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Crohn's Disease Forum » Your Story » Success Stories » Living with Crohn's for 16 years, here's my story...


04-11-2015, 11:10 PM   #1
Daniel M.
 
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Location: Vancouver, British Columbia
Living with Crohn's for 16 years, here's my story...

THERES SO MUCH I HAVE TO SAY SO I WILL BREAK IT DOWN INTO CHAPTERS.

CHAPTER 1: THE LAST 16 YEARS CRAMMED INTO 2 MINUTES OF READING

Winter of 10th grade I come home from wrestling practice, went to use the bathroom and noticed a red tinge in the bowl once I had finished. I didnt think anything of it and being the ignorant teenager I was, I thought it would fix itself somehow...boy was I wrong. After about 3 weeks I decided to tell my mom because I was starting to basically live in the bathroom and didnt know why. So we end up going to a Specialist, I dont remember if he was a G.I, but if he was...he shouldnt be practicing. He didnt request blood work or a stool test, he simply sticks his finger up my butt and tells me I have hemorrhoids, gave me a prescription for a suppository and told me to follow up in 2 weeks or if things get worse. Me and my mom were fine with that at the time because we didnt have enough experience with this kind of situation, once again little did I know that the doctor could have killed me with his ignorance. When things werent getting better at all a few days later I decided to go online and research hemorrhoids. The symptoms did not fit with what I was experiencing. After another day or 2 I felt very drained, I took a nap and went to bathroom, my mom said "dont flush, I want to see". She was a lot more scared than I was and within 30 mins I was in a hospital gown at Vancouver Childrens Hospital. Thats where I was diagnosed with Ulcerative Colitis(however almost 6 years later I would be re-diagnosed as Crohn's disease) and started up on my daily cycle of 18 pills consisting of Asacol, Prednisone, Imuran, Iron and a few others others I forget. That went on for about 5 years which helped me but I was still miserable. In that time I had started to develop a REAL hemorrhoid which resulted in fistulas which in turn would haunt me for years to come and throughout those years I almost consistently took Ciprofloxacin to subdue the almost immeasurable pain of the fistulas. I gave into the pain once Cipro stopped working and with the help of my G.I and surgeon, opted to get a colostomy and let my fistula riddled rectum rest and possibly heal(my surgeon described it as an ant farm). I knew it wouldnt be a guarantee but I did not want to have the bag forever. That went on for another year and a half before we realized this wasnt working and I had to accept the reality that I would have to poop into a bag for the rest of my life and went in for the Perianal Resection. But I gotta say...Since September.11 2009 My life has been FU#&ING AMAZING!!

CHAPTER 2:MY REACTION

Growing up, I was very big and very strong compared to others. When this illness hit, I was in denial. I knew something was wrong with my body but I didnt take it as seriously as I should have. I was actively participating in amateur wrestling and rugby at the time. I was soo stubborn that when I would fatigue during practice, I would pretend to kneel down and tie my laces so I wouldnt fall over in front of everyone. I didnt want to tell my friends because I was scared to tell a bunch of immature teenagers. I told my best friend at the time and he thought it was funny enough to joke about behind my back. This is how the whole grade found why I went AWAL from school all of a sudden and I did not want to go back. I was scared, lost, confused, in a span of 1 year I was transformed into a different person. Its amazing how many ways a disease can change you. On one hand I learned so much about the digestive system and diet and medications I felt like I was halfway to becoming a specialist myself. On the other hand I developed fears that I had to face every single day....Crohn's was like a bully I couldnt avoid. I accepted horrible solutions like if I wanted to hang out with my friends I'd starve myself so I wouldnt have to worry about messing myself. I remember laying on a hospital bed for the entirety of our graduation week. My once in a lifetime graduation experience was just the first of many things Crohn's robbed from me. I was in a very dark place, became addicted to pain killers lost touch with most of my friends and stopped caring about everything in a bitter way. I used to wonder what my life would have been like if this didnt happen. But eventually I looked up and noticed how deep of a mental hole I dug for myself and that I needed a new outlook on my life instead of dwelling on an uncontrollable past. Today I feel happy and free from any shackles.

CHAPTER 3: LESSONS LEARNED, REGRETS AND ADVICE

Be proactive and learn the illness and body inside and out!! Make sure your doctor is a good doctor not one that will rush you out in 10 minutes or one that pretends to know more than they do. There are numerous ways you can approach managing Crohn's like Western meds, or just say natural or unnatural. I regret letting my need to avoid getting a stoma cloud my best judgment. I allowed myself to suffer longer than I had to, hoping for a miracle that my fistula riddled colon would get better. I endure tons of pain and pain meds which did more damage than anything else. What im trying to say is sit down and really think about the long term effects and posibilties before making a big decision. Its best to talk with your parents or a loved one so they can help you foresee any problems that might arise from a decision youre about to make. If I had known what was to come, I would have opted to have my rectum removed and get my stoma working during the first surgery and that would have spared me from a lot pain and 2 additional surgery's.

Its harder to keep a secret in your stomach than not. If your hiding this kind of illness from someone, STOP! It is not worth the trouble. There were people I didnt tell for years and when I did finally tell them, I regretted not telling them sooner. There were also people who I never spoke to again after I told them. There were even people whos relationship strengthened with me after sharing my story with them because they would end up trusting me more and telling me things that they never told anyone else lol.

For those of you fearing intimacy, it will be a trial in itself. I dont have a clear cut way to tell someone you may be able to get intimate with that you have a bag of poop stuck to your belly. I've been with 2 girls while with stoma neither of them minded(as long as you can keep the smell contained haha) They were more curious with questions than anything else. I find its easier for me to deal by joking about this disease than get mad or offended by it, for instance I yell "NEVER!" when im told told follow my gut...get it? haha ok that was lame but you get the idea. Look at it like this, each time you are with anyone is an opportunity to educate or remind them about this illness. The more aware they are the more comfortable you will feel and if the person likes you back they will be able to look past a medical condition. The first girl I got close to I actually didnt even mention Crohn's and figured that if I told her afterwards theres less chance of rejection because my mentality was that she'll think ok he has a colostomy but it I hardly noticed it, i guess its not so bad. And when it came down to the big moment I put on a little black hernia belt on and said I got injured playing hockey. She had no idea what it was and everything went smoothly(thank god I didnt pass gas). I told her the truth afterwards and she told me that I didnt have to hide that from her. Theres only ignorant people and educated people out there. Stick with the educated ones please, your life will be easier.


Ok people I could go on forever and ever and ever but ill sum it up like this:

- 3 surgeries totalling 23 hours
- 5 straight years of unbearable fistula pain
- 6 months of a pain that to this day no doctor could tell me why it occured but magically stopped
- pills, pills and more pills
- Pyoderma Gangrenosum 2 times on left shin and right ankle, which kept me on crutches for a total of a year and a half (associated complication of Crohns)
- blood and stool tests galore!
- emotional roller coaster
- changing doctors 4 times
- Relationship strain caused by this disease
-1.5 total years of being hospital bed ridden
-3 total years of being home bed ridden

My lowest weight about 8 years ago 5 foot 6 110 pounds

Today I am a 5 foot 7 170 pound bodybuilder, hockey player, hiker and loudmouth Crohnie

I feel like I spent the best years of my youth fighting a war. Ive come out bruised, scarred, some may even say different. But ive also come out stronger, smarter and prepared. IBD can be a wall or a stepping stone, it can build doubt or character. The choice is yours. Take your body back.

Last edited by Daniel M.; 04-12-2015 at 10:38 PM.
04-12-2015, 07:41 AM   #2
hawkeye
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Location: New Brunswick

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Welcome to the forum
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Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
04-13-2015, 10:46 AM   #3
araceli
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Location: El paso, Texas

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Thank you for sharing your story. Welcome to the forum.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
05-07-2015, 02:44 PM   #4
ColorsofHeaven
 
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Location: Green Bay, Wisconsin

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I was diagnosed with Crohns when I was 17 years old and I am now 30 years old. Before I was diagnosed I had many doctors treat me poorly and either accused me of being anorexic, bulimic, or would retest me again and again for thyroid. No one listened and even my parents would call me lazy, because I wanted to sleep all the time. Anyways I could go on and on about the poor treatment I have endured from doctors who didn't care to take the time to truly figure out what was wrong with me. I eventually had three ulcerations and was bleeding internally before I was seen by a doctor who recommended I go in for a colonoscopy. Luckily the usual family DR (who I disliked) was out that day and the new DR was in. He had a brother with Crohns Disease and to this day I still in my mind appreciate all his advice. Back then not a lot of Drs. could give much advice or new much about it. I have had crohns for 13 years and have been in remission. I am not on medications as they make me sicker than the disease. I base it all off my diet, exercise, and probiotics. I do get fatigued and had some issues with yeast through out my system and from time to time I will have some pain, but mostly it has been bearable. I learned about probiotics and proper remission through a patient at the dental practice I worked at. He had had crohns most of his life and advised me about probiotics and what to avoid eating. I thank him as well. I also thank the natural method sites that helped me figure how to rid yeast out of my system as it was a huge part in getting better...I don't however thank the DR that caused it by giving me an antibiotic that specifically stated not to take if you have Crohns (which caused yeast through out my whole system). Find a doctor who listens and truly cares about helping you and be cautious of those who are to sure to quickly and just pump you up with prescriptions that can cause even worse issues. I have had no surgeries other than the original outpatient colonoscopy.
05-07-2015, 05:19 PM   #5
24601
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Thanks for sharing your story! Makes me think I should get around to finally telling my 19 years and counting Crohn's journey! Glad things have been so much better since 2009
05-10-2015, 04:13 PM   #6
David
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Wow, what an inspiring story. Thank you so much for taking the time to share it with us. I wish Success Stories was filled with threads like this
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12-07-2015, 07:34 PM   #7
Forristicat
 
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Location: Canberra, Australian Capital Territory, Australia
I feel like I spent the best years of my youth fighting a war. Ive come out bruised, scarred, some may even say different. But ive also come out stronger, smarter and prepared. IBD can be a wall or a stepping stone, it can build doubt or character. The choice is yours. Take your body back.
Phenomenal quote.

ColorsofHeaven- do you mind expanding on what advice the patient at the dentist practice gave you (in terms of what to eat/what to avoid)
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