Lifestyle

“You had a what?” – My Surgery, Fistula, and Getting Close to a Diagnosis

Today it has been one month exactly since my surgery. Yesterday I had my first appointment with my new Gastroenterologist who has begun the process to diagnose what has been causing my digestive issues most of my life. Wednesday I had my last post-op appointment with my surgeon – YAY!

I’m finally feeling ready to talk about my surgery and why I had to have it, as well as the possible cause for all of this mess.

Seven months ago, I started having a little bit of pain, which I thought was the worst hemorrhoid I’d ever experienced. After having Landon, I periodically got them, because that is what happens to a lot of mom’s – thanks kids! But this was the worst pain I had probably ever experienced. I was unable to walk, eat or do much of anything for three days. But then there was relief. I won’t go into the details of what happened to give me relief, but it wasn’t pleasant.

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I thought it would finally be over and I would be on the road to feeling better and doing my normal activities again. Boy was I ever so wrong! It was the beginning of 7 long months – maybe more – of pain, discomfort, the inability to do most of the things I love most, and a hidden monster in my bum – enter shocked, embarrassed and laughing emojis here. I’m going to be talking about some rather embarrassing and uncomfortable – maybe even a little gross – things, and for that I apologize. But my main purpose through all of this is to hopefully help someone else who may be experiencing the same issues, as well as help those who know me to better understand what has been going on with me. This was a health issue that needs to be talked about, so I’m going to be as open and honest as I can possibly bare. I totally understand if you want to stop reading here!

After on and off pain and discomfort for six months, I finally had insurance and was able to make an appointment with a doctor. I was NOT looking forward to having some random person look at my butt, BUT (ha) it had to be done. After being switched around to a few different doctors before making it to the right place, I landed with a surgeon who, while my pants were down and I was bent over with her looking at my butt, explained that I had an abscess and possibly a fistula.

Both of those words shocked and grossed me out. What the hell are abscesses and fistulas? Who gave them those awful names?

I was allowed to pull my pants back up and sit down while she explained to me what was happening and that I would need an EUA — or Exam Under Anesthetic — which would most likely turn to a surgery while I was still under. She was going to take a look at my nether-regions while I was knocked out, determine exactly which issue I was having – although she was quite certain it was a fistula after an uncomfortable examination with her finger – and decide which procedure to perform.

I held back my tears. I’ve never had a surgery before. The closest I’ve ever been is a colonoscopy when I was 20 – for these same digestive issues that have led to all of this – or maybe childbirth, but I didn’t even have a c-section then.

As I fought back my tears my amazing doctor, Dr. Maki, explained as lightheartedly as possible, everything that would happen, discussed my digestive issues and family history of digestive diseases, all of my other symptoms, and made me laugh with butt jokes. She was and has been amazing through this entire ordeal.

SO, what did I have exactly?

It turns out I did have a fistula. Most likely a chronic fistula that was possibly caused originally by an abscess which was very likely caused by a disease which I really don’t want it to be – Chrohn’s Disease.  I have a strong family history of Crohn’s disease as well as diverticulitis, which is another digestive system disease although the two are unrelated as far as anyone knows at this time.

I’m not going to talk much about what could possibly have caused all of this havoc in my life right now because I will still need several more tests, most likely, to get a 100% diagnosis. So I’m going to tell you what I know about abscesses and fistulas. In my next post, I will talk more about my actual experience with my surgery as well as give an update about my appointment with the Gastroenterologist.

Abscesses

According to CrohnsDisease.com, “An abscess is a collection of pus” – I told you things would get gross. (1) For people with Crohn’s Disease – a form of Inflammatory Bowel Disease (IBD) that can effect any part of the digestive tract – abscesses and fistulas in the digestive tract are much more common and likely to occur than with people who don’t have an IBD. (1) Abscesses usually form when inflammation is present and builds itself into the wall of the intestine, becoming an infection. It then fills up with white blood cells, dead tissue and bacteria – super gross, I know. (1)

Abscesses can be treated with minimally invasive draining or with surgery, depending on the severity and location of the abscess. (1)

Or, like me, you can go six months untreated and it can burst and turn into a fistula! Don’t do this by the way.

Fistulas

Fistulas are abnormal tunnels that are formed between an organ and another structure. (2) As I explained with abscesses, fistulas are also a very common complication with IBD, especially Crohn’s Disease. (2) There are a lot of different types of fistulas and mine was a perianal fistula, meaning the tunnel formed between my rectum and the external skin near my anus – enter HORROR FACE EMOJI.

— Short break. I can’t believe I’m typing all of this up and releasing it to the public, but like I said, I could have used a lot more information on this when it all started, so I just want to be able to help others. —

Thankfully my fistula wasn’t deep into the muscle — called the sphincter — so my surgery went very well and very quickly, and Dr. Maki was very hopeful that it wouldn’t cause incontinence which can often happen with such surgeries. She decided to go with a procedure that is called a ‘cutting seton’. This is a procedure in which a small rubber tube is threaded through the fistula, then tied together outside the body. (3) The seton is then tightened once or twice a week — mine was once a week. (4)

I’m not going to lie. The “tightenings” were painful. She prescribed me extra pain medications that I could take each day when I would have to have my seton tightened, and I ended up being very thankful for that. The last one, two weeks ago was the absolute worst. I was in pain for several days afterward, but she assured me that it meant the seton was coming along well and would “pull out” soon. Thankfully, a little over a week later it did! I can’t explain the relief I felt when that thing was GONE!

So now I’m left in the final healing stages of the surgery, with some painful tissue healing over the cut-open fistula. I’m finally able to go for long walks and get back to more of my normal life. And after about another week, I will be able to begin exercising again as well!

Next Steps

Yesterday my Gastroenterologist set up LOTS of tests to be run. I had an x-ray taken, go for blood and stool tests on Monday, and have a colonoscopy on Wednesday. I also have to do some breath tests to check for lactose- and fructose-intolerance.

Next week, I’ll give another update and will hopefully have some GOOD news. If you have any questions, please don’t hesitate to ask! I’m an open book!

 

Resources:

(1) – https://crohnsdisease.com/basics/complications/abscess/

(2) – https://crohnsdisease.com/basics/complications/fistula/

(3) – https://en.wikipedia.org/wiki/Anal_fistula

(4) – https://www.ncbi.nlm.nih.gov/pubmed/9407983

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