A place for setons, Thanks !

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Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/8/2010 11:03 AM (GMT -7)   
I am so glad I found this place.!
First of all, I describe myself as " Digitally Challenged" meaning if I commit any Forum Faux Pas, it is out of ignorance, so please bear with me.
I have lived with Anal Fissures and multiple fistulas along with multiple setons for 2 years now.
Getting straight answers from the doctors around here is like pulling teeth. Unfortunately, I can't tell if that is because they don't know any better and have little experience in this field or if there is another reason I don't know about.
I have had several operations ( 6 or 7, I can't remember exactly ) requiring multiple day hospital stays and got no answers as to how the treatment is supposed to progress or even what the long term prognosis was.
I finally fired that team who, to my eyes were simply going to continue cutting without any end in sight.
The team I have now at least did a scan to find out how many fistulas there actually were and inserted regular setons for drainage.
But during this whole time, I have never received any antibiotic treatment at all, even though I have asked for it.  The answer I got was: "There's no point in it" ! But no explanations of any kind. There were no tests to determine the agent causing the infection.
"Of course it's e-coli" was the answer. Even though I had a massive infection from a common hospital bug in my groin when a major bypass operation had to be redone as a result.
I should point out that, prior to all this I had never had a surgery wound get infected, not even when done in a primitive field hospital in Vietnam. 
I guess my biggest problem is that I don't know of anyone with this problem here and so have absolutely no reference.
I don't know if my treatment is normal or not, nor do I know what comes next. The setons I have are just loose rubber setons, I did not even know about cutting setons until I read about them here in one of the posts.
I was told that the setons I have would eventually work themselves out of my flesh. Any idea how long that might take? Judging from the progress so far, that would occur somewhere around 2075!
 
And OH Joy, another fistula is developing but hasn't broken the surface yet, but the pain is already pretty bad.
I am hoping that some of the folks here can help me in finding some sense of reference and answer the questions which at this moment I don't even know need to be asked.
 
Any help/advice is greatly appreciated.
 
Adolph
The most UNcommon thing in the Universe is common sense !!


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/8/2010 3:35 PM (GMT -7)   
Hello Pizwiz!

Welcome to the Forum! I am so sorry you have fistula problems! And that you ran into bad doctors. I did too at first (a general surgeon who was way out of his league), but now my doctors are great! My suggestion is to only see a colo-rectal surgeon who has experience with Crohn's (even if you don't have CD). What we have requires a specialist. While there may be general surgeons who are OK, I have read too many posts from folks who ahev had problems with them. I also recommend a colo-rectal surgeon who works for a university teaching hospital. Surgeons in private practice only get paid when they do procedures (so guess what they like to do?!). Surgeons at a university are on salary and so they don't care if they operate or not. They also are more likely to colaborate with other professors and stay on the cutting edge. Just my two cents.

I suggest you find a post from Ivy6. She is one of our Forum's fabulous Moderators and she has links to great past threads in her signature. She did a wonderful job agthering our discussions on setons, abscesses, and fisulae. Also, here are websites that have good information:

http://emedicine.medscape.com/article/190234-overview

http://www.fascrs.org/patients/conditions/anal_abscess_fistula/

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/9396.html

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/8/2010 5:00 PM (GMT -7)   
Thank you very much for your informative reply. This gives me some place to start.
It appears that this is one of these occasions where you have to become your own expert.:-)
And you have given me a way to get going.
From what I understand, the doctor I have now is the only real Colo rectal surgeon in this town. This is quite surprising since the hospitals here in Rochester, NY are otherwise excellent.
I wonder if this persistent infection could eventually spread to other areas. Another one of these things I need to find out. I also have massive heart problems and the last thing I need is a system weakened by continuous infections.
I am draining so heavily that I need 8"x10" abdominal pads to keep up with it, to the tune of 7 or 8 Pads a day.
As you can see, I had better get busy and get informed about this.
 
Thanks again for your kind reply.
 
Adolph
The most UNcommon thing in the Universe is common sense !!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/8/2010 5:18 PM (GMT -7)   
Aaah, compliments online. That always improves a person's day :-). Thanks, Fallcolors.

I'm really just responding to your post, Pizwiz, so you can see my sig and the link that f/c recommended. I hope it will help you to know that a lot of us have been through similar challenges, and that you will have lots of people here to discuss and support you as you deal with this extra challenge.

Your drainage sounds very heavy: that must be hard to cope with.

Welcome.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/8/2010 5:41 PM (GMT -7)   
Hi Pizwiz,

I got a huge case of cellutis from the miss-treatment from that incompetent general surgeon. It was the cellulitis that very nearly killed me. I was on flagyl and levaquin for months. The antibiotics and the setons working together finally stopped the cellulitis. But I also had a large amount of inflammation (edema). I learned that inflammation anywhere in the body causes fatigue (which I really had) and jsut stresses the body greatly. Inflammation is a problem in Crohn's disease (CD) which makes sense because it is an "Inflammatory" bowel disease. It took months for that to subside once the infection was under control. You didn't mention if you have CD. If you do, then that may explain a lot. We heal more slowly.

Also, drainage is not necessarily a bad thing if it is "stuff" from the rectum draining through the fistula. The seton's job is to keep the fistula open so stuff can drain out, versus getting trapped and abscessing (OUCH!). Drianage of infection from an abscess is OK if you are antibiotics and the infection is leaving you for good. But if you have an abscess that is still infected and the seton isn't allowing it to drain, then please see your doctor. You may be able to tell if you still have an abscess if the area is tender, there is a lump, and if you have a fever (even low-grade). For example, I had a seton installed in my fistula but got another abscess anyway. Turns out that the fistula branched. A second seton through the branch solved that. I am not trying to concern you, just explain that these things can get complicated.

My advice to you is to call your doctor if you think somethingisn;t right (trust your gut!). DOn;t feel at all bashful about insisting on being seen. Sometimes the nurses or physians assistants can be very helpful, and they are easier to see on short notice. You are paying them for their services, so don't be shy about going in.

I am glad you have a good colorectal surgeon. I know someone who went to the University of Rochester - Med Center. Sounded like a good place. I have a great GI who is very experienced in CD (he is such a blessing!), and he who pointed me to a colo-rectal surgeon who knows CD within the same university hospital system. I am very impressed that they all talk to each other. For example, I just had my gall bladder out. I told them I had CD and told them who my GI was. They actually worked together! Later when I talked to my GI, he said he had been consulted throughout and he was the one who ordered the meds and follow-up care. Yea!! Sometimes the system does work!

Please feel free to ask any question on this forum. There are many experienced (unfortunately) people who are are very helpful! It is also good to hear what you have experienced and what has worked for you.

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 2/8/2010 5:59 PM (GMT -7)   
Welcome Pizwiz great name by the way I'm Jenn and only had 2 Fistulas in my life thank god there terrible r they not and the pain and the embarrassment that goes along with them I had the setons which I 2 was told they would fall out when they r ready 2,I had my 4 almost 13 months and my doctor said enough is enough we r going to try Remicade and guess what after 2 treatments with the Remicade they were able 2 remove both of the setons and they never came back I hope u have the same luck I had...Jenn
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/8/2010 8:17 PM (GMT -7)   
WOW !! Lots of info.
Thanks very much.
 
Ivy, thanks for the links. You can bet I'll check them out.
As to the drainage, it is a real pain in the.. OMG! I just realized that with this subject it is just about impossible to avoid bad jokes.!rolleyes Anyway, I am buying the largest pads I can find, and I buy them in case lots of 375 at a time, because that's the cheapest way.
 
Fall Colours,
I do NOT have Crohn's Disease, my BM's are disgustingly regular and I have never had any intestinal problem worse than a hiccup.
( And that is after living for many years in some of the worst sanitary conditions in rural Africa and the middle east)
I understand the benefits of drainage. After all that is what the setons are there for.
But I feel that the infections should be getting better after about two years.
And, as I mentioned, a new fistula is about to break through within the next few days. I can easily feel the swelling under the skin and the area is already very painful.
 
Also, I don't recognize the names of any of the medications you folks have listed or mentioned.
I take lots of meds for my Heart problems, but for the fistulas the only thing I take is some Pain Killers (Oxycodone) and I have to fight to get those. Even though I take them only when the pain gets too bad. ( I usually stretch a one month prescription over three months.)
 
Jenn,
What is "Remicade" ?? someone else mentioned it also. As described above, I take NO meds for the fistulas and never have received meds of any kind for this problem.
Am I missing something??
 
Anyway, thanks very much everyone.!
 
Adolph 
The most UNcommon thing in the Universe is common sense !!


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/8/2010 8:46 PM (GMT -7)   

I am glad you don't have CD!  I am surprised your doctors haven't mentioned the drugs that may help heal fistulae.  There aren't many, some work better than others, and none are 100% guarranteed to heal them.  sad   Are you seeing a gastrointestinal doctor?  While surgeons cut, GI's treat.

Have fun going through the threads.  You will quickly see you are not alone in dealing with these nasty problems.

Take care.


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 2/9/2010 6:55 AM (GMT -7)   
PizWiz...welcome! I am in Rochester NY too. I had a wonderful colo rectal surgeon based out of Rochester General. My fistula was a few years ago so I will have to look up his name again. I will post to you when i find it. I have had mixed luck with UR/Strong docs (which is our major teaching hospital here), but many are good. All of my GIs have been based out of that hospital and I could recommend at least one (my current is too new to say for sure, but I also like him). I tend to like Rochester General for surgery if possible as they seem to be more caring----but that is a personal perspective. Alos, you mention your heart care...I believe that Roch General is a great place and highly lauded for their heart care. It is hard to find many docs that are not part of Strong, but I used a RG surgeon despite my general doc being with Strong.

I have been to see several different GIs in the area. Even if you do not have Crohns, I recommend also that you find a GI doctor. They can help guide your care. let me know if you would like some names and my personal impressions.

Finally, you mentioned Vietnam. Is your care based at the Can. VA? If it is, is there a way to reach beyond the VA system for more of these experts?

Take Care and feel free to post to me any time for local info
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/9/2010 8:39 AM (GMT -7)   
Hello Hockey fan. It is great to meet someone nearby.
None of my health care is connected with the VA.
After being with RGH for many, many years, I switched to strong memorial after a series of very bad experiences which caused me to loose all confidence in the surgeons there. ( I have had 17 surgeries performed over the last two years alone, so the switch is NOT based on just one or two incidents).
I now have a good, young Cardiac Team and found a colo-rectal surgeon whom I can live with.
But I do not have a GI doctor yet, so any suggestions are very much appreciated.
 
I am looking forward to talking with you in the future.
 
Adolph
 
The most UNcommon thing in the Universe is common sense !!


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 2/9/2010 8:56 AM (GMT -7)   
PizWiz...I really liked Dr. Arthur DeCross (affiliated with Strong). He was caring and seemed to be knowledgable on multiple forms of care.
I just had my first visit with Michael Kader yesterday. I was impressed by my first visit, but can not say much as I am new to him. I will go back to DeCross if the new guy does not work out.

I had been seeing Dr Antignano. He is the billboard name in the area as a local DJ talked glowingly about him. However, he is the worst at bed side manner. i could deal with the fact that he was cold and clinical (I work in medical insurance so cold and technical is my mindset mostly). However, he was very focused on only one option for care. I did not feel he really listened to me or was open to options.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/9/2010 9:40 AM (GMT -7)   
Thanks Hockey Fan, I will Contact his office right away.
I am afraid That Dr. Antignano and i would not get along at all.
 
I look upon Doctors as advisors and mentors to guide me towards proper health Care.
I hire their expertise for the purpose of diagnosing the problem and to present me with ALL the options.
But make no mistake, I am the one who makes the final decision as to how to proceed.
My healthcare team is set up as follows:
My physician is the general of the team. He decides when to call in the Artillery or the Infantry. ( read specialists ).
ALL decisions go through him and he keeps track of what the specialists are doing and will tell me if he agrees or disagrees  with their decisions or methods.
It is he who oversees the whole picture and ensures that there are no conflicts.
But again, I have the final say.
I had a Cardiologist of the old school at Rochester General who firmly believed that God came down from heaven and created Doctors and stupid people called patients.
He would order major procedures without any prior notification or even discussing them with me.
He simply could not comprehend that, since it was my body, I needed to be consulted and that the final decision would always be mine! I fired Him on the spot. (I thought the poor nurses were going to have a heart attack. )blush
 
Anyway, I will not work with Doctors who ignore my wishes.
 
Adolph
 
The most UNcommon thing in the Universe is common sense !!


Pizwiz
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 2/11/2010 3:26 PM (GMT -7)   
In my first post I had mentioned that a new fistula was about to reak through.
Well, It didn't!
But the whole area swelled up to a huge size from the infection, accompanied by excruciating pain and a fairly high fever.
Since the earliest Doctor's appointment I could get was still over a week away, I decided to take care of things myself.
Fortunately my wife is a Registered Nurse and has a proper scalpel in her kit. Despite her vehement objections I managed to get her to lance the abscess for me. ( sure would have hated to use my old boyscout knife for the purposeeyes  )
Of course we were a little short of anaesthetics, but compared to sitting around for hours in an emergency department at the hospital, I considered the extra discomfort a small price to pay.
The amount of drainage was astounding, but pain relief was almost instant.
I am now waiting to see the doctor to have a proper drain put in place. And this time I will insist on getting the infectious agent identified and to get a proper antibiotic regimen started.
 
Adolph
 
The most UNcommon thing in the Universe is common sense !!

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