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Crohn's and Fistulas and Setons, Oh My!

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Crohn's Disease
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Posted 3/27/2014 12:05 AM (GMT 0)
Hello everyone, I have not posted in here for a while because I have been busy with work and getting all my tests completed! I was not sure when I first started coming here what was wrong with me but finally after almost a year I HAVE ANSWERS! This alone already makes me feel better and happier. I have done various blood work, CT Scan (drinking that clear liquid was horrible!) Ultrasound, and MRI and because of my never ending butt problems, I have had my rear end checked out about 50 times! I can say now that I am no longer shy to drop my pants! hahahaha...If you wanna see it go ahead. I have been diagnosed with Fistulizing Crohn's Disease (YAY)! I currently have loose stool, belly problems, sometimes horrendous lower right sided pain and the worst of it all is the two perianal fistula's I have a brewing/brewed. I had an abscess drained in June 2013 (this was my first introduction into this unknown world) and then a couple months later something popped up on the other side. So needless to say I have a fistula on each side of me rear. My GI (who is wonderful and he answers all of my questions...He even understands when I mention that I am 27 with no social life "aka SEX" because I have a draining bum with a nice little piece of gauze tucked between my cheeks!) He has referred me to a CRS that I have researched who has good reviews to talk about putting Setons in. I google imaged this and I must say I should never google image again! lol. Little intimidating but at least something will start to be done. He then wants to start me on Remicade because apparently this will work to start healing the fistulas. Hey, I will try anything. I am currently taking Iron pills (Anemic), Cipro and Flagyl (Which do help with the fistulas a bit in terms of not so much pain; however they still drain everyday) and also take an immodium and Tylenol #2 when needed. I find myself making less bathroom trips (from 6-7 now to 2-3). I am confident and staying positive that this eventually will all be better and there are people out there who have it a lot worse than I do!

Anyways after my long personal story I have two questions. Can someone with perianal disease explain some about setons and also how is the Remicade treatments? Thanks so much!

Whitney
Posted 3/27/2014 9:56 AM (GMT 0)
Hi WhitneyCasandra

Awh feel your pain, literally and I still loathe the pre scan drink. I've had various concoctions for both CT and MRI and none of them are pleasant - yuk!

I had persistant perianal fistulea, and many years of the gauze between my bum cheeks, drainage and at times the long high pitched "whistle" of wind coming out the track. Aside from the embarrassment that hurt too.

Initially my primary care trust refused Remicade but my GI was persistant and applied for the funding again. Thankfully it was accepted, and within three infusions I noticed a drastic difference in the leakage - in that there was practically none. From memory (this is a little while ago) I was on Remicade for about 18 months, with MRI's every few months to check the situation. Each scan showed the tracks closing with the last showing complete healing. The seton was kept in for a while longer just to be on the safe side that after finishing the infusions that all remained well. It has (well perianal wise) - the seton was finally removed, no more pain, leakage or signs of the fistula reopening.

Remicade made me feel fluey and "out of it" for 48 hours after each infusion, but I am sensitive to most drugs and at least with the infusions ending up being every 6-8 weeks I felt this was small price to pay.

Wishing you a recovery as speedy as mine - although since then I have had vaginal/bladder fistula's so it goes to show unfortunately with fistulising crohns they can crop up anywhere.

Let us know how you get on and any questions don't hesitate to get back to me.

Debbie
Posted 3/27/2014 12:44 PM (GMT 0)
I had two massive rectal fistulas when I was diagnosed with CD in the colon in 2007.  I had setons installed also and I just refered to them as my anal piercings tongue  when my partner asked about them.  Anyway, my GI wanted to put me on remicade  because he said fistulas as large as I had would "never" heal on there own, and remicade was the only solution.

I did my own research, and I decided that I didn't want to turn off my immune system just yet, and so I decided to try the diet approach and went on the SCD diet and the only drug I took was pentassa. 

I followed the SCD diet with 100% fanatical dedication, and in 5 months both fistulas had healed so much that the setons had to be removed so  my fistulas could heal up completely.  Also all my other symptoms of my CD like white mucus and blood in my BMs and loose BMs were gone.    That was in 2007, and since that time , I have been 100% symptom and fistula free with normal BMs.  I still follow the SCD diet, but not so fanatical as before and the only drug I take is pentassa.

I suggest reading the book "breaking the vicious cycle"  You have nothing to loose and all to gain if the diet works for you.  This is not an overnight fix and it takes much dedication, but it sure beats turning off your immune  system.     

Posted 3/27/2014 2:24 PM (GMT 0)
Welcome back Whitney! Sorry this is the answer you got, but sometimes answers are enough, no matter what they are. Your story is similar to mine. I eventually had two or three (who can remember) setons placed for fistulas which drained so much junk it was ridiculous. I was also put on Remicade, which worked amazingly well until my 4th infusion when I developed an allergy. I was unable to continue taking it. I then tried Humira and had no results. Eventually, during this time without meds that worked, my disease got so bad that I was referred for surgery to remove all the plumbing. It was at this point that I had been sick for several years with abscesses and fistulas and tags and pain that I actually begged the CRS for surgery. It was scheduled and in March 2010 I had everything from the sigmoid colon removed, my anus closed up, and an end colostomy installed. I have never (not even once) regretted this decision. I got three wonderful years of complete remission out of the surgery and have yet to have issues with abscesses or fistulas. The CD is back now and I was on Cimzia for a long time but it stopped working and I flared. I’ve been pretty good on Simponi for several months now. Despite the disease being back it is nothing like it was before and I still feel like I owe that CRS my life. Also, she is amazing and has been practicing for many years. After my surgery, she told me I am the second worst case of CD she had ever seen. I am second only to a homeless man who had no access to care or meds and came in on his deathbed. I told you that to tell you this and have you know that I know it’s true: there’s always hope.
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