Escaping the Fistula Labyrinth

Heya! I’m Jen and I’m Finally Fistula Free!

It was a long battle to get there, but I’m very thankful a pan-proctocolectomy (removal of my rectum/anus and entire colon) was helpful for me!!  I know some of you are like, “Sh**t it took that!!?!” Yup, for me it did… all I can say is I’m just so thankful it helped me.  I know I have a long story, but there is a positive in that I did become fistula free!  Hearing a fistula success story was important to me during my stages of healing.

For me it seemed to be a never-ending labyrinth when dealing with abscess and fistula, turn after turn; down the many paths in search of healing.  It’s not like that for everyone with Fistula issues, some people do heal well depending on their specific case.  I wanted to share to spread some hope,  awareness, and help those with abscess or fistula issues not feel alone.

I have an autoimmune disease called Crohn’s Disease (CD), a form of Inflammatory Bowel Disease (IBD).  There is no cure for Crohn’s Disease at this time.  What type of Crohn’s Disease a person has depends on where along the GI tract disease is found. My actual diagnosis is Crohn’s Colitis with involvement of my rectal vaginal septum/perineum. Just to clarify, Crohn’s Colitis means Crohn’s Disease is found in my colon only, NOT that I have both CD and Ulcerative Colitis (UC).   I began having abscess issues up in the rectal vaginal septum many years after diagnoses.  It’s important to say that abscessing does not happen to everyone with Crohns.  An abscess is a sac/pocket of infection, a  fistula is unwanted/unnatural burrowing tunnels.  For me, the abscess and fistula issues have been internal up inside my body, within the rectal vaginal septum (perineum area). You could not visually see my abscess or fistulae.

I was first diagnosed around 2001 when I started losing weight from way too many bowel movements a day.  I was already tiny, and did not have the weight to lose!!  I had no idea this diagnosis would lead me down many forking paths to battling abscess/fistulae, and eventually to live life with an Ostomy (not everyone with IBD needs an ostomy either).  I simply was not educated enough to realize the different ways having an autoimmune disease like Crohn’s Disease can affect someone.  Looking back, that would be my advice to anyone, educate yourself about your disease, it can help you navigate your care with your doctor!  It’s also very important to remember that everyone is affected differently by a Crohn’s Disease diagnosis.

It’s hard for me to tell all of the ‘story’, I’m actually an introvert, and very shy.

I remember hearing the words ‘Crohn’s Disease’ coming out of anesthesia, my GI was drawing me a picture of the colon, and the cobble stone inflammation effect I had going on in there.  Crohn’s Disease – I had a name to what had been going on with me for almost a year.  I was already on a drug called asacol which was not working so I was then put on prednisone.  Prednisone did help but I was stuck on a high dose, and it’s not something we wanted me to be stuck on if I didn’t have to.  I then had to switch GI’s because she was moving to a new location out of Country.  Once I switched, we established that I couldn’t stay on this dose of prednisone so I started a drug called Remicade fairly quickly.  My first 3 infusions were done during trial stages as the drug was being “officially” approved.  It’s given Intravenously (IV), and I went every 8 weeks for the infusion to start.  I was able to taper down off the prednisone once Remicade started helping.  Oh boy, my body did not like prednisone; it made me quite moody and gave me ‘moon face.’

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left is me on high dose prednisone, the right is a more recent photo.

At the time I didn’t realize my moodiness was from prednosine, but learned quickly that there were more side effects that came with it. The restlessness it gave me was pretty intense, and the hair on my arms also grew to where I was self conscious. I was happy to get off of prednisone that’s for sure!

Remicade really did improve my health to the point of clinical remission at that time. Then my insurance changed at work, and I stopped infusions for 6-8months or so.  I think it was around 2005/6 when that happened, and I started having pain rectally that increased after bowel movements.  It would take hours for the pain to stop screaming and stabbing me, but it would subside to a more tolerable pain level after a few hours. Or, it would subside until the next bowel movement, which was more often than I liked.  This went on and on, and started around the same time I had to stop taking the drug that was helping me the most.

The abscess/fistula issues, however, went undiagnosed until 2007 when I switched Gastroenterologists (GI). It was around this time I was struggling to keep working. I knew I had very specific pain that was not in my head.  My employer even sent over a therapist of sorts because they thought it was in my head. It made me feel even worse to have people think that.  It was validating the day that therapist threw up her hands in honesty, saying this was a physical issue, and not in my head.

The best thing I did was get a second opinion. They count!!! Please don’t underestimate them!! I knew my body best, and there was no denying my pain.  My original GI did send me for a CT scan with barium enema, which he said showed nothing, and yet he did not do an internal exam!?! To this day I can’t put together why he did not do an exam. My family doctor was saying he “felt something” upon doing an internal rectal/vaginal examination, which was enough for me to ask for a referral to another GI.  My main reason for leaving this GI: he actually shrugged his shoulders and told me to go see an oncologyst if my family doctor feels a lump in there. I was in tears after that appointment, and never went back to see him again!

Thankfully, a friend directed me to Mount Sinai Hospital in Toronto, where they have a Centre of Inflammatory Bowel Disease (IBD). The best thing I could have done for myself was switch up my care. There was a flood of relief, and also the horror when my new GI there looked at me and said, “You mean they never even mentioned the words ‘abscess,’ or ‘fistula’ to you?” I said, “No,” in bewilderment, as his body language showed it all.  I could see all of his disappointment in how my care had been handled by the slump of his shoulders while sighing and looking down. Though so brief and quick, it was as if it happened in slow motion. He did an internal exam where he said he could feel a collection of possible fluid, and granulation tissue – then sent me for a pelvic MRI with contrast dye.  I had just gotten back on Remicade before I switched GIs as well.  I don’t recall my first GI telling me that I had a greater chance of a reaction on Remicade once I stop and re-start… I’m not sure exactly how many infusions I had before I reacted, something like 4 after restarting. I had built antibodies, so I had to stop Remicade.  My heart rate would increase greatly, my chest got heavy, my face red. We tried a couple more times running the IV drip slower, but it still happened. My nurse at the time (I miss her; she was awesome) was scared to infuse me anymore as well.

From this point on it was as if I was abscessed all the time, with the same festering abscess up in my rectal vaginal septum. Every exam (Oh man the exams tho, ouch!!!!) he would feel a collection, send me for an MRI, and prescribe antibiotics called flagyl and cipro, that my body hated very much. MRIs would show a fluid collection (abscess) with multiple sinus tracts branching out. Sinus tracts are blind-ended fistula tracts that do not have an opening to drain.  That abscess was such a slow fester, but so painful! For years there was no surgical intervention (I did see a surgeon–we used medication for a while) until it got to a size that they could drain it. It was described to me at the time as almond-sized.  Yet, it hurt so much! It truly was mind-boggling and so frustrating to feel left in limbo, and also affected me mentally to be abscessed all the time with such a slow fester.. yet in so much pain, and sooo tired.  The fact that there were multiple blind sinus tracts branching out from the abscess with nowhere to drain out didn’t help. The tissue of the perineum/perianal area was also hard.  My body was constantly fighting infection, so naturally I was tired.

The pain and fatigue was so much that I was not able to work anymore. Getting approved for disability was not easy for me; I ended up with a disability lawyer, and did eventually win my case (it took almost 2 years). It was one of the most stressful times of my life; I had no income and felt very insecure. I started medication for depression around this time (I’ve since learned SSRIs don’t react well with me, so I don’t take them now),  and moving back home with my parents from being broke and denied disability.  My Family was such a great support during that time.  I would have been lost without them. It was an awful time for me, and it really affected me mentally. To not be taken seriously was a difficult pill to swallow.

Like I mentioned, I found it hard to deal with it being such a slow fester with all that pain. Bowel movements hurt me so much, and they came out ribbon-thin from the swelling; I dreaded each and every bowel movement!  I also spent a lot of time using a  heating pad and doing hot sitz baths. Using a peri-wash bottle was also very helpful during my care. Walking was hurting so much as did sitting.  Eventually I went back to the surgeon and they started doing EUAs (Exam Under Anesthesia), where most of the time they would go in and clean/lance it internally for me through the rectum. My GI could always feel granulation tissue vaginally, too, so we discussed a possible pinhole fistula via my vagina and rectum (RVF). Tests never actually showed a connection between them though.

I did eventually start to take the drug Humira around 2010.  Humira is also a biologic like Remicade, except it’s an injection given as a subcutaneous injection. My dose started as two pens every two weeks, then got switched to one pen weekly. It went on like this until a seton placement around June 2012,done via an EUA. I had a draining seton/seton stitch where they take surgical grade material, (sometimes cord, silastic or silk) and loop it through a fistula tract and tie it off.  It’s kinda like a piercing that helps keep the wound open to drain out infection.  At this time during my care I welcomed the seton in hopes of moving forward; and in hopes of avoiding the re-abscessing I was having.  At least I had another path to take through the Fistula Labyrinth in hopes of healing. I did not originally have an external opening to a fistula tract.  Mine were all blind, so one was created by using a probe to open the blind fistula tract and see if we could get this abscess to heal properly.  I distinctly remember the relief involved with my first few days having the seton. It was fantastic until a few days after I felt a weird pop going down the stairs.  I just thought it was the seton rubbing; it was all still so new to me. I found that another fistula tract had opened up right beside the seton tract!!  Ugh, that sucked!  My GI described it as looking like a double barrel shotgun! The seton was uncomfortable for me; it went through my rectum and out my perineum (area between the rectum and vagina).  Sitz baths, heat pads, gauze, lidocaine ointment, calmoseptine or coconut oil, and a peri-wash bottle were my best friends during that time!  Not everyone says a seton is painful to have, but mine was uncomfortable in that location with the multiple issues.  I just kept re-abscessing unfortunately.

After getting the draining seton, we decided to try a temporary diverting loop ileostomy to help give my butt a rest, and stop poop from aggravating and hindering healing. My surgeon planted this seed in my thoughts way before the actual surgery happened; which I believe helped prepare me for it. It’s scary to hear the word ostomy at first. At this time my seton was getting backed up and MRI was showing a fluid collection (abscess) again.  I was having more hospital stays as well, and my white blood cell count was rising. This meant my body was fighting infection, and we had to avoid sepsis. I was feeling quite discouraged at this point.  I was in the hospital yet again when we decided to give the temporary diverting loop ileostomy a go.  For me, mentally, I had to keep trying, keep running up that hill so to speak. Choosing yet another path within the Fistula Labyrinth in hopes of healing. This surgery was done in September of 2012. In this surgery they take a piece of small intestine called the ileum, and pull it out through a surgical hole cut into the abdomen. Poop then collects in a bag attached to it with adhesive. This helps to divert stool away from the fistula wound for healing.

I ended up stopping Humira; my body built antibodies, and my seton came out around the 8 month mark. Because of location we were kind of at a standstill in my care where it had become a round and round cycle.  With the seton out, the fistula tract did close up on the outside, but I started having pain again.  It really was hard mentally to deal with.  So much unknown in the if and when I would heal.  I talked about my feelings with my family doctor.  In all honesty, he just wanted to give me pills.  Pills like SSRI’s don’t help me, they make me worse, though I do know they help many.   Becoming more aware and learning individual coping skills (not a one size fits all deal), and communication has been helpful for me. Talking with a medical professional like a counselor or therapist is necessary; when it starts affecting quality of life.  Over the years with some help, I’ve learned to be mindful and catch myself early now that I’m more aware of how I work. Seeing those warning signs from myself lets me know I need to start communicating even more, and even lean on others close to me for help. (Update Sept 2017: I have found a new therapist that I like, it has been validating,and I am happy for her help. Finding one that is a good fit is very important).

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I then started some strong IV antibiotics around November 2012 at home, administered via a PICC line after another hospital stay, even after the diverting loop surgery. A PICC line is a central line that’s usually placed into the arm through a vein into the superior vena cava of the heart. It helps provide medication intravenously, and can be used over a longer period of time compared to regular IVs. Everything must be sterile to avoid any kind of infection!  Heck, that infection had a line right to my heart were it to happen! It didn’t. I had a home care nurse come help me with dressing changes, I was taught how to work the machine and administer medication myself.  I really didn’t like the PICC line and how far in it was placed on me.  I kept having palpitations and ended up at the ER hitting on the low end of a heart attack marker (It was not a heart attack, but my heart was stressed).  The PICC line was in just a bit too far and needed to be pulled out a bit more! I was on that antibiotic for about 10 months,  during which I did try to go off it a couple times, unsuccessfully. Antibiotics always mess with me mentally as well, on top of feeling so trapped. They kill off so much good gut bacteria.  I learned that taking probiotic was important for me while on antibiotics, for managing yeast overgrowth in my body/skin.  I now take them regularly.   I struggled with nausea greatly.  Whether it was from the pain, medication, or infection…I was nauseous. I found drinking meal replacements helpful for gaining some weight I needed. I was up and down so fast, so I needed something to help me out. I was feeling discouraged about the fact that I was still having some issues, even with giving my bum a rest!  Whenever I tried to be taken off meropenem, that abscess would start to fester slowly back into action. I wanted off that meropenem for good!

I did start a blog, but do admit to currently not keeping up with it. Flash forward – A LOT happened right after October 2014 that was non-fistula related that I won’t go into much detail about here, but will say that caring for my Father with ALS was the most difficult thing I’ve ever had to do.  I’m still mentally trying to heal, In all honesty I’m traumatized from certain events.   I’m also naturally a shy person who has anxiety, so to come out and blog about my abscess/fistula battle was a huge step for me.  My want to help others was stronger than my anxiety about sharing my story. It’s something I really want to do, helping to connect others and help them not feel alone.  Intestinal Fistula awareness is lacking, there’s the Fistula Foundation, but that is for birthing fistula called obstetric fistula, for women in developing countries, and not for fistula that happen here in developed countries.  I want to make Intestinal Fistula known, to spread awareness that all kinds of fistula can happen, and they happen here too, not just in developing countries! We need all kinds of fistula awareness, and we need improved treatment methods – all over the world!!!  I do hope to get back to blogging one day in future!

So, not quite 2 years with the temporary diverting loop ileostomy, and after talking with my surgeon about my options and chances, I decided to go permanent and have my rectum/anus/entire colon removed (pan-proctocolectomy). I don’t wanna jinx myself, but I have been fistula free since!!  In April of 2014 I had the surgery, and by October 2014, I was cleared from having active fistula!  It was hard to believe!

For many, many years I didn’t talk about it to anyone outside my family.  My loved ones, and certain friends being such a great support for me, I’m also so very lucky to have that support system in place.  I love you all.  Doug, being my rock – right by my side.. what happens to me happens to him.  Our motto is Teamwork ho!!

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Left: My Ostomy plays the bagpipes :D,  Top Right: Doug and I showing Ostomy awareness,  Bottom Right: Ostomy Where?  My Favourite swimsuit to wear with my Ostomy

I do know that having a diverting temp ileostomy first, helped me realize that going permanent was the path I needed to take for me. I learned that I was mentally ok with having no rectum, a.k.a. ‘Barbie butt!’ I had such a great support system to help me as well. I was also, so done at this point! Not done in the sense of giving up, but done in the sense that I was done with my diseased piece of sh**t rectum/anus/colon!! And ready!  After all, I had been abscessed from 2005/6ish until 2014!!  I think that was long enough!  Don’t get me wrong, an Ostomy is a big life adjustment that not everyone adjusts well to. Everyone is different, and everyone heals differently as well.  I consider myself lucky!! I am so grateful to be Fistula Free ❤

To this day I still have scar tissue pain down yonder, and surgery has changed my vagina in a way that it is now ‘short’. I share this to help bring understanding, even though not all is fistula-related.  I am still struggling to find a balance with my other diagnoses of fibromyalgia, costochondritis, along with Ptsd, depression and anxiety. When you have an autoimmune disease, it can affect the whole body.  Update Jan 2018: I’m trying to learn how to live life with chronic pain. I’m looking into switching up my care, getting an osteopathic doc, and a pelvic floor therapist for the vaginal pain and go from there. I know my body pain has gotten worse, and I have to figure out something. I hate to say that I’m struggling with daily pain, but will say I still remain hopeful for some relief.

I don’t mention diet here because everyone is so different with what helps them.. for me it’s about eating from the land as much as I can, eliminating processed food, and cutting back sugar intake; those have all been very important for me.  We use a local farmer and I love that whole process! In the summer we try to grow some of our own as well.  It’s such a nice feeling when we can cook with something from our own garden!!

I sure don’t miss my butthole or colon for all the trouble, and extra pain it caused me!   The ileostomy saves me a ton, and I mean a ton, of extra pain from pooping, and it saves me from constant infection. No more hospital stays for surgery or IV antibiotics!  I am so very grateful for my ileosotmy ♥  I know I’m not the usual climb a mountain kinda success story, but I am fistula free, and that is freakin fantastic!!

To anyone reading this who is fighting a fistula battle, you are not alone ♥

Sometimes hearing those words, “me too,” can really help and open conversation… it can be good to talk and get it out, message me anytime here at Finally Fistula Free!!  I’m also an admin to a lovely group of ladies, it’s a closed group on Facebook called Abscess/Fistula Support for Women. Keep fighting and keep hoping.  It is possible to be fistula free!  Another safe place for fistula support for men and women, also found on Facebook, run by Leah is Fistula Support (colorectal).

Did you have a fistula heal and consider yourself a fistula success story?

Send a message to finallyfistulafree@gmail.com. We would love to share your story on the Finally Fistula Free page/site. It could help spread hope to others fighting their fistula battles ♥   Your story can be posted anonymously as well.  We hope to hear from you!

Much love ❤

Jen

**Disclaimer:  I am not a medical professional, and this information is NOT to be used to replace medical advice.  Please remember what worked for me may NOT work for you.  These are my opinions and experiences only.  You are responsible for your own choices. Peace ❤ 

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