Problems with seton placement

[goodtwin926]

Hi everyone,
I am new to this forum and I am hoping to get some thoughts on my issue. I have had crohns for 22 years and have 3 bowel surgery's. I am Humira, aziathiropine and pentasa. My GI recently convinced me to have a seton placement and I am not sure I am too happy with it. I had the surgery about 1 1/2 weeks ago. Recently I had lithotripsy done for kidney stones. At the same time I came up with a small cough and sniffles. Ever since my kidney stone surgery I feel this aweful pain and pressure when I move or cough in my anal area where the seton is placed. Has anyone had any issues with seton placements similar to do this. I'm just not sure if I should be concerned. I think I have a high pain tolerance but this is getting ridiculous. I know I have had my share of issues but I was really hoping this seton would stop the abscesses that I have been taking care of on my own but the payback isn't worth it so far..

 

[Sef0912]

Is it a cutting seton or one that just drains? I had a cutting seton that hurt for the first couple of weeks it was in place (almost felt like I had a stick up my butt.) Sitz baths really seemed to help, along with some pain medications. The first time my Dr. tightened it, I thought I was going to pass out and cried for about an hour after he did. After that evening of pain pills, it actually started to feel a bit better, and continued to feel better day by day. Your surgeon may just need to adjust it, even though it is not a pleasant experience, it may help. I would recommend calling the surgeon and just letting him/her know that it is bothering you and see if there is anything they can recommend, as there may be an easy fix or something that he/she can recommend to help with the pain.

 

[dave13]

Hi goodtwin926 and welcome,glad you found the forum.One and a half weeks is not a long time from surgery,your going to need some time. I have three draining setons that I have had for four months now and feel I am just getting 'comfortable' with them.

Here is the fistula,fissures and abscesses support group link http://www.crohnsforum.com/showthread.php?t=47942 A good place for questions about setons.

 

[goodtwin926]

thanks for the quick responses. so Dave13, did your pain seem to get better then perhaps a relapse.

 

[dave13]

I'm gradually getting use to the setons.I would say I have more discomfort now than pain.Getting in and out of a vehicle is still a slow process and probably causes me the most pain. Setons are designed to keep a fistula open so there is bound to be a daily level of discomfort.I personally feel the tradeoff is worth it.

Feel free to ask me anything.

 

[goodtwin926]

thanks again, I think I will see how it goes in the morning. If coughing still causes this extreme pain maybe I will just have to make the call.

thanks.

 

[dave13]

Definitely call your doctor and share your concerns. Do you have anything for pain? I know we don't want to be a nuisance or told nothing is wrong,but never feel like you can't call your doctor.We need to be proactive. Good luck!

 

[goodtwin926]

I was given hydroco 5-325 but it really doesn't do much. Pain was still there this morning and walking my dog this morning wasn't the best. But I'll try the pain meds this morning and see how work goes. I'm sure when I call they will say everything is ok but cant hurt to ask.

 

[dave13]

I'm sure your doctors office will ask about infection and if you are keeping the seton(s) clean.It is a difficult area to check out,but have you looked at the site? Things look o.k.? When you talk to your doctor,describe what the drainage looks like.That will give them an idea if it is normal drainage. Ask questions as well,if you have any.I write notes before I phone my GI and colorectal surgeon.

Have you tried soaking in a bath with epsom salts? I find this alleviates discomfort for me,my surgeon said it can help promote drainage too. You may find it relaxing,which would help with stress. I shower after a bath and usually am ready for bed soon after.

Have you checked out the fistulas,fissures and abscesses support group?

Remember to ask for explanations if you don't understand.Doctors offices are busy places and well meaning professionals can get caught up in the pace and treat us like we are in a line at a fast food joint.Don't let them rush you if you have questions or need clarification.

You can be assertive with out being rude. Good luck with the call.

 

[Lilly1982]

No had my first seton placed in August and eas back in surgery four days later as was in so much pain, even lifting a leg killed. My dr said it was too tight and replaced it. The second setin I had tried 4 weeks later as the knot imbedded in the area and the third one removed after a week as again too tight!
I'm now seton free and awaiting an MRI of my small bowel as am yet to be diagnosed with Crohn's. I will then be having surgery depending on this result.

 

[goodtwin926]

I'm sure your doctors office will ask about infection and if you are keeping the seton(s) clean.It is a difficult area to check out,but have you looked at the site? Things look o.k.? When you talk to your doctor,describe what the drainage looks like.That will give them an idea if it is normal drainage. Ask questions as well,if you have any.I write notes before I phone my GI and colorectal surgeon.

Have you tried soaking in a bath with epsom salts? I find this alleviates discomfort for me,my surgeon said it can help promote drainage too. You may find it relaxing,which would help with stress. I shower after a bath and usually am ready for bed soon after.

Have you checked out the fistulas,fissures and abscesses support group?

Remember to ask for explanations if you don't understand.Doctors offices are busy places and well meaning professionals can get caught up in the pace and treat us like we are in a line at a fast food joint.Don't let them rush you if you have questions or need clarification.

You can be assertive with out being rude. Good luck with the call.

Well things were moving in the right direction until today. I have looked at the site and thought things felt strange as it was hurting again. Go and behold I found I have another abscess right above were the seton was placed. I was able to drain it and have a call into the doctor. seriously I thought this thing was suppose to take care of the abscess. More to come, who know what will happen next. Has this ever happened to you?

 

[Jay Woodman]

@goodtwin926 One and half weeks is not a lot of time to give yourself to recover after seton surgery. I have fistulas & have had setons placed. Based on my experience the first two weeks may have been the most uncomfortable. By week three your body adjusts & hopefully your discomfort will as well. I just had a seton placed in fistula #3 & unfortunately the area above the seton also developed another abscess. This was my breaking point in deciding to start Remicade. I'm not sure if you are currently on a Biologic?

 

[goodtwin926]

I currently take Humira so I think that is similar. When your the one above started what did the do for it?

 

[dave13]

I have fistula that surround my rectum and three that have draining setons. I change my dressings several times a day.

I have had setons for 4+ months and they still hurt.We have to be strong.

 

[Jay Woodman]

@goodtwin926 I had not started Methotrexate or Remicade at that point in time. I was prescribed a CiproFlagyl drug combination for 14 days which settled things down.