Feedback and Experiences: April 1998
Thanks to everyone who has been sending me their experiences and comments about the website. It's really nice to know that lots of people are getting some good use from it. Here's some of the mail I've received. Some letters have been edited for space. If you want your e-mail address displayed by your comments, be sure to let me know. Otherwise, I won't put it up. After all, we all value our privacy! Several people have a nasty habit of not fully typing their e-mail address, especially on the forms. "PHB" is not a complete address. I must also have the "@wherever.com" to send you a reply. So please, send all of the information for an accurate response. One more thing: I get so much mail everyday that sometimes I
accidentally overlook a letter or two. If you don't get a response in a day or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
From: Eric
First let me start by saying I am 36 years old, married with a lovely young daughter, a top executive at one of the world's largest and most successful corporations, and generally have had all the success I dreamed about in my wildest fantasies - and was diagnosed with Crohn's when I was about 14.
The initial shock was only tolerable because of my apparent trust in my doctors and the support of my parents and friends - but little did I know I was in for about four more years of constant treatment, ranging from drug treatment to several surgeries. I was nearing the end of my seventeenth year when my symptoms went into "spontaneous remission".
I would like to post a much longer and more detailed story in the future, but for now felt compelled to simply write something immediately - due to the fact that I have really not been able to share my experiences with anyone outside of my intimate friends over the years - who, while compassionate, cannot possibly understand the situation.
My interest in your wonderful page is that it exists - I wish something like this had existed for me twenty years ago - and I hope I can help by sharing my experience in greater detail in the future.
Crohn's has affected me negatively and positively. The negative is obvious for the most part - so before I finish this post I'd like to mention a few positives that may seem non-obvious to us at age 14 or so.
Crohn's made me stronger and tougher. It "taught" me that I am not invincible - and at a very early age I grew up fast realizing that I was mortal. I learned early, like everyone reading this, that each day is important - and to live it to its fullest and cram in as much as possible, stuffing each day with as much living as is humanely possible. I learned to try anything once, to think "out of the box", to risk it, and to value the great things in life, whatever they were to me. These are just a few of the positives - there are more.
Crohn's has its challenges - and for me they changed as I became older - not the physical ones, the mental ones. It's hard to understand this until you are twenty years older, but you never forget it - and I think for some, myself included, you see the world differently forever. As you change and your life changes, this intense experience of youth seems to revisit and affect thought patterns in subtle ways.
Anyway, you have a great site - I commend you and everyone who is participating. Thank you for the opportunity to share a little and learn a lot - the learning never stops.
From: "Rleachsr"
Although I am not a teenager, my Crohn's disease began around my
early teens. No one had heard of it then in teens. I am now 51. It was not
diagnosed till I was about 17. I have found eggs to be the most horrible
food for me. It took me at least 34 years to figure this out simply because it
did not always react each time I eat eggs. As you may know
eggs may contain salmonella poison in some of them and if they have it
then the older the egg the higher the concentration. After watching a piece on
TV maybe Dateline, I see what has been happening.
A egg may not react one time when I eat it, maybe even twice, but never 3
times and when it does, its murder. It brings back the horrible
memories I had of high school and my experiences.
Also, I have had salmonella poisoning, so I can relate to it also and the symptoms do some of the same things.
How can I go to high school? I am not "cured". The pains are still there and very annoying, even with meds. The teachers don't really believe me, the bathrooms are rather inaccessible during class. I miss 3 days and can't catch up very well. Things are going downhill. What do others do?
From: Mary Lee
I was very happy to see this page. A young relative of mine has been diagnosed. He is going through a very hard time... He is scheduled for surgery soon. This home page is great! You have done an exceptional job. Thanks!
From: Michelle
My name is shelly and I've had Crohn's since I've been 11 years old, and I'm 30 now. I've been on all kinds of diets and none of them really ever worked. I was in and out of the hospital my whole teen life, On different kids of diets , certain health drinks actually I think I've tried them all. Shortly after I turned 18 I was put back in the hospital, almost died cause my
Crohn's acted up so bad that I lost a lot of blood and passed out in the bathroom at the hospital. Having my 2 IVs
against the bathroom door stopped them from getting in right away, they could only open the door a little bit and had to find a little nurse to squeeze in and climb over the bathroom sink. By the time they got to me I was out cold , nearly lost my life that day, was the
scariest day of my life. They put me in intensive care that day and buy the next day I was on my 4th surgery . This time i had to have an
illeostomy. It saved my life, and since then knock on wood I haven't had any reoccurrences. Even though i hate having the
illeostomy it saved my life and now I'm married with two beautiful children and wouldn't change anything. There's a lot more that I've been through, but this was the main thing. Thanks for
listening.
I don't know whom I'm writing to, but I was diagnosed with Crohn's disease just recently, 4-27, and I was wondering if someone could give me some info. on it. My father has it but doesn't know all of the newer details that have been discovered. He's still pretty upset that he gave it to me and won't really talk to me about it.
On March 5th I found out I had Crohn's. I was in the hospital for 3 and a half days. I was started on some new medication,
hoping they would work. I really like the website. It has been a great help. I am glad I'm not the only one out there. I am doing better now. Before I found out I had Crohn's, they thought I had Ulcerative Colitis. I went 5 months with just taking Asacol and Prednisone. When I wasn't getting any better they put me in the hospital and did a colonoscopy. If you have anything to share to help me through this please e-mail me, I would love to here from you.
From: Gary
Congratulations on the Prudential Spirit Award.
From: Julie
Hi! I just wanted to tell you that you've touched me a lot with the description on the first page, I recognized myself so much when I was younger. I was diagnosed with Crohn's when I was 13, now
I'm 21 and I've been thru 4 surgery since. I almost died with the last one so now
I see life like a gift! I just want to tell everyone that has it ,not to let the disease take control of your life. It's your body and you have to take it positive! Take it cool! Bye
From: Deb
HI! I wrote to you some time ago about my son, Dallas who had Ulcerative Colitis. This is to update that letter, which I should have done earlier...but time
flies.... Well, Dallas had a biopsy come back last May (97) that was positive for cancer cells. And, he had gotten so much
worse... he had the first of two surgeries in July of 97 in which they took all of the large intestine and some of the small. They formed a internal pouch and he had a colostomy bag to use while the pouch healed. In October of 97 he had the colostomy closed off and besides two small surgeries for complications he has been doing very well. He has had only one bout with pouchitis, but the meds they prescribed took care of that. He went back to school in Jan. of this year and is now playing school baseball again! He took some physical therapy while he was healing up to help him regain his strength and endurance, which helped a lot. His doctor was
wonderful! Dr. Juan Dominguez of Springfield, MO. was his surgeon and he was a blessing to us. He has taken such wonderful care of Dallas and has been very supportive. So, I want to thank everyone who prayed for Dallas and send your very supportive emails to us! Sorry it took me so long to get this update posted, but it's been a very hectic year for us! My prayers continue for you all who have UC and
Crohn's, and we are here if anyone ever wants to talk. Thank you, especially for putting together this website, for it was through you that Dallas finally started talking about his illness with his friends. Many Blessings, Deb (Dallas mom!)
From: Kristi
I think this is a great thing for teens. My sister is 17 and she has Crohn's and I am searching for things I can show her.
From: Renée Et Jacques
I have been healthy for 4 years. My medication is Prednisone, Asacol, Metronidazol and Purinéthol. Last month I had an operation. I have an abscess, but this operation was unsuccessful. I don't feel well, but I could think about the beautiful days. I never stop fighting and I am sure I will feel great in a few days.
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