It f*cking sucks, that's what its 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.
What Is Crohn's Disease?
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. Crohn's Disease is an autoimmune condition that currently has no cure and its severeness changes per person and with time.
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.
Ever since I was diagnosed around 12 years old, and up until now at 27, 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, but that's for a different blog).

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 asked him to. Shout out to my mom being over anxious about me having Crohn's Disease - my dad, doctor, and myself at the time didn't think it was that serious. Well, mother knows best, right?
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. Of course stomach pain still happens, its just that the damaging inflammation was happening in the lower sections of my G. I. tract now. I didn't realize this trend until I turned 20, when I only had to have two dead sections of my colon resected. I then had the remainder of my colon, rectum and anus removed at 25 due to the disease completely ulcerating and destroying them.
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.
When 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
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 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 effect 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!
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