Crohn’s is an inflammatory bowel disease which causes inflammation in the gut, intestines and digestive tract. Mostly affecting the small intestine and colon. But, it can affect anywhere from rectum to mouth.
What causes Crohn’s? Well, it’s unknown truly what causes one to have Crohn’s disease. But many believe that it’s caused by a combination of the environment, an overreaction of the immune system, or genetic. The true known cause is a mystery, and sometimes it seems it could just be the luck of the draw.
Crohn’s can lead to symptoms like abdominal pain, diarrhea, fatigue, dehydration, and malnutrition. Some people, like in my case, experience the severe and more ‘rare’ complications, like abscesses, fistulas, perforations, bowel obstructions/blockages, and frequent infections.
Crohn’s is an autoimmune condition, meaning that a person with Crohn’s immune system mistakenly attacks healthy tissue causes inflammation. Basically, the immune system has been rewired to believe that its own body is a foreign invader, and it spends its time tirelessly fighting itself.
How is Crohn’s diagnosed? There are several ways to be diagnosed with Crohn’s.
Colonoscopies
Stool Cultures
Blood Tests
Upper Endoscopy
Biopsies
CT Scan/MRI
Capsule Endoscopy
Upper/Lower GI Series
Some Facts
Now, the real question everyone is wondering, is there a cure?
No, there is no cure for Crohn’s disease. There are only ways to try and achieve remission or alleviate the symptoms. Infusion therapy, biologics, steroids (which cannot be long term as those can cause serious irreparable damage to the body), Medications (like opioids and temporary painkillers). There are surgical procedures done to many as well, including fistula repairs, and the obvious most well known – ostomies (ileostomy or permanent colostomies where the colon is removed). Self care alone can cause some positive change, but is often times not ever enough. As a Crohn’s patient we sadly are often reliant on many drugs as it can often be our only way to function.
As a woman who has had Crohn’s for nearly seven years now, it can be quite frustrating not knowing how or why I developed this disease at just nineteen years old. And it’s even more frustrating when it can seem like there is no end in sight for thronging complications and symptoms. Crohn’s is a spectrum, so while some have mild to moderate disease, and some achieve remission rather quickly, I like many others, have a severe complex and rare case which comes with several hospitalizations and Er visits a year, 20 surgeries thus far, and long term opioid dependency just to be able to experience a pain scale level of 6 on good days. But now, with an Ostomy, we can hopefully begin to see some positive change in the perianal Crohn’s (my fistulas and recurring abscesses) which has so often caused me to have no quality of life.
Patients like myself devote most of our lives dedicated to trying to understand our own bodies, what we can and can’t eat, what limits we have with physical activities, and just figuring out ways to get through each and every day. Advocating for research, preaching awareness, and sometimes screaming from the roof tops for just anyone to listen to us and believe us. This disease can make you feel gaslit, crazy and like it’s all in your head. Finding good, empathetic and validating doctors can also be a major challenge, but once you do, it’s like a weight is lifted off of you, and you can take the load of advocating for yourself off, as your GI should be the one doing it for you.
So as always, if you or anyone you know suffer through this terrible illness, please remember you are not alone. And remind yourself that you are allowed to mourn the part of you that died with your diagnosis. No one expects constant positivity and you are allowed as many bad days as you need to properly heal. Just don’t ever give up. I know it feels as though it’s all you can do, but believe me, there is more to you and your life than Crohn’s. It may have stolen so much from you, but you are in the position to take it all back.
In this article, I will be discussing all things Hydrocephalus related, but most importantly, what a shunt is and why they are used to help ease the fluid from a hydro head!
So, as you may know by now, I had my second son back in 2020. When I was 20 weeks pregnant, we discovered that Fox had several abnormalities in his scan, one of which being Hydrocephalus. So, let’s just jump right into it. What is Hydrocephalus?
Hydrocephalus, in simpler terms, is a build up in fluid around the brain. This excess fluid will therefore put pressure on the brain, which can cause damage. Being that there is no way for the fluid to drain out of the head, a shunt is required to manually drain it. Hydrocephalus is caused by an imbalance between how much cerebrospinal fluid is produced and how much is absorbed into the bloodstream. Hydrocephalus can occur at any age but is most common in infants.
So why or how does hydrocephalus happen? Well, in my son’s case, we were informed that the type of hydro he has is genetic from the maternal father’s side of the family. This is called X-Linked, or L1CAM. L1 syndrome is an X-linked genetic disorder that occurs primarily in males. L1 syndrome is caused by mutations in the L1CAM gene located on the X chromosome. The key indicator for us to know that this is the kind is because Fox has adducted thumbs. Meaning, his thumbs go inward toward his palms. The thing about X-Linked Hydro is that it only occurs in males. So when a mother, like myself, who is a carrier for this genetic disorder has a child, specifically a boy, there is a 50/50 that that boy will get this gene. Sons of female carriers have a 50 percent chance of inheriting the disease while daughters have a 50 percent chance of becoming carriers. My first son, Caspian, does not have this, but my second born, Fox, obviously does.
What causes hydrocephalus? There’s many different things that could. There’s congenital and acquired. It could be genetic, or associated with developmental disorders associated with birth defects. It can also occur from complications in premature birth or even an infection during pregnancy. Brain tumors can be a factor in hydrocephalus, along with the patient getting an infection in the nervous system or injury that can cause bleeding in the brain.
Fox’s MRI in February of 2020 of his brain. All that black was fluid and there should have been separation, but was not.
Hydrocephalus is a life-threatening condition that effects over one million Americans alone. Surprisingly, this condition is one of the most common birth defects, with about one in every 500 births resulting in it. And anyone, at any age can develop it. The survival rate in untreated hydrocephalus is fairly low, with about 50% of deaths within the first three years of age, and 80% before adulthood. But, with treatment, there’s a 95% survival rate! Shunts and ETV surgery are the two main treatment options.
When Fox was born, he spent 87 days in the NICU, as I had to have an emergency c-section in January at 29 weeks due to me developing severe preeclampsia, which almost killed me. While in the NICU, he had a few other surgeries due to the fact that he was born with his bowels disconnected, and this is called duodenal atresia. He had a G-Tube placed, but over a year ago, that had been removed, as he eats and drinks everything orally now. He also was born with a fused kidney on the left side, leaving an empty space on the right. He is more prone to reflux and UTI’s because of this, so he takes daily medication for prevention. He had five small holes in his heart which cleared up on their own. We have no idea where all of this things come from, but are currently working with a genetics doctor to see if we can find some answers! Another thing to note, that 7 weeks after he was born, he was taken down for surgery to reconnect his bowels and to place the G-Tube. But, due to improper intubation by the anesthesiologist, who had placed the intubation tube into his esophagus, he ended up needing CPR because CO2 was not coming out and they had to postpone the surgery. That will be a story for another day (probably a Youtube video) as this caused major protocol changes in the hospital we were at, and his trachea became narrow, as the anesthesiologist had damaged in. Now, anytime he is put under anesthesia with the tube placed down his throat, he usually has to be admitted overnight and stay intubated longer than usual because he becomes very wheezy and his breathing becomes bad.
So, in August/September of 2020, he had to have a helmet because the right side of his head was severely flattened. He had been 7 months old at this point, and had no shunt placed yet. But, after only a week of wearing the helmet, it stopped fitting. And this was a clear indicator that his head was rapidly growing once more. So his neurosurgeon decided we would try what is called ETV Surgery first.
Fox after shunt placement surgery
ETV (endoscopic third ventriculostomy) surgery is an alternative to shunt placement, where a neurosurgeon goes into the brain and pokes a little hole within it, to drain the fluid manually. So, Fox had this done and was admitted after, because the rapid release of fluid caused for him to have two seizures, which he had never had before. But after he was stable, we were sent home in the hopes that this surgery would do the job. ETV surgery does not always succeed, and in Fox’s case, it hadn’t. We had noticed that on the top of his head, where the surgeon went in to poke the hole, a large bump had formed and kept growing. So a month later in November 2020, Fox underwent shunt surgery placement. Fox is now over 2 years old and has not needed a revision. The shunt seems to be doing wonders for him and this upcoming September he will be put under anesthesia to have an hour and a half long MRI just to ensure his shunt is working properly.
Now, what is a shunt revision and why are they sometimes necessary? Sometimes, things can fail or get messed up/stop working. Shunts can have that happen, and when/if it does, the patient will need to undergo another surgery to replace the shunt or a part of it. Shunt revisions can be necessary when a child grows and outgrows the shunt, or an accident happens. Sports can cause issues with shunts, that is why it is always important to ask a doctor first, if/what certain sports are allowed while having a shunt. Shunts can also get blockages, which would make it crucial for a revision as well. Some doctors have said that about half of all shunt revision surgeries happen within the first 6 years. But, there’s truly no set time to when or if one is needed.
Some signs of shunt failure include:
Headaches
Vomiting
Drowsiness
Irritability
Seizures
Swelling
Confusion
Redness around the shunt site
One thing about having a child with a shunt, is the constant fear and worry we have that something could go wrong. Every fall, trip or injury causes panic. Fox has taken a few tumbles now that he’s finally standing with the assistance of objects, and when they happen, we immediately rush him to the ER. Having a toddler with so many medical issues can be anxiety inducing. And Fox still doesn’t exactly say words yet, so it’s hard to know if something is wrong. Thankfully, (knock on wood), we have had no issues when these accidents happen. But it’s always important to get them checked out just in case. Kids can be reckless and wild, and as parents, we have to always stay vigilant. But, the best thing to do is to try and not worry. I know, I know, it’s much easier said than done. But, we can’t let our fears consume us. And staying positive and keeping up on doctor appointments and visits is very important. Just know the signs of when things could be wrong, and keep informed! If you are a parent of a child with hydrocephalus and/or a shunt, remember you are doing everything you can to be the best parent possible. It’s very easy for us to get in our own heads and think we aren’t doing enough, but believe me, we are! You got this!
In this post, I will be discussing the severity of anal fistulas and the problems that can occur like abscesses and pain.
Let me give a backstory real quick. Back in May of 2018, I had been visiting family across the country in Ohio. I had been experiencing some pain within my left butt cheek for a few days, but being that at the time I believed to be a perfectly healthy person, I thought nothing of it. Flash forward to my best friend’s graduation. I was walking to the car in a large parking lot outside of the venue, and suddenly my vision became blurry. I had assumed that maybe I just needed some water, so I sped up my pace when my vision went black and I collapsed into the driver’s door of the vehicle. I was completely alone, as my friend was going to meet me there, so I climbed in, chugged a whole water bottle and tried to calm myself down. Being that I can be stubborn as all hell, I still drove after, feeling the pain in my butt cheek amplify, but trying to ignore it. I was supposed to fly back home the following day, so I truly didn’t want to be inconvenienced by this. So after dropping my friend off at home, I drove to my grandmother’s house and explained what had happened. At this point, the pain was progressing within just 30 short minutes and I couldn’t sit, lay down, or walk without an excruciating amount of pain coursing through my butt. My grandma, being the kind woman she is, had me show her where the pain was. When I reached down and touched it, it felt like a hard ball had formed under the tissue of my skin and it was radiating heat while also turning a bright red. At this point, my grandma knew we needed to go to the ER, because something was so very obviously wrong.
When we arrived to the ER, I had been absolutely sobbing in immense pain and could not do anything without feeling like I was going to die. Immediately, the doctors began doing blood work and some imaging, like a CT scan, to try to pin point what was going on. They had given me Morphine to help ease some of this butt cheek burden of mine, and eventually my blood results came back. I had over a 24,000 white blood cell count. The normal amount in a healthy human is 10,000-11,000. This meant that I had developed an infection. An infection in my butt cheek. I was mortified. Not knowing how this could have ever happened to me, my results from the CT scan came back and they discovered my lovely little abscess that has remained a literal pain in my ass for four years now. This beast of an infection had completely taken my life over. This was the beginning to my life with Crohn’s and I had no idea of it yet.
So after being admitted, they kept me on pain meds and doctors began discussing what the best course of action would be. Two days later, they had decided to do a bed side procedure to drain it. Bed side meaning I was FULLY awake and aware. I had pain meds and they numbed the area on my butt cheek, and took their little tools, cutting into my flesh and let the fluid emerge out all over the place. They informed me that this had been festering for a little while now and that sometimes abscess pain can come quite literally out of nowhere. There was enough fluid to fill a full glass. Yeah, disgusting for my first time experiencing anything of this sort. I was far too embarrassed to tell any of my friends, so I had lied and said it was in my thigh. Funny how I’m so open about everything now with no shame, but back then, I cared too much about what other’s thought and I felt gross. Let me be clear though, this is absolutely not gross. The doctors told me that even perfectly healthy people with no health issues and who even shower daily can still manage to get one of these little fuckers. They are truly evil.
I was discharged the next day and forced to stay in Ohio for 3 more weeks to keep up with my post op appointments, and also had Home Health Care coming over to my grandmas house every other day. Why, you may ask? Because the abscess had to be packed and dressed. Meaning that a piece of woven gauze had to be shoved deep up in there and pulled out two days later, replacing it with a fresh new piece. That way, the wound can stay so fresh and so clean. That experience, sucked even more. Because having nurses poke around with the end of a thin wooden stick while shoving gauze into your incision was hell.
After I returned home to Arizona, I had gotten in with a surgeon who decided to take a look at it. They informed me of the same the prior doctors had, that anyone can get one of these, but it could also be related to underlying causes. But alas, I was given no referral to any other doctors, and was wished best of luck in hopes it would heal itself from there. It hadn’t. And a month later, I found myself walking around in college, feeling even more pain once again. Something felt terribly wrong and I worried that another abscess had possibly formed. So, my mother took me to the ER and long story short they had discovered that not only had another abscess poked it’s ugly head back in my cheek, but something called a fistula had made itself comfortable in the home of my body, connecting itself to the infection site. This warranted a referral to a GI. Finally! Someone who can give me some damn answers on why my ass literally hated me. This GI had decided we needed to get a colonoscopy ASAP to first address if we had something else going on up in there. So, a few weeks later, I found myself under the influence of anesthesia, and waking up to a diagnosis of Crohn’s Disease. “What the hell?” I had thought to myself, never once hearing that term before. Ha, look at me now, guys. Well, because of this, he knew we needed to fix this fistula issue before it closes and entraps the abscess in my body once again. The worst thing that could happen when you have recurring abscesses, is that wound closing because then you’ll need to get it drained, and drained, and drained. It would be an endless cycle of cutting open the skin and well, you guessed it, draining.
So, here’s where we get to some technical stuff. What the hell is a fistula? And why do they happen?
A fistula can be described as an abnormal connection, or as some call it, a tunnel, that connects two organs or vessels that are not supposed to normally connect. They can be caused by injury or surgery. So in my case, this abscess formed a pocket in my butt cheek and eventually a tunnel formed from the deep pocket, all the way out to, well, my butt hole, due to the drainage surgery of said abscess. The only ways to really truly cure a fistula would be by having surgery and being on medicine. I will be beginning Remicade infusions for my Crohn’s, and thankfully, Remicade helps heal fistulas as well. But clearly, I have had several surgeries on said fistula over the span of the past four years.
Obviously I explained what happened with my first abscess/fistula situation. When you have recurring abscesses and a fistula, the best course of action, at least in my case, was to place a seton. A seton is basically a little rubber-like band that they thread through the fistula to make a loop. The purpose of a seton is to keep the fistula open so when another abscess forms, it will drain out of the hole. The shitty part of that, is I have worn pads every day for the last four years because the constant draining of my second butt hole causes to leak through my underwear and clothes. It’s gross, I know. But I’ve always said that these things aren’t pretty, and I’m not going to sugarcoat any of it. So, after getting that seton placed the first time around, abscesses still occur, but they drain out and so on and so forth.
But, last year in 2021, my seton snapped and fell out. This immediately worried me, as now that hole that needed to remain open to continuously let out any abscess fluid, blood and pus, would begin to close and entrap the infection within me once again. So, I saw a surgeon who set up surgery and got to work. When I woke up from surgery in April 2021, I was told that he could not complete the seton placement, because the scar tissue in there was, and I quote, ‘hard as bone‘. But, he knew we needed to get it done, so we set up another surgery where his partner/specialist came in and they managed to not only get one seton in place, but TWO. So there I was thinking that my problems were solved and I’d be good to move on from this butt cheek nonsense.
I was wrong, per usual.
About a month ago, I woke up in the morning to extremely bad Crohn’s pains. A few days later, I practically couldn’t move and I was struggling to even function so my husband took me to the ER and sadly, they didn’t seem to believe me. Look, I know more than anyone that the opioid crisis is a major epidemic. But having an invisible illness like Crohn’s, makes it very hard to find pain relief without looking like you just want some drugs. It probably doesn’t help that I have a sleeve of tattoos, because let’s be honest, when you’re tatted, you get judged. So the ER dismissed my pain and luckily a nurse heard me crying and got the doctor to prescribe me my nemesis, Prednisone. (Steroids can be a great temporary relief from inflammation, but I hate them and hate the side effects. And they should NOT be used for long term prevention). So alas, I went home and after two weeks, the prednisone just seemed to- stop? I was in pain once again and this time, I spent a whole night pooping my guts out and vomiting my brains out. I couldn’t keep any fluid in me, and I became severely dehydrated. In the morning, my grandmother took me to a different ER, where they did a CT scan and saw, yes, my inflammation was horrible. My potassium levels had dropped so I was given IV potassium, and given lots of fluid and Morphine. But guess who decided to make another appearance! My lovely little abscess friend. And the doctors informed me that this abscess was deep and festering for quite some time now. Now, this hospital I went to didn’t have a surgeon that felt comfortable enough to perform on me, so they transported me in an ambulance to a bigger one. And boy, I loved it there! The 6 days I was there was the most amazing experience I have ever had at a hospital. Every single nurse, doctor and staff member was absolutely amazing. I had never felt so validated and comfortable in my life. But the pain was worsening and at one point I was hyperventilating in my room and screaming and crying in pain. That’s when they stepped up the pain medication game to Dilaudid rather than Morphine. This calmed me down and helped tremendously, but remember, pain meds are only a band aid for short term solutions.
So anyhow, a surgeon came to see me and ultimately decided we needed to put me under and clean out the abscess and pack it with gauze. So, Saturday afternoon I was taken down for my tenth surgery and the surgeon cleaned out the fistula/abscess and packed it with woven gauze. Sunday afternoon, they took the gauze out and then Monday morning before my discharge, the surgeon came in and re-packed it. Today, I had to remove it myself, and now it will stay removed. I still have the setons placed and in the hospital I was on IV antibiotics. I am now on oral antibiotics for 4 days and Prednisone for 26 days, for my Crohn’s pain and inflammation. But, due to this admittance, I found myself an amazing new GI who is currently working on getting me approved to start Remicade in a few weeks when my infection is gone, along with an oral biologic. We are taking action to combating this horrible disease that continues to find ways to make my body miserable, and I have never felt so confident and positive before in my life. My concerns were validated, and my pain was acknowledged and I am so confident with my new team of doctors and ready to kick Crohn’s in it’s ugly ass!
So to recap:
Abscess: A pocket of pus, blood and fluid caused by an infection that can form anywhere inside your body.
Fistula: An abnormal connection, or ‘tunnel’ between two body parts or organs.
Seton: A rubbery, silk or nylon suture that is placed during a surgical procedure in a fistula tract and tied externally to keep the fistula tract open to allow the abscess and infection to continue to drain out of you, helping you heal.
And remember, friends, if you ever feel a persistent pain radiating in your butt cheek, CALL A DOCTOR. Don’t let it worsen, because the bigger it gets, the harder it is to manage. Don’t be like me where you try and push through it. Being stubborn will forever be my downfall.
Why I made the hard decision to get my tubes removed, what a salpingectomy is, and why it was crucial for me to consider not having anymore kids.
Hello everyone, once again. I’ve decided to go over a sort of touchy subject, as it’s hard to acknowledge the fact that I will never be able to become pregnant again. At first, I was 100% excited to never be pregnant again (I hate being pregnant for an abundance of reasons, one being the morning sickness I got both times and another is the low confidence I get as I become bigger.) but once it actually happens, and you really cannot, it kind of sucks. Especially only being 21 (and I always dreamed of having tons of children). So why did I make this decision?
Well, for starters, I’ll give you a little backstory of my pregnancies. My first son, Caspian, was born when I was just 18. It was a week before I turned 17 that I found out I was in fact, pregnant. At first, I was TERRIFIED. But the idea of a child grew on me and I was overcome with love and happiness and excitement. My pregnancy was healthy for a while. Despite the morning sickness all day and night up until the day I gave birth at 37 weeks pregnant. Around 35 weeks, I fell out of bed one night, and hit the dresser. It wasn’t that hard, honestly and I mostly just cried because I was startled and it scared me. The day after my mom and I went out and did a maternity photo shoot in my Star Wars Padme cosplay. But when we were there, I was experiencing cramps in which I just assumed was braxton hicks contractions. But as they progressed, I finally decided it’d be best to go to the ER just to see what’s up. So we go, and there they see that I am in fact having real contractions, which were causing Caspian’s heart rate and oxygen to dip pretty drastically every time. They monitored me in the hospital for a week, before deciding to let me go home and informed me I was to come to the triage every 2 days to get monitored for an hour. My first time going back, they admitted me once more, and also did a scan, noticing that there was a placental abruption. I was freaked out. But they wanted me to wait until I was exactly 37 weeks, so there I waited yet another week until they finally induced me at midnight and I gave birth around 7:40 am to my little bean. They proceeded to show me the abruption, while announcing how much larger it was than they had thought, so it was good he came out. But other than that, we had no other issues and Caspian is about to be 3 with still no health problems.
Now, my second pregnancy, as many of you know, took a completely different and drastic turn. Those months of being pregnant were the most terrifying time in my entire life. So let’s start from the beginning. I found out I was pregnant with my second son, Fox, in August of 2019, at 20 years old. And honestly, my fiancé (husband now) and I were actually pretty excited. Him being a first time dad, especially added to the thrill. But toward the end of August, a scary situation happened that I will never forget. One morning, I woke up, and went to the bathroom, only to notice blood. And I mean a SHIT TON of blood. Dark red blood. And I immediately began sobbing, thinking I was having a miscarriage. Now one thing many people do not know, is I had had a miscarriage prior to this very early on that really messed me up emotionally. So right away, Chris and I drove to the ER, frantically but trying to keep positive. We arrived, and at the time I was I think maybe 3 or so weeks pregnant? I can’t totally recall. So they get me into a room and take me to go get an ultrasound. After, I’m escorted back to the room where my then fiancé was and we waited. And waited. And waited. Until finally a doctor came in and informed me that there seemed to be a sack of something in there (I’m so sorry, I forgot what it was called but it was a ball of blood) and couldn’t detect any sign of a baby. So they called it a “threatened miscarriage”, and our hearts just broke. They had given me a number to an OB who wanted to see me in the office in exactly one week and wanted me to get bloodwork done in 3 days because the bloodwork could determine if my pregnancy was progressing. So after three terrible, nerve wrecking, heartbreaking days, I went to get my blood drawn and then 4 more days passed and I went to the OB’s office. I was immediately taken into the ultrasound room after meeting him, and as they scanned around for a little while, there it was. A little baby bean just chilling next to that gross weird sack of blood. It was the biggest weight lifted off my chest to see I was in fact not having a miscarriage. So from then, I continued to have routine checkups.
Now, fast forward to about a week into November. I was 21 weeks pregnant having my mid pregnancy scan, when the room was complete silence. I was alone, as my husband had to work, and I had been used to going to appointments by myself from my first pregnancy. After an hour of the ultrasound, the tech left the room, and came back insisting I go wait in my OB’s office so he can speak with me. And that’s when I knew there was something wrong. I never did that with Caspian and the vibe just felt- off. So I wait. And wait. And wait. For about 45 minutes as my OB had actually been performing a surgery. Once he was done, he came in and sat down. (My OB just an fyi is the most amazing man and I still to this day text him with questions I have and every time I see him, he always asks for pictures of Fox).he looked at me and informed me that my son had multiple anomalies, one including fluid on his brain (hydrocephalus), and what seemed to be some problems with his abdomen. He informed me as much as he could about Hydrocephalus, but this was now a more specialty doctors area, so he referred me to an MFM (maternal fetal medicine doctor). I had to wait until after Thanksgiving so for a few weeks I wondered so many things that just stressed me out majorly. I socially distanced myself (which we all seem to have to do now lol) from pretty much everyone except Chris. I was going through a lot of depression, more than I had before pregnancy, and I just felt lost and scared. So I go to my MFM doctor and they do a like, a 2 or something hour ultrasound, where they find and confirm hydrocephalus, but also duodenal atresia (his intestines weren’t connected) and some tiny holes in his heart (you may read about these things and what they mean on my other blog posts). So from then on I had bi-weekly appointments with my MFM to do ultrasounds and such. Eventually, they find that Fox’s thumbs are adducted (meaning they go in toward his palms, which is something he still struggles with and will probably need splints down the road).
Now adducted thumbs is an indication of X-Linked hydrocephalus (L1cam). This meaning, he got this from ME. Basically, x-linked is only in boys, and mothers/girls can be carriers of it. They asked if Cas had any disabilities and were shocked to find out no. But in short, it’s a 50/50 chance of any future sons I may have to have hydrocephalus as well. All the other issues this poor kids suffered from, well, we have NO IDEA where they came from!
Well, then a month after my wedding in December, Fox was born in January. But NOT because of him. Sadly, because my body was failing. I had to go in for Non-stress tests every week, and the first one I went to they noticed my blood pressure was SKYROCKETING. This was on Friday January 24, and I was only 28 and like 5 or 6 days pregnant. My ankles were swollen to shit, and they grew concerned that I may have developed preeclampsia. So here I was, being admitted where they planned to keep me until 34 weeks where they would take him out then (because oh, forgot to mention, two weeks prior they saw that my umbilical cord wasn’t transferring nutrients to him anymore and his abdomen wasn’t growing but his head still was and I had a LARGE amount of amniotic fluid build up in my body, hence why my 4’10, average of 115 lb ass was now weighing 157). So I’m admitted into the special care unit and then move to labor and delivery, as they gave me high blood pressure meds that calmed my body down.
Well then, Sunday comes around and I wake up around 1 am Monday to my nurse holding the monitor me and looking scared. I asked what’s happening, and my throat is rattling like crazy. Other nurses begin to rush in where they inform me that Fox’s levels are dipping because my body wasn’t doing well. Remind you, I was on percocets and loads of other medicines so I have a very hazy memory of most of this. But then they also discover fluid had developed on my lungs. And my preeclampsia basically could have killed me. So I call my husband, who’s at home with our animals and he rushes to the hospital, where they take me back into OR and put me completely to sleep, taking Fox out at 2 lbs & 3 oz at 29 weeks pregnant via emergency c-section, and then he ended up staying in NICU for 87 days, finally coming home April 23, 2020. They informed me that the only reason he had to come out because of me and my safety as they feared for my life.
After this, I was told that my chances of getting preeclampsia are high if I were to get pregnant again, and that could be life threatening to not only me, but the future baby’s life as well. But then the fear of me getting pregnant with yet another boy, and him having a very high chance of having hydrocephalus or other issues, it all just became clear to me. My body is not meant to have more kids again. On top of my Crohn’s Disease that hit me like a brick fucking wall after having Fox and being practically in remission my whole pregnancy, I knew I just couldn’t put myself through it again. But I also knew, there was no way I could handle life if something were to happen to a future baby of mine. After doctors advising me of my safety and my baby’s safety, and of constant discussions with my family, I knew the best choice would be to just be done with it. Because I know one day, when I want a child again, I will 100% adopt, as there are so many babies in this world who need homes and I have one to give.
Now, you’ve made it this far, don’t back out just yet! I’ve got some information for you.
Salpingectomy- what?!
So what the hell is that big word I just said? It’s a tubal removal, baby! If you only have a partial tubal removal, you have a slight chance of still getting pregnant, as 7.5 women out of 1,000 have still gotten pregnant. But if you have both tubes removed, you can only get pregnant through IVF. Even though there is a rare case of a woman getting pregnant without any tubes, which is crazy. But anyways, Salpingectomy is the surgical removal of one (unilateral) or both (bilateral) fallopian tubes. Fallopian tubes allow eggs to travel from the ovaries to the uterus. A partial salpingectomy is when you have only part of a fallopian tube removed. http://healthline.com
I found out about this procedure, which is an alternative to getting your tubes tied, by my OB who prefers this method compared to getting your tubes tied. So instead of going in and burning the tubes (or whatever they do these days) he goes in, for me laparoscopically, and completely cuts your tubes out, removing both of them entirely. There were three small incisions made in my abdomen. Two on the lower right and left side, and one on the upper left side. The purpose of this compared to just getting them tied, is to reduce your chances of ovarian cancer.
The procedure in total took about an hour to an hour and a half, while I was out completely under, and it took me another hour to just wake up, and boy did I wake up. I absolutely hate surgery and anesthesia. I’ve had a total of seven in my lifetime, starting with getting tubes in my ears at 2 years old, and my past five ones being in the span of 2 years. So waking up, is never a fun experience.
In recovery, I was given three doses of fentanyl, and some norco, which norco does NOT work on me, so they prescribed me percocet instead. I waited in recovery with my husband for about an hour or so until I finally felt ready to go home. So it’s just an outpatient procedure, which is awesome because I’ll pass on the overnight stay in the hospital. The recovery time is up to six weeks and I was told that it will be difficult to walk for the next three days. Being as I just had this surgery TODAY, I can tell ya, this shit is PAINFUL. I also have a really low pain tolerance, and the air from them inflating my stomach, that went up into my shoulders, hurts like HELL and the only way to get it out is to walk around which will cause you to burp. But um, hello, how the hell do I walk around when I’m in this much pain? Because seriously, It’s almost 3 am and I’m still up, in pain, trying to keep my mind off of it by writing this post.
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So here’s some info on getting your tubes tied. When getting tubes tied (tubal ligation), there are a few ways this can be done. And only 1 in 200 women get pregnant after this procedure. Tubal ligation — also known as having your tubes tied or tubal sterilization — is a type of permanent birth control. During tubal ligation, the fallopian tubes are cut, tied or blocked to permanently prevent pregnancyTubal ligation prevents an egg from traveling from the ovaries through the fallopian tubes and blocks sperm from traveling up the fallopian tubes to the egg. The procedure doesn’t affect your menstrual cycle. https://www.mayoclinic.org/tests-procedures/tubal-ligation/about/pac-20388360
The hardest part of all this, is truly knowing I will not have any more kids. And it’s harder knowing the reason I can’t is because of my body for the most part. But everything happens for a reason, and as I said before, there are so many children and babies in foster care and available for adoption, that they deserve a chance. They deserve a life or some sort of normalcy. So here’s to a future of adopting!
In this article, I’ll be discussing self love, the highs and lows of life, and toxic situations, along with how to conquer insecurities within yourself. I will be discussing parts of my life that have impacted me for a long time, and which helped me reach an outcome I never could ask more for. This article isn’t just meant for people who suffer from Crohn’s, but for anyone who suffers from these inner demons we always seem to find. Whether you’ve experienced abuse, losing a close friend, or an absent family member, these are all things we can overcome. It just takes time.
Warning: This article contains themes of rape, self harm, depression and trauma.
I’d like to start off with telling you all a little bit about my past with depression and personal insecurities. When I was twelve, I suffered from the loss of my grandmother who I was deeply close with. She passed from breast cancer which also spread into her bones. After, that, I found myself realizing how hard life could be. I didn’t have my father in my life growing up for about 13 years, due to substance abuse, and she was the closest thing I had to him (she was his mom). After her funeral I began questioning why my father wasn’t around and why life was so hard and wondering if there was a God, and if so, why does he take the most innocent and beautiful souls from us?
When junior high started, I found myself being bullied. Rumors were constantly spread about me at my tiny private school and they would really make me look down on myself. I struggled with weight, due to girls calling me fat and a rumor that I was pregnant (in seventh grade, I hadn’t even had sex yet *eye roll*). When eighth grade began, the bullying intensified. Girls began telling me to kill myself and calling me way more harsh names. I was self harming at the time, and they’d make fun of that as well, while encouraging it, so I did what any rash teen would do, and ran away with my then boyfriend. We got caught, I went to a juvenile detention center and then spent a month on house arrest. I started at a new school, and things began to seem somewhat better. Until the boy I was dating began turning abusive. The yelling and fighting and controlling turned into pushing and shoving and threatening to kill himself, or hurting me. I was fourteen when I fell in love with him and stayed with him until I was sixteen. On top of this, I fell victim to sexual assault and convinced myself that “I’m his girlfriend, this is what I’m supposed to do“. Even if I told him no. I kept this all to myself, for fear of him and fear that he was right and no one would ever “love me” the way he did. Then I ended up leaving him and he showed up at my school, dented my car door, and later that night broke into my home when I was home alone and I was forced to call the cops on him. Which resolved nothing except I never heard from him again.
For a very long time, I was in denial about what happened. I didn’t really understand until people helped me realize what I had gone through. I couldn’t accept it. I hated him for a very long time and then recently I realized, I can’t continue to hate someone, especially when they don’t even realize what they did was wrong. I tend to make up excuses for peoples actions and I believe we just were too young to understand our emotions. We fell in love hard and fast and we didn’t know how to process that so we became controlling and possessive. That led to abuse that I didn’t really realize was abuse until much later. But like I said, we were young. Now, I’m not excusing his actions, but, I have learned to forgive him whether he knows that or not. I can’t continue to hold on to this anger, as it’s only taking a toll on me. What’s the use in being angry with someone, especially when I haven’t spoken to them in nearly 4 years. It took me a very long time to be able to call what he did to me, rape. Because it’s such an ugly word. And most people when they think of rape, they see it as violent or from somebody they didn’t know. You don’t usually think of a boyfriend raping their girlfriend. But no is no. And of course, there were times I said yes, but there were also times that I did say no. And that’s enough for it to be assault. It’s hard to think that someone who claims to love you, could do that. It makes you build up this wall around you that you may never want to tear down. And there are still days, 4 years later, where I can’t handle anyone touching me. Where things remind me of him or I feel how I felt when I was with him. I also had hated sex for a long time, and couldn’t find a way to enjoy intimacy, until I was able to meet the right person.
In the images below, there are texts from that person from when we were not together, but I was still to scared to cut him off. This is what I endured, yet still couldn’t call it abuse. If a man says these things to you, it is ABUSE. Warning for below photos, as they are vulgar and depict abuse.
I was 14-16 years old when I was with him. Remind you, these texts were from when I was either sleeping, with family, or at work. I was accused of cheating, when I never did. (He was also the only man I had ever slept with at the time). I was threatened with a gun he owned, and cheated on by him. He would make me send photos to him of where I was just to prove it to him. I wasn’t allowed friends of either sex. He once broke up with me for seeing a movie with my step dad. I couldn’t wear tank tops or show my shoulders or belly. On Halloween one year, he drugged me, raped me, and then cried because I was shaking so bad and my eyes were red and I thought I was having a seizure. I threw up eight times that night. It took a lot out of me to end this relationship, but it helped me grow as a person and learn, and truly, I hope the best for him and that he gets better.
One thing I always say to people, is moments are temporary. Even the ones that feel like they will never end. And that’s something that takes a while to fully grasp the concept of. Sometimes it feels like whenever my life starts to fall into place, something happens, making it fall back apart again. But that’s when I have to remember that everything happens for a reason and eventually, this all will have been for something. I believe everything that has happened to me, has made me the person I am. I’ve grown from these challenges and I’m moving on. It takes time but healing is worth it. I have learned a lot from having an absent father. I used to want him in my life so desperately. My mom told me that when I was 6 years old, I used to ask her why my dad didn’t love me. Finally she had told me when I reached an appropriate age, that he was a drug addict and it was never my fault. When he got married to my now ex-step mom, I saw him more. Mostly due to her, because she wanted me there, especially because she had a daughter my age who is still a close friend. But then after about four years, they got divorced and he seemed to fall back into habits. He is so far from being fixed, it seems. And it took me a long time to realize I shouldn’t have to be the one who fixes him. He is the adult, whereas I am his child, so he should be the one reaching out to me. But, if it weren’t for me contacting him first, I’d never hear from him. And so I took that up and decided it was for the best, because having him in my life seemed to just be more issues than needed. But man, I used to blame myself so much for him disappearing, but I finally reached an age where I figured out it was not my fault. And what is best for me, is to choose my family. Because it is a privilege to be a father, but not a right. Which I had to realize with my sons father as well. But I truly stick to the fact that you choose your own family. Whether it’s cutting out certain family members because their lives seem to collide with yours, or if it’s adding friends in as family. We should never have to be around toxic people, if we don’t want to.
Self love and acceptance is a challenge I believe many people have yet to overcome. We all struggle with something. Whether that be our weight, the way our face is shaped, our nose, a bag attached the their abdomen, etc. There’s something we all are insecure with. And that’s okay. You can still love yourself and not like certain things. But the key to healthy relationships with others or with life, is to love yourself first. Yes, it’s a tad cliché, but am I wrong? I mean how can we love somebody when we can’t love ourselves properly? And then we will find ourselves settling for less than we deserve and it just becomes a chain reaction. I found myself in yet another scenario of abuse, which tended to be more mental abuse if anything, but after my son was born, I couldn’t keep either of us around out so I left. Now, of course I wasn’t perfect. I had my times too, where I was at fault and should have approached things differently. But you can only take so much pain until you yourself becomes toxic too. And that’s the hard part is excepting when you are the toxic person in someone’s life as well. And we all have been. Whether it be a friend, family or spouse. Each of us has been in a place where we haven’t been good for somebody, and the only thing you can do is remove yourself from that situation. I spent a year where I mostly had little flings here and there, but never fully let myself get to that vulnerable stage with someone. I had spent more time focusing on myself, rather than people. And it got me to a place of happiness. I figured out how to love myself by hiking and writing and even just spending time with no one, but me. Because in the end that’s all you have is you. We are born into this world alone, and we die alone. A lot of people hold fear of being by themselves, which I was one of them. I always had to be texting somebody or facetiming someone, but finally at 20, I’m at an age where I don’t feel I need that anymore. I go through times where I completely disassociate with all social media and just do me for a bit. And that is totally healthy. We need that solid concrete ground for us to feel safe within ourselves. We can’t always depend on other people to be there when we fall down.
Everyone learns how to love themselves in a different way. Some people, sadly never do. But if I can preach one thing on this site, it’s to try. There are of course days where I feel insecure or down about myself. Or I can’t stand myself even, but after a certain point you have to move past all that. When I had the ileostomy bag for four months, I was on steroids which made my face look HUGE. I hated leaving my apartment and couldn’t stand the site of myself. It took a long time after my reversal surgery and after I took myself of those steroids, for my face to go back to normal, and I really never thought it would. It was defeating. It took me so much time to get to a place of feeling beautiful, and felt like it was destroyed in just a simple two weeks. My heart was broken because of the insecurity. But I got better and everything fell back into place, as it usually does.
Now, being pregnant with my second son, I’ve experienced a very deep low that I hadn’t been in in a while. The only people who seemed to understand was my fiance and mom. First trimester, my hormones were going insane. I never wanted to leave the house. I felt tired all the time. I felt really lonely even though I wasn’t and I just felt very very depressed. It was challenging and I felt like I had to justify to people constantly on why I was moody or lazy. Hanging out with people made me just shut down entirely. I couldn’t be in a social setting without getting really consumed by depression and just mood swings. I tried having a Halloween Party and it just blew up in my face. I just had no energy. As soon as I hit around 18 weeks, I felt back to normal. I was able to finally start socializing again and felt like I could be myself. But at this time a lot of people seemed to not like me, or just not want to be around me. And you know, I made my bed so I needed to lie in it and accept that I put this on myself. So of course I owned up to it and apologized, explaining where I was coming from, and some of my friends were so understanding, and some were not. But at that point, after you put that first initial step of effort in, and they don’t reciprocate, it’s not on you anymore. You tried, that’s what matters. And now, at 23 weeks pregnant, my baby seems to have a LOT of health issues and basically I’ve said if people can’t accept that sometimes I’m not in the best mood, I really don’t care. And you shouldn’t have to always be so concerned on how people view you. Or how people are offended by you being in a bad mood. We aren’t all perfect, and people need to understand that. So don’t ever blame yourself if a person has took it upon themselves to not accept you. That’s their loss.
It’s not often you find good friends who stick around. Especially when you go through some really dark places. Not only eight months ago, was I in such a dark bad place that, yes, I became a person who was practically unrecognizable. I was depressed, in a way that I was trying to do everything in my power to hide my true self because it was just a bad time for me. I don’t remember much, as I was drinking heavily and trying to suppress some dark emotions that I have since then, overcome. But it actually hurt a lot when the friend who I thought would help me through it or even just be there for me, as she knew that it would pass, left. I don’t blame her though, because she probably assumed I was just gone for the worst and that that was me. But I was actually concealing a lot of emotion. I was possibly in the darkest place of my life and I understand that sometimes people need to remove themselves to better their lives but things were said that will constantly be ingrained in my brain. Because it’s not like I was permanently changed. I don’t even know that person that I had become and thinking back on it, I still don’t. But what confuses me is that every 20 year old or so, has partying days. I don’t know any of my friends who don’t party. Yes, it was excessive, but it was necessary for me to grow as a person. It’s a really hard thing admitting when you are wrong. And I can admit, yes I was not a perfect person or friend. I had times where I had acted out of selfishness. But you must remember, it takes two people to cause a fight. And yelling isn’t always the best option. If we had sat down and talked about it all in depth, maybe I would have understand right then and there. But things were said, on both parts, and it just resorted to something that shouldn’t have happened. I’ve grown from it. And even though to this day it still is painful for me, as I loved this friend a lot, I know that it needed to happen at that point in time. We both were toxic for each other. Not just me, and not just her. Both of us. And sometimes admitting that, can be challenging. But you get nowhere from saying “Oh, it’s their fault. I didn’t do anything wrong, blah blah blah.” Because everyone perceives things differently, and in this case, we both were wrong for how it was approached and dealt with. And that’s a strong powerful thing to do. But god, I don’t know of any friends who were roommates, that hadn’t had a huge falling out like this. My mother even told me that when I was one years old, she and her best friend lived in an apartment together and they had a huge fight, just like this one, and didn’t speak for a whole year. And now? Still the best of friends. It happens, it’s not unusual. I just wished that I could have stated my case to her. But I don’t act reasonable when I’m angry, and it basically just turned into a screaming match, on top of me balling my eyes out, because I knew I was losing her for good. And it’s hard, God, it’s fucking hard. But the best thing you can do for yourself, is point out the problem on BOTH ends, solve it on your own, forgive them even if they have no idea you’ve forgiven them, and move on. And hey, maybe one day, you two will talk again, in my case, we have not. But that’s okay too. It’s okay to miss somebody, even if they hate your guts. Because the best thing you can do in a world full of negativity, is be a little positive.
Now, you may ask, “Mara, what was the point to this extremely detailed article about your life?” And I may answer with something like, “To show you how to love yourself!” But that’s not the case. I still have days where I don’t fully love myself, or feel confident. And that’s okay! We are all human, it’s just in our nature to have insecurities. But, you must be the person who picks yourself back up after a downfall. You can’t depend on others to. You must be the person to realize your faults after arguments, or disagreements. You must own it. But you should never feel obligated to let people take advantage of your kindness. You should also always try to picture yourself in others shoes, and reason with them. Life is suffering, and the only way to make the best out of things without putting yourself down in the progress, is acknowledging the fact that life can be a huge bitch. Just learn to get over it, and confront your problems head on. So I guess the main point to this article is to show you, we all go through shit and you never know what people are going through behind closed doors. You just gotta learn to deal with it to ultimately find peace and happiness. And remember, with time comes healing.
Crohn's Chronicles 