The faces of Crohn’s disease. (Ben Garvin, Alex di Suvero, Brendan Smialowski and Jeffrey Sauger for The New York Times)Crohn’s disease is one of those illnesses that many people have heard of but often don’t understand.
Caneka McNeil of Washington, D.C., 23, laughs about the time she told her boyfriend that she had Crohn’s. He thought it was a foot disease, she says.
Crohn’s is a chronic illness that causes inflammation of the digestive tract. It most commonly affects the lower part of the small intestine and can cause severe pain, diarrhea and other symptoms.
Today, “Patient Voices,’’ created by my colleague Karen Barrow, gives a voice to Crohn’s disease, featuring the stories of seven men and women who talk about living with the disorder.
As Ms. McNeil says, the symptoms of Crohn’s are not the type of thing you want to chat about with your friends. “You don’t want to talk about the fact that you have to go to the bathroom all the time,” she says. “Or you might have to run in the middle of the mall to the restroom.”
But Norm Calfin, 61, of Ann Arbor, Mich., has been living with Crohn’s for three decades. “I think living with Crohn’s teaches a great lesson to you,” he says. “You can’t fool your body. You have to pay attention to it.”
To hear all the voices of Crohn’s disease, click here. And please, share your comments below.
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Clearly Crohn’s disease is a devastating condition and demands a cure.
May I share some information which I uncovered in the course of researching a condition afflicting me?
There are claims made about the use of “low dose naltrexone” in the treatment of various autoimmune diseases, including Crohn’s disease and MS. In this regard I would urge you to do a search using “LDN”.
One such source of information can be found at: http://www.lowdosenaltrexone.org/ . You should scan down to the boxed section entitled: “First Study of LDN Published in US Medical Journal” This study was carried out by Dr. Jill Smith of the Penn State College of Medicine and contains actual photos showing reduction in inflammation. It is further claimed that 2/3 of the patients in her pilot study went into remission.
This was a pilot study but I understand there is a Phase II trial either planned or going on. (http://www.hmc.psu.edu/colorectal/research/naltrexone.htm)
The underlying drug, naltrexone, was approved years ago for treatment of heroin addiction, but in very low dosages it appears to offer relief for certain medical conditions. There clearly should be more studies, but unfortunately there is no interest by the pharmaceutical companies since the drug is already available and low cost.
It can be prescribed “off label,” but you need to find a doctor who is willing to exercise independent judgment and write a prescription.
Although I am underlining Crohn’s disease, please note that LDN has shown great promise for MS, and there are trials taking place for this as well.
I hope it all works out well.
— Tom HuntingtonI have finally been diagnosed with Crohn’s disease after 10 years of being misdiagnosed. I have been in and out of the hospital like all the rest. Two surgeries, multiple medications, etc. I have always been a big believer in alternative health care so when this happened, I seeked a cure. The best docs at Mt Sinai and all the others seem to think that this can be cured with medicine, but this is a disease caused by the high amount of processed foods that we eat. Thousands of people have changed their conditions based on the findings of Elaine Gotschel, author of “breaking the vicious cycle” who prescribes a strict regimen of fruits, vegetables and meat and completely eliminates processed food. I’ve never felt better. I am off the prednisone, 6MP, Acetol and the others… I refused to try Remidicade or Humera because they are too new and they are made with Rat hormones! Also, i know people that have developed cancer from these drugs. Western trained doctors will not prescribe this kind of treatment but it is the only treatment that works for life.
— JessicaCrohn’s disease is VERY OFTEN a misdiagnosed case of Celiac Disease (allergy to gluten in wheat) or some other food allergy. Stop eating everything but rice, see if the symptoms subside and then gradually add food groups until you figure out which ones give you the problem and stop eating those foods.
— BillyI was diagnosed with Crohn’s Disease in college and therefore had to quickly make several life style changes. Fortunately, my husband has seen all and he and my family are a wonderful support system. I have found that the less processed foods I eat, the better I feel. Sometimes, an attack in unavoidable and is so frustrating- especially in a work environment and always trying to put on a good face and not appear sick, or worse yet, weak. I tried prednisone (for a particularly bad period) and was 6MP for a couple of years. Now I am doing Remicade treatments every 2 months and words cannot express how much better I feel. I am more active, more social and feel healthier and much happier. Remicade does have side effects, but it has worked for me.
— annieI am 66 years young and have had crohn’s for 33 years. Before I was diaginosed, I was told by my
— Lenny Albertdoctors that the symptoms were in my head and that
I needed professional help. Needless to say, after the first surgery that theory was dispelled. Crohn’s, strange to say, has made me a stronger person. I have my ” bad ” moments especially in the
morning, but after that has passed I go to work and
have been successful in my field. I am on remicade
and that has helped me. I was hesitant to go on it
due to the side effects I read about, but it has
made a huge difference in my well being. It’s easy
to say, but the big thing to me is not letting
crohn’s control my life. Do your thing, work, hobbies, family, if you have an ” accident” and I
am sure that has happened to all of us, just keep on doing whatever you were before the incident.
Just live, those who love you will understand, what
we go thru. Each person with crohn’s takes a different approach to living with it. Find your
avenue and live your life.
i have an entire blog about my bowels, stemming from a 15 year battle with Crohn’s. it’s got some adult language so i don’t recommend it for the kiddies, but if you want to approach your poop problems with a sense of humor you can check it out at
http://www.shamelesssh***er.blogspot.com (use your imagination to figure out what the *** is for)
I’m sure those of you with IBD can relate to having to track your personal business in a similar way!
I also highly suggest poopreport.com, another fun page for those of us with bowel problems. If you can’t laugh at your personal suffering what good is it?
— naynayI was diagnosed in high school and the first few years were difficult. Fortunately or unfortunately, my Crohn’s was concentrated in my large intestine (so far, anyway) and a permanent ileostomy has kept me in remission for almost the last 20 years. I always fear the disease coming back. And now that I have re-entered the dating scene, all of the fears about telling other people have resurfaced - fears I thought I left behind in my 20’s. What I take comfort in is that there are so many more treatments available now than when I was young; and I hope people my age are more forgiving of physical differences than I found way back when.
— annabelI have both Crohn’s and Ulcerative Colitis for 20 years now. I had an iliostomy with Jpouch, lived with a bag for 4 months and then was put back together. I have tried remicaid but developed an alergy to it although it did help somewhat. I have been living a drug free relatively better life. My friends are understanding and even though I could do a Michelin guide to bathrooms, at least I have control. I always keep Immodium with me.
— DonnaCrohn’s is not always that bad, not for everybody. I was diagnosed three years ago, and in my case, I have been able to do sports, drink, and go on trips without fear of needing a bathroom in an emergency.
— Jaime SilvelaA year ago, I read the book “Breaking the Vicious Cycle” by Elaine Gottschall, which proposes a “Specific Carbohydrate Diet”. I’ve been following that, and it really helps keeping the symptoms under control.
Yes, you do need to keep an eye on your diet. Stay away from sodas and junk food, that’s a start, then do research to see what triggers you.
has anyone had a terrible time finding a good gasto in NYC? I’ve been through four in the past five years and it astounds me how impersonal and cold these doctors can be. Even more than that, I’m ashamed of their office staffs for being so dismissive towards patients that can be so ill-affected by stress. I also have had an on-going fight regarding generic versions of my medication, Imuran. If I take Azathioprine, the generic of Imuran, I become symptomatic within a week, passing blood and running to the bathroom up to thirty times a day! But, no no no, they’re “exactly the same.” Anyone else find this to be a struggle?
— naynayI have been suffering from Chron’s Disease for years…and confirmed recently…I have tried all the medications prescribed by my Gastroenterologist and NOTHING WORKED! My lower stomach STRETCHES, BURNS, SWELLS and just brings me to a very low level of strenghth. The men’s room and I are best and worst of friends. I wish my car had a men’s room….This has been the roughest stretch of my life…I am scheduled for a bowel resection/ colon surgery in a few weeks…I have found a great team of SURGEONS from CORNELL/WEILL and I am finally feeling I might enjoy some quality of life again. Any comments or support for the surgery procedure….would be appreciated…Good luck to all!!
— delanoThere has been interesting speculation recently concerning a possible relationship between Crohn’s and Johne’s Disease, a disease of cattle and other animals whose symptoms are very similar. The etiologic agent of Johne’s has been shown to be present in dairy products and is also found in the GI tracts of people. I encourage anyone with Crohn’s to look this up and discuss it with their doctor.
— dairyTPP, thanks to you and your colleague for addressing this. Crohn’s and UC don’t get as much attention as some of the “trendier” diseases out there, but they are horrific and life-changing for those who suffer. They are also incurable.
To Jessica and all the other zealots who I’m sure are going to pop up on this thread: Special diets and other non-traditional remedies may work for some people due to the placebo effect or other quirks of your individual biochemistry, but numerous peer-reviewed studies have proven that they are not effective remedies for most sufferers. The drugs you list do have side effects, but they also help many people, and the slight risks of a drug like Asacol are scant when weighed against the effects of untreated Crohn’s or UC: cancer, hemorrhage, toxic megacolon, etc. It’s great that your diet helps you maintain remission, but please don’t act like that is the only way.
— JennieI’m a 26 year old female living with Chrohn’s for the past 7 years. The person in the article who stated that Crohn’s teaches you a great lesson is spot on. The time period in which I was diagnosed was a very stressful time in my life, and even though it hasn’t been proven, I think stress is a huge factor in getting this disease. Over the past seven years I’ve had to control the stress and anxiety in my life, otherwise I’ll be in pain for months. I’ve also had to pay much more attention to what I eat/drink. My Crohn’s is in the lower left side of my large intestine. My doctor gave me steroid enemas which helped a lot, but only because the lower end was affected. Asacol didn’t help me much, but pro-biotics, especially VSL#13 helped a lot. They basically help restore the balance of good bacteria in your digestive tract. I would definitely recommend trying this natural remedy before any of the stronger drugs, which have many side effects.
— GinaI wanted to share information with the audience
I recently uncovered in an article that suggests that the theory of what causes Crohn’s (an overactive immune response) could in fact be wrong. If so, the drugs prescribed to suppress the immune system would actually hinder getting better. The study suggests boosting the immune system through a drug like Viagra would help the immune system to fight off infection and inflammation. I will provide this link: http://news.bbc.co.uk/1/hi/health/4740632.stm
I appreciate the fact that you are sharing information on this disease. My daughter was diagnosed 20 months ago. She is eleven. The pain and suffering are an enormous burden on someone so young, but the emotional toll is, to my mind, the worst of it.
— Barbara HoganMy first wife had Crohn’s disease which was treated at Peter Bent Brigham Hospital in Boston around 1970. The stories are most touching and brought back many memories (good and mostly bad). It took much too long for it to be diagnosed and treated. At least that allowed a return to a semblance of normailty. Reading some of the additional comments was intersting. I sent the link to our children to give tham an idea of what their mother had and if it is inheritable to be aware of its symptons. I was angered by Lenny Alpert’s experience with a doctor that said that “it is in your head”. It may be difficult to pin point Crohn’s but its symptons are apparent and must be attended to. If you, as doctor, can not solve the problem there is referrel.
— leonard kaplanI’ve been living with Crohn’s Disease 40 years. I’ve been on very type, solution of medication, orally, infusion, pill and four bowel rection surgery. We’ve used remicade infusion until a had a reaction. I believe that my positive outlook and faith has played a major part in my survival. I still use the touch and go process when it comes to food. Some foods I just don’t eat, which can cause insult to injury. But most of all I am thankful to have such a wonderful team of doctors who always do their best in providing medical assistance.
— Sylvia A, DavisI am 34 and have had Crohn’s for half of my life now. I am one of those rare cases of someone with Crohn’s who is overweight. Lucky me! I had a resection 11 years ago, they had to take part of my bladder too. Remicade was great until it stopped working. My doctor has me on Cimzia. It’s been about 2 months now and I am feeling a little better, but still not great. I am scared about the future. Can I/should I have kids? Will I always be able to work and keep health insurance? How will I ever pay off these never-ending medical bills?
It was funny to listen to the jello comment - how true! I now hate the stuff and associate it with colonoscopy prep (the worst stuff in the world!). I can’t even drink lemon-lime sodas anymore!
Thanks for helping me to feel not so alone.
— ShannonJessica’s comment is right on the money. I was diagnosed with Crohn’s a little over a year ago and was experiencing a troublesome eye condition called uveitis along with it. Through working with a team of alternative practitioners and a nutritionist I am doing remarkably well without any medication. Pursuing this course of treatment takes a lot of discipline, though.
I believe that Crohn’s is a highly individualized condition with very real causes. Unfortunately, these causes are not easy to pinpoint and probably differ from individual to individual. So, I’m not completely prepared to write off western prescriptions for Crohn’s treatment, but I am rather skeptical. 6 MP left me vomiting uncontrollably after ten days of use. The steroid I was given for my eyes has left me with cataracts at age 27. Additionally, everything that has helped me has involved strengthening my immune system as opposed to suppressing it.
By carefully following a personalized diet (essentially avoiding all processed food, certain oils, certain grains, and refined sugar while also eating many more greens and a smaller amount of meat) and also taking specific supplements to try and restore my body’s healthy balance I have seen marked improvement in my condition. I haven’t had anything like the stomach pain I initially experienced in over eight months. My eyes are in good shape without any drugs that cause harmful side effects. It’s too bad health insurance doesn’t cover such treatment, but hopefully I am on the right path!
Finally it’s curious to note that Crohn’s is so much less prevalent in less developed nations and rural areas. Might pollution be a part of the equation? I think so.
— Tim TobitschCrohn’s is a weird disease. It slaughtered me with its onset at age 25, dropping 1/3 of my body weight in a year plus the misery and utter agony at times. 33 years later, a couple of surgeries, a couple of setbacks and you wouldn’t have a clue I had a problem. No drugs, no diet. Try to keep stress under control. Other than that I have no explanation for why I feel as well as I do. There is hope because this diseases seems to burn itself out in some people. My father and grandfather too. I have it on both sides of my family along with a lot of Manic Depressive issues which makes me wonder if their is some linkage there. I don’t have BiPolar issues but a heck of a lot of my family does. For those of you younger ones suffering out there, I have truly been there and done that and come out the other end (figuratively speaking ;-).
— delI was diagnosed with crohns disease of lower abdomen (illeum and colon) about 10 years ago. The first three four years were difficult with full symptoms of Crohns. Also I did have a fair amount of peri-anal complications related to crohns disease with fistulas in my rectal region. However, I have been asymptomatic for the past four years. I do have mild crohns disease, as revealed by my last colonoscopy in last June. I take probiotics every day (VSL#3) and eat a lot of vegetables and fruits.
-lw02
— limewater02I guess, I can consider myself lucky compared to many others, who live year after year with the disease - often starting while very young. I was 30 before being diagnosed with Crohn’s, and after a year where medicine could not help and after having lost 40 pounds, I had my colon removed. That meant a whole new life!
After having had to bring a map of the nearest toilets, I was free to move around as I pleased.
16 years of remission followed, until a new outbreak, this time in the rectum. Still the medicine did not help, so the rectum was removed. Now I have been in remission for 5 years.
I hardly ever think about Crohn’s and I certainly do not consider myself as being sick. I do have an ileostomi, but I do not consider that as being a problem what so ever.
Regarding the food. I have never seen any evidence, that food affects Crohn’s. As Jennie, I guess that those who do feel a difference does so due to the placebo effect.
As for myself it certainly does not matter, what I eat. During the first outbreak any food had the same effect (it all came up again), and since then I have eaten anything I like.
— Kim LudvigsenAll things considered, I’d rather be in Philadelphia.”
The quote is attributed to a Vanity Fair article about comic actor W.C. Fields and a possible epitaph for his tombstone.
Sufferers from Crohn’s might want to consider a variation on Fields’ suggestion: “All things considered, I’d rather have tennis elbow.”
At least tennis elbow can lead to polite conversation at a business luncheon, in your performance evaluation at work, on a blind date, or even for a visit with Mom. The chance of a discreet discussion of IBD at the dinner table is about the same as Yale University announcing a “Paris Hilton Intellectual Achievement Day.”
Crohn’s disease and ulcerative colitis may not be anyone’s idea of comedy material, but who knows what those scatological guys at “South Park” may come up with next—“Kenny’s got an ostomy—let’s force-feed him some of Chef’s beans and then take him to the jumping castle!”
Ewwwww. If you’ve read this far, you may have concluded that IBD requires a sick sense of humor. Not so. I’ve faced many situations where a funny outlook has helped me get through the crisis du jour.
As an actor and musician, I would sometimes get an IBD attack during the middle of a performance—either when I was on stage or when I’d be behind the piano at some supper club. What to do?
“Excuse me, audience. I’m going to quickly make an exit over here and I’ll be yelling in my lines [or songs] from the bathroom offstage!”
Locked safely in the men’s room of the piano bar, I’ve often tried to think of songs that would be appropriate for someone who suffers from IBD. Hmmm—“I’m Gonna Sit Right Down and Write Myself a Prescription”? “Don’t Be Cruel To My Loosened Stool”? “Fools Rush In (only to find the bathroom door locked)”? “Slip-Sliding Away”? (Insert your own joke here).
Stage productions were no easier. If I felt an attack about to come on, I’d just make my entrance a few lines (or scenes) (or acts) earlier than expected.
Other actor (sotto voce): “What are you doing on stage? That wasn’t your cue!”
Me (sotto voce): “Take your choice. Either I come on now or the audience will have to get up en masse to join me in the restroom when we get to my scene.”
Of course, traveling presents its own set of challenges. Let’s compare exactly how desperate we were to use the facilities available to us. I think my Portuguese ferry boat bathroom probably takes top prize for “toilet that could actually be improved by having someone with Crohn’s Disease miss the commode entirely.”
I was once traveling through the deserts of Jordan. At every small inn or village, there were pictures everywhere of the Jordanian King. I began to feel like an ungrateful guest because I had not thought to bring a gift for His Royal Highness during my trip to the Kingdom.
My guilt was assuaged when we departed Petra by driving on the mountainous back trails. I was able to leave a very personal gift for the King along the side of the road. I’m sure he never received anything else quite like it before or since.
And sports are always fun when the “urge” suddenly strikes. We scuba divers have a saying: “There are two types of divers—those who pee in their wetsuits and those who lie about it.” I think we can safely add a third type of diver, the one with IBD who—like a jet fighter pilot– may choose to leave a trail behind—a la Hansel and Gretel’s cookie crumbs. The fish don’t seem to mind even if the other divers are swimming furiously away toward Guatemala.
Our small satellite Crohns-Colitis Foundation of America chapter in Tucson put out its own modest newsletter for a number of years. Among the names that we tossed around—“The Gut Gazette,” “The Straight Poop” and “The Colon Chronicle” That it finally ended up being called “The Inside Tract” was a testament to the good taste of the local membership and our ability to steal a name from other organizations that also dealt with bodily functions.
Las Vegas all-you-can-eat buffets? Yeah—right. Another helping of cauliflower and broccoli? I think I’ll pass (literally). Be a good boy and finish your dinner. (Mom, don’t talk to me like that. I’m 60 years old!). What’s for dinner tonight? Should I thrown caution to the wind and try the strawberry Ensure or stick to plain old vanilla?
The opportunities for humor and IBD are everywhere if we take the time to look and listen. For example, with the new swallowable colonoscopy camera, we now have the opportunity to post our most personal pictures on-line or to share cell-phone photos of our jejunums with friends and relatives. Perhaps we could mount a collage of our camera’s travels with cute little captions. (“I visited Bob’s ileo-cecal valve and all I got was this lousy hospital gown.”)
All things considered, though, I’d prefer not to have Crohn’s. But, be careful what you wish for. My latest ailment? You guessed it–tennis elbow.
— Bob KovitzThank you for focusing on Crohn’s. I find a piece of my own experience in all of the different comments. While I don’t dwell on my Crohn’s, when I think about it, nearly every aspect of my life is touched by the disease. I loathe the pain, the other symptoms, the limited diet, etc., but I am terrified of losing health insurance.
I know how to deal with a flare-up of Crohn’s but I don’t know what I would do without insurance coverage.
— LisaHi again,
I decided it would be wise to make my Crohn’s blog a little more reader friendly by re-naming it- so instead of “shamelesssh***er” hop on over to http://www.lilcrohnsie.blogspot.com. I’d love to share all your stories there as well, so if you have anything you’d like me to post I’ll gladly do so! I think it’s crazy to feel embarrassed by our unfortunate symptoms. Everybody poops- just some of us more than others!
— naynay