Crohn's, Celiac's, (severe) IBD type 5, (severely) Lactose Intolerant, and I'm only 23.
Last updated: December 2021
Unfortunately this is very long, much longer than I both intended and expected, but I'm not sorry that I wrote all of this, it's my actual life story and personal experience with this awful disease and other minor/major injuries and issues. While including a small part about my mom, who also suffers from Crohn's since she was 19 years old.
I had started my symptoms early, while I was just starting 8th grade still; but it didn't really hit me hard until about the middle of my 9th grade year. Suddenly I found myself having to constantly ask for permission to use the bathroom in every class period, and often several times in a single class period because I had nothing but diarrhea. I was in a lot of pain that I didn't know where it was coming from, or what was causing it, and no amount of over the counter medicine worked unless I took a dangerous amount at one time. And even then, it was only a, very, temporary relief. I would be able to feel like a normal person again for about 2 hours; but only if I took 16 over the counter Imodium pills (you're not supposed to take more than 4 in a 24 hour period if that helps visualize the danger I would put myself in) and at times, depending on the situation of where I am at the time, I would have no choice but to take more. For years I suffered from the pain, fatigue, and overwhelming embarrassment from having diarrhea all the time. Having to suddenly run out from the classroom without even asking permission because it's that sudden; being called after as I'm running down the hallway in this awkward way that would get me to the bathroom faster before I end up being sick right there in the middle of the hall, or middle of class. My locker at school basically held spare clothes to change into with the occasional spare papers here and there.
I lost my dignity long before I ever got to see a doctor about any of this, long before I knew what was wrong with me. Going to a public bathroom and finding it filled with people and having to wait in a line, or just girls visiting with each other in the bathroom while I'm sitting there on the toilet, rocking back and forth on the seat and just concentrating on the amount of effort it took to have to hold in what I knew was going to be awful, praying they will leave so I can go to the bathroom (I can't make myself go to the bathroom if there are people in there, no matter what I had to do. I have always been that way and I'm not holding it in by choice). This only made my preexisting minor anxiety grow into this monster with its ugly head reared back, ready to attack at any moment, from any sort of ordeal. Causing me to have a lot of break downs at night, or even as soon as I walked into the house after school. (I am now having to take medication for my bad anxiety daily, it is not an as needed pill, I have to take this pill every single day just to get through the day and work).
I went from maybe getting sick (like a cold or something like that) once every few years (or twice a year but that was rare) to getting sick 6 times a year. Then 11 times the next year, and steadily growing. Soon it came to the point that I pretty much expected to get sick and have fever at least twice a month (if I was lucky) or more. I was never taken to a doctor during this time until the end of my senior year because my dad and step mom (who both are the type of people who never get sick, and if they do its once every decade or so it seems like) believed that since they never got sick, it was just impossible for anyone else to get sick, that I just had to be faking it, and would never take me to the doctor, or even the emergency room (not even when I hurt my back in 7th grade, I have a moderate-severe spinal trauma that never healed properly which is why the bottom of my spine that connects to my pelvic bone and 6 and 1/2 inches upwards, my vertebrae no longer bend and move, it's just hardened like stone which causes chronic never ending pain from my lower back that travels up my spine and neck, and down my legs. I have some pretty bad Sciatica from it and my legs constantly give out on me randomly while I am walking, or if I stand up I have to make sure I am holding on to something for a bit or else I am going to fall. My right leg is also greatly desensitized to touch compared to my left leg and needs extra pressure to be able to feel things really. I end up having to stay doped up on several Nuerotins because my pain isn't from the muscle, its all nerves. And despite having taken the pills for years now I still have no tolerance for them so I have to make myself suffer throughout the day while I am at work and wait to take them until I am home or else I will not be able to function properly at my job and even drive home). I was just being told repeatedly by my grandmother (who I was living with at the time) and by my dad and step mom (who my mom gave them the temporary custody of me while I was still going to school in that little town that I lived in with my dad and grandmother) that I was not sick, I'm pretending to be sick for what ever reason, that I was trying to get out of going to school, or get out of going to a family event, or even to avoid just spending time with family. It was very hard to listen to all of that. (My mother was left in the dark until the end of my Senior Year, for reasons I don't really know and I just never mentioned it because I was too embarrassed to say anything even though she has had Crohn's since she was 19). Not only did it make me feel even worse about myself because I couldn't control this, but it made me start to be depressed because my own family wouldn't believe me, even though they can clearly see I am sick, see that I have fever, and as embarrassingly as this is, they could even hear me in the bathroom being sick and hear my moans of utter pain while I would be in there for hours at a time just to go right back in there not even 10 minutes after I finally came out. I guess it sounds ridiculous to others that it would make me go into depression, but to me, that was just so hard for my mind to handle, that I didn't have the support at home that I most definitely needed, because I honestly thought I was dying and I had no idea why and it seemed like they never even cared. It was very hard to maintain friendships with the only three friends I really had in high school, but I did it. And thankfully, those three never judged me or made fun of me, or even attempted to make me feel like a disgusting person despite what I did in the bathroom at their house. They gave me support when I was sick and even now when we don't see each other near as often, I am still thankful for having them there for me.
At the time, in my senior year, I thought I had just suddenly became Lactose Intolerant; because I noticed that I would get worse after having like a bowl of cereal, and thought that was where all my problems were coming from, and thus I started avoiding milk and dairy, and even taking the over the counter medicine for it if I couldn't avoid it. But that didn't stop anything, I was still in severe pain and my sickness was just getting progressively worse. Skip to next year and I'm just graduated from high school, and I couldn't do anything. I was suffering from sleepless nights (going as far as up to 7 days in a row before I finally just crashed where I was, either in bed or on the couch) thanks to my Insomnia episodes acting up (this was nothing new, I've had Insomnia since I was a toddler, just it comes and goes in waves or if it lasts more than 4 days, an episode), chronic fatigue even when I get sleep, no matter how much sleep, I was always tired. Always sleepy. I started to get in the habit of taking naps every day, at least once or twice a day, even if I hadn't done anything to warrant that much tiredness. Simply getting up and being around my family for the day, was so draining. Getting out of bed was just so draining. Performing every day jobs and habits, was so draining. And yet still, my sickness was growing steadily worse. I was doing nothing active, no exercises or anything any more, and I hadn't since the summer before 11th grade, because of my sudden weakness and chronic fatigue; and yet I was losing weight at an abnormal rate for a very long time, before I would just gain weight just as fast as I had lost it it seemed, before loosing weight again for a long time and then suddenly gaining so much weight and this just kept repeated in an awful cycle that made my self esteem issues so severe that I stopped leaving the house entirely, my depression back in full force that I barely managed to leave my bed for more than a few hours. I did good to make myself get a shower every 2-3 days.
Skip ahead a few years, now 2015, and I finally have insurance (I had been trying to get insurance since the very end of 2013, but we just kept having so many issues and we would go back and forth, constantly a weekly ordeal with them giving excuses for everything). If I thought I couldn't get any more embarrassed from my "sickness", I was very wrong. I was going to see the Gastroenterologist doctor weekly, for almost an entire year. I had so much blood work done, having to have more drawn every month and an occasional twice a month. I had to actually, and truthfully, open up and tell this stranger every little detail from the past seven and a half years, how and when it started, the symptoms, how often I would go to the bathroom in one day and if it was always diarrhea, then consistency. You get the point, a ton of extremely embarrassing questions that I struggled to speak about and tell him. I went through many Upper and Lower GI's. MRI's on my stomach and intestines (which found another problematic issue that I'll mention later), colonoscopies, and pill camera endoscopes (which would last 8 hours each time). After all of my seemingly never ending testing, it was finally finished. But I was diagnosed with Crohn's disease, an incurable illness that uses medication from the chemotherapy class, that causes autoimmune disorder, which explains why I am always getting sick. I was also diagnosed with severe IBD (not IBS) type 5, which I didn't even know there were types, but apparently type 5 is the worse. Also, diagnosed with being severely Lactose Intolerant; and Celiac's disease, which is Gluten Intolerance, so yes, I have unfortunately became one of those people who look for and ask for Gluten Free options if it is available like these "hipsters" and those people who followed ridiculous fads to try and fit in. The issue that was found by the MRI's showed that, even though I fasted on nothing but clear liquids 2 days before, I still had food I my stomach that was estimated to be from the week before, only partially digested. So that is of my reasons for constant stomach pain and the urges to throw up. My stomach was, essentially, refusing to digest almost everything for an unknown reason.
I was quickly placed on a medication for my Crohn's that is so severe, I had to sign a waver form that day in my doctor's office for him to fax to them, before they would allow a pharmacy to fill a prescription for me; and when I got to the pharmacy I had to sign yet another form stating that yes, I am well aware of the risks of this medication, and that I made the conscious choice to agree to be placed on it. I was told, by both the Pharmacist and my doctor, that if I ever experience any symptoms from this medicine, no matter how minor or short lived, that I am to immediately go to the nearest emergency room with that medication and tell them what was going on. Because this medication was originally introduced about 20 years ago, and it worked but it worked too well because it was causing an alarming amount of people to be rushed to the emergency room for going into sceptic shock and killing them, so they pulled it off the shelves. My doctor told me that they just brought this medicine back, at a dramatically lowered dosage (from 25 or 35mg a tablet, to 1mg a tablet), the year before and no one had been hospitalized since the new dosage, but the medicine was now completely restricted to a point where the only doctors that could prescribe it had to be gastro doctors, and even then it took a lot of effort and requirements for those few doctors to have a permit to prescribe the pill. Every day I risk my life by taking this daily medication just to ease my pain, to lessen my sickness, even by a small degree. I didn't care what I was taking at this point; I just wanted to sit on the toilet for a reasonable amount time, not sit on the toilet for almost an hour (minimum) to up to 2 and a half hours, legs have gone completely numb and fallen asleep with the all over burning needle like "white-noise" of the numbed tingling all the way up and down both of my legs and feet. To just have to use a normal small amount of toilet paper and 1 flushable wipe per bathroom visit, not to use 1/3 or more of the entire roll of toilet paper and multiple wipes. Not to mention the many, many, courtesy flushes for both myself and the next unfortunate soul to enter this bathroom after me.
I have had to give up many, many things in my life because of this. I can't make plans with other people ahead of time because I've honestly no idea if, when the day comes, I'll be able to go through with these plans (unfortunately I end up having to cancel almost all the time because there is no way I am able to go through with them, I am just too sick and can't leave the bathroom for longer than 5 minutes). I miss a lot of family gatherings, because for almost the entire time, I am in the bathroom. I try my hardest to avoid long road travel because I don't know when it will hit me, but a lot of travel is unavoidable, which puts more stress on me. Stress, in turn, also makes my Crohn's even worse, which makes me worry more about being able to make the long distance and gets my anxiety worse, thus creating a never ending cycle.
For those who don't know me as well, I am a very dedicated foodie. I love food of all types with a passion with very few things I will not eat, and those who DO know that about me will agree completely and even make the comments of how I have a "bottomless blackhole" for a stomach. Unfortunately, everything I eat puts me in unbelievable pain, and causes extreme sickness. BUT my doctor and I both finally found food and drink that I can eat that won't cause either pain or sickness. So... Why don't I just stick to the foods I can eat to avoid the issues? Well, considering that there is only a total of 3 things I can eat/drink that will not hurt me and that is PLAIN potatoes (no butter or seasonings or anything), PLAIN white rice, and water. Those are the ONLY things I can have that does not bother me. Now, instead of being rude and telling me to stop eating the food that hurts me (even when you know exactly the only thing I can have) try to put yourself in my place, can you handle eating plain rice or potatoes every day, mornings noon and dinner, with nothing but water to drink, for every single day? Would you be able to have the will power and strength to turn down food? Honestly? Every day your feeling like you're starving because the rice (or potatoes) don't last very long at all. You're so hungry and you feel like you haven't eaten in days. Food that's in front of you, or you see someone else's food their eating. The spices in it, the flavors, even the look of ANY thing that isn't plain rice or potatoes becomes such a delicacy, as if prepared by a personal chef specifically for you. Your mouth waters and stomach definitely lets you know it is hungry. Can you honestly tell me that you can refuse it? Turn it down when it was offered to you? Have the control to not go somewhere, like a Schlotskies or even McDonalds, when you have the money for it. So stop telling me I should stick to my "diet" like I am doing this willingly. This is not a diet, a diet is a choice you make in reducing your intake of food or certain types of food, with the intent and purpose to loose weight. I know I complain a lot about hurting, or being sick, and make a lot of comments about how this is going to make me super sick later or put me in a lot of pain when I'm eating or making a plate to eat. I am not saying it for attention, it's mainly a response to myself to remind me of what I'm going to expect within the next 10 minutes or later so I am not caught off guard too much. I am not asking for Gluten free options because it's hip and posh, I'm asking so that I may eat something that will taste amazing while greatly reducing my pain and the degree of how sick I'll be.
I am only 23 years old, and yet I have personally been through so much in the past years, so much emotional and mental trauma, that I have a difficult time handling on my own. PTSD, as my doctor told me. I have here, what was supposed to be a young, healthy body that would carry me through my years before finally wearing down little by little at old age. Instead I have this young body, with the stomach and intestines barely functional, Atrial Fibrillation, Sciatica, Degenerative Disc Disease, an improperly healed spinal trauma, severe anxiety and panic attacks, minor depression, Insomnia, PTSD, bad OCD, both ADD/ADHD (just last month my doctor told me that my ADD/ADHD was still severely active for someone my age so that's more issues I cope with everyday) and having had 2 heat strokes. The amount of medication I take on a daily basis rivals what most nursing home patients take (work as an Ophthalmologist Technician on our clinic side, and a Surgery Tech on our surgery side who alternates between working the pre-op/post-op, working in the actual OR rooms as a Scrub Tech, or helping with Transport to move patients back from pre-op and into the OR and then back to post-op after surgery which includes a lot of heavy lifting to move them from the pre-op bed and onto the operating bed and vice versa, that I am not supposed to do because of my back. We're a medical examiner and surgery center that specializes in the eyes. We get a lot of Nursing Home patients and let me tell you, its a bit depressing when you see that you take more medication than some of them and even have more medical issues than them). It's embarrassing when every where I go, my bag sounds like I robbed a pharmacy. Almost all of my money I have left after paying bills go towards my medicine.
If anyone did manage to read throughout that ridiculously long post, please don't think this was meant, in any form or way, to have anyone feel sorry for me, or to be an attention whore. I honestly don't like to talk about my issues like this, in person or through online, because my mind causes me to believe that "oh, no ones going to take you seriously" or if they do they'll just think your after attention, so I don't like to talk about it; not even to most of my family members. This huge post with my personal issues, was meant as a way to try to explain to others just how bad this disease is. The only reason Crohn's is not classified as a cancer is because it is hereditary and one of its main problems is that it causes an autoimmune disorder. There is no cure for this and what medications there are for it, are all from the same class as Chemotherapy. This is a disease that ruins many people's lives. It is a disease that is unpredictable in where it will effect your organs, because Crohn's affects everywhere from the mouth all the way to the anus. It kills off and causes disease of everything in that large stretch of area.
I just want to be able to go to the bathroom like a normal person and not have my legs drawn up and curl myself in a small fetal-like position as I rock myself back and forth while gripping the toilet seat in a death grip, like I expected to launched upwards like a rocket launcher (childish image and actions I know, but its the only thing I can do) while struggling not to cry and moan loudly in so much pain, to have to endure that for sometimes hours before I can finally leave the bathroom... Only to quickly turn back around just as I open the bathroom door and get back on the toilet, and repeat the above for an unknown amount of time before I can finally leave the bathroom and either go lay down or finish what ever it was that I was doing, or go back to work. Sometimes I actually make it out of the bathroom, and be perfectly fine for 5-10 minutes before I would have to return to the bathroom again because almost every time I go, I can never just "get it out" in one go or all at once. I know that's causing some of the pain I have too, because my intestines are constantly knotted up and in kinks, that I can never just "Push it out and get out of the bathroom" like some people have rudely told me to do before. That they actually think I am doing it on purpose to get out of what ever it was I was doing and just play on my phone. Sorry to inform them, and everyone else who has the same thought, that maybe 1/3rd of the time I am in the bathrooms like this, I don't have my phone with me because I don't have those precious few seconds to spare looking for it instead of using that time to get to the bathroom. Even when I do have my phone with me, I'm too busy holding on to the seat and rocking myself to even get on it.
Every year more young adults and older teens are being diagnosed with Crohn's and yet it is still not treated with appropriate fear like cancer. This disease prevents you from living a real life. This is a disease that is, more than likely, going to be the death of me. This Chronic disease kills people. Mercilessly. And we do not have a cure for it.
So next time someone is having issues similar to any of this, instead of using harsh words and judgement on them, just try to be there for them instead, because I can guarantee they are going through more than enough on their own already from both their body and their own mind, and though they might not say it verbally, they need you there for them. I needed them there for me, I still need them there for me. I am constantly plagued with the knowledge that this IS going to be the death of me in my older years, how old will I make it though is the question. Am I going to die at a (semi) young age (30's to 50's) or will I be like the lucky few (or unlucky, given what they are going through from it) who live to be older and see 70's and possibly even their 80's. I am afraid to have children one day, because this disease is very prominent in my mothers side of the family, and I fear that my future children will also suffer from this.
This is part is more focused on my mom and not myself, but I feel like its something that should be shared for everyone.
This is a disease (Crohn's) that is going to kill my mom swiftly if it comes back out of remission one more time. Having been told that there is nothing else that can be done for her since she had her last major surgery 5 years ago, where her chance of surviving the surgery was 17%, while it was actively killing her at a rapid pace that her doctor (who happens to be my doctor as well) spent weeks on the phone with the makers of this specialized shot that would temporarily slow down the spread of the disease until she could have her surgery. He spent three weeks with constant phone calls and finally talked them into just accepting the small part that her insurance would pay and still give her the medicine without her having to pay out of pocket because she had, by this point, drained her life savings account, her checking account, maxed out all her credit cards and taken out the maximum limit on loans for medication and emergency surgeries and procedures in the past year and a half. Without this medicine my mom was going to die an extremely painful death, before the month would have ended, because of how rapidly her crohn's was spreading and killing off her organs; and her surgery was scheduled for the very end of the month as the soonest available spot. She had to give herself this shot in her abdomen 12 times a day until the day of her surgery, and these shots had cost (at the time, I don't know how much they are now) about $350 per shot, and at this point her insurance would only pay $113 per shot but they would only help pay for 7 a day. There was another medication that would have been able to slow down the rapidly spreading disease that her insurance would have definitely covered; but its main ingredient was made with a sulfa, and my mom is deathly allergic to all sulfa drugs. So that left no other option but to use that expensive shot.
The doctor that did her surgery was very skilled and a highly praised and sought after doctor in the Dallas area. In fact, the only reason my mom was able to even get an appointment with her for surgery so fast, was because she was good friends with our Gastro doctor, who apparently called her and personally asked for her to do this surgery. This doctor had asked my mom and the rest of the family for permission to have all 11 of her interns with her in the operating room and to be apart of her case to follow it and study it, because in her exact words, "I have done many of these types of surgeries for years, removing the effected and diseased organ part or the entire organ because its already been killed from this disease; but no one has ever had to have so much be removed from them at one time. There isn't anything in their books about a surgery to this extent or the following recovery, and I would like to ask for your permission to let my students follow us and be apart of your case and recovery." She was a very nice lady, and she genuinely seemed to care about the well being of my mother and worried about the low survivability percentage she had. Even though she had to stay in the hospital for almost 3 and a half weeks, my mother survived what was deemed as the impossible.
When I was 9 years old, my mom had to have surgery because of her Crohn's, and had 1/4th of her stomach and half of her left kidney removed because her Crohn's had killed those parts of her organs. They no longer functioned and needed to be removed to prevent it from spreading more and causing worse problems (what could be worse than having an incurable disease that is slowly killing your organs and yourself at an unpredictable rate, am I right?). Then just turned 18, and still had a month and a half left of school before graduating, my mom is dying again, but this time its much worse, and much faster. I watched her as she was withering away into nothing before my eyes and it's mentally traumatic to see someone go through that, especially someone you love. When my mom had this last surgery, she had almost 2/3rds of her stomach removed, had the remaining half kidney removed and about 1/3rd of her other kidney taken out too, her gall bladder and a good amount of her liver and pancreas had to be taken out as well, her entire large intestines (the colon) was removed, and almost all of her small intestines was taken out, leaving her with only 6ft of her small intestines left, of which she now has an ileostomy bag attached to and glued to her skin at all times. She is constantly broke out in a painful rash around the bag because she is severely allergic to adhesives, but there is nothing she can do about it, because that's the only way to keep the bag attached. My mom now has the barest minimum of all of her internal organs (minus the heart and lungs) needed for survival. Which is why she has been told to stay away from and avoid all stressful situations, because if it comes out of remission one more time, it is going to kill her, because there is nothing else that they can remove and take out, they can't just go in and cut off more diseased organs anymore.
My mom is only 44 years old, but already she is standing on her last leg here. And because it can happen any time and day, whether it'll be next week or years from now, I sit with my mom several times a week after work, and help her plan her funeral with her. This strong, amazing woman, is having to plan her funeral at 44, thanks to this unpredictable and merciless disease, and I have to sit through this with her, and helping her because she asked me too. Because she doesn't want this to be left for when she actually does die and she does not want to put me through that ordeal of having to plan and organize her funeral on a limited time frame. Because my brother isn't going to help with the funeral, just have the minimum done and the cheapest coffin/urn, everything, just so that he will get the rest of her life insurance money. But my mom completely changed her insurance policy where instead of the remaining amount be split between us after the funeral, he is getting nothing from it and even made me promise that I wouldn't let him talk me into giving him money. Before, it was in her will that when she dies her car goes to him, she changed that as well to go to me and made me promise not to give that car to him and his wife either. The only thing that he was left on was as a death collector for her bank and savings account, which doesn't have much in it. Can you imagine how hard this would be? To be sitting with your mom at the dinner table and calmly and casually talk about and plan her own funeral. I go into semi hysterics every time because I cannot handle just the thought of her dying, let alone to plan it myself. But all she says to me is that is the exact reason she wants to do this now with me, while she is still alive, because she knows that I won't be able to handle her dying, and she especially knew that there was no way I would be able to do this by myself, just from sheer grief alone, not even including the fact that I wouldn't know what to do.
This woman, my mom, who can die anytime from Crohn's and has to be just as terrified as I am, if not more so, and yet she still worries about her daughter like that, and is trying to keep protecting her daughter and helping her daughter plan out her own funeral, and trying to help prepare her daughter mentally for the inevitable. I have never met a more brave and selfless person in my lifetime, and I doubt I ever will again.
Because of my Gastro doctor, and my mothers surgeon, I still have my mom in my life today. And she has never looked better and healthy. Growing up, I had only ever seen my mom as this skeletal thin lady who may look frail (never let that fool you, she could still whoop my butt, my brothers butt who is 11 years older than me, and my step brothers butt who is about 8 years older than me, when ever we got into trouble and ignored her first warnings). Growing up I remember feeling how small she was when I would hug her and as I got older into my teen years I was afraid that I would hurt her when I hugged her. But now that woman is gone, and in her place I have my mom who has finally able to gain and keep weight on her body, who looks so healthy and is so much more stronger than I have ever seen her be. I owe those two doctors so much for what they've done for my mom and, unknowingly, for me because I still need her and I will always need my mom.
Thank you for being patient and reading through this dictionary of a story haha... Again, sorry that this turned out way longer than intended and expected. I hope this can be of some help or anything to someone who is reading it, for whatever reason they have.
What has been the most helpful for managing IBD symptoms?