I am 19 and I have Crohn's Disease-maybe this will help!!!!!

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Gfrazer
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/24/2009 3:35 AM (GMT -7)   
If you have any questions let me know!!!!

Hello all this is my first time posting in this forum I am 19 and I have Crohn's Disease.

It started off with stomach pains, could not eat, sleep, or think clearly, ultimately I began to vomit. I was even having trouble walking and for those of you who have this, you understand what I mean. My parents, at first, thought I had a common sickness and they thought it would pass. It did not pass. It was time to go to the hospital and learn of what was going on and if there was a easy treatment. After many tests the symptoms that I were showing the diagnosis came to Crohn's Colitis, more commonly known as Crohn's disease. I have been through Prednisone, Azathioprine, Pentasa (Azacol), and a list of others. There was a time when I was taking 12 pills a day these would work, however as you all may know they come with side effects, especially the prednisone. Day after Day, month after month, year after year I had trouble eating and gaining weight because of the stomach pains and loss of appetite. In the course of the nine years I have been hospitalized five times. Hope seemed lost.

My parents, and grandmother played a very important role in everything that went on, they did what they felt they could do best, support me, comfort me, and read. They read as much as they could on Crohn's disease, finding out everything they could via the internet, books. After much research they realized some things that would help in my diet. Understanding that Crohn's is a digestive disorder, my parents found that in my diet i should not consume any beef as that is hard to digest, later they found that drinking cow's milk may trigger stomach pains causing me to come out of remission I started drinking soy milk, which is a lot healthier. It was like a chain of unfortunate events as soon as we figured out something that would work something else bad would happen. I started having arthritic pains, these pains were definitely the most unbearable when walking and writing. It made life very difficult. I had inflammation in my knees, ankles, knuckles, fingers, toes. There were times when I would be sleeping and wake up the next night with what felt like a broken toe, the pain and agony was ridiculous.

After much research my parents came along a treatment that was very premature, but it had hope and great results for people. This treatment known as Remicade helps a multitude of inflammatory disorders including Crohn's and I have seen significant results from it. It is done intravenously every 6 weeks, and keeps crohn's in remission along with the maintenence of your other medication prescribed by your doctor, it also replaces others. Over the course of the nine years I have had Crohn's nothing has worked better.

With the treatment of Remicade at 17 and a half, or a senior in high school my appetite came back and my confidence, the results put me back on track. Carpe Diem, seize the day. I took this opportunity to focus on my diet and my appearance. I started working out and attained great results, I am 6'2.5", and feeling great. Because I am doing so well currently, my doctor has completely taken me off all my medication and I am not taking anything now, not even the Remicade. I have been off medication for the past 7 months strong.

I do not want this to drag on anymore. I just want you all to know that this is not an advertisement, I just want you to know that I want you all to know there is hope and when you feel under the weather just think that it will get better.

Please leave feedback and let me what your thoughts are, I am open to any questions you may have about what I did to get better, and my rituals when I was not feeling good.

There were nights when I sat alone asking myself, why? why is this happening to me?

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 4/24/2009 4:22 AM (GMT -7)   
Nice right up and welcome.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/24/2009 4:57 AM (GMT -7)   
I wish I could tolerate remi.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/24/2009 6:29 AM (GMT -7)   
I am glad the Remi works well for you. Luckily I am easily maintained with just my Asacol.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 4/24/2009 7:27 AM (GMT -7)   
Good to hear you found the right treatment for you. I like being on humira myself. I probably will always stay on some sort of maintenance medication though :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 4/24/2009 11:04 AM (GMT -7)   
Glad you found some relief.

Welcome to the forums, and keep up the good work on the positive attitude. smilewinkgrin
CD dx @ 13 (1987)
Prednisone 10mg every other day
Phenergen PRN
Celexa 20mg day
Zantac 300 - Twice Day
Pain Meds
Vitamins


SherryAnn
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 4/24/2009 4:05 PM (GMT -7)   
I'm so glad to hear that you are feeling great. Our daughter was diagnosed with Crohn's in her junior year of college. When she started having symptoms, we took her to a digestive clinic who told her she had acid reflux and our daughter knew it wasn't correct but they just held on to their diagnosis that she had acid reflux. Eventually, she had severe pain in her abdomen and we took her to the hospital and they found a fistula connected from her intestine to her abdomen. She had to have 18 inches taken off her intestine and then after that, we did tons and tons of research and realized that she needed to go on a vegan diet. She felt great on this diet and then her fistula, which had not completely healed up had flared again and her G.I. doctor put her on Flagyl. After reading about reishi mushrooms on this site, she and we are very interested in her trying this method. We're still trying to figure out whether she should take it while she is still on the Flagyl or if she should wait till she's done with this prescription. Also, I wanted to mention the soy milk. We heard really bad things about soy. Have you considered Rice Milk or Almond Milk? That's what our daughter drinks and she loves both of them. She stays away from soy.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/24/2009 4:06 PM (GMT -7)   
It's great that you are in remission. Keep the health up and the good attitude. Your life is aheaduse it well.

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/25/2009 9:28 AM (GMT -7)   
Gfrazer said...
If you have any questions let me know!!!!

Hello all this is my first time posting in this forum I am 19 and I have Crohn's Disease.

It started off with stomach pains, could not eat, sleep, or think clearly, ultimately I began to vomit. I was even having trouble walking and for those of you who have this, you understand what I mean. My parents, at first, thought I had a common sickness and they thought it would pass. It did not pass. It was time to go to the hospital and learn of what was going on and if there was a easy treatment. After many tests the symptoms that I were showing the diagnosis came to Crohn's Colitis, more commonly known as Crohn's disease. I have been through Prednisone, Azathioprine, Pentasa (Azacol), and a list of others. There was a time when I was taking 12 pills a day these would work, however as you all may know they come with side effects, especially the prednisone. Day after Day, month after month, year after year I had trouble eating and gaining weight because of the stomach pains and loss of appetite. In the course of the nine years I have been hospitalized five times. Hope seemed lost.

My parents, and grandmother played a very important role in everything that went on, they did what they felt they could do best, support me, comfort me, and read. They read as much as they could on Crohn's disease, finding out everything they could via the internet, books. After much research they realized some things that would help in my diet. Understanding that Crohn's is a digestive disorder, my parents found that in my diet i should not consume any beef as that is hard to digest, later they found that drinking cow's milk may trigger stomach pains causing me to come out of remission I started drinking soy milk, which is a lot healthier. It was like a chain of unfortunate events as soon as we figured out something that would work something else bad would happen. I started having arthritic pains, these pains were definitely the most unbearable when walking and writing. It made life very difficult. I had inflammation in my knees, ankles, knuckles, fingers, toes. There were times when I would be sleeping and wake up the next night with what felt like a broken toe, the pain and agony was ridiculous.

After much research my parents came along a treatment that was very premature, but it had hope and great results for people. This treatment known as Remicade helps a multitude of inflammatory disorders including Crohn's and I have seen significant results from it. It is done intravenously every 6 weeks, and keeps crohn's in remission along with the maintenence of your other medication prescribed by your doctor, it also replaces others. Over the course of the nine years I have had Crohn's nothing has worked better.

With the treatment of Remicade at 17 and a half, or a senior in high school my appetite came back and my confidence, the results put me back on track. Carpe Diem, seize the day. I took this opportunity to focus on my diet and my appearance. I started working out and attained great results, I am 6'2.5", and feeling great. Because I am doing so well currently, my doctor has completely taken me off all my medication and I am not taking anything now, not even the Remicade. I have been off medication for the past 7 months strong.

I do not want this to drag on anymore. I just want you all to know that this is not an advertisement, I just want you to know that I want you all to know there is hope and when you feel under the weather just think that it will get better.

Please leave feedback and let me what your thoughts are, I am open to any questions you may have about what I did to get better, and my rituals when I was not feeling good.

There were nights when I sat alone asking myself, why? why is this happening to me?
Hi sorry to hear all you have gone through and your so young i was the same age as you only i was hooked up to a gastric feeding tube in my belly and had to drag it to school with the huge bags of feed (Liquid) i had to wear a vest that was made for carrying the machine and the feed and still went to school everyday didn't want to at times i was so sick but i knew i had to do it,i only got 4 hours of my machine a day that time i got a shower and went out with friends it was hard being so young and sick but i knew it could always be worse that is what kept me going. I'm so happy to hear that the Remicade worked for you i tried it and others with no success but i'm currently on Humira a drug of the same family and its working for me now thank god,i'm also glad to hear that you got great support from your family you will need that for the rest of your life,so is this your last year of school prom coming up and grad dinner or what did you get a dress yet. So what is your plans for after school did you decide yet what you want to do with the rest of your life kind of a hard choice when your that young tring to figure out what you want to do for the rest of your life consider all your choices wisely remember your going to be doing the same thing for the next 50 years or more so make sure its something you love.I wish you the best of luck in your future make good choices and feel good you got your whole life ahead of you and welcome to healing well how did you find this site? Your Friend Jenn smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

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