As you can see from these charts there are several different types of fistulas that can be associated with Perianal Crohn's disease. The type of Fistula you have will depend on your treatment. You can have several fistulas at one time and fistulas can branch out as well, meaning they have one opening but then divert off in 2 or more ways. this is called branching off because when they do branch off it is much like tree branches, pretty simple. Those become complex fistulas other fistula's that are considered complex are ones that contain a large portion of the sphincter muscle. In the next few pages, you will see information about treatments of the fistulas. Seton's which are small rubber band type sutures that are looped through the fistula and tied together, Fistulotomies, FiLaC, Biologics and antibiotic therapy. I caution you from allowing your colorectal surgeon to do overzealous procedures, as studies are finding that at the initial abscess placing setons may actually be surgeons just causing more harm than good.
I highly recommend exploring all treatment options and seeking second opinions with Complex Fistulizing Crohn's Disease before making any decision on doing corrective surgeries for the fistulas, colon diversion surgery (ostomy) or another way they say it is fecal diversion surgery, or a proctectomy removing the rectal stump after they have done the colon diversion surgery and that has failed to cure your symptoms as the Surgeons said it would. surgeons do claim that there is a very high success rate in putting CFCD in remission with colonic diversion and proctectomy however statistics show 18 to 33 percent people are put in remission but a large percentage are left with worsening disease process due to having the peritoneal area cut wide open to remove the anal canal. Causing more fistulas that invade the vaginal, bladder to perineal etc. There are many complications that arise from those procedures so as I said I caution you to look for different avenues.
I am always adding new information so check back and check back often and remember you can email me at fistulizingcrohns@gmail.com with questions, suggestions or just support. I would love to share your story on my Blog page.
Different types of fistula's in Perianal Crohn's
Submucosal Superficial fistula. The track does not involve any Sphincter muscle.
Intersphincteric Track crosses the internal sphincter with a Tract to the perianal skin. It does not involve any External anal sphincter muscle.
Transsphincteric- Tracks from the internal opening at the dentate line via the internal and external anal sphincters, and then it ends in the perianal skin or perineum.
Suprasphincteric Tracks superiorly into the intersphincteric space over the top of the puborectalis muscle, then descends through the iliococcygeus muscle into the ischiorectal fossa and perianal skin.
Extrasphincteric: The track Passes from the perineal skin through the ischiorectal fossa and levator muscles into the rectum. It lies entirely outside the external sphincter complex.
1. VESICOUTERINE FISTULA, is an abnormal connection between the bladder and the uterus.
2. VESIVOVAGINAL FISTULA is an abnormal opening that forms between the bladder and the wall of the vagina.
3. Urethrovaginal – opening between the vagina and urethra, a part of the bladder
4.Rectovaginal – opening between the vagina and rectum/lower part of the large intestine, which carries stool out of the body
Not shown on this chart but fistula's that are common in Fistulzing Crohn's Disease.
- Urethrovaginal – opening between the vagina and urethra, a part of the bladder
- Enterovaginal – opening between the vagina and small intestine
- Colovaginal – opening between the vagina and colon
The anal canal is the final portion of the gastrointestinal tract. It has a vital role in defecation and maintaining bowel control. It is located within the anal triangle of the perineum between the right and left ischioanal fossae, and is surrounded by internal and external anal sphincters, which play a crucial role in the maintenance of bowel control:
The mucosa in the anal canal is organized into longitudinal folds known as anal columns. These are joined at their inferior ends by anal valves. Above the anal valves are small pouches which are referred to as anal sinuses – these contain glands that secrete mucus.
The anal valves collectively form an irregular circle – known as a dentate line. This line divides the anal canal into upper and lower parts, which differ in both structure and neurovascular
Finding a painful lump near your anus is scary for multiple reasons. It is an embarrassing place for exams, very hard to see for yourself even trying to take pictures yourself is very difficult it can be done though I have Crowned myself the Perianal Selfie Queen. Feel free to send photos and knock me off my throne. I encourage all pictures, comments, questions, suggestions, and information you have.
Seek treatment as quickly as possible if you read the first page then you will see that delaying care increases the chances of developing a fistula even if you do not have Fistulizing Crohn’s disease.
After the mistakes I made, I would call hospitals and check to see if they have a 24-hour Colorectal surgery service, even if it means a drive to a bigger city and many miles. Go straight to that ER and be evaluated being in the ER Testing can be done without delays and Scans done without waiting on prior authorizations. Surgery may or may not be done that urgently but you can have a good assessment and may just be discharged with antibiotics and a follow-up with a colorectal surgeon in a few days. They then have a lot of information at their disposal before you even come in to see them and can have a plan or 2 ready to discuss with you.
This is an Ischiorectal abscess I had , Cellulitis extended around the abscess as you can see by the bright red coloring. That abscess was about the size of a Mini nerf football.
With this I had contacted my surgeon multiple times, even went to the ER had CT scans when it was little they could not "feel" it. it was very deep. At this point I was put on Azathioprine which I was tested and the Thiopurine's were not able to be processed by my body. They do blood work to check. but my GI after a point decided that I needed to be on it despite the risk of Bone Marrow problems, Decreased white blood cells, and many other things. AZA ended up causing severe problems with my CBC's they were all over however when I was sick, my WBC always remained in the normal ranges, when I felt well, I was way below normal. My doctors never paid attention to the fact that I was on this medication that my blood tested to not be able to process, my spleen was 24cm 3 times what it should have been, and they failed to ever address the infection in nature just proceeded to do surgery after surgery.
It is written in many articles that CT scans are useless in finding fistulas and tracking abscesses MRIs are the recommended test as the others prove little value. I cannot stress enough if you think something is wrong and they are not listening, keep going until someone will listen. I also cannot stress enough that even in many studiers it says that Blood work often comes back as normal even though you have a severe infection, generally because you end up on Biologics, Sometimes Biologics with Methotrexate, Aza, and other immune suppression drugs. Be your own advocate. The later pictures of this abscess I am thinking might be too gruesome to post. Needless to say it got much, much worse
SETON placement, and care
When you have your first perianal abscess it is common for you to wake up with a seton, even though studies are proving that placing them at the initial incision and drainage of the first abscess and subsequent abscesses can cause more harm than good, but surgeons tend to stick with what they know. So, you may just wake up with a seton. Setons are rubber bands that loop through the fistula and are sutured closed. You will have had an incision and drainage, generally an incision and drainage is done with an elliptical incision hopefully all infection and infected tissue is removed and burnt if the surgeon thinks they have found a fistula they may decide to place the seton, (sometimes they will do a partial fistulotomy lay open, I will go into detail about that later.) You have options after the initial seton is placed. After 6 months of not having any abscesses, you are doing well, corrective surgery can be done. Depending on the location of the fistula that can be a Fistulotomy, Lay open, LIFT, Advancement FLAP, FiLAC. Again that depends on the location of your Fistula and how much sphincter muscle it involves. Fecal incontinence is a risk if the more sphincter muscle is involved.
Caring for your Seton, you do need to keep the area exceptionally clean, a Sitz bath is needed after bowel movements. A detachable showerhead was the best purchase I made, doing sitz baths with that little bucket that sits in the toilet i hated and sitting in the tub in my filth was gross so I would rinse off in the shower after every bowel movement when home. It sounds like a lot but you don't have to take a whole shower and you will feel a lot better it also helps the pain, then when I showered morning and night, I would make sure to spend extra time flushing the area with the massage portion of the head again that helped with the pain and also kept the area very clean. I also started washing my body with antibacterial soap after I had so many infections and abscesses, while out in public you can use a peri bottle to flush the area clean (you can buy that on amazon or ask your nurse for one when you are at the hospital) Asking nurses for supplies they will usually load you up. When I went to the hospital, I took my expandable molle backpack and some of the nurses gave so many supplies I had to expand it. Unscented baby wipes also help because they are smoother to work around setons than rough toilet paper. after all clean, tucking a 4x4 non-woven gauze between your Butt cheeks keeps the seton from rubbing and causing irritation and it also protects from the drainage causing ulcers and such especially if stool is coming out of the seton. If you do experience irritation Desitin creamy found in the baby section can be used and that will soothe and heal the area very quickly. 5% Anorectal cream can also help with pain and irritation.
If you are on Medicaid, SSI, Medicare check with HMO's you can get Gauze, Creams, and other things covered. Buying Gauze daily is pretty expensive especially when you use 4 to 5 a day. I recommend buying Silos of gauze if you have to that is bundles of 100's off amazon not boxes at stores.
If you have had several unsuccessful surgeries, doing well on biologics, sometimes it is just best to have long term setons, with proper care you can do almost anything you want. The fistula tract matures so the pain for the long time seton group subsides, drainage slows, the number of sitz baths is drastically down and the only real concern is keeping the area clean and the skin in good condition. People can ride bikes, jet ski, and do most things they did before they had setons placed after proper healing time has occurred. Sometimes it is better to just wait with the seton than to rush for definitive corrective surgery so that you can make sure that all infection, inflammation in the perineal area is gone so if you finally do decide to have surgery it has a higher chance at success.
Now this is one thing we all hate to hear, it is important to try to quit smoking, eat a good diet that is anti-inflammatory, get enough sleep , and take care of ourselves. That is a hard thing for all of us.
Be well my friends. Any other suggestions let me know in the comment box below