Share Facebook



11-24-2017, 03:24 PM   #1
AreWeThereYet
 
Join Date: Nov 2017
Location: Seattle, Washington
Seton Agony at 4 weeks

Hey folks, I'm looking for an "is this normal?" check.

I had a seton placed almost 4 weeks ago in a shallow fistula near my anus. The external inscision is mostly painless, but my rectum is in agony, like razor blades slicing inside. Also throbbing, and spasms of all my pelic floor muscles and bottom on the opposite side from the inscision. The silicon loop appears to be giving me piles (?) too. There is a very minimal amount of thick yellow discharge from the inscision, but I bleed a lot when I have a bowel movement (soft, shouldn't be causing trauma).

The doc did bloodwork and a CT at two weeks to rule out infection. Results all negative.

I can only walk 10-20 feet, or stand still for 2-3 minutes, before slicing agony ensues, and I have to lay down-- sometimes right where I'm standing.

The surgeon seems unconcerned because we ruled out infection, but I can't function and it seems to be hurting more each day.

IS THIS NORMAL?
11-25-2017, 11:22 AM   #2
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
 
Join Date: Apr 2013
Location: Quebec

My Support Groups:
Hi and welcome to the community.
I am so sorry for the pain you are going through. Since the pain is increasing, I would return to the surgeon asap or at least to a nurse in the surgery department. I dont have experience with seton, but your overall experience and amount of pain you describe doesnt sound right to me.
Did the CT ruled out inflammation in rectum? The blood may indicate disease activity as well in the rectum...The surgeon could prescribe medication to at least to diminish your pain. Really hoping you find some relief soon.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-26-2017, 05:23 PM   #3
s.a.m.
Senior Member
 
s.a.m.'s Avatar
 
Join Date: Jul 2008
Location: Alberta
I have Setons as well, I would go back to your surgeon/nurse. Is the area where the loop attaches working it's way back in? I find where the loop joins can hurt if it goes inside, chaffing. Not sure if I'm explaining it well 😬
11-27-2017, 06:34 PM   #4
Starnett
 
Starnett's Avatar
 
Join Date: Mar 2016
Location: Preston, United Kingdom

My Support Groups:
Hope you are feeling a bit better since your post. I agree with the others about getting back in touch with the surgery team as it doesnít sound normal, or at least letís hope itís not! We know some discomfort is expected but I wouldnít imagine that amount of pain to be normal.

Sending support and hope you have managed to find some relief. Iím finding warm sitz baths with plain water have helped with the rectal spasming a little.

Andy
11-29-2017, 03:04 PM   #5
AreWeThereYet
 
Join Date: Nov 2017
Location: Seattle, Washington
Thanks for the support, everyone The doc now has me on large doses of Valium for the spasms, which helps, but also makes me feel like a zombie. They'll do an exam under anesthesia (EUA) tomorrow to try to locate the source of the pain in my rectum.

It's not the knots on the inscision that are causing pain. They've never worked their way inside the inscision or my bottom. Discomfort, sure, but the real pain is inside. Lady Organic: the blood test doesn't appear to have tested CRP. Maybe I should request that tomorrow when I'm in for surgery?
11-30-2017, 10:25 PM   #6
AreWeThereYet
 
Join Date: Nov 2017
Location: Seattle, Washington
Today in the OR they replaced the sillicone (sp?) seton with silk. Hopefully this helps the pain! They also found a fissure, I suspect caused by the seton itself. In the mean time, they gave me a 12 hour anal block in surgery, so I'm pain free for the first time in a month! I'll report back as the anasthetic wears off.
12-04-2017, 02:35 PM   #7
Polarpanda
 
Join Date: Dec 2017
Location: Mahboula, Kuwait
I am glad you are pain free now. It did not sound right for me. My husband had two setons (one silicon and another silk) in for a month, and he had another one (may a silk or robber type, not too sure) replacing the other two a week ago, and in the mean time, I think it was tightened under general anesthesia. He was on pain killer for a couple of days. Not much of pain. So you should not feel too much of pain. Hope you are getting better now. Yan
12-04-2017, 06:58 PM   #8
AreWeThereYet
 
Join Date: Nov 2017
Location: Seattle, Washington
I am glad you are pain free now. It did not sound right for me. My husband had two setons (one silicon and another silk) in for a month, and he had another one (may a silk or robber type, not too sure) replacing the other two a week ago, and in the mean time, I think it was tightened under general anesthesia. He was on pain killer for a couple of days. Not much of pain. So you should not feel too much of pain. Hope you are getting better now. Yan
Thanks for the perspective, Yan. The silk really is much more comfortable for me. The swellings has gone down, it drains appropriately, and the spasms have almost entirely stopped. How's your husband faring? Are setons a final treatment? Or is more extensive surgery planned?
12-05-2017, 08:43 AM   #9
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
Could it be possible you were having an issue with the silicone itself? Glad you are feeling better!
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-08-2017, 11:52 AM   #10
AreWeThereYet
 
Join Date: Nov 2017
Location: Seattle, Washington
Could it be possible you were having an issue with the silicone itself? Glad you are feeling better!
That is exactly my belief. I have sensitivities to petroleum and synthetic rubbers. Unfortunately, I am struggling to have my surgeon confirm or even entertain this idea. She characterizes the situation as "patient cannot tollerate silicon seton." I characterize it as an "expected adverse reaction to synthetic rubber" because I had reported a history of reactions to synthetic rubbers and other petroleum products. I'm starting to feel like my surgeon is using a compleyely different narrative than me, because she is more concerned about legally defending herself than acknowledging or investigating my sensitivities. I fear future surgeries bevause of the risk of exposure and adverse reaction that my doc wont acknowledge exists.

As an update on this thread: I can see 2 fissures in my rectum, but my doc only reports one. The silk seton is exacerbating one fissure and cutting/dividing the skin tag the silicon seton caused. So...it still hurts A lot. And my doc seems surprised the pain isnt subsiding, despite two obvious, deep, fissures and an abrasive thread that aggravates them.
Reply

Thread Tools


All times are GMT -5. The time now is 01:54 PM.
Copyright 2006-2017 Crohnsforum.com