Feedback and Experiences: June 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. "KL_MG_DC" 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: Barbara Bush, Former First Lady of the United States
(Mrs. Bush spoke at the Prudential Spirit of Community Awards in May 1998. I had the pleasure of meeting her and I explained briefly my work on TWC. After the event, I sent her a letter thanking her for her interest. This is her response. --Webmaster)
Thank you so much for your nice note. I enjoyed speaking at the Prudential Spirit of Community Initiative Awards, and I especially enjoyed learning about the Website you've created for teenagers with Crohn's Disease.
You are providing a marvelous service to so many of your peers, and I am touched by your hard work and dedication to others. I hope you don't mind, but I've shared your nice letter with my son, Marvin, who as you know is involved with the Crohn's and Colitis Foundation of America.
It was kind of you to write, and I appreciate your having been in touch.
My daughter was just diagnosed with Crohn's. I know we have a rough road ahead. Is there any advice anyone can give me to help us get started with dealing with this disease? I know the tears are going to flow. They have started. Any help will be appreciated.
From: Lisa
I was recently diagnosed with Crohn's Disease, but had been suffering for a long time before. After I was admitted to the hospital and had a barium, colonoscopy, endoscopy, and countless other procedures, I was put on TPN IV's and
Prednisone. The drugs did not help at all so surgery became my best option. After two weeks in the hospital, I had four feet of my small intestine and a small portion of my large removed. I was wondering if anyone has had a similar operation? What foods help or
aggravate you now? I would greatly appreciate anyone who could share their experience and/or tips with me. I am so happy to have found this web site! It's wonderful! Thank You!
I am a 20 year old college student with Crohn's. I was diagnosed eight
years ago when I was in
seventh grade. I just want to let everyone, who is suffering from this
frustrating disease, know that it is possible to do everything you have
ever dreamed of doing! I am a pre-med/chemistry major and
I hope to find a cure for Crohn's someday. I was involved in sports and
activities in high school.
I also have had four resections and a feeding tube, so I know how hard it
is to stay focused on
what you want. Strive for your goals and don't let anything stop you not
even a little thing like Crohn's!!
If anyone wants to write to me, I would love to receive e-mail from kids with this condition.
From: Heather
As I was reading the Prednisone stories, I started to cry. I have had Crohn's for 8 years and up until a few months ago I did not take my
medicine (especially Prednisone) because of the way I looked (I hated the round face!!) I also did like the increase in
appetite (I didn't want to get fat!). I was popular in high school and I didn't think anyone would like me if I had "puffy" cheeks. I learned my lesson the hard way in
February of this year. I went in for my fourth resection at Riley Children's Hospital in Indiana. It was going to be no big deal for me because I always bounce right back and get on with my life, not taking my meds. Well, this time it was different, because my Crohn's had gotten so bad I also had a pocket of infection and a narrowing in several parts. Anyway, 1 week after surgery my lung collapsed and immediately I went in to a coma for two days. My whole family was at the hospital and the doctors did not expect me to live through the night because my heart rate was increasing, along with my blood pressure, and I was having
seizures (I don't have a history of seizures). The doctors could not do anything, because they had no idea what was wrong. Well, the next morning I woke up from my coma and although I did not have any feeling in my right arm and left leg I was fine. I have regained my feeling and thanks to physical therapy, I am back at college finishing up my incompletes I had to take this semester. What I want to tell all of you is take your medicine, I thought that Crohn's was not something you could die of and I didn't think anything was going to happen to me if I didn't take my meds, but I was wrong!!!!!!!!!!!!!! The puffy cheeks is just a little disadvantage to being alive!!!!
About three years ago I was diagnosed with Crohn's disease. I was 16 at that time now
I'm 18. Luckily I never really had much problems a few flair ups here and there but nothing serious. Until recently about six months ago I kept getting bladder infections one right after another. I became a regular at Kaiser, but still they could not find the cause. So I went to an expert at Stanford Hospital. Then finally they
discovered the problem my intestine connecting to my small bowel had become so inflamed that it started rubbing on my bladder causing a hole, called a
fistula. I then returned to Kaiser with my new findings. My primary doctor then started me on a type of chemo therapy called
Purinthenol. Unfortunately It was unsuccessful. About two weeks ago My doctor decided it was time for surgery It is now unavoidable. My question to you is, is there anyone out there in my situation! Or someone who has already experienced this. I would greatly appreciate your input or comments. I'm pretty nervous about this. I just want to know what to expect.
From: Jody
I'm a junior high teacher, and just today one of my former students (and the son of my principal) was officially diagnosed with Crohn's. Since my best friend also has this condition, I had some knowledge of it, however, I immediately rushed to the WWW to look for information.
I am impressed and heartened by your site. I incorporate the Internet and the WWW in my teaching, and I know how powerful a medium the web is. I look forward to the day when Jermaine leaves the hospital so I can clue him into your pages. He is a fine young man and I know he has the internal fortitude to cope
with Crohn's, but there is nothing like a little help! Thanks for all your hard work. Keep it up!
From: Colleen
Hello - my name is Colleen. We just found out that my little brother, who is 13, has chron's. He had been feeling sick for about six months and the doctor kept saying that it was just a cold. Can you believe it? He was very tired all the time. We knew that something was wrong. Anyway, after being in the hospital for two weeks they figured out what it was. I feel so sorry for him. I hate that he has to go through this. The tests are so unpleasant. It has been about six weeks now and he still feels so bad. I just want him to get better. Our family is very new to this whole thing. It has been hard adjusting. My brother still wants to eat things that he can't have. This is so hard. How do you tell him no without making him feel like he is 2 years old. Thank you so much for having this web site!!!! It is so great!!!!
From: Laura
Hi! I sympathize with the whole lot of you. When I was 4 years old, I was hit with Ulcerated
Colitis (my doctor thought I had WORMS!). My memory of those times is quite sketchy. I remember endless hospital stays, doctors, and loneliness. After various treatments and surgeries, I was finally given an illeostomy. I'm now 22. My illeostomy is something I've basically taken for granted for years (or I've at least tried to). I've been in the hospital a number of times since 1980 for whatchamacallit scar tissue (at the tender age of nine I was told I needed to be "stretched"). Last year, in particular, I missed my university exams because I suddenly found myself in the emergency room at 2am one morning in need of emergency surgery for a twisted bowel. Despite that nasty summer, however, I am now graduating and moving on to get my Masters. I've had my share of painful, dark days but, basically, my life began after my illeostomy and it has been nothing short of amazing. I wish I had something more inspiring to say.
From: Ranee
I just want to let you know that this is a great thing you are doing for everyone who has been diagnosed with Crohn's disease. I was diagnosed my freshman year in college, I guess I was 17 or 18 years old, after a series of misdiagnosises. Ever since I can remember, I would tell my parents and doctor's that I had a pain in my side and like many other people I got the typical responses of "oh, it's in your head" or "it's just because of your posture" etc... So in the meantime I was taking all of these different medications that were only worsening my Crohn's disease. When I was finally diagnosed, I thought, how embarrassing. When people ask me why I take 23 pills a day how do I explain to them my humiliating symptoms. This website
would've been a lifesaver for me a few years ago (I am now 22 years old). I had a steady boyfriend at which time toilet habits were not discussed, so with my bouts of diarrhea I would have to hold it in and get an upset stomach, not to mention his confusion over my constant
vomiting (everybody thought I was bulimic, little did they know). Being a teenager with Crohn's disease was not fun, it's not fun now. The steady boyfriend I spoke of is my
fiancé now and we are getting married in 15 days. He stuck by me through all of my mood swings and my pains. To this day I attribute my being able to live normally to him. For all of you who have Crohn's, don't hesitate to open up to your loved ones, they will not make fun, it will bring you closer together. There were times when he would not understand why out of nowhere I would be doubled over in pain but he still came and put his arm around me and would stay by my side until the pain subsided. Not saying that things are always perfect for goodness sake. Because I was in pain all day I would come home to him in a bad mood we'd get in fights but we always made it through. Nobody really knows what Crohn's disease is or what it is like to have it. It's hard, so hard. It's hard to remember to take your medicine all day long. It is hard to constantly watch your diet. When I was diagnosed I had no idea that the symptoms could be subsided with change of diet. Another reason why your web page is so good, you have great recipes. There is a book called Breaking the Vicious Cycle, I recommend anyone with Crohn's or Colitis read it. Anyway from a older, but not too much older patient, thank you for this web page, it is truly a godsend to young people recently diagnosed who are as confused as all of us were.
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