The Feedback and Experiences Page: January 1999

Thanks to everyone who has been sending me their experiences and comments about the website. It's been quite a year! It's really nice to know that lots of people are getting some good use from it. Here's a sample 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. "Remmy_Cade" 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: Allyson

My name is Allyson (or Kay), and I was diagnosed with Crohn's four years ago. I have went through so much pain and suffering with a disease no one can seem to know where it comes from or how to prevent it. Things got so bad til I had to have surgery in 96'-which was me getting a temporary colostomy. I have had it since, but I feel so much better. I am at work and I am kinda busy...I just really wanted to say that it is very comforting for me to find a website with a topic I can relate to and know that I'm not the only one dealing with this disease. Thanks.

From: Amanda

I think this is a wonderful page! It's nice to know I'm not the only one with CD an all these unpleasant problems. not that I enjoy the idea of others suffering with this. but it is nice to know I'm not alone.. and your tips are very helpful ;) all an all I think this is one of the best pages I've been to!

From: Dan

I just read with interest your little confessional on your web page. This is just a note to tell you how impressed I am with what you've put together. I teach at a local university and have a student who was out intermittently last semester with complications due to Crohn's. He's fine now, but it was a hellish time for him: trips to emergency, three hospitalizations, removal of part of his small bowel, then removal of his gall bladder, abscesses in his brain -- it scared the s--t our of me, and I barely knew him at the time. Two of his professors forced him to drop their classes, but it never occurred to me. He kept up with his reading and I made any adjustments necessary to keep him enrolled. Like you math teacher, some of us are nice guys. ;-) All of this is by way of saying that I was surfing around looking for information on CD when I ran across your site. You've done a super job with it and you deserve the attention and accolades you've gotten because of it. Good luck in college. If this is any indication, you should do well.

From: Christine

I am really excited that I found this page. I have been looking for something that tell me more than what the disease is (i already know that) and the different meds. I want to know what is like to live with Crohn's. I have yet to be diagnosed. I have been sick for two years and have been told repeatedly that it is all in my head. I am 22 and for a time I actually started to believe that I was making it up. I went in for a barium enema last week and will get the results. They finally decided maybe I really was ill considering I spent the last four weeks with bloody diarrhea, severe bloating and cramping, fatigue etc.. For some reason these symptoms were imagined before. As much as I will hate living with this disease, or whatever new ailment they decide I have, it will be nice to know what is wrong with me. I have been told that I have Celiac disease, gastroesophagol reflux disease, an ulcer and that I am just unable to deal with the stress of university. Being female, I have also been subjected to four pregnancy tests. I really wonder what doctors go to school for.

From: Robyn

I was just diagnosed with Crohn's Nov. 1998. I was having horrible stomach cramps for several months traveling from doctor to doctor and not really knowing what was wrong. I didn't know that I had Crohn's until right after a colonoscopy when they told me what was wrong. Now I am always reading what everyone else is suggesting to see if it will work for me. Right now I am taking Prednisone which seems to be doing something but I'm not really sure yet because I have only been on it for a couple of days, but I hope it is doing something.

From: Drew

Well, My case I guess is pretty typical. I was diagnosed in '96 when I was 16 years old and it took 6 months to properly identify the infestation of Crohn's. I went from being 160lbs at five foot ten to being 115 lbs at six feet in two months time and I still haven't been able to gain weight past 145 to this date. I have some very supportive friends and a wonderful girlfriend but I'm still kind of at a loss when it comes to dealing with the flare ups. I'm holding down a part time job and going to collage to learn Culinary Arts so I don't have a problem experiencing some incredible highs but I get hung up too much sometimes on the unbelievable lows. Over all I'd say my health hasn't been bad but September 98 was the worst because it was all extraintestinal. I had arthritis in both knees, my hips, my right elbow, and my left ankle and I was fighting off an acute case of Iritis. What gets me to this day is how suddenly things like that happen. Just form one minute to the next you can be feeling fine then suddenly there's a pain which is just unbearable. I'm always on the look out for really helpful hints about warding off flare ups and I enjoy hearing about other peoples success stories. If having CD has taught me one thing, it that you should always enjoy the days when you feel good. Never take it for granted. It's a good way to live.

From: Lauren

First I'd like to say that this page has become my support system for my disease. I think it is amazing! I've referred it to other people and I've showed it to my friends (people without Crohn's Disease) and they've been really impressed with how much personal information there was. I was diagnosed a year ago. I went to college four hours away from home with a full blown flare-up and a fistula. It was hard not having my own bathroom and waking up at 4 in the morning with stomach pain and have to sit in the hallway so that I didn't wake my roommate. It was really tough going to classes with no family memebr to push me. None of it was easy but I did it. So if you ever think that this disease is going to stop you...it's not. It might delay you. But it won't stop you. My friends were unbelieveably supportive and helped me get through it. And I did. So don't ever think that it's going to be that bad, because you just have to be strong and not let it beat you. There's something that can be helpful when you really don't feel well..."Whatever doesn't kill you makes you stronger." And that's what this disease does for each person it infects...it makes them stronger.

From: Kelly-Anne

I was diagnosed just recently on December 31, 1998 and I'm 14 years old now. I had upper GIs done and a colonoscopy done. I've had the upper GIs done once when I was about 5 years old. And the doctors told me that there was nothing wrong and that the only thing that was wrong was that I was lactose- intolerant. I've been having horrible pains almost all my life since I was 5 and they finally did those two tests on me and then on December 31, the doctor called and my dad told me I had Crohn's Disease. I was happy to finally know what was wrong with me... but in a way scared because I never heard of it and i heard theres no cure for it either.

From: Susan (Amber's mom)

Hi, we are relatively new to this disease. Last June, the week before exams, my daughter started getting really bad stomach aches. We saw several doctors with no results. Finally she got so sick I took her to the emergency room. Over the next few weeks they ran all kinds of tests on her. My daughter is 14, the first test was Ultra sound, then they wanted to do a Barium X-Ray. We didn't know how bad the stuff tasted until that day. Amber gagged on the stuff. Then came the Barium Enema. Well try to explain to your child what the doctors want to do next. This child was in tears for days. We as parents try to instill in our children not to let anyone touch there private parts, then all of a sudden a doctor wants to put what were. I stayed with my daughter through all her tests, and cried along with her. The doctors never came out and said it was definitely Crohn's. Then one day in September, Amber had a belly ache like she never had before. This child could not stand or hold her head up, or keep anything down. I phoned the doctor, she said to give her gravol and if she wasn't any better in an hour to take her to the hospital. Well she didn't get any better. Once we got her to the hospital we had to explain everything to another doctor. He ordered an ambulance, gave her a shot of Demerol, hooked her up to an IV and we were off to Saskatoon. Once we got there I had to explain everything all over again. This was 3AM, they examined her again, more intrusion. They didn't do much for her. We finally got into a room around 7AM, the doctors scheduled a CAT Scan for 4PM. The CAT Scan showed a ruptured bowel due to Crohn's disease. So now we have a definite diagnosis. That evening at 8PM they did emergency surgery on her. This child was malnourished, dehydrated, under weight, or should I just say she was not in top physical condition for surgery. She made it through the surgery with flying colors, the doctor said that half through her color started to come back. She had an ileostomy done, and is now on Pentasa. She is doing fine right now, she had a flare up here about a week ago, but that was because she wasn't taking her medicine. The doctor gave her heck, and so did a lot of other people. She is due to have reconstructive surgery here on the 6th of January.

From: Sthernoldo

I am 20 yrs. old and have had Crohn's since June of 97. I have had to move to the state of Ga. to live w/my grandmother to try and get some help. I have no income and little resources on finding a doctor that can help me. I am not able to work due to the fact of being unable to handle certain levels of stress. You I am sure can relate to me, I really was just hoping to get help with the Crohn's and maybe a doctor that will take my case on free or really cheap! Please e-mail any ideas!

From: Phillip

My name is Philip and I am 12 years old. I was diagnosed with Crohn's about a year ago, and since then I've been on Pred., Flagyl, 6mp, Asacol, and Pentasa which I am still on... none of them had any effect on my inflammation, all they did was give me bad side effects. I got a seizure from Flagyl, anemia from the 6mp, (I don't even want to mention Prednisone), hair loss from Asacol and head frequent head aches from Pentasa... But less then a month ago I had surgery and I feel 100%. Even though there is always the risk of it coming back I still want to enjoy it while it lasts. Don't put your self through the pain anymore!!

From: Dawn

My name is Dawn and I am 13. I was diagnosed with Crohn's disease at age 12. I have then had my about a foot of my intestine removed. I can now eat anything I want. I am a lot happier now than ever. If you would like to talk I would be more than happy. Personally, I think that it would be kind of fun talking to someone that is or went through the same thing as me.

From: "JKS"

Hi My daughter was diagnosed with croons in Dec. 21.1997 . Merry Christmas! She has it in her lower stomach and in her lower intestine. All the formation that I have read only talk about it being in the intestine and have diarrhea. She has no diarrhea or any problems. The thing that she has a probable with is if she goes under 30 mg a day of the bad pill .she start to hurt in her stomach. So we talking to the Dr. about once a week and going up and down on the mg. I would like to find out if there is any books out there that can tell us about the disease in the stomach. She is only 18 . Very pretty Very Sport Active. So far she has not got fat face. She lost 14lbs at first and has only gain 6 of it back. But she is always work out. She is a cheerleader. And work very hard at it. The Dr. tell us that having Crohn's in the stomach is very rare. That he is only seen 2 times in his 20 years. And right now we are just guess at what well help her.

From: Dawn

I was diagnosed with Crohn's at 19...had a resection (about six inches out)-illeum included, fistulas removed, appendix taken out, bladder repair...(not to mention the plastic surgeries to repair abnormal scaring)...all due to the disease...I've been through the mill and back...I would like to offer my help to all those who want it....

From: Katie

I really appreciate this website. I have been searching forever for a website for teens with Crohn's. In October of 1998 I was diagnosed ever since then it has been a pain. I am on 21 pills per day. I take Prednisone, buedesonide, iron, vitamin E, multivitamin, Flagyl, Pentasa, Tums and aloe vera juice. My cheeks are the size of balloons and I have developed dry skin and acne. My weight has increased, I was 108 before and now I am 128.

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