They say “If you can’t laugh at yourself, who can you laugh at”? I’m not quite sure who “They” are but I’m pretty sure I’ve heard it said a million times. I would like to give my entire family and extended family credit for the humor flowing through my veins. Especially in the most difficult of times. Humor has always been my family’s go to coping mechanism in any circumstance. Usually, at the most inappropriate times, but I guess that all depends on who is deeming the moment inappropriate.
As you can see from the title, there’s a story here, mixed with that morbid humor that I can’t seem to avoid in any situation. I am going to share one of my most vulnerable and life altering moments with you. I hope that by sharing this I can help at least one person get through a health issue that they find embarrassing. My embarrassment was very nearly the death of me. This will most likely be my lengthiest blog to ever write. So please get comfortable as I, in every since of the word, “bare” it all.
It all began in September 2016.
I had noticed some changes going on in my body. I didn’t pay much attention to them at first. That Fall was a really busy time for us. My then fiancé Brent, had been gone the entire month of August to California for some military training. During that time, I had his two children along with my three and we were getting back to school shopping done, getting them all registered for school, planning for our October wedding, and getting everything ready for his return home in September.
I did everything I could to make the time go by faster until he made it home. So, we stayed even more busy than usual. I just thought my exhaustion was from nerves and stress and all of the extra things we had going on.
September came and he was finally home. We busied ourselves with wedding plans, getting kids back and forth to school, and finally made it back into our normal routine. All the while I became increasingly more tired. Not only that, but I was beginning to experience a nagging discomfort in my backside. I wrote it off as hemorrhoids and kept it to myself. I refused to say anything about it because I didn’t want my fiancé to know anything about that part of me. As far as he was concerned I didn’t even know what flatulence or bowel movements were, let alone the humiliation of the word hemorrhoid. After all, there should be some mystery left in a relationship, right?
September comes and goes and October has finally arrived. Our wedding date was planned for October 8th. Invitations had been sent, everything was prepped and ready to go for our big day. All that was left to do was get it all set up.
Unfortunately for me by this time the pain had worsened. I was having difficulty sitting down or standing for long periods of time. I had gotten to the point I had to lay strategically on my stomach most of the time and even then I didn’t get much relief. I was miserable. At this point, it was obvious there was something going on and I had no choice but to fess up to Brent about what was going on. He then tried to convince me to see a doctor, along with my mom and best friend. I fought them all tooth and nail. I was horrified at the thought. I refused to be seen in such a way or to have any doctor or nurse get that up close and personal.
After a few more days of obstinance , the pain outweighed my resilient pride. I had no choice. I knew I had to see a doctor.
I went to the ER with my fiancé in tow. It was now or never. I thought this would be the true test of our relationship (ha, boy was I wrong) this was just the beginning. I was examined by a doctor in front of my soon to be husband. He held my hand as I cried. More from the embarrassment than the discomfort. A rectal exam under any circumstance is no cup of tea, but when you’re having it done in front of someone you are marrying in less than a weeks time it’s an entirely new level of horror (at least for me anyway) after the exam I was told I had a rectal fissure. A tear caused by a rough bowel movement. I was mortified. So much pain caused by something I didn’t even speak of. I couldn’t even bring myself to say anything. The doctor sent me with a prescription for a salve that had to be applied on the fissure, but didn’t write me anything for pain. Because, of course, pain meds cause constipation, and constipation would worsen the fissure.
I didn’t say a word the entire way home. I was in complete panic and disgust. I kept thinking about how the medicine was going to have to be applied. How on earth was I going to pull that off?! There was no way I could do it. Someone else would have to. But who?
Not Brent. I refused. I couldn’t even bring myself to think about it. I didn’t even want my mom to do it. I didn’t want anyone to do it. After, sitting in silence for some time, as if reading my mind. He finally spoke, “you know I’m planning on being your husband. That means forever. That means through the good and bad. I know you’re freaking out and I know why, but I’m here and I’m going to help you with this. We can do it the easy way or the hard way, but I’m going to help you and it’s going to get done so that you can feel better and we never have to talk about it again if you don’t want to.”
I didn’t know whether to throat punch him or kiss him. I don’t like being told what to do. Obviously this wasn’t an argument I was prepared for and seeing as he had me in the emergency room after swearing I wouldn’t go, I knew I wouldn’t win this one either. If I had ever questioned his love for me, in that moment I had no doubts.
Just as he said, he picked up the meds and he applied it, with no comments or complaints. We made stupid puns about how “ass-inine” the situation was and wincingly corny jokes about how “planning a wedding really was a pain in the butt”.
We were to use the ointment three times a day for two weeks and if after the two weeks there was no change I was to see a GI for further examination. After a week of using this ointment the fissure was no longer visible. unfortunately for me, it made no difference. The pain had intensified to the point of agony. The day before our wedding I could barely move. I couldn’t help with anything. Everyone had to do the running around and placement for me. I felt terrible about it because tensions were high and everyone was even more stressed out than they should have been. Myself included. It’s not in my nature to sit still.
After a sleepless night of tears from pain and nerves, The big day had finally arrived. I took more Tylenol and ibuprofen than advised on the warning labels and did everything I could to soldier on. I was puffy and swollen and I could barely walk but I was determined to make it down that aisle even if I had to crawl or be carried (Unbeknownst to me the carrying idea had already been discussed by the groom and groomsmen). After a few meltdowns, and the discovery of two out of five of our children also being sick, and running about an hour behind schedule. I was finally walked down the makeshift aisle of our best friends back yard by my dad to exchange vows and join families together. I’ve been told it was a beautiful ceremony. Sadly, I don’t remember much of it. The entire time was spent trying to block out the pain and focusing on getting my legs to cooperate and just willing myself to make it to Brent’s side.
Immediately after the ceremony, then came pictures and our reception. I was deeply saddened by having to force a smile and grit my teeth through conversations on a day that it all should have been effortless. We never even cut the cake. I couldn’t sit, I could barely stand, and I had to choke back the tears to convince everyone it really was the happiest day of my life. I’m sure the guests all believed it was a forced marriage by my behavior, but there was no way I was going to tell anyone what was really going on. Again, that retched embarrassment took over and forced my mouth shut.
Our wedding night and “honeymoon” were far from that. I couldn’t stand the pain any longer and went to bed shortly after everyone left. There were still a few that stayed to keep Brent company but I was unable to join in on the festivities. Our honeymoon trip was cancelled and we took advantage of having a childless weekend by making a mattress fort in the livingroom and binge watching movies and eating donuts with no pants on. Not for the fun of it, but because I could no longer climb up in the bed and any fabric touching my skin caused me to cry out in pain. After two days of continuously using ointment and other home remedies for relief I found myself back in the emergency room. At this time I was on stool softeners and over the counter pain medicine. I had passed out while trying to have a bowel movement. I was in so much pain I couldn’t even talk or cry out from the pain. I crawled to the bathtub in the hopes of a warm bath soothing the hurt that had taken over. I called my mom to come and take me because Brent was away at work and couldn’t get to me in time.
Being in the emergency room for the second time I had the same doctor as the first visit. He scolded me for not following instructions. I said what do you mean? He claimed he had told me to see a GI immediately after my first visit. This was untrue as Brent had never heard him say it either. He and I both remember vividly being told to go in two weeks. He didn’t offer a CT scan, MRI, or even an x-ray. There was no blood work done. He didn’t give me another rectal exam. He simply stated, you need to find a GI soon. I believe you have an infection. I will give you a pain pill for you to take tonight to get you through but stay on stool softeners and make an appointment.
It took two days to get in with a doctor. I couldn’t find a GI anywhere that could see me on such short notice. The doctor I ended up seeing was for family practice but I had no other options. I was desperate for help. I hadn’t stopped passing out and I was so swollen and full of fluid that my hands and feet were tight. Everything hurt. Talking hurt. Blinking hurt. Sitting was a thing of the past. I could barely breathe or speak. I was in so much pain and had take so many stool softeners and fiber products I no longer had continence or control of my bowels. My sphincter muscles no longer worked. I was a very sick woman.
The doctor gave me one look and tried to examine me. He said “honestly, I’ve never seen anything like this, but you need surgery. It may be a pilonidal cyst, but I’m not certain. Either way you need surgery and you need it quickly.” He sent me immediately back to the emergency room(a different ER than the original one I had gone to twice) and called ahead to let them know to be waiting for me. I never got a chance to go back and thank him. He saved my life that day.
As it turns out, I was misdiagnosed. I didn’t have an anal fissure caused by a bowel movement at all. After an immediate CT scan and blood work they found what is called a perirectal abscess. However, I had it for so long that it had turned into hundreds of internal cysts that had formed into a horseshoe shape around my rectum (also known as a horseshoe abscess) and I was on the verge of sepsis. My infection levels were out of the roof and the ER doctors and Surgeons were speechless at how I had been pushing through and still functioning, let alone walking at all. I was put into emergency surgery to have the abscess, cysts, and infection removed. I only thought it was over and that was the end.
When it comes to pain I’m no sissy. Most doctors and people in general that have gotten to know me will tell you that my tolerance to pain is much higher than most. I’m not sure why or how, but whatever the case I’m grateful. However, despite that, I will tell you that the pain that I went through before this surgery turned out to be mild compared to what I had to go through after. I woke up screaming after the anesthesia had worn off and they were trying to get me settled in to my room. My dad, whom I’ve very rarely seen shed a single tear in my entire life had to leave the room because he couldn’t hold himself together seeing me that way. If I could rate the pain at burn victims being the highest, and what I could even remotely fathom a burn victim feeling, this would be the closest to compare it to.
There is no word for it. There is no description for it. There are only screams and darkness and praying to God to either end it or take it away.
I had gone through a fairly brutal surgery and cauterization, with open holes and tunnels leading internally from my rectum to the external part of my buttocks on both sides. They were as big around as a penny all the way through and then packed with gauze and tubes to drain the infection out.
The packing had to be changed and repacked daily. This my friends was the only description I could ever have of Hell.
My mother and new husband never left my side. My husband would hold my hand while my wounds were cleaned and packed and I screamed from the depths of my soul in the most wretched form of agonizing torture that I still have nightmares over. He whispered prayers into my ear and begged me to hold on to him. While my mother tried to hold onto my other hand to keep me from thrashing and kicking. I can’t imagine how she must have felt. Watching her oldest daughter try to cling to what was left of her sanity and fight and scream and use language that nobody probably even knew existed before that day. I never want to see my children have to go through something like this.
My mother is the strongest woman I have ever met. I’m proud to say I am her daughter and I would love to think that any strength I have came directly from her.
They had me on every single pain medicine that they could possibly give me without causing an overdose. Nothing helped. Nothing took it away. Two days after I had to have the same procedure done again to insure they had gotten rid of all cysts and then cauterized more. I still had to battle incontinence. I also had stools that would pass through my wounds. The pain from the discomfort of that outweighed the pain of embarrassment from leaving a trail of feces and urine trying to make it to the bathroom and not making it.
My nurses were a gift from God. Not one of them made me feel less than human throughout the entire ordeal. They would help me get to the bathroom and get me cleaned up then would help clean up the mess that was made before any of my family members got there to see it. When I cried, they cried with me. They were genuinely heartbroken watching me endure so much. It takes truly special people to work in the medical field. Especially nurses. I can’t imagine seeing what they see everyday and still willing to come back the next day. I can’t say enough good things. I just don’t have the words to express my gratitude.
To make matters worse, our youngest son ended up in the hospital at the same time as me. He had to have surgery as well. As previously mentioned earlier in the post at our wedding we had noticed he was ill. It turns out that he had contracted staph and had to have surgery on his little butt as well.
Knowing that his was in the same spot as mine hurt my heart for him so badly. Mercifully, the extent of his was nowhere near as bad as mine, but a toddler stuck in a hospital room hooked to IV’s after butt surgery was equally as awful. My poor husband was running back and forth between us. I couldn’t be around our little boy because I could not risk contracting staph on top of fighting off so many infections already. Thankfully his biological mother (I’m his step mother, but we don’t like to use the term step in our family) was able to stay with him and Brent was already at the hospital with me so he was able to see him as much as he wanted. I was in the hospital for a week as was Our son. We were then released and both had to have home health come to check on us daily. He stayed with his mother for the most part but eventually he had to stay with us. We took every precaution to prevent the staph from spreading. It was our biggest fear that we would have an epidemic on our hands or that it would cause a relapse for me.
We would remain on home health for several weeks after. My mom stayed with me the entire time so that Brent could work and she could help get our children to school. She and I learned a lot about each other during that time. It made my appreciation of her grow even more (though after everything that seems impossible) All the while she helped me bathe, get me dressed, brushed my hair, wiped my butt….it was like being a child all over again. She never said a word if I blew up or lost it and she always helped me laugh and make the most inappropriate and morbid jokes during my most awkward and vulnerable moments. Which was basically every single day. My husband went weeks without a full nights sleep. When he was able to catch a nap here and there he made a makeshift pallet on the floor beside me where I was laying on the couch and held my hand as he slept.
My children had been shuffled around so much throughout my hospital stay to get to school I couldn’t remember or keep track of where they were or who they were with. Luckily, they never missed a day or got behind on any school work. Not a single one of their grades slipped. They all made the honor roll and a couple of them were even on the principals list, which is a pretty impressive honor.
One of my best friends is a nurse and she was able to be my home health nurse. She may a lot of sacrifices to help and be there for me not to mention being strong and loving enough to continue on with the packing of my wounds. It was hard for her, I could tell, but she came every day and did everything in her power to make it less horrific than the times during my hospital stay. She text me every morning with the same question. “How’s the booty”? And a smiley face emoji.
After several weeks I was finally healed enough (so we thought) to be released by my doctors and surgeons and home health. Our son healed too, though we ended up having to battle staph again as it ended up getting passed to his sister a little while later. Finally, the staph disappeared, the kids were back to themselves and I continued back to work and tried to enjoy my newly married life without reliving such a horrible part of it everyday, but not before referring to the entire experience as The Great Buttocolypse of 2016. The year our Butts tried to kill us all.
That was nearly two years ago.
During those two years I developed a fistula from my surgeries. Basically a wound that is nearly impossible to heal. I have lived with constant drainage and chronic pain from it, as well as several more trips to the ER due to infection and new abscesses trying to form.
I was finally referred to a GI specialist. We still have no idea where my original abscess came from or why. I’ve been tested for Crohn’s disease and ulcerative colitis but nothing showed up. So the reason as to why is still a mystery. I guess it was just one of those “freak” things that I was just so lucky enough to have bestowed upon me.
I’ve undergone two fistula repair surgeries. The latest one was accompanied by an ileostomy. To help give my backside the ability to heal without disruption from needing to use the bathroom normally and help keep it cleaner to prevent infections.
The bag has been an adjustment and as of now is only temporary. I’m going on two months of having it and after some setbacks in the beginning I finally feel like it’s becoming second nature to me. I’m still working through the self conscious parts and I still have disasters from time to time (you can read my bunny blow out blog entry on easter for an example)
If you’re not familiar with what an ileostomy is, I’ll give you a basic rundown. You can always google it if you feel you need to better understand it.
They basically bring your small intestine to the surface (mine is outside my tummy next to my belly button) they kind of flip it inside out and stitch it there. They call it a Stoma. You then have a bag that it distributes your waste into, instead of it going through to your rectum and exiting normally.
I found out after my repair and ostomy surgery that people name their stomas.
After much debate with my husband about names for it (he was calling it Nemo because I stated at one time my bag sounded like an aquarium) I told him I hated the name and I couldn’t decide what to call it.
On our way back from my Stoma Nurse visit he stopped mid conversation and with much enthusiasm shouted ” John Stomas”!
He was so proud of his stupid pun that I couldn’t help but get as hysterical as he did.
Henceforth, John Stomas was born and has been a constant conversation topic since.
Monday morning, I will be going on to have an exploratory surgery and examination under anesthesia to see how my repair surgery held up or if I’m healing internally. It is still hard to tell viewing from the outer part.
If I am healing correctly and my surgeon feels as though I am ready we will then discuss my ostomy reversal. We are already planning a memorial for “John Stomas”after.
I am a ball of nerves as you can imagine, it has been a long road so far. As hard as the times have gotten I am grateful for every moment. I am hoping to hear the words “you are healed”, but just as everything leading up to this has been unexpected, I am not afraid of the outcome whatever it may be. I am ready and I am stronger than yesterday.
I have experienced all of these things for a purpose, though I’m unsure what that may be. I’m trying to help others by walking beside them through their own struggles, and by being more aware and sensitive to their own heartbreak and hardships by never allowing them to feel alone. I want to help others with my story so that they understand how important our health is, even if you think it’s something to be embarrassed or ashamed of. It’s not. Don’t let your pride or fear hold you back. There’s only one you and you’re irreplaceable.