Feedback and Experiences: March 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. "GW2K" 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!
Hi, I was just diagnosed with Crohn's Disease and possibly Cancer so if you have anything that you think could help please send it. Thank You.
I was just told that I have this disease and I don't know exactly what to expect. Right now I have mono also so I can't go throught the testing. I need to know what tests I have to go through and what there like. I love the page but I would like someone to e-mail me and tell me about the tests and treatments and what my life will now be like. I know didly-squat so any info would be great thanks for this page. By the way I'm 16.
From: Vita
It's awesome because I am so lost. I was just diagnosed about two weeks ago and am recovering from a week long hospital stay. I'm still kind of confused about everything and scared.
From: Louis
After suffering from Crohn's since 1982, I simply cannot find anything good about having this disease. Missing time from school or work or any other function just doesn't make me glad that I have it. I would give anything to get ride of Crohn's and never have to miss anything ever again. I understand that this site is meant to be on the lighter side, but I don't see it that way. Not after going through all the surgeries that I have been thorough. Sorry.
I had an peri-rectal abscess back in October. I had it surgically removed which has left me a wound and nurses coming in daily to pack it. I was wondering if anyone has experienced similar problems and what the outcome was.
From: Ann
What a phenomenal resource you have created with this site! As a parent of a IBD 9 year old (Crohn's? UC? not sure yet), I am so grateful for the insights of everyone here and for the sense of community that it provides. I will spend a lot of time here with my son, and I thank you for your hard work in putting this together.
From: Kimberly
I am a 19 year old female recently diagnosed with ulcerative colitis. I had emergency surgery, I'm sure you all know what that means, and will have another surgery in may or June. I have been to hell and back. I am facing each day with a positive attitude.
Congrats with the award :)
What can I say; you deserve it, its a great site.
I glad to see its helping a lot of teens cope with CD because I sure went to hell and back for the first three years. I've had severe CD for five years now.
I have tried all the drugs in Australia, and when they didn't work I had a foot of bowel removed two years ago and only 21 this year.
Even now I struggle sometimes from being depressed, especially when CD rears its ugly
head, so if any want to contact me and chat feel free.
contact me at temple@omen.net.au
From: "Rocko4u"
This is a really cool page you have here. I thought I was the only teenager in the world that had this disease, and was going through all the ups and downs. I have had it since I was 10, and I am now 18. I have had to learn what I can and can't eat on my own. I think it is great that you are giving other people tips, through the Internet, on what you have experienced. I am trying to join the big list; I signed up!!!! And, I look forward to chatting with you all on Tuesday nights, I think!
From: Brittany
Hi! My name is Brittany Gonsalves. I'm 16 years old. I was diagnosed with Crohn's disease and ulcerative colitis (IBD) in December '97. And I have some "forbidden foods" that are not on this list. I can not have carbonation, foods with more than 30% of their calories from fat, sugar, and any type of fast food. Thanks a lot for this wonderful page. It's nice to know I'm not alone. :):)
I have Crohn's and everything, and thanks to your website I've made a friend that has Crohn's. Her name's Kelly and she's very sweet. It's nice to talk to other people who have it. You can write me.
From: Karen
I was diagnosed with Crohn's Disease four years ago. I was a sophomore in high school and being 15 and having all of these symptoms like cramping, loose stool and losing so much blood I was afraid to tell my mom what was going on, I figured it would pass. After about two months of this awful pain I decided to tell my mom about what was going on and of course we went to the doctors right away. That seemed to me to be a waste of time because they had no idea what was wrong with me. So I adventured off to children's hospital weighing only 98lbs
because I hadn't eaten because I was never hungry. I had all the tests, colonoscopy, barium swallow, rectal exams, it was a month
I wish never existed. I was in the hospital for a month throughout that month I
had gotten an huge rash all over my bosy, moth sores so bad that I couldn't even talk, and to top it all of the pain in my
stomach was unbelievable. I was released from the hospital on March 26, 1994 and
I had no!
!
t had a flare-up until this week (March 16, 1998). I was scared because all of the memories had popped back into my mind of how
I was when I was younger but now I am getting better I am still tired but I am not as bad as
I was before. I am on Prednisone now for the flare-up but hopefully I am going to start coming off of it. I wanted to say thanks to the person who created this website it really made me see that
I am not the only person with Crohn's disease and that I will survive!!
From: Annette
You need to read the book Stopping the Vicious Cycle by Elaine
Gottschall. Fruits and vegetables are very important for people with
Crohn's. Your goal should not be to spend the rest of your life running
from Crohn's, but to get rid of it. Along with this diet, I take
KYO-dophilus and a good multi vitamin. I make my own yogurt and eat most
meats. It really isn't that bad. I've had Crohn's for 8 years. I now
spend very little time in the bathroom and in a week or so will be
beginning the reduction of medication.
My boyfriend who is 22 years old was diagnosed with Crohn's last Nov 1997. My boyfriend currently plays for the OPEN MENS QLD TOUCH FOOTBALL team and we are both are very active with
triathlons, running, soccer and touch. (I only found out today that he thinks that exercise may be a factor in causing his Crohn's.) However, since last year I've become interested in finding out any information about this disease. In particular about how it affects peoples physical activity and fitness levels. I'm a third year student studying a human movements degree and I am doing a major assignment in this area due at the end of April 1998. I understand that people go into remission and can lead fully active lives however, I want to know after the disease is active- how much does it affect the persons physical levels? Are they able to carry out their previous level of standard in their sport? At what degree does their illness begin to interfere with their sporting lives? Views from sporting people would be great. Any information would be of tremendous help. thank you
From: D. Darton
This website is awesome. The poem at the beginning brought me to tears. It is exactly what I went through as a teen. My journey began when I was 13. I became very ill and missed about 3 weeks of school. The only place that I felt comfortable was propped on the couch with pillows. I spent most of these years going to eye doctor's because I was seeing double. That was the worst symptom that I had at that time. I still had the stomach pain, bleeding and light headedness but everyone focused on my double vision and paid no attention to my other complaints. I was diagnosed last July with CD. It was a bittersweet moment. I at least knew that I wasn't crazy and that I didn't have anorexia. I had surgery in November and I was feeling great until about 3 weeks ago. This sight is great. It gave me more information than some of the doctor's that I have had. I haven't really been alone my family is around and my sister is going to school to become a pharmacist and she gives me a lot of information. My brother has printed a lot of information off of the Internet. My family always thought that I was faking my sickness and now that they know what it is they know that I was sick and that I wasn't trying to get out of doing work. When I was sick as a teenager I was teased a lot because of the
Prednisone. I was placed on 100 mg of it for extended periods of time to get my double vision to go away. I even had a nickname at my jr. high school. I was told that I looked like a cabbage patch doll . I even went through radiation treatments for my eyes. Now I know why I had the double vision, the stomach pains, light headedness, and bleeding. I am presently taking Pentasa, and azathioprine. I am 27 years old and grateful to have the two wonderful children that I was blessed with. I am also thankful to have such a wonderful husband who was by my side throughout this most recent episode of my Crohn's. Thank you again for this fabulous website. I plan on telling my doctor to recommend it to patients because it is the best site that I have seen so far.
From: Kat
I just wanted to thank you for providing such a great site on Crohn's
disease... It's given me a lot of insight.
See, up until a few hours ago, I had no idea what Crohn's was... earlier
today, one of my closest friends mentioned that he went to the ER last
night because he had a really bad flu and (briefly and in passing he
mentioned this) that his Crohn's was flaring up. Huh? But I didn't
push it, he didn't want to tell me about it.
The thing is though, from reading your website, and everyone's experiences and stuff, I think I've got a better idea of what he goes through... he's not going to ever talk about it, but he does mention problems like severe stomach pain and lower back pain a lot, and other stuff that is mentioned on your page... usually when he does, I'll react with a "yeah, quit your whining and go to a chiropractor!" or something like that. But seriously, I think I finally get it, and hopefully I can be a more understanding, better friend with regards to all this. Thank you...
From: Ricki
Hi, my name is Rickelle but call me Ricki, I'm 17 and I'd just like to say your page is great. I've only recently got CD and just like everyone else my doctor was very
blasé about the whole thing. Your page has not only given me information, it has also opened my eyes to the fact that I'm not the ONLY teenager with CD. Not only do I have CD but I also have diabetes (I've had this for 16 years) and celiac disease (I've had this for 8 years) and it's becoming hard to cope but your page has lifted my spirits. THANK YOU and CONGRATULATIONS!!!
From: Michael
I so glad that you have set up this web page. I felt all alone when I was diagnosed about a year and a half ago. I guess I am one of the the lucky ones I never had stomach cramps or trouble walking and what not. All I had was trouble using the bathroom with loose stools and constipation. My first doctor performed useless test so she thought I just had IBD. She referred me to GI specialist. With one colonoscopy I was diagnosed with CD. I was put on all regular
meds. (Asacol,Prednisone,etc.) I did pretty well didn't have to go to the hospital just follow up visits and so on. Then then the good news came my Crohn's went into remission, but it left me with perennial disease. Know every time I went to the bathroom it hurt real bad. It got worse with time I got more meds. but nothing was
working. I was hospitalized a day after Xmas of 97 for the first time. They did their little tests (Colonoscopy, Barium X-ray, etc) I was released and my condition was a little better but then again it got worse then back to the hospital I went. This time I had surgery to clear the skin down their. As I was healing down their I was still passing bowels which hurt like hell. So I was forced to make a rash decision and I asked for a Colostomy and they gladly gave it to me. In a way I regret this thing. Having to use the bath room in a bag and having to clean out the bag when it gets full. I am still recovering from the surgery so I cant go to school or walk long distances with out getting tired. I was I would have taken my other option TPN for 6 months but last time I had TPN it was a burden of sorts. So know I have to have this Colostomy for 6 months its hard to tell friends about my CD so I don't try. I would like to tell everyone who is faced with the decision to get a colostomy don't get it unless its your final option. People like your parents, doctors, and books well tell you how much better you'll fell but its a bunch of crap it. Don't take my word it might work for some people but not for me. Oh' yeah if you have a pick line and your having pain and in the hospital ask for morphine or
Demerol it well make you fell good :) (just kidding but it well make you fell good:)
Go on to April 1998
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