Monday, November 13, 2006

One of those rare posts where I talk about myself

A couple people have emailed me about a reference I made to 6-MP, an immunosuppressive drug commonly used for various chronic illnesses involving a hyperactive immune system. Since Yahoo mail "lost" two weeks worth of stored mail and a number of those emails, I'll answer it here.

I have Crohn's Disease (link NWS). It's one of the reasons I live in New York - all of the best doctors are here and my case is rather complicated. It's also why I don't work full time, aside from also being in grad school full time - I'm always rearranging my work schedule around procedures and emergency appointments, and my boss is incredibly understanding about it.

Someone else with Crohn's asked me why there isn't more books about it. After all, we get plenty of submissions every week from cancer survivors, or friends of people who died of cancer, or crazy doctors who think they've found a cure to every disease and it's apparently eating dirt.

The answer is probably that Crohn's Disease, Ulcerative Colitis, and the rest of the Inflammatory Bowel Disease family are all pretty gross to discuss in any detail. While I'm not ashamed to say I have the disease and describe the symptons to anyone who actually really wants to know, most people who have it do not come forward, because it's embarassing. And even if/when people do write about it, it probably wouldn't sell to people who don't have the disease or relatives who have it. Anything exceedingly well written will sell, but very few things are exceedingly well written, and it's even more important if the text is a sensitive topic. I've seen very few narratives, fiction or non, about waste management. (Except by environmentalists) I've never seen a protagonist who had a job cleaning septic tanks. The closest I've ever seen to that is Lore from Slow River working in a water filtration plant. It's not that the topics are "off limits" - nothing is - but they're not palatable, so they won't sell to a large audience.

44 comments:

Kim Stagliano said...
This comment has been removed by a blog administrator.
Anonymous said...

I have a niece with intractable interstitial cystitis for years (IC is also thought to be an autoimuune disease. Not sure it's meaningful to a Crohn's sufferer, but after years of agony my niece has responded beautifully to cyclosporine (the anti-rejection drug that, like your drug, tones down the immune system so transplants aren't rejected.) Might want to research it in your quest to feel better.

Dave said...

You know, Dilbert has a garbage man who advises him on everything from quantum physics to deep metaphysics worthy of secular philosophers and Talmudic scholars, however, I can't think of any other protagonists in that industry.

Other than a good smile, I guess that doesn't count for very much.

Anonymous said...

i am on long island in ny. where are your doctore? nyc? or any good ones on LI?

The Rejecter said...

If you have Crohn's Disease, come to Mount Sinai hospital, where Dr. Crohn used to work. My doctor is part of the group that includes his old student, Dr. Present, inventor of 6-MP.

Anonymous said...

*hugs*

Yeah, I was having, ahem, bowel issues about a year ago (also auto-immune related, and I thankfully now have a medicine that is helping beautifully).

You're right that you just can't talk about it. Even your most loving and supportive friends can't stomach the details unless they happen to be a nurse or a doctor.

I certainly can't imagine complete strangers wanting to read about it. The ick factor is too hard to get past.

Tattieheid said...

Someone should still write that book.

I'm glad you have good medical and other support.

A friends niece has Chrohns. Now a teenager she's been through hell since she was a baby but like you is determined to have a life. I send you a hug and a lot of respect from the UK.

Anonymous said...

Miss Rejecter,
I hope that you overcome this illness. Great medical advances have been made and eventually there will be a cure! Hugs to you!

I have to address this: quote-crazy doctors who think they've found a cure to every disease and it's apparently eating dirt. end quote

I know they're crazy because I have eaten my share of mud pies as a child and still got sick!! LOL!

Anonymous said...

I strongly recommend the book THE MAKER'S DIET by Jordan Rubin. Dr. Rubin was on the brink of death, suffering from a serious case of Crohn's disease. Changing his eating and lifestyle to "The Maker's Diet" literally saved his life.

This diet is not just for sufferers of Chrohn's disease, but for all who want to live healthier lives. There are testimonies of people becoming cancer-free, lupus-free, GI-disease-free.

I believe that the book would be well worth its purchase price for a chance to be rid of the disease.

I wish you all the best.

Anonymous said...

I am so sorry to hear that you suffer from Crohn's. It runs in my family and I have a mild case of it and two other auto-immune diseases. It's a real picnic and eating can be an adventure.

I also cannot work full-time and a lot of people just don't "get" how it can be that I can't work full time. They don't understand how my body just can't run at that speed.

Anonymous said...

Never thought I'd see something that hit me personally on a blog like this. I don't suffer from Crohn's, but my husband does. And you're right, he refuses to talk about it. Everything I know about the disease, I've learned from my own research.

The way he put it was that one day he read that Crohn's has a very good chance of being fatal, and after that he just didn't want to know anymore. A few surgeries and over twenty pills a day, and he still feels that way.

I don't know how a person would write a book about it, because people can barely talk about anything related to digestion without feeling embarassed. I could go on about how bad that is for ages.

I'm glad that you're willing to discuss it with people. Maybe that'll get somebody else talking and eventually we'll get that book and a little more understanding. I'm really tired of having to explain it to people who tease about how skinny my husband is, and say I must not feed him properly.

Thomma Lyn said...

I'm so sorry to hear that you have Crohn's Disease. My husband suffers from it, and I know how awful it can be.

My thoughts on why there aren't novels out there about it: I don't know. But here's my experience: I've been pitching a novel to agents, and in my novel, one of my main characters is diagnosed with Crohn's following a medical emergency. My novel doesn't go into the squicky minutiae of the disease. Rather, its climax revolves around the threat to my character's life and the immediate aftermath of his surgery.

In my query, I say that a "chronic disease" theatens my character's life, but I don't get specific. As I was working on the query, I offered it up for critique on a writers' board. Somebody suggested I spell out what the chronic disease is, and when I said it was Crohn's, an inflammatory bowel disorder, one particularly rude person on the board had a field day with it. I wound up changing it back to "chronic disease" because of the ugly reaction "Crohn's" provoked.

Small wonder it's hard for a novel dealing with Crohn's to get "out there" when a writer has to be leery of even identifying the disease in a query letter.

Anyhow, I apologize for rambling -- I just had to comment because this is the first time I've run across a blog-discussion about novels that deal with Crohn's.

Take good care of yourself, and best of luck managing the disease. And thank you for your interesting and informative blog. :)

jerm said...

For what it's worth coming from a random internet person, I sympathize. I had my ilium, ascending and part of my transverse colon removed in February after ten years of Crohn's suffering and a year of being bed ridden due to a massive lingering infection caused by a fistula that would not heal. It was a life altering experience. I'm sure it will inform my writing someday, although I’m not sure I'll end up writing about Crohn's Disease specifically--at least in my fiction.

...unless I continue with a project I’ve had on the back burner since my last hospitalization: "When Ronnie Rotgut receives his 453,037th copy of the Maker’s Diet from a well-meaning friend with a misguided notion that eating raw oats can cure the festering, sieve-like sack of flesh that is his colon, he strikes out to raise awareness of his condition; however, he soon remembers that he’s hospitalized with a life-threatening infection, and resigns himself to an interminable future of Judge Judy reruns, night sweats, and intra-venous nutrition." Erm, yea, it needs some work.

Seriously, though, I don’t think we should be afraid to talk about our condition with friends and family. There are definitely enough people with it to warrant more awareness, and I've found most people I know to be genuinely interested and caring about what I went through.

Katie. said...

Another Crohn's sufferer, here! I've had it for sixteen years and am only twenty-five. I've actually been bed-ridden today from Crohn's related issues (culminating in a wonderfully high fever... ugh).

It feels great to see other people posting who know about the illness-suffer from it themselves, or have loved ones afflicted (if IBD in general, not just Crohns).

Beyond my little CCFA (Crohn's and Colitis Foundation of America, as most of you probably know) enclave, I haven't come across many people with IBD. It always encourages me to read other people's stories and know that I'm not the only one who can't work full-time and is constantly having to explain why that is (and even then, most people don't understand).

Thanks, TR, for having the courage to mention it in your journal. I think just the few of us who are not afraid to talk about it might, someday, be able to teach the silent sufferers that it is nothing to be ashamed of.

I know I'm not.

The Rejecter said...

I've tried all kinds of crazy diets, including the one where they start you on JUST rice and chicken (and maybe rice milk and rice dream ice cream) and then move to soy, and then to tofu, and then start adding other stuff. Well, I was in the middle of this wacko diet when I STILL got hospitalized, so they decided, "Uh, forget it. Eat what you want."

I can't eat fruits or vegetables (I take vitamins and drink ensure for nutrition). Everyone once in a while some person comes up to and tell me to go on some crazy diet ("All beets! I swear it works!"). Seriously, I have to drink and eat so much nasty s!@+ for my medical procedures that I have little patience for diets that do not seem to work. Show me a study from a legitimate hospital that says it has significant consequences above the placebo group and I'll CONSIDER trying it.

KL said...

This is a complete aside, but...

You mentioned Lore from Slow River. I HEART you.


(And now that that's over with, best of luck with your ongoing treatment.)

Anonymous said...

I'm sorry to hear that you have Crohns. My son suffers from chronic reflux and this presents more problems as he grows older (and he's only five!). It's not a pretty or pleasant condition - vomit, bad breath and constant pain do not add up to the kind of illness that anyone wants to know much about.

JohnnyV13 said...

My dad is a retired Gastroenterologist, (a specialty I'm sure you're VERY famialiar with) and a 24 year old friend of mine had an indeterminate diagnosis that could have been either Crohn's, UC or a bacterial infection. Because her gastro was young and he scared the heck out her by being vague about her condition, she ended up talking to me about it. Crohn's in not fun and I'm not surprised you don't see it in literature. In literature we want to read about people whom we want to be, (at some level) and NO ONE wants to have Crohn's.

Anonymous said...

Rejecter,

I can understand your skepticism considering all the wacko stuff out there. I can assure you that "The Maker's Diet" does not fall into that category. In fact, Jordan Rubin begins by sharing his personal story and all the incredibly wacky, strange, completely ineffective "treatments" he had tried. He was ready to submit to serious surgery (removing a large bit of intestine, I think) when his father discovered the Maker's Diet. It's a complete lifestyle/eating change (not "eat only beets" or whatever) -- all organic/natural foods, supplements, etc. If you think for a moment about the CHEMICALS most people put into their bodies every day and call it "food" -- well, you can see how it can ultimately lead to poor health. (Think "sodium nitrate," "sodium benzoate," "blue lake #40," etc.)

To you and to all the other Crohn's sufferers who have posted here....isn't it worth just reading the book with an open mind? Jordan's before-and-after photographs of himself are astonishing enough. But the simple, practical, almost "duh" approach of The Maker's Diet speaks for itself as well. Sure, you'll be stretched. But isn't it worth your health? At the very least, you can get the book at the library and it won't cost you a thing.

Anonymous said...

I don't have Crohn's but I've had a constant IBD-like trouble for years. It's probably diet related in my case, but even when it isn't life threatening or even terribly inconvenient, it is amazing how many people tell me what diet to be on. I figure that if you have a disease like Crohn's you have probably tried just about everything by now, but I do hope that something comes along which helps you heal.
writtenwyrdd

Maria said...

There's got to be a small publisher that would take on such a book--maybe a university press. Personal experiences, treatments tried, how to handle the emotional ups and downs?...Seems to me like just having a book to read on the condition might be a bit of comfort, just like your post has offered comfort to some readers! And maybe you'll be just the person to write it. :>)

Good luck to you.

Anonymous said...

Sorry to hear that. My husband has a friend with Crohn's; you're right that it's not the prettiest of topics. I hope that you're getting good treatment.
Jess

Sheila said...

I've got it too, but fairly mild (no hospitalizations since childhood) I recommend Jini Patel-Thompson's 'Listen to Your Gut.' I have the first edition, and recently recommended it to a friend -- it looks like its now out of print and there is some crazy, expanded new version that costs waaayy more money...?

PubGuy said...

Don't know if it's exactly to target, but you might want to check out Romance, Riches, and Restrooms: A Cautionary Tale of Ambitious Dreams and Irritable Bowels. While I have not read it, I've heard good things about this POD title through iUniverse. You can see it here: http://www.iuniverse.com/bookstore/book_detail.asp?&isbn=0-595-38544-3

Pauack said...

try taking all grains out of your diet for about two weeks or up to a month and see if it makes you feel better...

Anonymous said...

Doctors don't make money by telling you to take grains out of your diet, they make money prescribing drugs. Not to mention the drug companies. And most people are too lazy to change their diets radically - it's easier to take a pill. That's the American way.

Alley Splat said...

Sympathies, Rejecter; hope they find something that can cure the Crohns soon. It's such a difficult thing to have - my dad has it mildly and that's hard enough to deal with.

Would have thought that a book would sell to people who have Chrohns/IBS, and their relatives who want to know more about it. Might be worth a try.

Thanks for the blog - it's great!

2readornot said...

Oh, I'm sorry to hear! my roommate from college has ulcerative colitis; my best friend's sister has Crohn's...my great-aunt had UC...so i'm aware enough to know how challenging it can be!

jerm said...

To Anon 4:36 PM-- Yeah, you’re right. Crohn’s sufferers surely wouldn’t be able to handle a change as "radical" as altering their diets. Especially those who have to schedule their days around bathroom breaks, those who spend whole days in bed in the fetal position due to stomach pain, those who are repeatedly in and out of the hospital, those who go months being fed by an IV tube, those who’ve had part or all of their colons removed, or those who shit into a colostomy bag. I mean, come on, what would they know about lifestyle changes?

If you think a change in diet is something radical, we’ll, consider yourself a lucky little nitwit.

I don’t advocate blind trust of doctors, either, but I do know how incredibly hard my GI doctors have worked to try and keep me well. Crohn’s management is a delicate balancing act of the right medications and treatment. If you think it’s like treating strep throat or something you’re in need of a clue.

To the Maker’s Diet anon(s)-- Jordan Rubin’s story is inspiring, and there are legitimate reasons to try different diets (pain management, better absorption of nutrients, etc), but anyone who thinks dietary change can cure the disease is misguided. Try googling "autoimmune disease" and "chronic inflammation" to get a better sense of what Crohn’s is about. The bottom line is that for unknown reasons, the sufferer’s own body attacks itself. It really has very little to do with food; however, everyone is affected differently by the condition, which is why in some cases the right diet can help send it into remission.

I can’t speak for anyone else, but regardless of what diet it is, I’ve personally found it very annoying and insulting when someone tries to tell me that I can be cured if I only change what I eat.

To Rejecter—Sorry for arguing in your comments section. >.< I have to say, though, after writing out this comment I’m strangely compelled to sit down and write a short story involving a Crohn’s sufferer. Anyway, thanks for sharing this with us, and stay as well as you can.

Anonymous said...

The Maker's Diet is about way more than just "changing what you eat." That's oversimplified.

I hope that you will read the book and see the wisdom for yourself. The Maker's Diet is definitely (definitely!) a "radical" change...but for many people it has led to a complete cure.

I wish you the best (sincerely).

Anonymous said...

Actually, I have read one book in which the heroine has ulcerative colitis. It is set in Japan and the entire first scene of the novel is concerned with the workings of a Japanese toilet. Anyway, it is actually a lot of fun and I've been hoping for a follow-up. The book is called American Fuji and was written by Sara Backer, and either in spite of or because of ulceritive colitis (which is a large par of the story), it is a pleasure.

Anonymous said...

I have a friend with Crohn's disease, and I'd definitely buy a book on it, if only to learn about the things that she finds too difficult/embarrassing to tell me about her illness, and thus to be more understanding of what she goes through.

Robin L. said...

R - Just wanted to let you know that I've struggled with IBS and IBD myself. I know some of the pain you're in and I'm so sorry you have to deal with this!

I've done a lot better after eliminating gluten from my diet. I had no idea that it exacerbated the symptoms so badly. Just thought I'd offer that in case it helps you at all.

Robin

Robin L. said...

um, ok - just read through the comment trail and clearly you've tried eliminating wheat. I'm sorry the diet didn't help you!!

Anonymous said...

I do know of one book about living with Crohn's disease - "Learning Sickness" by Jim Lang. It's more of a memoir/reflection than a guide to combatting the problems. I haven't read it but I read his online columns and he's a very good writer.

Anonymous said...

I had ulcerative colitis from the ages of 11 to 17, when I had my colon removed before going to college (I was constantly in and out of hospitals, so realistically it was surgery or skip college).

I found a few yogic breathing exercises that helped (a little) with pain management.

I wrote an essay a few years ago about what I went through and cried the whole time I was writing. I showed it to my then-boyfriend, and he was so upset that he couldn't even talk about it. It's difficult for people (even those who love us) to understand what such illnesses entail.

I wish you the best in finding a way to balance your disease while forging ahead in your career.

Nee S. said...

The only novel I can think of where waste-management is a pretty big theme is Don DeLillo's _Underworld_, which is a good (if long--800+ pages!) read in its own right.

sex scenes at starbucks said...

My husband has Crohns but after surgery has been in remission for twenty years. (Still some basic symptoms, but no more deteriation or infections.) Recovery is possible and I'm sure you'll find what works for you. Good luck to you.

chicklet said...

To Anonymous, who keeps plugging "The Maker's Diet":

WTF? Just stop! Shut up. TR has lived with her disease for years, and knows what she needs. God.

As if, from her writing, you wouldn't know that she's smart enough to have researched and tried diets that would help her. You plug the book not once, but TWICE. Unbelievable. You're a well-intentioned and yet incredibly annoying nitwit.

The Rejecter said...

Two things about the Maker's Diet:

(1) I don't know what this guy's deal is, but I've been kosher all my life, so I am specifically on the diet that G-d explained in detail in Leviticus. I am on the Maker's Diet, and it's not a particularly healthy one. Lots of starches, noodle puddings, and salt.

(2) Jordan's story is obviously one of major medical malpractice. NOBODY should look like a walking skeleton. Any decent gastroenterologist has a target weight for their patient and a "scare" weight - mine is 115 - when the patient is too thin and gets put on intravenous feeding (TPN) immediately. This type of feeding bypasses the digestive system entirely. He should NOT have been that slim, ever.

Anonymous said...

Does this "Maker's Diet" have anything to do with the "Godly Diet" of bread, bread, bread, and measuring and weighing all your stools? You could tell if it was working because your eyes would shine from within with the Holy Spirit?

(I am NOT making that up. I heard about that one from a co-write bud in PA whose father-in-law had gotten involved in that fad diet. The "Godly Diet" was invented by oneSalem Kirban, a "Christian fiction" writer famous for the novels 666 and 1000, AKA the "Eye of Argon" of Christian End-of-the-World fiction.)

Anonymous said...

I was diagnosed with Crohn's at 17 and am now 28. Although i have learnt to live with the constant stomach cramps and diarrhoea, i am now at the stage in my life, having been recently married, where i would like to start having a family. I have read a lot of articals on the internet about Crohn's and have made an appointment with my gastroenterologist in the next few weeks but i can't seem to find much information regarding pregnancy and Crohn's. Whats going to happen to my body when i go off the drugs that i'm told are potentially harmfull to my baby? (That is if i can even fall pregnant in the first place, god know the amount of drugs and crap that i've taken in the last 11 years!)And don't even get me started on the labour. All that pushing going on down there and i'm bound to have an accident! Does any one know anyone how has Crohn's and been pregnant? Any info would be much appreciated.

Ruthy said...

Hi, I'm sorry to hear you have crohn's. I also have crohn's - have had for 16 years since I was a kid. I think it is important to talk about crohn's and how serious it can be, otherwise how are we going to educate the public? How are we going to raise awareness? Also we need awareness so we can raise money for more research. I agree that it is a difficult condition to talk about with some people, but those who react badly and perhaps make a joke about it, are obviously shallow and are the sort of people who will react badly to all sorts of situations and problems, and frankly, are just not worth bothering with. But there are also probably a good proportion of people who would understand, if we could help them understand. Maybe us fellow sufferers should all stick together and make our voices heard! (BTW: if anyone ever wants to talk about their experiences of crohn's with me then I would be happy to oblige!).

peacecreekjade said...

Could YOU please please please send me the name of you'r NY GI doctor??? Im trying to help my Sister locate a NY GI ,and a good one, MY neice has Crohn's and she's been through the loops far to long with her 2 gi doctor's in NY and my sister is really losing hope! My email is , peacecreek_jade @yahoo.com and I kindly appreciate any input or advice, thank's again. Jade