My Crohn’s Story
I had just turned eighteen and was about to begin my freshman year of college. For many people that summer is more exciting and scary than most; it’s a transition period where we feel as if we’re leaving our childhood behind and setting out into a new part of our lives. But for me this summer was even more troubling.
When you start to notice something disgusting and embarrassing, like blood in the toilet after you go to the bathroom, your first inclination is to ignore it and wait until it goes away. You want to believe it’s something temporary – maybe something minor from rough housing with friends or playing sports.
In those days I never had much pain or discomfort, as the early stages of this progressive disease don’t manifest many of the symptoms that begin to appear as time passes. It was only after the blood kept appearing every few days or weeks for the next few months that I finally decided to mention it to my mom.
She was the only person I ever would’ve felt comfortable enough to bring it up to in the first place. I’m not sure what I would have done otherwise, but I remember being surprised at the alarm with which she reacted. Her concern was strong and immediate, and although I wanted to make myself believe she was overreacting (as many children are wont to do in regard to their parents) I had the uneasy realization at that point that something big was probably going on.
When my mother told me I had Crohn’s disease, I was elated. Not because of that news, but because whatever magical concoction they’d flushed my veins with hours ago was still making me feel very happy. As I sat in the front passenger seat of the family van, half-conscious and coming out of an anesthesia-induced sleep on the way home from the hospital, she relayed what the doctor had told her he’d found during the colonoscopy.
I didn’t want to care. I was too busy watching the motion trails of the other cars on the road, the buildings and signs and people along the streets blurring into intricate patterns in the air as we flew by. Doesn’t matter. I’ll deal with it later, I thought. And deal with it I did.
Over the course of the next few years I underwent a series of periodic tests, treatments and regimens, and experienced a myriad of strange and disconcerting symptoms ranging from severe pain and bleeding to unpredictable days-long episodes of vomiting and sickness. Through diligent study and research I learned more about my body in five years than I believe the average person does in a lifetime.
Theories abound as to the origins of Crohn’s disease and its counterpart, ulcerative colitis, and the list of medications and treatments for both conditions is constantly growing. Still, there is no known cure.
While most doctors and medical experts claim that inflammatory bowel disease is an ailment that goes into and out of a state of remission, one thing I can say for certain is that I have never experienced this. Some days do finish better than others, but not a day goes by where I don’t think about the fact that I have this condition; not a single one passes where my body functions completely as it would were it a normal, unaffected entity.
I find it interesting that few medical professionals seem to believe that diet plays a significant role in the appearance of the disease, as I have found that eating a limited variety of foods helps to alleviate symptoms dramatically. It seems that avoiding processed sugars – especially corn syrup – and other starches and complex carbohydrates dispells most of the pain, discomfort and inflammation I used to have such trouble with. I have been using the Specific Carbohydrate Diet and my condition has improved greatly, but while this is something that has worked for me it may not be the solution for everyone.
Living with Crohns disease is a constant struggle. It is a chronic condition that you must be willing and ready to face at all times, but also I believe it’s important to view it as a boon rather than a burden.
I’ve come to realize that questioning God or the universe or the laws of fate will never get me anywhere, and neither will floundering in self-pity. Each day is a gift, every breath a reminder of the opportunities that life continues to provide to us. Surviving through pain is one of the only ways one can truly appreciate it as much as I have come to.
Comments
Comment from lindsey
Time: February 22, 2010, 10:32 pm
hi can any one help i have been suffering from a servere case for years due to have my next op but my gp is really makin me depressed they dont believe im in as muh pain as i say and they want to stop my meds. i saw my consultant 4 weeks ago and had my results to show how agressive it is but no one will help wat do i do i cant stand this pain its ruining my family life
Comment from C. “Tony” Lamb
Time: March 13, 2010, 2:57 am
I had my first encounter with Crohns when I was 21, I am now 75. My last two colonoscopy’s have shown NO sign of Crohns, in fact one Doctor said it was the best colon he had ever seen. Here are some of the foods that I avoid, Dairy products, Chocolate, Mayonase, Mustard, Pop in general, MSG, Some spicy foods I can tolerate, such as Curry, others I cannot eat without bad side effects. Yes I have had my share of trips to the hospital. then I learned about Digestive enzymes. I take them at every meal and they are like a madgic potion. No gas, no discomfort with bloating etc. Each of us must watch our diet and record those foods that cause us problems, and stay away from them, or find out how much you can tolerate without serious problems. MOST OF ALL GET OFF MEDICATIONS. they hurt rather than help. best of luck.
Comment from Mark
Time: September 29, 2010, 12:59 pm
Many times, this will require the patient to work through the flare-ups. YOU MUST FIND A DR THAT LISTENS TO YOU. I have had 3 surgeries, and numerous trips to the hospital, and have learned one thing only. I have to try and take control of my environment. Diet, stress, exercise. It is difficult to manage many times, but it also helps to have a close confidont wherein you can comiserate.
If your DR doesn’t listen, find one that will
Comment from m-jo
Time: December 5, 2010, 2:23 pm
hi there,,i have been diagnosticated having chron diseased now for 6 or 7 years,,it making me so sick,,now the medecine that they give me dont work anymore,,have to find new one,,they give me metotrexates in niddles,i have to start that ,next week,,the medication i was taking before,,attack my back,,and my pulmonirary system,,that;s the worst,,you take some medecine for fixing one problem,but that gives you more problems with side effects,,i am so discouraged now,,and so mad at chron deasesed,,,lol,,and thats not the only complication that i had and have now,,but its life,,anyone, knows some naturel remedies,,i like to find naturel remedies,,sick of taking pills,, like you can see you are not alone,, take care ,,, xxx
Comment from MJ
Time: March 29, 2011, 12:53 am
Wow, I’m 17 doing a project on Crohn’s and the brutality did not really come alive until I read your website. I’m speechless..I am no longer stressing about getting this project done. I don’t have anything significant to say except I hope that this has never held you back and never will!
Comment from Tyler
Time: May 18, 2011, 2:24 am
Hey, my name is Tyler ( I am a girl ) I am turning 19 years old this summer and I was diagnosed with Crohns Colitus disease when i was 10 years old. I was very young and i had no idea what was happening to my body i was only a kid and i weighed about 80 pounds.. i was very sick and I have probably done every medication in the book from prednizone to azathriapine i mean everything then i tried a medication called remicade which was giving to me through an IV every 4 weeks, it was my only hope before they resulted in surgery. luckily the drug worked and i was in remision for about 5 years, but like all the others i became amune to it and it no longer worked. From there i tried to mantain a good diet and anything that would prevent surgery but i got so sick that it was that or die. I had my surgery done last year and i have been nothing but happy, the emoitons of having a bag is the hardest part of it but with and amazing family and friends you get past it so quickly and all you can think about is how big of a difference it made in my life.. i mean i got my life back and if i knew i could skip all the pain, the drugs, the embarressment i would have done the surgery right away. nobody cares.. really they dont! and if they do there not worth anyones time. i am still in remision to this day and have had no further problems and like i said ive gone through IT ALL so if you ever have questions feel free to ask.
Comment from Dusty
Time: July 12, 2011, 1:08 am
i was diagnosised after i had my first son at age 26. i had been struggling for about 4 years with diahrea and discomfort but ignored it. i was working in the hospital and had rebound pain that sent me to the floor. i was put on asacol but took myself off after about 6 months bc well i hate pills. i had no serious symptoms for about 3 1/2 yrs. almost a yr after my second son was born i landed in the hospital with a flare i was in so much pain i couldnt see straight. after a moltatuid of tests steriods were ordered and a low residue deit. a month later the pain was no better and i had been to the er atleast once a week in tears. i was rushed in to a emergency bowel resection they took 18inches of my small intestion and reconnected but i also had a fistula tunneling into my colon. so they gave me a colostomy to allow the fistula to heal. 7 weeks later i landed back on the surgery table for yet another resection. Where the first connection was another 18inches was taken. this time they didnt reconnect instead they gave me a ilieostomy ( they didnt at that time reconnect the colostomy) so i lived for 6 months with two ostomies. the pain in those six months was horrible the flare never calmmed down i was in and out of the er atleast twice a month. i ended up on so many pain medications i had to have someone else watch me and my kids ( they were 4 and 18months). finally in june they reconnected the two ostmies and gave me a loop ilieostomy( pulled a part of my small intestine out put a slit in it and they stiched it to the outter abdomen) they lasared a few nerves as well bc the first ostomies tramatized a few nerves and caused alot of pain. i had the loop for 3 months and was still in and out of the er with pain and serious weight loss ( 158 to 107 in 3 months) i ended up haveing dump syndrome and malubsorbtion which in turn caused me to go into acute kidney failure. i was put on iv fluids around the clock and sent home for 2 weeks( on the iv fluids) ( had to go home to be there for mfy youngest sons birthday) had the last surgery in september. since then i have been fighting to calm my flare. i have been on every pill out there for this diesease and nothing has worked humaria shots are not effective and finally i was put on remicaide that worked for 4 months now i’m fighting again bc the flares are back. they are increaseing the dose and frequency of the remicaide. ive been told by my all my gi doctors i am a very severe case of chrones. i go to a teaching hospital and the interns fight to be on my case. i have two small childeren and a wonderfully amazing husband. if i cant get the flares under control i wont be able to have anymore children ( the hormone shift can cause a flare) i live with pain daily i work when i can but i cant keep a consistant schedule. im scared of being a burden on my husband and afraid my children will not remember me if ( godd forebid) something happens to me. if anyone out there has any suggestions or advice please feel free to shot me an email nurse_dusty@verizon.net
Comment from Mark
Time: October 8, 2009, 2:56 am
Hang in there buddy!
I was diagnosed 27 years ago. I’ve had good and bad times. But I have a GREAT Dr. We talk we discover the right treatments together. He listens and responds to my issues – THAT IS WHAT A REAL DR DOES!
contact me if you need to vent – sometimes it helps