IBD: Inflammatory Bowel Disease
DISCLAIMER: If you have been recently diagnosed with IBD, I would suggest reading no further. The symptoms that I am discussing are mostly in SEVERE cases and ALL of these symptoms do NOT represent one person's case. This is an entire array of symptoms that COULD happen. Do not read this if you are at all overwhelmed by the diagnosis. The symptoms DO NOT relate to all individuals who experience this type of illness. Some patients will experience ONE or more of these symptoms, but many patients may never deal with ANY of these more drastic symptoms. This is just a compilation of the most humiliating and frustrating symptoms that CAN occur but that no one wants to talk about.
I would also like to add that, while these symptoms are severe and difficult, it is still very possible to live a seemingly normal life - and people get through all of this without anyone having a clue!
Any illness or disease that revolves around our digestive system is embarrassing. The illnesses included in IBD are severe chronic illnesses that no one wants to talk about. We all want people to know what a struggle the illness can be and how it takes away much of one's ability to be carefree and spontaneous, but most people don't want to admit some of the most embarrassing symptoms a person may experience. I mean, look at our society - thriving on public shaming, some heartless criticism of anything that is different or frightening, and how people will use their right of "free speech" to an alarmingly full extent in comment sections (unrelenting and with no regard for the feelings of anyone). No wonder no one wants to REALLY talk about it.
So how can you efficiently convey the seriousness of an illness without talking about the gross possible symptoms? It is nearly impossible.
Now before I list off a number of POSSIBLE symptoms, I would really like for you to understand the following:
- you will see conflicting symptoms - no two people with IBD experience the same symptoms. There are so many varying factors and not everyone will experience all or even part of this list.
- the following symptoms are sourced from journals, several websites (including the Mayo Clinic site, WebMD, etc...)
- this list has been compiled through studying, anecdotes from various people suffering from IBD, and some personal experience. There is not a particular person in mind - these are simply common symptoms in those with severe IBD.
We all know the main symptoms that are regular topics of conversation with people in this situation - stomach upset, stomach cramping, frequent bathroom visits, diet restrictions, lethargy, weakness, lack of energy, sleep disturbances, joint pain, drastic weight changes, nausea etc...
But here are some of the very real symptoms - that no one wants to discuss.
1. Diarrhea
Ever had food poisoning? Ever have food poisoning every single day for your entire life? Imagine diarrhea 10-20 times per day, every day, for the rest of your life. Chronic diarrhea that is painful and never stops.
2. Constipation
Some experience #1, some experience constipation, and some experience both at different times. Again - the internal organs are so inflamed and so raw, that being incapable of going for a week straight is aggravating and massively painful.
3. Incontinence
Yes. This is one of the more humiliating symptoms. When it is that liquidy, sometimes there is not a toilet close enough EVER to get there in time. This can mean wearing Depends at any point during the day. It can also mean throwing out clothing, bedding, and feeling disgusting. Imagine buckets and camping toilets inside vehicles, accident after accident. Imagine panic and not always making it in time - in public, while playing a sport, at school/in classrooms, driving somewhere, at work, on a date, on a train, in a theater, while seated on a flight during the take-off or the descent when you are unable to get up from your seat... And forget intimacy! That idea goes right out the window when there is no control at any point in time. Individuals who may have to wear Depends may only need them occasionally or in very specific circumstances, and MANY patients never need them at all. Many patients won't ever deal with this, but this CAN be a symptom.
4. Urgency
Always feeling like you have to go - even if you don't; even if you just went.
It also can be referring to time - your body can give you one warning cramp, and if you are not sitting on a toilet within the next ten seconds, it's happening whether you're ready or not. (Think of the scene in Bridesmaids, or even having the flu and how you have no control over vomiting - same idea, opposite end).
5. Diaper Rash
Believe it. If you've gotta wear Depends or another absorbing piece of clothing, be prepared for diaper rash.
6. Bloody Stool
This is common and can be relatively 'normal' for IBD patients. The intestines are inflamed and easily irritated by food, so if there are ulcerations, polyps, etc... Be prepared for flares that include blood and blood clots.
7. Ostomy Bags
When parts of either intestine or the entire colon are removed, sometimes you are left with an ostomy bag - some permanent, some temporary. Basically, if intestine sections are removed, the end of the beginning section of intestine left is surgically brought outside of the body, folded on itself (like a cuff), and stapled or sewn to the outer stomach. Ostomy supplies are then used to collect waste. This is the 'bag' that adheres to your stomach, and that is where your stool is held. Your intestine is literally outside of your body, and there is no controllable sphincter. So the stoma (the part of the intestine sewn to your stomach) works on its own schedule - you cannot control it. Sometimes the bag can accidentally bust open, it can leak, it can create a foul odor, it can be loud with gas and gurgling, the stoma itself can be damaged with physical contact with something or someone....
8. Anal Leakage
Yep. Sounds fun right? *note sarcasm*.
What is widely unknown is that even if you have an ostomy bag, anal leakage can, and will likely, occur from any of the intestine leftover, attached to the sphincter. Surgery is not a cure - so if you have inflammation in the lowest portion of your intestine and the entirety is not removed, guess what? There is still urgency, diarrhea, blood, mucous, and anal leakage.
9. Fissures
Cuts or tears in the anus. Can cause all sorts of nasty and extremely painful symptoms. This can make it difficult to sit down and can cause pain, leakage, rash, etc...
10. Fistulas
Basically these are holes in the intestine that can leak into the stomach cavity, can create an unwanted pathway between or even into other organs, and can cause leakage to the outside of the skin as well. This means that fecal matter can pass through these holes and end up in or around other organs. It causes pain, it can be fatal, and usually requires surgical intervention.
11. Gas
We're not talking regular gas here. We are talking about the incidents that everyone makes fun of: loud, horribly putrid-smelling, and embarrassing. Again, this usually happens uncontrollably and is very humiliating.
12. Extended Bathroom Breaks
Have you ever gone to the washroom while you were at a restaurant with friends - and take 45 minutes? Due to cramping, pain, and inflammation, bathroom breaks are rarely quick, they are excruciatingly painful, and can require hours of toilet time before there is any decrease in discomfort.
13. The Pain Posture
The pain gets so intense that scrunching up into the fetal position becomes a reflex, and it often hinders posture while standing, sitting, walking, etc... You are constantly trying to protect your stomach because of the unbelievable amount of pain.
14. Extreme Weight Fluctuations
Sometimes there is so much diarrhea that sufferers cannot put on weight. Some of the medications that help can make you retain water to a noticeable degree. Malnutrition is also associated with these symptoms along with vitamin deficiencies and drastic changes in appetite.
15. No Privacy - Scopes, Enemas, Catheters
Sorry, but when you are diagnosed with a chronic illness involving the intestines, your doctors are going to see every single part of you, inside and out. Welcome to the life of having things stuck up your butt on a frequent basis for as long as you live. Cameras for colonoscopies, other instruments for biopsies, fingers for a regular exam, medicated suppositories, enemas for colonoscopy preparation, catheters, etc... And some with IBD end up having to insert rectal catheters themselves at home, even if only for a while.
Be prepared for constant doctor's visits that include physical assessments of the inside of your intestine. Cuz they're gonna be lookin in there on a regular basis.
16. Tube Feeding
A Nasal-Gastric tube goes up through the nose, then is bent downward and goes all the way to the stomach. Then, food is liquified and administered through this tube. The NG tube can also be used for people who are constantly vomiting.
17. Vomiting and Nausea
You know that moment about thirty seconds before you end up puking? It's when you know you're going to puke, the intensity of the pain and nausea is at its peak, and you get all flushed and sweaty? That feeling - without the relief after vomiting. This is the type of chronic nausea and chronic vomiting that some patients experience.
18. Mouth Sores
Those with Crohn's Disease, specifically, may develop ulcers and sores in the mouth - cheeks, tongue, roof or base, then through the esophagus.
This is not only painful, but it can look disgusting AND give you bad breath.
19. Stool Samples
This diagnostic test becomes pretty standard. You get the job of pooping in some sort of bucket or hospital 'hat' (what health professionals call it), then scoop it out into several containers, all of which have specific instructions and 'fill lines'.
20. The Humiliating Grocery Trip
Standing in line with suppositories, enemas, adult diapers, a bag of meds from the pharmacy, diaper rash cream, laxatives, Imodium, toilet paper, air freshener, plunger...
21. Toilet Clogs
If you're going to the washroom frequently, if you have urgency, and/or if you are spending hours in the washroom, chances are you're going to clog up some toilets now and again. But who wants to buck up and let staff know in a public place? Who wants to ask a friend or significant for help to unclog the can?
22. Skin Infections
The toxicity inside the body tends to have a major effect on the skin. This causes acne, skin infections, abscesses in the skin, rashes, hemorrhoids, etc...
23. Talking About Poop
Once you are close to someone with IBD or you personally deal with it, be prepared for 'poop' to become a normal topic of conversation. You need to pay attention to amount, color (red, black, brown, green, white), consistency (liquid, chunky, mucous, solid, bilious, soft), frequency, urgency, incontinence & leaking accidents, and everything that goes along with poo.
Any one of the above symptoms can be humiliating. For one person to have MORE than one of the above symptoms is tragic. No wonder people are often so hush-hush about the symptoms. I mean, you combine incontinence with extreme weakness, how on earth are you ever going to get to a washroom on time trying to live a relatively 'normal' life? Or if your mobility is compromised and you can't run to a washroom and have incontinence? Or perhaps you've had a colonoscopy and someone asks why you can't join them to go bike riding? I mean - you LOOK healthy, so it must not be that bad...? Friends might think you are 'faking' being sick, friends might think that your 'lack of energy' is actually just you being lazy, and very few people would understand requiring a handicap placard in order to be 30m only from the nearest washroom. Many will also not understand why some IBD sufferers become anti-social, and may judge and criticize, assuming it's just another excuse - they may even take it personally.
Who wants to explain why there is extra underwear in each purse or vehicle? Who wants to explain why they can't stay the night at someone else's house after a house party or BBQ? Who wants to discuss why they ran out of class and never came back? Who really WANTS people to know that they have to wear adult diapers underneath their clothing?
These symptoms are very real, and many of them are common in IBD patients.
So, the next time you encounter someone with a chronic illness involving digestion (or really any illness at all, chronic or acute), pay attention to the symptoms that that person shares with you. Before you come to a conclusion about his/her dedication or whether or not it's a lie or a bogus excuse, challenge yourself to think of all of the symptoms that he/she is NOT telling you about.
The symptoms no one wants to talk about are, quite often, the most debilitating.