The Stuff You Don’t Hear About IBD

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Despite all the wonderfully positive stories you might see on the news or on blogs about IBD’ers who’ve overcome personal obstacles, it probably wasn’t always easy for them.  Many of us haven’t climbed over those obstacles yet, and continue to live a life of pain and suffering. Many IBD advocates have attempted to bring these issues to the forefront, but our message about the true challenges we face when living with Crohn’s and Ulcerative Colitis usually goes unnoticed by the general public.  I hope to bring some of those challenges to light in this article.

Keep in mind that not everyone with IBD will experience these problems, and this post is not intended to scare anyone who is newly diagnosed.  My goal is to let the public know how serious this illness can be (so maybe they’ll stop telling us that we don’t LOOK SICK).

This post contains very graphic content (hidden by default), strong language and many, many puns.  Having lived through many of these symptoms, I can only tell you that profanity is a wonderful painkiller and coping mechanism (science has agreed thus far SOURCE), so let out an f-bomb when you’re in a flare! I won’t judge you.

Malnutrition, Deficiencies, and Weight Loss

A common problem that many people with Crohn’s or Ulcerative Colitis will face.  When your gut is inflamed or scarred, nutrients aren’t absorbed well, which means malnutrition and weight loss.  But when you factor in that many people with IBD can’t keep food down (because they throw it up) or because food passes right through them without having time to digested or assimilated, you’ve got a recipe for disaster.  It’s quite common for someone with IBD to lose massive amounts of weight during a flare (and don’t you dare tell them they are “lucky”).  I went from 160lbs to under 108lbs during the course of my illness – it’s fucking scary.

PHOTO: Skinny Me (approx. 127lbs)

PHOTO: Skinny Legs (approx. 106lbs)

Of course, eating more would help, if not for the fact that eating usually causes us to vomit or shit uncontrollably for the next day and a half. And you want to know what vomiting and shitting all day does to us? It causes us to lose more weight and become malnourished. Just great, eh?

Chronic bleeding also contributes to anemia, which causes another set of problems on its own.  It’s quite common for someone with IBD to be taking iron supplements, vitamin B12 shots or even be fed through TPN (basically being fed intravenously).

Abscesses and Fistulas

Ahh, fistulas.  I won’t get technical, but think of them like wormholes tunneling through parts of your body, between organs or through your skin.  Fistulas are among the worst symptoms for anyone with IBD, and they can be hard to treat.  You don’t tend to hear people talking openly about their fistulas because they can appear in the most private of areas: for women, that can include coming through their vagina.  When a fistula originates in the rectum or intestine, you often end up with stool coming out of the exit hole (your vagina, your skin, another organ, your bladder, etc.).  My fistulas caused gas and stool to painfully accumulate UNDER my skin many times a day.  It required the complete removal of my colon, rectum, and anus to get my fistulas under control!

Abscesses are an accumulation of puss under the skin.  I’m not talking a small bump like a mosquito bite, I’m talking golf ball sized or larger in some cases!  When these abscesses can’t drain, they hurt like hell!  Abscesses can often be the source of a fistula, which, as you’ve read about already, are no fun.  A perianal abscess was one of my first symptoms of Crohn’s disease.

Nausea and Vomiting

Sometimes we don’t just shit uncontrollably, we often puke uncontrollably too! I suffered from both nausea and vomiting for several years, and it was a nightmare.  Nausea made it difficult to want to eat, and the vomiting (or dry heaving) made it impossible to eat.  I don’t know what pissed me off more: the fact that eating would lead to vomiting and more pain, or that vomiting is a waste of good food (I really hate wasting food).  Either way, throwing up until you can’t breathe is a terrible way to live.

Anal fissures

Anal fissures are tears in the skin near the anus. These hurt a lot, especially when you have burning diarrhea a dozen times (or more) a day. I use to have fissures off and on, and they made any time in the bathroom a terrible experience. Even showers would cause these fissure to burn and/or bleed. If you’re having a shitty day from Crohn’s disease, anal fissures are ready to make it worse.

Internal and Rectal Bleeding

Many people with Ulcerative Colitis or Crohn’s Colitis will see blood in their stool at some point.  The bleeding might come from the damage done to their intestinal lining or from damage around the rectum and anus.  Seeing blood when you expect to see poop in your toilet can be unnerving; it certainly was the first time (and even the 20th time) I saw it.  Because I also had active perianal disease, including abscesses and fistulas, blood would often show up on toilet paper or on the pad that I use to wedge between my butt cheeks (to stop the drainage from my fistulas from soiling my underwear).

GRAPHIC PHOTO: Toilet full of blood

I remember feeling blood dripping from my ass when I’d be sitting on the toilet sometimes; the blood would usually not stop unless I was applying pressure to it.  One of the fears I had when rectal bleeding was a problem, was the thought that I could “bleed out” while sleeping.  Fortunately, this never happened, likely because of that pad I use to wedge between my butt cheeks was creating enough pressure to stop any bleeding.  This strategy, however, created many opportunities for clots of blood to collect under the skin and in my abscesses.

GRAPHIC PHOTO: Bloody mass from abscess

GRAPHIC PHOTO: Bloody Gauze pad

Eye Problems

There’s a crap-load of eye problems that can be associated with IBD.  It’s not unheard of for someone with IBD to have inflamed eyes to go along with their inflamed guts. It’s another extraintestinal manifestation that seemingly has nothing to do with the digestive system, but it does happen. I get this from time to time, and it does sting a bit. Sometimes this type of eye inflammation can cause more damage and it should be checked out by your GI and optometrist.

GRAPHIC PHOTO: Eye Inflammation

Skin Problems

Some of the medication used to treat IBD can cause skin problems, but IBD is also known to cause a shit-ton of skin issues too. Rashes, psoriasis, eczema and skin ulcers can also manifest, often during a flare.  I haven’t experienced any severe skin problems, but here are a few photos from around the internet to show you just how brutal this can be:

GRAPHIC PHOTO: Skin Lesions from Crohn's

Perianal Disease

It’s one thing to talk about this “pooping” disease, and another thing to talk about our assholes, but combine the two and you have one nasty problem: perianal disease.  This was a common feature in my own Crohn’s disease, and it’s part of the reason why I now have a permanent ostomy and no asshole to speak of.  If someone were to ask me what perianal disease feels like or looks like, I’d probably say that it’s similar to putting a stick of dynamite between your ass cheeks and lighting the fuse to see what happens.  Of course, I’m joking (it’s not easy to find dynamite at your local Walmart!), but when you see the extent of my perianal disease, you’ll likely find that the joke isn’t too far off from reality:

EXTREMELY GRAPHIC PHOTO: Abscesses, fistulas, skin tags, fissures (around my rear end)

Mouth Sores

If you’ve ever had a canker sore, you’ll know how painful it is to eat or talk with one, but imagine having a mouth full of those sores for weeks or months at a time.  Mouth ulcers (a.k.a APHTHOUS STOMATITIS) can happen in those with Crohn’s disease.  When it happened to me during my “Great Flare of 2010”, it lasted nearly a year, and I had 10+ sores in my mouth, all at the same time. It was absolutely brutal!

Incontinence and Urgency to use the bathroom 

What the general public knows about IBD tends to be limited to what they see in commercials or from watching an interview with a celebrity who has it, but the focus tends to be on the fact that many of us with active IBD are in the bathroom a lot.  But what doesn’t get talked about is incontinence, which leaves us shitting in our pants more often than we’d like to admit.  This has happened to me many, many times, often several times a day.

What’s worse than RUNNING to the bathroom 20 times a day? Not making it to the bathroom 20 times a day. 

Urgency and incontinence are among the worst symptoms of IBD, not only because of the obvious mess that tends to follow, but for the fact that we tend to stay locked up in our homes out of fear that this unpredictability may suddenly present itself while we are out in public – even when not in a flare!  Someone with IBD simply cannot “hold it in” like the rest of the population can.  And no, it’s not like the one time you had food poisoning…

Side effects from Medication 

What’s better than feeling like shit because of IBD? How about feeling like shit because of the treatment for IBD! Just like the insert included with your prescriptions, I could write a book listing only the side-effects from the most prescribed drugs used to treat IBD, and that’s not even touching Prednisone!  Ah, Prednisone, a drug that would likely be banned if not for the fact that it does help some people. The side-effects from Prednisone likely inspired many books, comics, and movies, like Dr. Jekyll and Mr. Hyde, The Incredible Hulk, Psycho, Nightmare on Elm Street and more.  Here are some of the “awesome” things I experienced while on Prednisone:

  • Severe vision loss (went from 20/20 vision to not being able to read the time on the clock next to my bed, in a matter of DAYS while on Prednisone).
  • “Moon face” (we all joke about this after we come off Pred, but it’s no fun!).
  • Peeling nails.
  • Hallucinations, nightmares, “micro sleep” (when you doze off in the middle of something and have no idea what the hell happened).
  • The feeling that ants were crawling under my skin.
  • Massive weight gain with an insatiable appetite.  I recall making veggie burgers at 3:30am… more than once while on steroids
  • Extreme mood swings. violent thoughts, rage, depression.
  • Tremors and muscle pain.
  • Stiffness in the legs, which was a joy while walking (not!).
Moonface while on prednisone
Not even facial recognition knew who I was on Prednisone!

And that’s just the tip of the iceberg! But you know what really sucks? We usually don’t have a choice when it comes to these medications, so you either suffer from illness or risk side-effects.But remember that not everyone will experience side-effect or have such extreme side effects from their meds.  Not being treated can often be much worse!

BUT WAIT, THERE’S MORE!

Wait there's more meme
IBD always has a “bonus”…

There are still things like increased risk of colon cancer, bone problems, crippling joint pains, depression, extreme fatigue, blood clots and other really shitty things that go along with this “hidden illness”.   So please, when you hear that someone has IBD, show some compassion. While the media and television ads might lead you to believe that IBD is just a bad tummy ache gone wild, it’s often a nightmare for those with Crohn’s or Ulcerative Colitis who experience a full gamut of problems.

QUESTION: Were you offended by the content in this post? If so, did you at least learn something new?

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11 thoughts on “The Stuff You Don’t Hear About IBD

  1. Hey there, yup Crohn’s is nasty. I recently had a total proctocolectomy with end ileostomy because of lovely fistulas.

  2. ….thank you….. I was able to laugh a little at this horrible disease…I may steal some of this article when ‘splainin’ what the hell is wrong with me :)

  3. More than anything else on your list for me (and this contributed to the long time it took to diagnose me with Crohn’s) is crippling, debilitating abdominal pain. Thanks for sharing your story!

  4. Great to hear the direct honesty and no holding back on issues all us IBD people face, it is often a hard subject to talk about and I myself face right now with the worst abcesses and fistulas leading me down the path of an ostomy right now. 7th week in the worst pain I’ve ever experienced ever, 24/7 no relief no pain medication can even touch and worse than before I had my bowl resection in 2004.

    • Abscesses and fistulas are among the most painful symptoms to have, but I found tremendous relief with my ostomy. If you end up going down that path, I have no doubt that’ll help you too. Good luck!

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