirred things up" and along came the abscess. I went to the ER and had emergency surgery to drain it. I was in the hospital for 3 days because I kept spiking fevers (at one point it got to 105). When I was finally released I was home for a day and the pain returned in spades. The abscess was back and I had to go back to the ER for a second emergency surgery to have it drained. This time they cut a bigger hole with the hopes that it wouldn't pool again. I was released from the hospital one day before my 26th birthday. Needless to say my birthday this year was terrible. I am still on antibiotics and pain meds, and am not sure if I'm getting better. I'm so desperate to not be in pain for just one whole day. I am constantly afraid that the abscess will come back. I still feel some of the abscess pressure and a little lump even though it's not nearly as bad as what drove me to the hospital. I'm not sure if that's normal and eventually it goes away? If anyone knows I welcome the advice! I really want to get back to my life. I am not handling this very well at all unfortunately. My mom flew in from Colorado to help me for about a week, but had to go and it's really hard to be alone again. Not to mention I feel like things were finally getting on track for me and now everything is uncertain. I have been doing everything the doctor's instruct and still have daily pain. I do the sitz baths several times a day even though I hate them (they are painful with the water shooting up the wound like that). Last night the abscess stopped draining so much, which worries me. When it drains the pain is a lot less. I want it to keep draining, but not sure how to make sure it does.

Any help and advice would be appreciated. Sorry for the ramblings I feel like a crazed person lately.

 

[CrohnsNYC]

Oh my god, I'm so sorry to hear all of this. How terrible. Did you talk to your doctor about when you can start the Remicade? Once you do, then hopefully it will keep those pesky abscesses away and make you feel much better. Only advice I have is to keep with the sitz baths (I hate them too), and use a heating pad to keep heat on it so it continues to drain. Also, keep all your appointments with your doctors and follow up. I started feeling better and let my appointments slip, and I found myself in trouble again because of it. It will take time, but you will get better and get your life back to normal. I have been there, and it is so depressing. Try to focus on the positive. Sending good thoughts and vibes to you

Beth

 

[okhoney]

Thanks so much Beth. I should hopefully be starting Remicade soon. My GI wants me on antibiotics for a couple weeks before we begin that. I know that he was working on getting insurance approval. I am supposed to go in to see him next week and unfortunately the earliest I could get in was on Thursday. The colo-rectal surgeon didn't specify that he wanted to see me to follow up, but I made an appointment with him for Tuesday anyway and also requested he call me so that I can share some of my concerns.

Is it normal to still feel some of that abscess pressure even after the surgery? The little lump hasn't gone away completely and when the draining lessens the pain increases. I can't bear another surgery!!! I am trying my best to hang in there. It doesn't help that the Flagyl/Cipro gives me horrible diarrhea.

It's like a nightmare that just won't end! This disease is the worst.

 

[CrohnsNYC]

I could not tollerate the cipro/flagyl combo AT ALL so they switched me to Augmentin, which I haven't had any trouble with. Flagyl made me so sick and I was dry heaving all the time. I do remember feeling a very small bump after the initial abscess drained, but if it is not draining and you have pain again, I guess it is possible that it is filling up again. Sounds like you need a seton! That will keep it open and stop it from collecting. It is totally the worst! BUT, the nightmare will end. I remember thinking the same thing, and it did get better. Ask about it at your follow up.

 

[okhoney]

They took out the initial seton after all of this and said that essentially the fistula "blew up" for lack of a better term, so they said another seton wasn't really necessary because the fistula is more or less gone. I've been sitting on the heating pad this morning and it seems to feel ok when I'm sitting on the heat. It's nice to know that others have been through this, but in the middle of it, it's so hard to not give in to the depression and feel like there is a light at the end of the tunnel. I really hope the abscess heals. My life is a disaster right now!

 

[barkbbdog2]

My fistula was starting to feel better than they put a seton in it and it has been worse. Just started Humira last week. Antibiotics never seems to help. This all started with and abscess that was the worst pain of my life.

 

[dgg]

You're not alone in feeling this way. I've been dealing with these horrible fistulas since 2008 but the good news is that you have yet to start some of the good treatments that really help. I have found that remicade combined with flagyl and cipro really help reduce the pain and the drainage. I can say that it can totally consume your life. I ended up having a terrible episode of depression caused by my damn fistula and being in chronic pain, not to mention insomnia over the pain and worrying about this all. I can say it does get better and once the doctors figure out the right meds and dosages you will hopefully be comfortable. Although I still have my fistula ( a horseshoe one which is vey complex) I am able to live a normal life and manage my pain.
I see that you are in NY... I think the doctors at Mt Sinai are supposed to be the best for this so hopefully you can make sure you're seeing the IBD experts since fistulas are no laughing matter. Good luck and I hope remicade does the trick.

 

[stevereds]

Fistula's are a real pain in the ass....pun intended. I have mulitple ones. Had 2 resections. I never had a seton, I have been able to get my absesses to open and drain on my own, with lots of hot baths and anitbiotics (cipro n flagyl)
Hot baths seemed to help alot. and pain meds like percocet or vicodin help ease it a lil. You will never be pain free of them, but you will be able to tolerate them better.

I have one in a tricky spot. that hurts alot... if it were higher up, I would hurt much less. But this one rubs against everything, and forces me to sit on one cheek(which helps alot in pain) Sometimes I think the location of them makes some of them hurt much more than others.

Stay strong, it will improve lil by lil. all the best to you

 

[MikeinBklyn]

Having been in your shoes I can tell you that they probably used a curet to clean out (scrape) the fistula canal before placement of the seton, hence much more pain than expected.

I have had two setons placed and two fistulotomys. I have had a seton placed while fully conscious and can tell you that it was no fun at all.

I agree that taking Flagyl was like taking poison. It was worse than the disease. I understand what you all were/are going through.

The good news is that Humira cleared everything up in two days or so. I still hurt where the abcsess was if I sit on a hard surface for a long while.

Mount Sinai has by far the best hospital and doctors in NYC for Crohn's/IBD.

I wish you luck.