Excessive scar tissue and pain with Cutting Seton

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Excessive scar tissue and pain with Cutting Seton

Postby pookdodger » 18 Jun 2012, 00:52

Hi Friends,
I have a follow up appointment with my CRS this week. He is a well known doctor in the area, yet I find that he can do better with communication.
Here is my chronology of events. I'd appreciate any insight:
May 12, 2012: Abscess drained in ER
May 18, 2012: CRS performed surgery and placed Cutting Seton (rubberband) on what he called was a horse-shoe fistula.
May 25, 2012: Check-up with CRS. He indicated I was doing well.
May 29, 2012: Another check-up with CRS. Looking good.
June 6, 2012: CRS Tightened cutting seton. Indicated that I had excessive scar-tissue. Estimated cutting seton may fall out in 4 weeks.
June 12, 2012: CRS Tightened cutting seton again. However, this time he mentioned that the inflammed scar-tissue makes him very suspicious about Chron's and that he might have to put me under GA again and 'scrape' out the excessive tissue. Given the inflammation and how I was reacting in pain, he said he can't subject me to colonoscopy to diagnose Chron's so I should just see him again next week and 'we can play it by ear'.
As someone who has not been diagnosed with Chron's, this has been an unexpected roller-coaster of a ride.
I have been in excessive pain throughout this process. I haven't been able to sit up since May 12, 2012. I feel the chronic pain I am suffering currently is due to the inflamed scar tissue around the seton opening that the CRS has referred to possibly 'scraping out' under GA.
Has anyone else been in a similar situation? What should I be asking my CRS when I see him again this week? Thanks in advance.
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Re: Excessive scar tissue and pain with Cutting Seton

Postby jr2 » 18 Jun 2012, 09:14

Hi pookdodger,
I'm so sorry about all the pain you are going through. Though I haven't had a fistula or abscess, Crohn's is something that has been suspected with me as well. I'm at a bit of an impasse with a diagnosis because I don't tolerate GI testing well at all and with my current weight being so low it is risky for me to undertake testing that could lead to further weight loss.
What kind of makes me wonder in your case though is if you just continue to have surgical procedures performed without knowing if you have Crohn's or not, if it is Crohn's and you are in an active flare up which isn't being treated, won't the same problem just happen again with the scarring and inflammation? Do you have a gastroenterologist in addition to your CRS that you can consult with? There are other tests besides colonoscopy that could be considered. CT or MR enterography, CT scan, small bowel follow through, capsule endoscopy, and others would be easier on you and could at least give some clues about what's going on in your GI tract. If you can't undergo any testing you might want to either ask your CRS, or better yet, a gastroenterologist, if it would be worth trying to treat you as if you do have Crohn's and try a course of medication like prednisone and maybe even Flagyl to see if you see any improvement in your symptoms. If I were you I'd get a gastroenterologist on board if you don't already have one.
Wishing you all the very best for healing and some significant relief of your pain very soon.
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Re: Excessive scar tissue and pain with Cutting Seton

Postby pookdodger » 18 Jun 2012, 15:22

Thanks! I have a follow up with my CRS tomorrow (I'll ask him about CR and MR) and then I see my GP immediately afterwards - I plan to ask her what she thinks of the ordeal and if she can refer me to another specialist for a 2nd opinion.
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Re: Excessive scar tissue and pain with Cutting Seton

Postby jr2 » 18 Jun 2012, 18:28

Good luck tomorrow!
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Re: Excessive scar tissue and pain with Cutting Seton

Postby TryingToLoveMyRearEnd » 18 Jun 2012, 21:47

Hi Pookdodger,
I have been meaning to post my experience from my surgery but I needed to sit at my computer instead of on my iPad because I can type much more quickly. Reading your story is really compelling me to post now before you go to the doctor tomorrow.
On May 4, 2012 I had a Lateral Internal Sphincterotomy, skin tag removal and a bit of proctoplasty (surgeon cut an X at the anal opening to give the tissue more elasticity that I had lost due to anal stenosis. A stenosis means a narrowing of a canal.) I had three fissures, one at 12, one at 4 and one at 7 position.
I did well....at first. Of course I had alot of surgical pain but that was to be expected. For a couple of weeks I had no fissure pain which was amazing after having had 7 or 8 years of reoccurring fissure pain, a re-tear in Jan 2012 which resulted in more pain than I had ever had before.
Two weeks after surgery, on May 18, I had a hard BM and I believe I tore the fissure. My surgeon wanted me not to use stool softeners because he wanted the opening to get used to accommodating larger BMs to keep the canal from stenosing down again. The next day was my birthday and I was in so much pain that I just laid on the couch and didn't even want to celebrate my birthday at all. Having fissure pain once again scared and depressed me.
I went back to the surgeon on May 25th and when he examined me it was quite painful and I told him so. He was surprised that it was painful because the first follow up visit I didn't have as much pain. He said everything looked good, that there was no infection and to come back in two weeks. He said "I bet by then you will be feeling much better and having no pain."
I suffered through Memorial Day weekend laying around on the couch and in the bed because I was in so much pain. I was becoming distraught from the severity of the pain. I called my surgeon's office on Tuesday morning and talked to the nurse and she said she would have him call me. I didn't hear from him that day so I called the next day and told the nurse I really needed to speak to the doctor. I finally talked to him that night when I had him paged because he was the doctor on call. He told me that I should be feeling better than I was feeling on Friday but I told him I was in alot of pain. He said that something was wrong for me to be in that much pain and to come see him on Friday morning.
When I saw him on Friday June 1st. I asked him if he would be gentle because I was hurting so bad. I am amazed at how I have to ask for him to be gentle with the exam....they really have no clue how bad anal pain can be! He said that I had an infected stitch and that was causing inflammation and pain. He said that my body was taking care of the infection and that I didn't need antibiotics. Just needed to go back soaking in the tub if I had stopped and to start putting Neosporin cream on my incision again. I truly wanted to believe that that was the problem and that when the infection cleared up that I would feel much better but that didn't happen.
I had another follow up visit on June 12th. I forgot to tell my surgeon to be gentle and boy he wrenched my ass open and was pulling and prodding and I was saying "ouch that hurts" but it was like he didn't even hear me. My surgeon told me that the fissure at 4:00 position was not healed yet and that my tissue was very inflamed and irritated. He said that he wanted me to come back in 3 weeks and if I hadn't healed by that point that he would need to do some testing to find out what was going on. Of course he mentioned Crohn's disease and I said I really didn't think I had it because I had no other symptoms. I told him that I had a colonoscopy two years ago and everything was fine. He said that I could be having onset which was presenting peri-anally. He prescribed Flagyl ointment which is what is used for fissures with someone with Crohn's. I guess he wanted to see if that would help the inflammation and would help him make a diagnosis later if need be.
I was in so much pain later that day that at one point I had to urinate and I was sitting in a chair and had such a spasm in my bladder and urethra that for a couple of minutes I couldn't get out of the chair. A couple of days later I discovered the beginnings of skin tags at 12 and 4 position. I called the surgeon's office and spoke with the nurse and she said she would have him call me on Friday but he never called. I have been in tremendous pain since my last exam. I called and spoke to the doctor on call on Saturday night and he told me to take 800 mg of ibuprofen and take as hot a bath as I could stand and to get off my feet. Also to use nefidipine if I had it. Said sometimes people need to have a second surgery. Pretty typical answer from a CRS.
I am a licensed massage therapist specializing in John Barnes Myofascial Release. Knowing what I know about connective tissue which is called fascia I started to think about the fact that my fascia was so restricted and that I had so much scar tissue from previous fissure healings in that past that is what must be causing so much pain.
I called a Physical Therapist friend of mine who also specializes in John Barnes Myofascial Release and in pelvic floor issues. We had a long talk about the fascia and how restrictions can cause the tissue to be so tight that it keeps tearing.
Fascia is the ground substance we live in. We are a three dimensional connected web from the top of our heads to the bottom of our feet. Fascia should be gelatinous (think jello) and move well but when we have stress, trauma, inflammatory processes, postural habits, occupational habit, play habits that ground substance begins to solidify. When this happens the tissue becomes dehydrated and things don't move well. Fascia surrounds and protects everything in the body....bones, muscles, blood vessels, organs, nerves...there is nothing in the body that is not affected by the fascial system. And it's a system that is virtually ignored by traditional western medicine. Most doctors have no awareness because they have not been taught how the fascial system works. Therefore they have no idea how much getting treated by a therapist trained in myofascial release can help a patient make huge changes (sometimes life changing) in the fascia. Fascia has two main components: elastin which gives fascia its elasticity and collagen which gives fascia its strength. Fascia has the tensile strength of upwards of 2000 lbs of pressure per square inch. Which means if you have a fascia restriction it can put that much pressure on sensitive structures causing pain and dysfunction. 2000 lbs is a baby elephant or two full grown horses. You bet that kind of pressure will cause pain and dysfunction. It is so strong it can pull bones out of place. We like to say bones are stupid....they go where the fascia tells them to.
The reason I am writing all of this is to educate you about fascia so that you have an understanding of what is going on with your scar tissue. Scar tissue is fascial tissue. Scarred fascia has the strength but does not have enough elasticity. Too much strength without the elasticity is what makes scar tissue such a problem. With myofasical release we hold the tissue long enough (it takes 3 to 5 mintues) to make a change in the collegen so that that the fascia releases and pain can subside and the tissue becomes more functional.
Fascial tissue is everywhere....yes...including the rectal/anal region as well as the genitals. Scarred tissue in these areas can benefit greatly from myofascial release.
I would be happy to give you more information about myofascial release if you are interested. I am not trying to sell anyone on this. I am just trying to educate. I am going to visit my friend and get some much needed internal work because I know that I have major fascial restrictions in my rectal/anal and vaginal tissue. I fly out on Wed and will be getting intensive myofascial release for several days. I am going to save this post and post it under a new topic so that if anyone wants to follow my progress they can.
Ask your surgeon what his/her position is on treatment for scar tissue. See what they have to say. Will "scraping" the scar tissue create more scar tissue? Based on what I know I would say that that is a possibility. If you don't have other symptoms of Crohn's then it's a good probability that you don't have it. For the doctors, it's just a logical assumption of what could be causing slow healing and scar tissue. Doctors tend to go about diagnosing illness in a logical and methodical manner. Sometimes devoid of feeling or compassion.
I am so sorry that you are in so much pain. I feel your pain because I am there with you. I feel like my surgeon has the compassion of a brick Image He has no idea what the pain is like, the intensity, the duration....how debilitating and life disrupting fissure/anal issues/pain are or can be. From what I have read on this forum it seems like there are many CRS that don't understand fully how we feel. It saddens me that so many people are suffering and the surgeons don't "get" it. Image
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Re: Excessive scar tissue and pain with Cutting Seton

Postby jax » 18 Jun 2012, 22:03

Tryingtolovemyrearend, that is very interesting. Please keep us posted. I would love to learn more about this.
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Re: Excessive scar tissue and pain with Cutting Seton

Postby pookdodger » 19 Jun 2012, 16:42

Thanks for the info, TryingToLoveMyRearEnd.
I saw my CRS again today. He felt the cutting seton has done its job but the excess scar tissue is walling it from falling out. I also have developed a hemorrhoid by the fistula opening. Therefore, he is going to put me under GA this Friday and 1. Scrape away the excess scar tissue 2. "Remove" the hemorrhoid, and 3. Remove the cutting seton.
He mentioned that he will send the skin he removes on Friday to test for Chron's and other underlying causes (and follow up with MRI/etc 1-2 weeks later for further testing).
I met with my GP today and walked her through my situation. She agreed that my CRS is right on track with what he is doing to help me.
At this time, I look forward to be relieved of the cutting seton, but I am apprehensive of the potential pain from having the hemorrhoid removed and the scar tissue removed. If anyone has any insight on recovery, I'd appreciate it.
Thanks!
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Re: Excessive scar tissue and pain with Cutting Seton

Postby richibeno » 23 Oct 2012, 06:36

hey pook
how are doing did the op go ok
is the fistula and seton ok now
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Re: Excessive scar tissue and pain with Cutting Seton

Postby Ever the Optimist » 23 Oct 2012, 14:10

Good luck Pook. Hope your surgery went well and they continue to get you sorted out! :)
Trying to Love......Fascinating read about Fascia and scar tissue since this is an issue I suspect I may be suffering from following fistula surgery. I can't figure out why if the fistula has fully healed, why I am continuing with soreness/ discomfort after BM's (not major but enough to make me realise I'm not yet healed and it's possibly scar tissue getting aggravated)
Will definately be following and have my next CRS visit Nov 7th, so have lots of questions myself regarding this issue, how it's best treated etc. or if it is something that calms down after a while. Many thanks for your input there. :)
P.S Unless those CRS' have experienced an anal issue themselves, they have NO understanding of the pain inflicted during their examinations! I know I'm a bit sensitive there with all the stuff that's been going on but the last woman I saw was so rough, I think she left me in more pain after, than I ever had before! Then, she made me feel bad for complaining that she was hurting me! I think even the least sensitive non-anal sufferer would have suffered after her "examination" I was fuming and would blatantly refuse to see her again. Grr Image
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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