What's It Like Having Crohn's Disease?
- Feb 28, 2024
- 13 min read
Updated: Jan 31
It f*cking sucks, that's what it's like. But similar to many others who suffer with a chronic illness, the pain and challenges are something you learn to navigate through - so you can fit in with normal people and society.
Learn About Having Crohn's Disease:
In this blog, I'll provide information I've gained from my own research and gastroenterologists over the 17 years I've had moderate to severe Crohn's Disease. For legal purposes, don't take any of this as medical advice and always talk to a doctor for yourself.
I am bringing in my perspective now as an adult who started having symptoms in childhood. In return, I hope this helps you gain more empathy for strangers, close ones, and yourself.
What Is Crohn's Disease?
Thanks to pharmaceutical ads being legal in the United States, you've probably heard of Crohn's Disease and Ulcerative Colitis treatments. *You've probably also seen Psoriatic Arthritis commercials using the same medicines being advertised. This is because they are both autoimmune diseases and similar in inflammation triggers. With Crohn's Diseases, you can get psoriasis patches and sore joints from arthritis due to inflammation spreading out of the G.I. Tract.
It's important to know that Crohn's isn't just a "bathroom" disease because a lot of my (and others) suffering happens outside of the bathroom too. The bathroom is the end result of a series of other problems happening beforehand.
Many Crohn's pains I had started with an anxious feeling that started in my stomach, which moved down into my lower abdomen - like a sour cramp. This then would trigger a headache which would then send a shiver throughout my entire body. From my head, down my spine, through my arms, hands, to fingertips my nerves felt like they were being zapped and spasming. This feeling would continue down my stomach, lower abdomen, pelvis (and when it was a really bad flareup, it would go down through my legs to toes). This spasm of my nerves triggered my entire body to heat up and ache...and then a series of abdominal cramps would eventually turn into the emergency bathroom trip. This typically happened before every bathroom trip, and I would go between five and fifteen times a day depending on the year.
This flaring up of my body would be my white blood cells attacking me, which is why I would get a fever or just feel really hot on the inside. Crohn's Disease is an autoimmune condition that currently has no cure and its severeness changes per person and with time.
This constant strain on my body is what caused extreme fatigue, nausea, loss of appetite, or starvation due to not wanting to face the consequence of eating. Luckily, I was never forced into anorexia by my body like some Crohn's sufferers have been - I would eat something, even if it was very small.
You may be investigating Crohn's Disease for yourself, to empathize with a friend or a family member, or because you were assigned to research it. Either way, sufferers may be hesitant on sharing their symptoms which can make it hard to understand them. However, whether someone is giving you the details about their IBD or not, they are most likely navigating painful symptoms in some way. Hopefully, you are able to learn more about what it's like having Crohn's Disease with my experiences and are able to encapsulate new-found empathy for others in life.
Ever since I was diagnosed around 12 years old, and up until now at 29, no doctor has given a definite reason why Crohn's Disease happens. The main hunches revolve around genetics or an autoimmune response that gets triggered by the environment. But no one knows what that environmental factor is (I personally think it's a few, like possible gut bacteria failures or cell damage from previous viruses, but that's for a different blog for later).
Crohn's can cause damaging inflammation from anywhere in your G.I. tract which is from your mouth to your anus. The white blood cells fight other healthy cells in your gastrointestinal tissue which causes damaging inflammation (typically Crohn's targets an area or a few, not the entire G.I. tract at once).
My Crohn's symptoms began around 10 years old and slowly exacerbated even with treatments - which is why it took two years to diagnose. Strange enough, from blogs I've read in the past, many Americans had the same experience of their doctors not testing for Crohn's Disease until it kept getting worse after two years. So if you have baffling stomach pain that your caregivers still can't diagnose, make them get proof its not IBD. My specialist from Rainbow Babies Children Hospital in Cleveland, Ohio only tested me for Crohn's because my mother demanded him to. Shout out to my mom being overanxious about me having Crohn's Disease - my dad, doctor, and myself at the time didn't think it was that serious. Mother knows best, right?
Early Onset Symptoms
The early start of pain and inflammation was in my stomach, esophagus, and mouth. I had ulcers and canker sores for the first eight years, but as my small intestine and colon became targets - the acid reflux side effects and paralyzing stomach pain shifted to the lower half of my abdomen. I have no idea why my Crohn's began to move focus from upper to lower as treatment started. Doctors say, this is just how the disease is.
Of course, stomach pain still happened, but the damaging inflammation was happening in the lower sections of my G. I. tract now. I wasn't showing inflammation in my stomach, esophagus or mouth - only from my duodenum and lower. (duodenum is that transition part from the stomach to the small intestine.
The stomach pain was most likely radiating pain from the inflammation, but my doctor said it's possibly IBS too, meaning I have the disease - but also some parts are just hurting from irritable bowel syndrome - not disease.
The difference between IBS (Irritable Bowel Syndrome) and IBD (Irritable Bowel Disease) is that one is a syndrome, meaning you get the pain - but not the damaging inflammation. The seriousness is raised for IBD due to the plethora of problems extra inflammation has on the body - especially when it is constantly happening overtime.
Many people are diagnosed with Ulcerative Colitis when inflammation is located only in the large colon - but when they get their colon removed, inflammation turns up somewhere else in the G.I. tract like small intestine or stomach, it officially becomes Crohn's Disease.
While with my first pediatrician at Rainbows (age 13), he said I technically have U.C. and Crohn's due to inflammation happening in multiple areas - but I think he was just trying to simplify things for me as a child. My Gastro Doctors later on just grouped this as Crohn's with colitis inflammation, they wouldn't deem me as having 2 diseases (both U.C. and Crohn's).
Crohn's After Surgery
I didn't get my first surgery until I turned 20. I had to have two dead sections of my colon resected. My sigmoid had a stricture so bad, it looked like a cartoon drawing when it appeared on my Barium Enema X-Ray.
Imagine a normal thick, intestine funneling into a thin straw and then back to normal again. You know when 5-lanes of traffic have to merge into one lane because of construction or accident, then it goes back to 5 open lanes right after? That was my large intestine.
The other resection was the other side of my big colon due to progressed inflammation they wanted to remove now before it turned into a stricture like my other side. The scar tissue and inflammation were worth cutting out to them after a contrast MRI was performed (my doctor had to do this and a colonoscopy to get me referred to the colorectal surgeon). Biologics and steroids were not able to fix this after years and extensive use. So, they just cut that stubborn problem area out.
This other side consisted of my ileocecum valve, appendix, and the first few inches of the big colon. My appendix was totally fine it was just in between the inflammation area so it had to go!
The surgeon reattached my intestines then placed a temporary ileostomy (loop ileostomy). This means the intestines were still attached and back to the regular tube organ it is, however, there was just a gash in my small intestine to leak out the contents, so it did not have to pass through the remainder of my large colon while it healed from the surgery. This meant, I could still possibly pass stool - but it was not common, and when I did, it was super painful.
Loop ileostomies are only intended to be reversed - they are not meant to stay permanent. It all depends on how your condition is, this determines your treatment route.
After my ileostomy reversal surgery, I thought I would be symptom free - or at least surgery free - for a decade. But I actually never got that rest. My Crohn's has a permanent vengeance on my body...
I then had the remainder of my colon, rectum and anus removed at 25 due to the disease completely ulcerating and destroying them. I didn't get a nice inflammation break from my first surgery to this one - it was mostly my Crohn's working away at me until it was too deadly to keep inside of me. This took years of pain, suffering, different treatments, and multiple unwarranted insurance denials.
If my Private Health Insurance would have done what they were contractually supposed to do and approved my Entyvio and eventually Stelara instead of stalling with denials and appeals, then most likely I would've had that rest in between my next needed surgery. Unfortunately, when I talked to a lawyer about this, he said it would not be worth challenging them with their lobbied power.
How Does Crohn's "Kill" Your G.I. Tract?
It takes many years of active disease to get to this point, in fact, around 75% of Crohnies will get surgery at some point (typically within the first 10 - 20 years of their diagnosis).
As the inflammation causes your insides to bleed, then ulcerate, then abscess and possibly create fistulas...this causes swelling inside, causing restrictions/blockages. After the wear and tear continues, the strictures can cut off blood supply from the inflammation ruining the tissue - or block stool from passing. If your intestines tear due to this extensive damage, this will cause sepsis.
While I was getting a barium enema done, I saw the healthy part of my colon that was wide, but then my sigmoid section looked like it was bridging the two thick parts with a skinny straw. This stricture could not be temporarily widened with ballooning, could not be healed with biologics or steroids, therefore, it would have to be removed.
Common Crohn's Disease Symptoms
The inflammation caused by any IBD can spread to other areas and affect them negatively too like your joints, eyes, and skin. Crohn's is why I also have Arthritis - my knees, ankles, and hands feeling it the most.
When trying to diagnose Crohn's or trying to see if a flare up is happening, you'll always be asked if you have a fever, night sweats, or flu like symptoms, bathroom frequency and its consistency. This is due to your body thinking its fighting off an infection, which is why many Crohnies (not real medical lingo by the way) have body aches and softer stools. So please don't hate your body when it feels like its giving up on you, its doing its best, its just a little confused on what's going on and who to fight on the inside...
Crohn's can still come with many other symptoms and is different per individual which is why so much more research has to happen still! A few other symptoms of Crohn's are listed below. Do you happen to suffer from any of these or know any Crohnies who do?
Mild, moderate, to severe joint pain/arthritis
Mild, moderate, to severe stomach/lower abdomen pain
Sharp pain or cramps before, during, or after eating
Sharp pain or cramps before, during, or after bowel movements
Headaches or migraines/nerve pain before or after an intense flare up
Bloating, diarrhea, blockages, gas, nausea, and/or vomiting
Inflammation, ulcers, and blood in stool
Depression or Anxiety
Forced anorexia due to pain
Crohn's can come with all or a few of these symptoms at a time. People also seem to have different triggers, like stress or particular foods.
If your loved one or friend is suffering with these symptoms and you become frustrated at how inconvenient their illness is, keep it to yourself. Trust me. It's a big inconvenience for us too - and we have to deal with the pain and symptoms on top of managing the inconvenience. Seriously, just act supportive and reassure them you are fine waiting or helping them. If you cannot do that, stay away - the negativity will only make them sicker.
My personality is much stronger when I am at healthy point in my life, when extremely ill - we are willing to do anything to survive and sometimes that's dealing with negative people in daily life, so don't be another contributor of that.
Also, it's okay to joke about Crohn's Disease as long as it's coming from a loving place and not bullying. My family and friends are always making jokes when the opportunity arises.
How To Treat Crohn's Disease
Gastroenterologists have different treatment plans for their patients since everyone has their own symptoms going on and doctors' have their preferences.
Typically after tests are ran to diagnose Crohn's, the doctor decides which level of treatment to start with. I can easily say I've had over 40 different over-the-counter meds prescribed to me relating to my long reign of bowel disease terror. I remember being twelve and I had to take 13 pills everyday. An antiacid, corticosteroids (prednisone), Imuran (immune suppressant for organ rejection), and sulfasalazine (to limit inflammation). Curse sulfasalazine, its always been effective but its a dry, round horse pill that I would choke on constantly well into my adulthood so now I just deal with my joint pain...
When pills aren't effective in stopping symptoms - with steroids being the last resort - biologics come next into play (unless an emergency surgery is deemed more necessary, then your surgeon will want to delay any biologics as they are immunosuppressive).
At 12 I started Remicade, given every 8 weeks with a 6 hour infusion. After I built up too many antibodies and symptoms of damaging inflammation worsened, I was moved to Humira (one shot every 8 weeks). I bounced between that and naltrexone (Narcan) which aided some people with autoimmune conditions when taken between the hours of 9 p.m. and 3 a.m. because in needed to be absorbed during your circadian rhythm. Biologics that are given intravenously or subcutaneously start with their own loading dose before being repeated every 8 weeks (sometime 6, 4, 2, or 1 weeks depending on the severeness).
After damaging inflammation kept bringing back large ulcers in my lower small intestine and colon, I was given Entyvio (in my early 20's around this time). Thanks to American private healthcare companies lobbying the government into allowing them to deny and delay needed healthcare, it sabotaged me from ever being able to use Entyvio ever again :(
I'll explain.
My gastroenterologist recommended I start Entyvio every 8 weeks immediately. After Medical Mutual denied my doctors prescription, my doctor had to send in an appeal (a letter reiterating that this patient does need this care done), in which they approved that. But because that process had to take over a month for the communications to be completed, the insurance and pharmacy need a brand new prescription that they need to reapprove. This process is not meant to be efficient, it only benefits insurance companies by not having to pay out as quickly. So after I had my loading dose, they pulled this same delay/appeal trick again, making me go past my 8 week due date on multiple occasions. I would end up taking Entyvio after 12 weeks, and then 10, but my disease exacerbated because I needed every 8 weeks like my healthcare professional said. Because inflammation was even worse, he prescribed it every 6 weeks but my insurance company still was unable to fill my prescription at the proper time.
I could have been healed from Entyvio as it was very good at treating my symptoms, but of course as weeks went by from Medical Mutual causing it to be overdue, I suffered the pain from the delayed doses. Of course my insurance company has done so much more damage to my mental and physical health than microplastics and preservatives ever could - which is probably what caused my Crohn's in the first place. Because of this inconsistent dosing Medical Mutual caused, my body built up antibodies, making it completely ineffective even when I finally got my dose.
This is why I had to move to the biologic Stelara, but my insurance company did the exact same thing. Because my disease and quality of life were so bad at this point, I was prescribed Stelara every 4 weeks but I essentially never got a dose on time. Stelara costs a whopping $23,000 per 90mg shot. At least that's what my insurance said it cost on my statement. I'm pretty sure I've seen Stelara go for $6,000 in Canada (just to show over inflation of American drugs) but quick Google searches say the prices are more competitive with other countries.
So currently, I have a new insurance company that has already done an appeal so we will see how this ongoing battle with my healthcare company plays out. Unfortunately, this is a common practice that happens in American healthcare, especially with sicker individuals who need more costs dedicated to their care.
Anyway, that's the adventure my treatment plan has been throughout my many years of having IBD. So beware of predatory private insurance!
Now onto the list of annoying tests that may be ordered during your ongoing illness. These are all the possible medical tests a gastroenterologist may ask for and I have done these all many times. Not just because I was still having symptoms but because your doctor should want to keep an updated look on your insides.
Colonoscopy, Sigmoidoscopy, Endoscopy
Ballooning (colonoscopy except the tube inflates to expand the intestines)
Barium enema
Barium X-Ray
Bone density scan
CT Scans, with and without contrast dye
MRI
Lots of blood and stool tests
X-Rays
Overall Crohn's and IBD
Crohn's Disease is very exhausting. I never had my Crohn's break my spirit until around 22 even though horrible pain, stress, and tests was going on for ten years before that. But I was able to bounce back, and even though it still gets me down because our bodies will eventually stop recovering from all of the compensating, I still crack myself up too much to be sad all the time. Anyway, after pouring out very personal details about my IBD, I think I will wrap up here.
In conclusion, Crohn's is an autoimmune disease that causes inflammation throughout the G.I. tract, which can spread to negatively affect other parts of the body. There is no cure but an array of treatments for individuals who have varying degrees of the illness. I can't endorse this as medical advice since I've only ever been a patient, but I've learned a lot from having to experience it.
If you are worried about having an autoimmune disorder like Crohn's and your doctor is not taking your pain seriously, request a Calprotectin Test. This tests infection markers (high white blood cells). And, if you are experiencing stomach pain, ask yourself if you are taking NSAIDS like ibuprofen. You are probably taking it for the stomach pain, but it more than likely caused it when you were originally using it for a small backache. I've already had two friends get tested for Crohn's but they were just over using NSAIDS - if you have an inflammatory disease, your doctor should have informed you of this already.
If you are still interested to hear more details, let me know and I can add to this post or make a completely new blog! If you want to check out the documentary I have in progress, Pretty Ugly, more squeamish details about my Crohn's can be found!
Comment other things you'd like me to discuss about Crohn's Disease or talk about your own stories you'd like to share below!
Subscribe to my email below and I will notify you when I make updates!
Comments