 Jon Reiner is the author of 'The Man Who Couldn't Eat,' a memoir of his months spent without ingesting any food - a "nothing by mouth" order - due to a ruptured intestine, a rare complication from Crohn's disease. “Look at the bright side. I won’t have to worry about Don undercooking my burger. Cooking over an open flame is tough to regulate, I grant you, but you’d think that after thirty years he’d have it down.” Artie starts to chuckle, but stops himself awkwardly and swallows the laugh I’d hoped for. I want a comeback from him - “that’s in poor taste,” “you get what you pay for” - a softball I can connect with and knock out of the park, but his eyes are anxious and shift down to the full plate of food on his lap. The conversation stops. It’s hard for my old friend to laugh at a science project. We’re sitting on the screened porch of Don and Tina’s Maine lake house for their annual end-of-summer party, but I’m not eating today. I won’t touch the red hamburgers and the potluck covering the picnic table: fruit salad cradled in a watermelon shell; marinated cucumbers and fiddlehead ferns; cole slaw; pasta salad; baked beans; and my wife’s deviled eggs. For now, I get basic nutrition through a heavy-duty IV line that’s ported into my upper arm and is juiced by a battery-operated food pump 18 hours a day. I lug the motor in a backpack slung over my shoulder, and Artie is trying hard not to stare at the noisy hump. The damn thing whirrs as loud as the speedboats cruising past, an uninvited guest that came empty-handed. You can’t miss it. The menu here is basically the same every year, unaffected by the changing fashion of food, and I love it. Summer isn’t complete without this party, without the red plastic plates loaded with food, without Tina’s funny stars-and-bars sheet cake, before we pack away our bathing suits and go back to reality. Ritually, my mother brings the sugar-and-gold corn, picked this morning and presently going uneaten on Artie’s plate. The sweet taste of mowing through the steamed yellow-and-white kernels defines summer, like swimming in the fresh water we’re overlooking, and there’s an emptiness to being here that I didn’t expect. I depend on the party food to mark the calendar and balance the rhythms we all rely on to steady our lives. I smell the char from the grill and the sulfur of the deviled eggs. With taste taken away, my body has amplified the other senses, and my nose leads the way. Every meal is like walking past a pizza oven when you’re hungry - the aroma is so alluring I’m ready to jump in. Without food, I’m out of sync. So, I talk about it. “Steamed for exactly two minutes. Not a second more.” However, Artie’s still not giving me what I want - the diversion to ditch this 800-pound gorilla in the room for the afternoon. Arthur and I have known each other since college. We’re bluntly honest on the tennis court. He’s a lawyer, and I don’t imagine he shuts down from clients like he’s doing with me. He’s stopped eating. The ear of corn lying across his plate is crying out to be buttered and salted and devoured. Artie’s wife Helen, sitting next to him, and Marcia who’s settled across from me, have stopped eating, too. What an impact I’m having on people. If you consider the stream of chemical mother’s milk pumping into my vein to be food, then I’m the only one eating. It’s absurd. “Artie, please, get to that corn immediately, or I will.” “You sure?” he asks, looking at me uncertainly. His hands are dropped to the sides of the folding chair, away from his plate. “Won’t that make it worse?” You can’t be angry with someone for speaking the truth. He’s trying to spare me more misery, and I’d be a lousy friend if I didn’t appreciate his concern. But, I need to rejoin the living, to be with them, even if it’s only by watching them live. Despite the heavy machinery on my back, I did decide to come to the party today. “Believe me, nothing would make me happier.” That’s a lie, and we both know it. I want to bite into that sweet corn, and the deviled eggs, and even Don’s dangerously undercooked burgers. Soon, I hope. However, if my friends and I can’t share the flavor of the food today, at least we can talk about it. |
  Recent Posts
 |
 |
|
© 2012 Cable News Network. Turner Broadcasting System, Inc. All Rights Reserved.
| Advertise with us | About us | Help | Advertising Practices
I am 31 years old and I have had chrons all my life. The only thing is because I am poor it has gone untreated till about two or thee years now. Its hard to tell with all the seizures from my epilepsy. I still can not get the tests I need because I am still poor.
Reblogged this on The Diarrhea Diaries: Living with Crohn's Disease and commented:
This is how I feel–I would rather watch people enjoy themselves than know I'm the reason they are not eating. Everyone with a Crohnie loved-one, eat up and pretend you're enjoying it!
It's through CrohnsDiaries that I found this account of what you went through. This is educating the public. Very compelling.
This is an interesting article. It was never stated *why* Jon was not able to ingest anything by mouth. I am curious as I have had Crohn's for 30 of my 53 years, and 12 years ago in 1999 my intestines ruptured during a severe attack. 20cm of intestine was removed, including my ileo-cecal valve at the junction of my large and small intestine. My surgeon said that I could begin eating as soon as there was evidence that my digestive system was working- a solid stool. This occurred before I left the hospital 10 days after the surgery. I have been eating pretty much whatever I want since then, although I do avoid large salads and foods with lots of fiber, since things tend to go through me fairly easily.
So my question for Jon is why the nothing by mouth restriction? Were there complications with the surgery? What justification did the surgeon give for nothing by mouth? Was there still active Crohn's following the surgery? I am sorry to hear what you had to go through, as I have been through similar fasting for shorter periods of time and can empathize with living on a liquid diet. Friends and family often say they wish that they didn't have to worry about weight and could be thin like me. My reply is that you don't want the Crohn's that goes along with it.
I'll be praying for you Jon- my faith in God and personal relationship with Jesus Christ have been the only thing that have carried me through 30 years with this disease.
Good questions, all. Read the book and you'll find the answers. Friend in food - JR
http://www.amazon.com/Man-Who-Couldnt-Eat/dp/1439192464/ref=sr_1_1?ie=UTF8&qid=1314627778&sr=8-1
Check out Sungazing man. I know it sounds crazy, but done right it works. Some dude has lived for 15 years with nothing but water and staring at the sun for an hour a day. Half hour after sunrise and half hour while its setting
To the author of this waste of space. Is this supposed to be a cry for attention?
So you went a few a months with out food! This is not news worthy.
My Grandfather lived for 15 years without a stomach. YES... thats right 15 YEARS WITHOUT A STOMACH. He was diagnosed with stomach cancer in 1988. Soon after being diagnosed, this hack of surgeon removed his stomach before consulting with anyone for alternatives. Needless to say he NEVER had another piece of solid food again. Being a slave to his feeding he had to be connected everyday twice a day. Never again having the freedom to lead the carefree life he had when he was much younger. An infection caused by his tube lead to his death. We lost him in 2003.
And I miss him very much every day.
Hello Bob,
As the author of this said "waste of space," I'll gladly respond to your question, "Is this supposed to be a cry for attention?" No, other than in the general sense that every act of communication has bound in it some element of attention-seeking.
Regarding your assertion that "This is not news worthy." I wouldn't argue with that. Personal essays typically don't have much inherent "newsworthiness" unless they're written by a "newsworthy" person, which I am most certainly not. And, yes, compared to your grandfather's truly awful suffering, my episode was a hiccup.
But, I wasn't prompted to write the essay by any of those considerations.
My intent was to write about the role that food plays in people's lives - physically, psychologically, emotionally, socially, culturally - as I understood more acutely once food was removed from my own life. Another reader, Geoffrey, said it quite well in his own post. If you'll notice, I never mention Crohn's Disease in the essay, because the specifics of my illness really have no bearing on what I was trying to say. The fact that so many readers have seized on Crohn's is probably a validation of the editor's decision to include that information in the story's subhead, but it has had the unintended effect of influencing readers in a direction very different from the explicit content of the essay.
i would have liked to hear more on how the party went... how you were able to move past (or not)... and maybe a little about what other impacts you might face in your day to day life. That would have been much more interesting than missing this single party, though you eloquently enough described the issue there.
I just had trouble with how it was written... it was almost unreadable. I had trouble understanding the voice, the conversational sections left me wondering who was speaking and who was being spoken to... I just re-read it and I teach high schoolers who write better than this. I think I'll print it out and have my students dissect it and re-construct it in a style that reads more easily.
To Lauren and your "almost unreadable" criticism, apparently Simon & Schuster, Esquire magazine and other publishers of this author disagree.
Thats sad what happened to your granddad
you dont have to act like an @*sshole,however
I'm 26 yo and I've had Crohn's for almost 4.5 yrs now. Feel like I'm at an AA meeting of sorts. lol Anyways, support is a major factor when it comes to this disease. This is one of the only media outlets I've seen post so many articles relating to Crohn's. So, this is also, one of the only media outlets I've seen this many articles about. I found this article on crohnsforum dot com. It's a site where people all over the world talk about their IBD, or their friends/family's. Please know that you're not alone. <3
What Jon is also getting at is the larger cultural and social role food and eating plays in our lives. Beyond the specifics of his condition this is a meditation on how food and eating connects us and affirms us as friends and family.
If Crohn's disease is an autoimmune dysfunction wherein your own immune system attacks the gastrointestinal tracts, then it can be considered to be similar to asthma and other allergies. Therefore, could the cause and treatment also be similar? For example, let's first look at asthma, the cause of which most experts now believe to be parental sanitary obsessiveness, leading to insufficient immune challenge by soil-borne bacteria. If desensitization therapy by incremental exposure to the known antigen is effective in this case, we should assume that there is also a similarly effective therapy for Crohn's, provided that we can determine exactly what we need to desensitize against.
You may say, how do you explain peanut, soy, wheat, shellfish, nut allergies, or lactose intolerance? How are these related to excessive cleanliness? Simply, anything foreign or unfamiliar can become psychologically linked to fear and result in a hostile response both mentally and physically. That would not be surprising to any criminal psychiatrist who has seen how a single traumatic event in a toddler's life could evolve into a deadly fetish. Asians, the greater part of whom have had no exposure to dairy products, lactose is indeed a foreign antigen. To an overprotected child (especially boys), whose natural curiosity and hunting instinct are suppressed in favor of extreme caution, peanuts represent potential choking danger, and shellfish are frightening to look at anyway.
Could it be then, that Crohn's and all allergies can be treated through desensitizing the patient to fear? How many of you have ever sat in a classroom for an exam with a queasy feeling in your stomach, even to the point of diarrhea? How many of you hate roller coasters, horror movies or job interviews? None of these are life-threatening (except the job interview), yet our adrenal system keeps churning out vile chemicals that rot our intestines as if we were being chased by a serial killer.
I admit that, as a child, I used to live in fear of exams and roller coasters because my parents were academically demanding. I started drinking heavily on my 18th birthday and forgot what it was that my parents taught me to be afraid of. Then, at 51 years of age, I read the above article and I remembered. I was supposed to be afraid of failure. I was supposed to always look behind me to see if anyone was coming up on my heels. Boy, am I glad that I'm a failure!
WTH? You would make a great snake oil salesman.
I lost most of my esophagus due to cancer. I now weigh 130 pounds down from 230 pounds. Eating is very difficult and I don 't have the stomach capacity that I once had. I am, however, fortunate to be alive with having had this terrible type of cancer. Survival rate is very poor.
o'bagel you are a moron.
I have ulcerative colitis which falls under the IBD umbrella. I'm not usually one to comment on posts such as these, but O'Bagel, your comment is so "unscientifically correct" that I had to say something. I suggest you research autoimmune diseases and then research the specific hypersensitivity reactions caused by allergens. Obviously if we could treat IBD with a desenitization process the we treat some allergies, then people (myself included) wouldn't have to take high doses of immunosuppressants and immunomodulators every day. As to the actual topic at hand- I have never been NPO, but I have been on severely restricted diets in the past. It is so true that food plays a huge role in our day to day lives and interactions with the people around us. My roommate in college wouldn't eat dessert after dinner because she knew I couldn't eat it. I told her multiple times that it was ok, but she always felt bad. I'm very thankful that I am currently capable of eating almost anything I want. Hopefully one day science will find a cure for IBD.
Fifteen years ago, I was diagnosed with Crohn's. It hit me in my esophagus, as well as the rest of the digestive track. I have a few family members who have been thru the surgery, resection, colostomy bag route becuase of Crohn's. I was absolutely terrified becuase I knew tha tthe esophaugs is not gernerally considered a removable body part - and what would happen to me if I did not respond to medication, or had a worse relapse.
I was very fortunate. I DID respond to medication, AND I met a gentleman who was severely malnourished due to his Crohn's. This gentleman was on TPN, with the noisy bakpack. We formed a strong friendship, and he showed me life is what you make of it. We went to concerts, rollerblading, movies, parties - all while his backpack was pumping nourishment into him. His attitutde, like the author's, showed me how to live with this condition without constant fear. If I end up sick in the esophagus again, I know that life will not end, and that I can still have as full and as rich of a life as I choose even if I can never "eat" again.
That knowledge has been a God-send, as I am currently in a flare-up, my first one since the initial diagnosis. I know that I will get through this and be stronger than before when I do.
I thank God for articles like this taht educate teh general public and bring somethigns that were only whispered about into a daily conversation. It makes life a lot easier for those of us with restrictions. :)
Thank you for sharing this! I also have Crohns, and sometimes family gatherings are really hard to get through. At mine everyone tries to push food I can't have on me. There is very little I don't have trouble digesting. It is frustrating to say the least, and they really don't understand that most of the time I feel like I am starving to death. I also DO NOT enjoy smelling the food of others, I find it torture, but I lie, smile, and say no worries, I really don't mind.
I don't know how it was for others in this situation, but I actually thought the hardest thing about not eating was learning to eat again. After being fed through an IV for two months, I had no appetite or desire to eat anything. I was 5'9", 85 lbs, and my body had forgotten how to feel hungry. The very smell of food made me sick, and I couldn't keep anything down. I had to work my way back slowly, starting with high-calorie, nutrient-packed protein shakes. You'd think once you got the go-ahead from doctors to start eating again you'd pig out on pizza and cookies, but in reality, the reintroduction of food can be a challenging process.
Man, I am so sorry that happened to you. I'm pretty sure you are much stronger than I would be in that situation. I wonder if a person would be allowed to put food in their mouth for the flavor, but not swallow...on second thought that might be worse. I bet Thanksgiving dinner will be the best meal EVER! Good luck
Dear Jon:
You got a basket of lemons, but you stil managed to make lemonade out of them, even if you couldn't drink it. Great spirit!!!
With a chaser, of course. It goes down smoother.
This has nothing to do with politics. Stop seeking attention on the Internet for your opinions and go get yourself a real life.
I have terrible food allergies. Not as bad as many people, but severe enough that it restricts my life & makes new acquaintances want to offer me all sorts of snake oil. I think one of the worst things that people say is, "Oh, if I had to do that I'd die!" I've taken to replying, "Go right ahead!" It's nice to read comments where we all understand. Best of luck to us all!
Hi all,
It's been inspirational to read everyone's comments. Thank you for the sense of belonging (isn't that strange?) in terms of digestive issues. I've been there for so many years now, and it has taken my life energy and focus for a long time to try to ascertain what is going on! I wanted to mention a book to people that is amazing and has been helping me and so many others: Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. She's amazing. Check it out!
We take many things for granted, especially the ability to just be able to drink a glass of water, just to be able to swallow. My 4 yr old son was in the hospital for 3 months , he was diagnosed with lymphoma and it cause a hole in his esophogus. He could not even swallow his saliva, every second he would be wretching it up. He had an NG tube in one nostril just to keep his espohogus from closing completley shut and another suction tube in his other nostril to suction out his saliva. A PICC line and a G tube. I will never take eating or drinking for granted thats for sure. He would tell me to go to the supermarkert to buy his favorite snacks so that when he could eat again they would be there for him. I would just say "sure of course i will do that" and cry silently because at that time the doctors were telling us that he probably wouldnt eat or drink for 2 years. BUT thanks to many prayers, thanks to GOD, his esophogus healed itself with no medical intervention before he even got started on his chemotherapy. He now eats EVERYTHING and ALL THE TIME!!! :) He is a happy healthy child.
I'm glad your son is better, I know how horrible is to have an ailing son. But I think you should be thanking the phisicians and their science for saving your son. After all, God could have prevented your son from going through any suffering, if only He wanted (or existed).
I agree with that Herbys. So many times in stories like this, I see people telling heart-wrenching stories about illnesses and disasters and all the while they just thank what they believe to be their creator for not making it worse. It's like thanking your "master" for not beating you harder. Spirituality is one thing, but actually thanking a god for nothing is just insane to the highest degree. And not thanking those who actually DID do something is even worse. Science, man and what we've learned are to thank for progress.
people blame God for all the bad things that happen-they happen for a reason-for us to learn not to take anything for granted-to enjoy and appreciate all we have NOW and live each day to the fullest–we know we are here for just a short time-whether or not its God, we all die-and we all have bad things happen to us-its just the way it is-we seem to only blame God for the bad stuff and forget about all the good things we take for granted–when good things happen we take it for granted – i have learned to be grateful for each morning i wake up-and pray that the day will go smoothly and if it doesnt accept that it was "one of those days" and move on. life is a never ending battle – its up to us to try to make it a little better-make changes in our lives, it feels good, make a difference, make it right.
Herbys, why do you have to go bashing this woman's faith and positive turn of events due to your own personal beliefs, which, by the way, you are just as entitled to have as she is. Has it ever occurred to you that God is not simply a big being in the sky playing mankind as if it is a video game, merely doling out good and bad situations as he pleases? God gives us intelligence, strength, wisdom, and most of all, free choice...the scientists have the intelligence, research skills, etc. to develop more and more advanced treatments, it is every patients choice as to what treatment path they take. This is God working also, giving us options and allowing us to take the ones that we see fit.
I have had UC for almost 10 years. I don't believe or expect that God should or will magically come down and heal me. But I believe that through him I have had the strength to deal with it and the resources to find the best care (good doctors and Remicade!). Even more, I don't blame God for giving this to me in the first place. As anyone with IBD can relate to, it is the single best and worst thing that has happened to me. I am a better, more aware, more patient, more appreciative person because of it, and I appreciate that the extremely difficult journey and intense pain that I have been through has been a part of that journey.
Please be EXTREMELY careful about sanitation while using the IV for nutrition of this type. My father had the same type of IV after pancreatic cancer surgery. However, he developed an infection at the IV port which, within a matter of hours, turned into a raging staff infection which took his life in a day.
Were you ever misdiagnosed, and they told you that you had gastroparesis? Asking because my daughter has been told she has that, but there are days where she is so sick she can't work.
Should have added that we are now wondering if whatever she has, she has had since she was little and we just never knew, and it really got worse this past spring. Waiting to go to the gastroenterologist to find out for sure what it is. All we know for sure is that she does not have Celiac disease.
JR,
I was eventually diagnosed with Crohn's when I was 20, and that was after three years of illness and several other false diagnosis. Because of the number and evasiveness of the symptoms, Crohn's (like many autoimmune diseases) can be difficult to pinpoint.
Thanks for replying so quickly. We will wait and see what the doctor says, hopefully she won't lose anymore weight!
I have gastroparsis and after 3 years I'm healthy most days...but for the first two years I threw up almost everyday, and there would be days I didn't eat anything but could only drink ensure. Even now there are certain foods I can't eat, but I've learned to learn with it and have more good days than bad, but it's not easy and I could wake up any day and be back to square one. Keep your head up, hopefully she'll beable to regulate it.
It is comforting to know that someone else has the same thing, and has been able to learn to live with it. She drinks a lot of powerade, but can't stand the taste of Ensure, Boost or any of the other supplement drinks. She also has good days, but then just when she thinks it is going well, she has two really really bad days. Thanks for the encouraging words – I will share them with her.
Thank you to all the readers who've responded so personally and profoundly to my essay. You may be interested in reading my memoir, The Man Who Couldn't Eat, to see how the story turned out, for now. - Jon Reiner
Jon, thanks for sharing your story and helping to spread awareness of Crohn's disease. I was diagnosed in 1997, have had quite a ride with it and am today working on a documentary film about patients who have healed from it using alternative approaches. Not more than 30 min ago I was logging footage of a woman talking about how difficult TPN was for her. She eventually found healing through the Gut and Psychology Syndrome diet by Dr. Natasha Campbell-McBride.
Good luck with the book and spreading awareness. Crohn's is a hidden and growing problem all over the world.
I see much suffering in the forum here. I do not suffer. But I do want to say this.
Your suffering is a learning to us all. I hope you document every single thing you are going through in video, photos and words. We need to learn from your suffering so that we can develop innovations that may help others in the future 100s of years from now....The path to the future is paved by pain and suffering....I salute you and all of those who suffer to illuminate the path to the future for all...
I've got Crohn's as well. Two operations in the last decade with another one scheduled for next month. good times!
then end of june i developed insomnia. the er gave me something called trazodone. it gave me horrible arrythmias, and i couldnt sleep at night, or move at all in the day, or eat anything. one little bite of something, and i would feel like i was gonna collapse. i lost almost 20 lbs in july, from about 185 to 165. it's horrible to not being able to eat, slowly dieing. i'm thinking of suing this trazodone maker. i can't beleive they make this stuff that gives people heart and digestive problems. since i've been off it i'm able to eat again, but its slow going trying to regain the weight
instead of taking the 'merican way out and suing every one perhaps you and your doctor should sit down and rethink the treatment, perhaps a new medical opinion would help but another lawsuit in this litigious nation benefits no one but the lawyers . . . and you still be ill.
My son has Crohn's. He was diagnosed at 17. He came home for the summer from college weighing only 90 pounds. He was simply skin and bones, it was horrible! He was ill all the time, he could hardly eat and what he did manage to eat caused him horrible pain.
He ended up in the hospital a few weeks after coming home with an intestinal blockage. My son nearly died. No parent should ever have to see their child with tubes coming in and tubes going out not to mention the agony that was written all over his face. He lost 12 inches of intestine, part of his colon and his apendix. The doctor saved his life. The doctor gave him back his life.
It's been three years. He's healthy and happy! There is a 50% it will come back...we hold on to the 50% that it won't!
He's one of the lucky ones. I don't think he realizes just how lucky he is or how close he came.
Before you have a go at me for my name, know this. His fraternity brothers gave him this nickname, he carved it into the door to his room!
I truly feel for the author. Two years ago I began suffering from massive bouts of angioedema and found that I'm allergic to most every food...eleven pages of basics that make up 99% of our diet will send me into anaphalxis. I was switched to a canned food formula at 37 and now drink all of my unflavored meals. After the tears and horrible depression came the incredible overwhelming need to chew anything. You never know how ingrained eating a meal is until you aren't allowed to. The desire is an intense and constant companion that has to be overcome. I've only recently been prescribed chocolate flavored replacement and I can freeze it for an ice cream like treat and I can't express how WONDERFUL it is just to have a taste to my day. My heart and prayers go out to all who are dealing with the loss of a food filled life. It doesn't really get better, you just learn to deal with it better.
I am so glad stories like this are making digestive disorders less taboo. I had what my doctors referred to as "the worst case of Ulcerative Colitis (very similar to Crohn's) in documented history," and I almost died at age 21 from disease-related blood loss. I had my colon removed in an emergency surgery and was not able to eat for the six weeks I was plagued by severe surgical complications.
For nearly 10 years prior to my surgery, I was a sad, sick teenager keeping my abdominal pain and other symptoms secret. I knew I was sick, but I was too embarrassed and ashamed to do anything about it. I had never heard of diseases like Crohn's and Ulcerative Colitis, and I didn't want to admit I had digestive problems because I didn't see them proper to talk about. I am so grateful for the near-normal life I lead now, but I'm saddened when I think about the teenage years I lost to pain and depression from keeping my symptoms private and not getting help. Thanks to Jon and other patients for getting the word out there about Crohn's and Colitis. I hope other sick kids are inspired to get help early so they may lead full, happy lives.
I never knew so many people had it this bad. Even though the stories are very sad you guys are inspirational. I was one of those people Been there is talking about who says they'd probably starve if left alone in the woods, but now that I've heard such courageous stories I'll always keep you guys in mind. If you can go months, years, even the rest of your life without enjoying food, I know that whatever roadblocks I find along the way won't compare to what you guys face on a constant basis. Thanks for all the stories.
I have had Crohn's for 20 years. I have to say that this disease is the worst life alternating illness that I can think of. I have had every operation and colostomy bag for 6 years. I hope this guy will be able to have a Happy Thanksgiving by eating real food.
I have not been able to eat since October 16, 2002. There is no way I will be able to eat again unless they come up with a neck transplant. My last meal was a can of Progresso Chicken Noodle Soup, 2 pieces of wheat berry toast and a glass of water. I will never forget it. You see I had throat cancer and if you saw me you would think I look normal and I do. However, I do have a slight speech problem and a numb neck. I was 50 years old when I found out after my surgery that I wouldn't be able to eat. If I live to my 80's and my doctors say except that I can't eat, I could certainly live that long, it would be 30 years of not being able to eat. It's a very, very hard life, especially during the holidays.
My heart goes out to you. My boyfriend has Lyme Disease but looks to someone who didn't spend a lot of time with him, to be the healthiest person alive – a little overworked and a maybe too slender, but still very healthy looking. He has had an awful time being sick after meals and having his joints always hurt. It is an entirely different thing to be very sick but APPEAR
...fine. (sorry about the break in my paragraph.)
Have your other senses increased now that you can't use taste, so much?
My other senses haven't increased. In fact one problem I didn't mention before is that I have a terrible time with mucus. It is constantly a battle to rinse out my mouth, brush my teeth, take some medicine so I can lessen the affect of the mucus in my mouth. One good thing is once my mouth is clear of mucus, I can taste food, I just can't swallow it. That fact alone limits me in that I don't want to taste something and bring back memories of that taste I had in my pre cancer days. Some things are better if just left in the past.
Wow. I am so sorry. Your suffering is a learning to us all. I hope you document every single thing you are going through in video, photos and words. We need to learn from your suffering so that we can develop innovations that may help others in the future 100s of years from now....The path to the future is paved by pain and suffering....I salute you and all of those who suffer to illuminate the path to the future for all...
I had the same thing happen. No food or water by mouth for at least 4 months. Had the iv in for 4-5 months. I also had a ruptured intestine and can honestly say nothing took the pain away for the first three months. I was in the hospital for almost a month. Really should have a support group for people like us. I thought I was going crazy. After 7 months I can eat again. Lets just say I now pity children that have nothing to eat. Absolutely unacceptable.
Oooo that would be terrible. Oh my. I can't imagine not being able to eat.
I hope all goes well for you. I too have a dietary restriction at 19, but its not a sever nor as strict. I hope you will be up to Thanksgiving and all that lovely turkey and stuffing.
Much support and Happy Thanksgiving.
My late father had Crohn's disease for over half of his life. He had his large intestine removed, and several surgeries to remove parts of his small intestine over the years. It is good to see this awful disease is getting more exposure in the media. I used to think it was not very common.
I feel incredibly ashamed of myself. Just today, before I read this article, I found out I had to stop drinking coffee, my one true addiction, due to a bladder condition. I feel badly that I took the news so hard and was so depressed and angry. I can eat 99% of foods and maybe go back to one cup of coffee per day. I feel like an idiot.
Don't feel badly. It's all relative. I have learned not to take any flavor for granted since my throat cancer/radiation, so even a chocolate flavored Ensure tastes great to me. If I had been told years ago that I couldn't have chocolate again I, too, would have upset and angry, but not being able to eat anything has put things into perspective for me. I hope you can return to your coffee soon.
I hope you get better.
Paris,
There's no reason to feel ashamed. Having to suddenly live without something you love, enjoy, and rely on, is a serious challenge in your life. What's living without food for a few months compared to some of the more serious deprivations the readers responding to my essay have endured? It's all relative.
Kind wishes,
Jon Reiner
A friendly neighboor has crone disease. I did not know she was healthy and was in martial arts.
People NEED to be compassionate to some one who has this disease. I imagine it sucks the life out of you. I can imagine the sorrow and misery of not having to eat, which everyone on of us take for granted.
There are some real jerks in life, who need to work at a hospital and understand, each day is a gift to live..and live with good health.
If some one cares to explain to the world in a brief summery what is crones disease, it would be helpful for all of those who do not know what the disease is.
Nice to see how people like to jump at each others throats. Crohns is a horrible disease and it can be life threatening. It's not some joke and it's not some man made conspiracy. It is an auto immune condition but they are not sure of the exact cause. I have tried all of the home remedies and natural cures and treatments and none of them have worked for me, but that doesn't mean you shouldn't try it yourself, but that also does not mean that medications are some great conspiracy either. I have been on remicaid, humira, Cimzia, prednisone, methotrexate and manynother drugs and some have worked others have not, but most of the drug manufactures have provided medication even when I could not afford it. The only bad drug I have experienced is remicaid and that was more the doctors fault than anyone. The point is, this is a horrible disease and no one deserves it. So we don't need the rash judgements and attacks and attempts at making Crohn's or any other serious illness look like the minor flu and we shouldn't judge others for trying any treatment they feel the need to try. We should be supporting each other which is what this persons trying to do, not taking shots at one another making each other feel lowervthan they may already feel. Do people really take that much enjoyment in putting others down?
I read an article not long ago about a guy that had a lot of success treating his Crohn's with harmless intestinal worms. That's right. Seems there's evidence coming out now that suggests a number of these auto-immune diseases are caused by our too-clean environment. This guy had to find the worms himself, purify them, and ingest them. His doctor wouldn't help. He said it works for great once the little buggers are at home, and then he takes another dose when symptoms start to come back. His source for the information is somewhere out online.
Yes , those anti- bacterial soaps are doing more harm than good ...
It was actually on cnn.com too, though I don't think I'd recommend this to anyone. I don't have the disease so I cannot imagine what they are going through, but it seems like suggesting they take parasites might be bad advice.
.....Why not? Maggot therapy is coming back......
Not that I'd try either, mind you....but.... ;)
I went through this situation for a while with Crohn's as well. Just be sure that your first meals are yogurt (Greek or Bulgarian yogurt, not sugary Yoplait or Dannon) and big doses of varied probiotics. Otherwise, that lovely first meal you have dreamed of will come right back up. You must recolonize your digestive track for it to work. Also probiotics is one of the natural strategies that actually works to heal Crohn's better than immune suppressing drugs. Check out a website for Great Taste No Pain and follow the recommendations. I had a colectomy and haven't has Crohn's in 16 years. Best of luck! You can do it!
I've had Crohn's for 30+ years and has been through everything (steroids, Remicade, resection surgeries, temporary colostomy & ileostomy, and yes – TPN for several months as well). It's an awful disease to live with and no one who hasn't lived through it will ever understand what it's like to live with these restrictions. Nor will anyone understand that whatever food trend may be popular for the healthy population may NOT be a good idea for us.
Most of us can't touch vegetables or fruits without risking ending up at the ER. Most of us can't eat roughage.
The sweet smell of corn is wonderful, but knowing that one bite of it will throw me into three days of deblitating cramps and potential blockage prevents me from touching it.
Jon, hang in there. You CAN get into remission. After not eating for 4 months, I slowly got back to the real world, and I've been medication free for 7 years. Life is wonderful now.
Crohn's is a horrible disease. A friend of the family had all but six inches of her intestines removed and had ulcers from her esophagus all down her digestive tract. She was down to 68 pounds at 5' 7" and at several points it looked like she was going to die. She now has a family and is 104 pounds, but she can't eat any sugars, acidic foods, meat, dairy, eggs, spices or fried foods and she has to have a colostomy bag since she doesn't have her intestines any longer.
I had a bowel preforation last fall and didn't eat for four months. I stayed in the hospital for four and a half months, being fed intravenously with TVP (my husband called it my beer because that was the color). The Lord brought me through it. I didn't care about food during those months. But I'm making up for it now. I was allowed to drink but I had an NG tube and it pretty much went in and out but I felt like I was doing something. I am blessed to be alive. I wish you the best. My ordeal is over, I don't have a chronic disease.
I too have a permanent feeding tube, due to radiation treatments for throat cancer 7 years ago and can only take sips of water through my mouth. I've had the feeding tube for a few months now, and it is really awkward to feed myself around other people. I sit at my desk with a syringe and inject whatever I have concocted in my 2HP industrial blender. I refuse to be told that I can only have Ensure or canned nutrition. I found that by going online, I was able to talk with others in my situation, and learned a lot from them. It sure does make big food holidays like memorial Day or Thanksgiving into a very difficult situation. For others on my situation, I recommend using the internet as a resource, and getting involved with throat cancer surviors groups. Good luck to everyone. :-)
My husband went thru something very similar and now heads up a local head & neck cancer support group. I'll pass your words of encouragement & wisdom along to him for his next meeting. Thank you for sharing and best of luck to you.
To the people who have contributed to these boards, thank you. I am absolutely awed by your honesty and courage. I was clueless about Chrohn's (and the other conditions written of here) until I read these messages. I am not religious, but I desperately hope for a medical breakthrough. I have taken my ability to eat for granted, and I never will again.
Sorry for the misspelling - Crohn's
Jon is actually eating the most healthy diet of all: Nothing. Think about it. NOTHING does not contain fat and cholesterol. NOTHING does not cause heart disease. NOTHING does not cause cancer. NOTHING does not bring obesity. NOTHING does not trigger any of these radiation-induced food allergies. NOTHING is good for you anymore!
He's lucky if it's just temporary. I was lucky too. It was miserable being NPO.
Shove your selfish politics. Asshole.
6 yrs ago my husband was diagnosed with head and neck cancer, chemo and radiation left him not able to eat. Its something we all take for granted as we do walking, using are hands, etc. It has changed his life and his family. We tried to have holidays its just too hard, watching him suffer with everyone enjoying food. food is social. So we do w/o food most of time and eat ice cream its all he can eat. So enjoy life and food for as long as you can. I definitely related to this story.
So sorry your family is going through this. Thanks for sharing.
to – not do. typo
No tracie, you eat yours.
She's talking about his dietary restriction, not his internals. You should read a comment thoroughly before lecturing.
Chris, you are wrong, this story has nothing to do with any President. Now correct yourself, NOW.
As someone who also suffers from Crohn's, back in my 20's I needed a bowel resection, but I was so malnourished that I wouldn't survive the operation. I couldn't eat anything because my small intestine was closed up to width of a pencil, and so for two weeks they needed to "build me up" with an IV filled with fat and vitamins. Now, I was allowed Jell-O and Chicken Broth, so I had it a "bit" better than you, but as someone who is a picky eater, I was willing to eat deep fried goat eyeballs with a side of caterpillar. Anyone who says "I'd never eat bugs" if they were lost in the forest, has never gone a week or two without eating. All the best!! I'm 183 pounds today (I was 119 after surgery). Medicine is improving.
I read that we need to add more fermented foods to our diets to AVOID crohns disease. Fermented foods like good saurkraut, keefer, and a variety of other fermented foods that one can even make themselves. Since crohns is becoming more common, I think it's time to add some of those foods.
Since stupidity is becoming more common, I think we need to add Russian Roulette to our daily regimen. Get up, shower, brush your teeth, put a gun to your temple, shave, dress yourself, have breakfast and go to work...
How's that work? You can do it yourself too.
What the...?
Was there any point to that tirade?
Bitter much?
May, any chance you could explain that better, I've never heard of fermented foods being more healthy in this way.
Check out the GAPS diet for more information or Wild Fermentation. Fermentation was how foods were often preserved for later use prior to refrigeration and canning. The process inoculates foods with good bacteria that help aid digestion and balance and enhance the immune system.
I come from a family with a history of digestive disorders and since adding fermented foods (kombucha, home made yogurt, kraut, kvass, etc.) I have been able to overcome many of the digestive issues that have plagued me for most of my life.
My younger brother passed away this year after 15 years of tube and IV feedings due to gastroparesis. He hadn't been able to enjoy a meal in more than 10 years.
Be thankful and grateful for every day, I know I am.
So, are you saying that it is Jon's fault that he developed the disease - because he didn't eat enough sauerkraut?
Or are you just trying to encourage a man who has clearly stated that he *cannot* eat to go against medical advice and start eating fermented foods?
I really appreciate this article. My sister in law just found out she is in a similar situation. She had cancer surgury and has been fighting a fluid build up and come to find out it is a hole in her intestine. She has to go on a no food no drink diet for eight months and live from the heavy IV solution.
I will pass along this story of hope to cheer my sister in law up a bit. She is not alone in the world.
I have lived with Crohn's for 6 years or should I say I am trying to live with it. Crohns is a horrible disease. The pain is horrible and the side effects or the massive doses of medications I have to take to keep my intestines from rupturing is even worse. I had to give up my career and My condition has eaten away my families savings. I usually go to the ER 4 times a month and spend days at a time so sick I can not get out of bed. The pain is excruciating. Before I was diagnosed I had never even heard of Crohn's. I feel for everyone who must deal with this horrible disease.
I have crohns, celiac, and lactose intolerant. I just had surgery because a abcess in my colon from eating good food. Now I have to be on a strict diet. The specialist don't know what kind of diet. All they tell me is to write a journal and go to a support group. I've been having problems for a very long time and I'm only 33. I believe it is all the foods that they have these days with all the perservatives and saturated fat. They are slowly killing our digestive system. When you tell you specialst you want to go alternative health and take yoga. They get angry because they want you on the Medication. The other alternative healthy herbs not marjunana but herbs and organic food is not FDA inspected. Because FDA is only worried about man made drugs that they can make money off of. See a India doctor or alternative doctor.
are you single by any chance?
Irish – Yes, I am single. If you are interested, drop me a line on my facebook account....
Totally !!!!! My number is 482-234-1231. So happy to know someone who can see the bright side of life in though they are suffering...i love your personality !!
Thanks for the compliments. Thats sweet of you. Ill call you tonight :)
Wow, really? You just give your number out like that on a board that could get thousands of views?
It's a fake number genius.
Do you still have to poop?
yes just not as much
No, do you?
colostomy bag
Yes, I do, but it takes large doses of fiber in water to make it happen!
I know what he's going through. I haven't eaten any solid food since mt radiation treatments began back in February for throat cancer. The radiation killed my salivary glands and my taste buds. No saliva-no swallowing real food. I survived for a while with a feeding tube and now drink Ensure to survive. I long for the day I can eat real food with my wife. She feels bad about eating in front of me but I tell her that it's ok as long as she lets me smell the food. I initially lost 40 lbs. but have gained some of that back. I'm hoping that Thanksgiving will be the start of eating again for me too.
I'm sorry to hear that. My aunt was not able to eat solid foods during treatment for similiar treatment. It broke my heart but I'm glad to hear that you have the prospects of eating again (sometime) soon. Best wishes, my friend.
Richard, I went through radiation for oral cancer earlier this year – don't worry, the taste buds will come back! I noticed that I was gradually able to taste unexpected things, like the coconut in a coconut/avocado smoothie, or turnip soup. Now I can taste almost everything (though I can't do spicy food, which I used to love). Salivary glands seem to be taking a little longer, so I carry a water bottle everywhere and rinse with a dry-mouth mouthwash.
I hope your Thanksgiving is delicious!
It's Obama's fault
Obviously, just like everything else. The man has such incredible power, he affects everything, he's amazing. Did you know that Obama was behind 9-11 and Pearl Harbor. They have even linked him to being involved with working with Lincoln to start the civil war, by starting a rumor about something called slavery, but he was really just trying to smash state rights. There is also conclusive proof that he has caused Katrina and maybe even Irene. They say he might be using Lien technology they recovered at Roswell. I believe so, because how else can we explain the time travel and weather control. Or maybe he is the anti-Christ, but we all know that Bush was the anti-Christ or was that Clinton?
No, it is your fault.
yessssssssssssssssssssssssssssss sir
This, again, has nothing to do with politics of any kind. I think some people need to go back to school to get reading comprehension skills. Stop seeking attention on the Internet for your opinions and go get yourself a real life.
What a strange restriction. I hope that your body adjusts to digest solid food long before Thanksgiving so that you can properly enjoy!
That's nothing.
I had cancer and lost my ability to swallow anything, even water. I have a feeding tube in the front of my belly and pour all nutrition (canned formulas), including water into my feeding tube. This is how I will be for the rest of my life. Talk about missing food, he has no idea.
I lost my dad to esphogial cancer. He could not swallow anything and they had to install a feeding tube, but by then the cancer had already spread. I am so sorry that you have to go through this and I hope that you are able to beat this. No one deserves this. It's a horrible form of cancer. Hang in there and may God bless you.
Lee, I'm sorry you're going through this. Are you allowed a blended diet? My daughter is tube-fed a combo of formula and purees, and she has much better energy and just plain feels better than with strictly formula. I've heard from others who are missing foods that you can also still taste somewhat that way.
Wow. It's not a contest, you know.
It's not a restriction, his intestine is ruptured! Please read the article if you're going to make the effort to comment!
I meant that he is restricted from eating on doctors orders. I did read the article, thank you.
You assumed the wrong definition of restriction. Restriction as in not permitted do eat – not restriction as in blockage in digestive tract.
"CJ":
She's talking about his dietary restriction, not his internals. You should read a comment thoroughly before lecturing.
I was going to pounce all over you, CJ, for your lack of reading comprehension, but it looks like others have taken care of you.
Paragraph Four, Opening sentence ......."On doctor’s orders, I’ve been restricted to “Nothing By Mouth”"....
Please read the article if you're going to make the effort to comment!
Stupid is as stupid does.