Growing up and living with Crohn's disease
October 25, 2007 7:45 AM   Subscribe

The comic was great, BB. Thanks for posting it.

I have an aunt with Crohn's and my wife was suspected of having it, and went through all of the unpleasant testing for Crohn's/Colitis before she was finally diagnosed with a Kidney disease that shares several symptoms.

The most annoying part about it is that no one wants to talk about or hear about a disease that makes you poop. It's a serious medical condition that always seems to be on the short end of the stick when it comes to public awareness and research dollars. I can only think it's yet another sexual taboo that affects the way people see medical conditions. It's the same stupid taboo that keeps men from getting proctological exams and woman from getting regular mammograms.

When are people going to get comfortable with the idea that their bodies are not 'dirty'?
posted by WinnipegDragon at 8:09 AM on October 25, 2007

That was fantastic.
posted by arcticwoman at 8:12 AM on October 25, 2007

Fantastic post, thank you so much for sharing it.
posted by agregoli at 8:22 AM on October 25, 2007

Awesome stuff, thanks for sharing it.
posted by Sticherbeast at 8:23 AM on October 25, 2007

This comic made my morning, it was so good. I loved everything about it, the intimate, awkward story, the layout, the art, the color palette, the brushstrokes, hell, even the way the narration balloons aren't the typical squares. It really showcases the best of the medium's potential when good words and pictures come together.
posted by Brandon Blatcher at 8:27 AM on October 25, 2007

That was totally awesome. Good luck to Tom!
posted by GuyZero at 8:31 AM on October 25, 2007

That was a very good comic. My oh my.
posted by Greg Nog at 8:32 AM on October 25, 2007

Thanks for this, an interesting perspective. My mother suffered badly with Crohn's disease for the last 10-15 years of her life and it can really destroy quality of life, in some ways that perhaps Humberstone has yet to experience and hopefully won't. My mum's started with the same symptoms he had, and was also treated with large doses of steroids to try and keep development at bay. What he doesn't mention is that it can lead to the formation of abcesses anywhere along the digestive canal - from throat to anus - the cause of much of the pain I would assume. There's a limit on how long you can be on steroids of course, so if things keep going then they have to look for alternatives (or they did 15 years ago). In my mum's case the disease spread and she had to have a section of bowel removed then regular checks to see whether new abcesses had formed, the section removal then led to adhesions (basically the wound where the length of bowel had been excised and the ends rejoined heals such that stuff can't get through, which is both dangerous and painful). She had about 9 major operations eventually, losing about 5' of intestine, including the small intestine.

As in the comic the early years meant stomach pain, the need to run to the loo and other inconvenience, but with operations and the physical impact it was to get much worse. She often said food could pass right through the intestine so fast she could pass food before she'd finished her meal, I don't think she was joking. Damage over time meant loss of bowel control; the comic implies this, but doesn't really mention the solution, adult sized nappies that can end up filled at any time.

Besides the purely physcial effects, long periods where it was really bad meant being house bound so her social life disappeared and eventually many friendships faded away. Her quality of life going down hill so fast meant bouts of serious depression.

The disease itself won't kill you directly, but I know all too well the physical consequences can build up so that it destroys your body, major surgeries ruin your health, your inability to absorb nutrients undermines your system and ever increasing pharmaceuticals to ease the various symptoms, the impacts of the surgery and the pain lead to a compromised immune system leading to more meds, vulnerability to infection with any passing germs and a spiralling decline as doctors try to stop one thing with meds that add up to ever increasing problems. A cold would typically take 6-8 weeks for her to get over. Eventually a trip into hospital to address an increase in the severe pain she was generally prone to would lead her to contract MRSA, and despite initially looking like she would make it, her immune system resuccumbed and couldn't fight off a resurgence. She died aged 59, after some pretty shitty years of life.

Gosh, I'm not sure where that came from. Does this I'm venting?
posted by biffa at 8:34 AM on October 25, 2007 [8 favorites]

As someone with CD, let me just say thanks to Tom and thanks to you for posting this.
posted by chrisamiller at 8:34 AM on October 25, 2007 [1 favorite]

It's the same stupid taboo that keeps men from getting proctological exams

I think that has to do with the fact that a lot of men find it uncomfortable to get a finger up their butt.

But yeah, people shouldn't be scared to talk about Crohn's because diseases aren't moral failings. Even if it is a poop-related disease.
posted by GuyZero at 8:34 AM on October 25, 2007

That was wonderful. He describes the "out of the blue" need to go quite well.

It's an embarassing, painful, life-altering disease (I'm coming up on the tenth anniversary of my diagnosis) and it doesn't get the attention that other diseases do, even though it's becoming increasingly common. My great-great aunt died in her 40s from complications from it. My mother had to go on IV nutrition while she was pregnant with my brother because she was having such a bad flare. I've had surgery already by age 25 and I'm on meds that I have to inject into my stomach.

Like GuyZero noted, dieases are not moral failings. Why should people not want to talk about it? Why is there shame? I've been pleased to discover that people are much more supportive than I thought they would be.
posted by josingsinthehall at 9:11 AM on October 25, 2007 [1 favorite]

I'm glad you say that - I hope I haven't been really selfish with that story and scared the hell out of people who are also sufferers.
posted by biffa at 9:16 AM on October 25, 2007

Nice find Brandon Blatcher.

Strange to be pleasantly surprised learning about an illness because the story of his illness was told so well. What a great 'comic'. It made a difficult topic not only easy to understand and empathize with but it was interesting too.

Wish there were 'comics' like that for all illnesses. It reminded me a bit of the enjoyment I got as a kid reading the Classics comic books.

Incredible he did the comic in 24 hours. wow.
posted by nickyskye at 9:19 AM on October 25, 2007

I could not agree more with everybody on this. I had a dear friend in high school who suffered from Crohn's, and he was lucky to fall in with a group of misfits who treated his outbursts of "I HAVE TO POOP!" with good humor and found him suitable conditions PRONTO. He was brave enough to admit his condition to some. Reading the comic, I couldn't help but think of what isolation he would have felt had he not. What a neat comic. I hope someone reads that and realizes, like josingsinthehall noted: diseases are not moral failings.
Okay, ::steps down from soapbox, moves on::.
posted by the_royal_we at 9:40 AM on October 25, 2007

I have a stupid question, but I'm honestly hoping that on a thread about a poop-related disease, it will be okay.

How does someone defecate more than once a day? Where is the poo coming from? Does food just not break down enough to scrunch up into a manageable bolus? If the person has to go constantly, is it just tiny quantities they have to get rid of?
posted by Marquise at 10:15 AM on October 25, 2007

Mike McCready from Pearl Jam suffers from Crohn's and has been quite visible on the awareness-raising front. I, personally, had never heard of the disease until his involvement with CCFA.
posted by joseph_elmhurst at 10:16 AM on October 25, 2007

This is a surreal moment for me. From seeing an online comic about it to seeing a commercial with people laughing saying, "Don't let Crohn's stop you from living!"
My brother passed away due to complications of Crohn's in 1984, he was 15 years old. He was misdiagnosed by many physicians claiming he was mentally ill and causing his own symptoms. They said it could be a combination of anorexia and bulimia and the effects of those two on his body caused him to have BM problems.
Finally my mom spoke up and said something is wrong with her son and it isn't his mental health. A wonderful doctor at Emory University diagnosed him with Crohns, but it was too late. He only survived one surgery and a few months later he passed away.
After that incident my parents began to raise awareness of Crohn's so this won't ever happen again. They spoke to all the physicians who misdiagnosed him and put them in touch with his doctor in Atlanta. They were on a crusade.

I'm glad that today it can be diagnosed quicker than before and people do survive this.
posted by czechmate at 10:49 AM on October 25, 2007 [3 favorites]

Excellent comic - thanks for posting it. I'm midway through the diagnostic process with something that, while I suspect it isn't Crohn's itself, shares a bunch of symptoms. Fun times.
posted by flashboy at 11:02 AM on October 25, 2007

That was really interesting stuff. Thanks for the head's up.
posted by Alexandra Kitty at 11:08 AM on October 25, 2007

Marquise -

For Crohn's patients, it's lot of diarrhea (God, I can never spell that). It's a lot of abdominal cramping that'll result in a little bit, many times in a row, to avoid being too graphic. Often there's blood and mucus mized in. It's your body trying to get rid of anything inside it. If you've ever had stomach flu, it's like that, but every day.

Czechmate - My condolences on the loss of your brother. I spent a lot of time working over this possibility with my fiance - I know it still scares him to know that it can get out of control. It's a testament to people like your parents and the doctor that finally treated your brother that other doctors are now taking our symptoms seriously.
posted by josingsinthehall at 11:50 AM on October 25, 2007

That was really great. Thanks.
posted by ND¢ at 12:59 PM on October 25, 2007

Nice work. Great honest delivery. Seems like the perfect sort of comic to share with others who are dealing with a Crohn's diagnosis. Maybe someone will print a million of them for waiting rooms.
posted by JBennett at 1:58 PM on October 25, 2007

Excellent. Thanks.
posted by Songdog at 2:19 PM on October 25, 2007

Thanks for the post.

And Biffa - my sister suffered from Crohn's for a decade (thankfully in remission now) and your comment was spot on. There was a year or two that she was as sick as anyone I had ever seen. Not to mention that the long term use of steroids can seriously fuck you up mentally and physically. She gave me a short course to help me get over a bout of pleurisy I had and by the end of the first week I was crying like a twelve year old girl at the slightest little thing and wondered if I was going insane. She had to take them for years!
posted by vronsky at 2:44 PM on October 25, 2007

"He was misdiagnosed by many physicians claiming he was mentally ill and causing his own symptoms."

this is very common with Crohn's and my sis went through it too, and she is a nurse from a medical family. Crohn's can also effect the joints and causes crippling arthritic pain in many sufferers.
posted by vronsky at 2:52 PM on October 25, 2007

This is wonderful - thanks so much for posting this.

I didn't develop crohn's until I was around 21, but I have the utmost respect and admiration for people who have managed to get through their teen years while dealing with IBD (and with a sense of humour still in tact, no less!)

Makes me wish I could get over my own embarrassment of talking about the weird and wild world of my intestinal system (and lack thereof), because there's a lot of highly amusing stories I could tell. I generally prefer to just avoid discussing it because most people don't seem to move past the "oh you poor thing" reaction, and pity gets a little tiresome after awhile.

Thanks again - I think I'll print out a few copies for my GI doctors...
posted by raxast at 3:04 PM on October 25, 2007

My mother had Crohns, really bad. She was one of the first people to get a colostomy surgery in Canada - she got it at the age of ten. The disease destroyed her life and caused severe depression. I remember many times with IVs. She faced epilepsy and addiction to her pain medications as well, but raised four kids and lied to the age of 46, probably through sheer ferocious stubbornness (which I inherited).

It's a horrible, humiliating disease. My grandfather had it, my younger brother has it. On with the biotechnology, we need a cure,
posted by By The Grace of God at 3:35 PM on October 25, 2007

Wow, it always amazes me when people come forward in a MeFi thread saying they have this illness or that, how many of us have struggled with one severe thing or another or loved somebody who has.
posted by nickyskye at 4:04 PM on October 25, 2007

My girlfriend has CD. From age 11 to 18 she was in constant pain. They removed part of her intestine when she was 18, and she immediately felt wonderful. I think it's really formed who she is - she is the definition of the "orgonotic organism", interpreting the world and her sensations positively. However, her energy levels are a complete sine curve, and seemingly innocuous foods can really throw her off. (Although I think there's a bit of a psychosomatic component to that)

The section they removed is responsible for processing B12, so she has to give herself a B12 shot occasionally. I've seen her do it - it leaves this huge bump of B12 on her arm that her body slowly subsumes.

She's generally a vegetarian (as it meat gives her problems) but occasionally (every few months) she has a meatball and it raises her energy levels instantly.

I personally have undiagnosed GI issues, not as bad as her, but I do have a family history of ulcerated colitis. Soon it will be diagnosed, however. Last week I gave the doctor some blood, some stool, and a mix of both.
posted by mammary16 at 4:14 PM on October 25, 2007

Mammary16 - Your first paragraph also describes my experience perfectly. I had a bowel resection when I was 20 and it was honestly the best thing that happened to me.

It amazes me too how many people have come forward in this post. I use it as a lesson to remember that everyone's dealing with something - it wouldn't hurt me to be a little more compassionate.
posted by josingsinthehall at 7:24 PM on October 25, 2007

nickyskye: i agree with you, wholeheartedly.

i just discovered the borderline personality disorder post/thread yesterday. thank *you* for all of your contributions to that.
posted by CitizenD at 9:20 PM on October 25, 2007

Great post. Thanks.
posted by Lezzles at 12:25 AM on October 26, 2007

I rented a room from a CD sufferer. He had it very bad, it hit him in middle age. They ended up removing his entire colon. Then another friend has it, but not nearly so bad.

I'm surprised no mention here of the research into gut worms to treat the condition. Here's a comment from rob511. And an article from New Scientist..

I've suffered my own gut problems since age 11, but not this one, and no where near so bad.
posted by Goofyy at 2:22 AM on October 26, 2007 [1 favorite]

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