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. "Bender22" 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!
I'm Jessica and I have Crohn's Disease too. Anyways I'm
on 100 MG of 6-MP and reducing my Prednisone. I'm also on
some other stuff but I have no idea what it is. Well my doc
wants to give me Remicade, and I'm REALLY REALLY REALLY scared.
I'm just really tried of all this and I'm sick of being sick.
I was in the hospital for over 25 days...over the course of a two
month time. I had 25 inches of my small intestines removed
but I'm still not getting better :o( I doubt you want to hear
about this so I won't bore you...I just want to know if you could
give me some advice or encouragement on this Remicade treatment.
I'm so tired of not being normal and all the side effects look
terrible...but then again, nothing could be as bad as Prednisone...puffy
face :o( So please if you could, mail me back I'd appreciate it!
I am 13 years old and have Crohn's Disease. I heard about this site by reading your story in the book "Young People and Chronic Illnesses". My story is similar. I'd like to share this with you because you are somebody I can relate to. It started about August '97 when I got stomach pains. My mom took me to the hospital for a possible appendicitis. The tests were negative, but to make sure it wasn't serious I saw a pediatric gastrointerologist (my current gastro). He put me on Prilosec, an ulcer med, which seems to take away my pain. Then in the spring of'98, I had an endoscopy (they put you to sleep then put a long scope down in your body and take pics); they found nothing. I had no pain until November when I had a flu that wouldn't go away. I was out of school a few weeks then my gastro thought I either had Crohn's or Lime Disease, considering I was in PA for a day with my aunt for a picnic thing. My symptoms were fatigue, joint & muscle pain, minor stomach pain, low grade fever. After many tests they found limes was negative and diagnosed me with a new disease: juvenile rheumatoid arthritis. After the new year, I was in & out of school and had an upper and lower GI (drinking barium! that nasty stuff!); those tests showed evidence of Crohn's disease. Many docs had different opinions. After a 2nd endoscopy, the Crohn's was definite. It was in the stomach. They also performed a test a few weeks ago called a colonoscopy (same as an endoscopy but the tube goes the other way in.) They found out I also have it in the intestine. I'm currently on Pentasa (a new pill for Crohn's), Prilosec, and Prednisone (a steroid). My Crohn's is weird cause lactose, fried and all those other foods don't affect my disease. The steroid makes me have an uncanny appetite. I'm on concurrent schooling and will go back to school slowly soon. I'm not sure all my friends will understand but I'll explain the disease as best as possible. I hope to get it into remission soon.
Thanks a lot for the page, it's be en extremely helpful and comforting I was diagnosed with Crohn's March 23, the day after my 17th birthday. starting in November I had pains, and I had an upper GI, but it didn't give any answers. My pediatric gastrointerologist put me on Prevacid for an ulcer, and things got better for awhile. But then everything got worse, my appetite was up and down and I had increasing pain in my abdomen. The docs checked me for appendicitis, and I had all types of ultrasounds and X-rays. They even sent me to a gynecologist to see if mine were "female problems" I was at the hospital everyday with new tests. I got to be great friends with everyone working in the radiology department. It was really frustrating not getting any answers. When the doctor called on Tuesday with a "regional Enteritis" diagnosis, my mom and I were excited that they had finally found a cause. But then when we realized it was Crohn's, we were both upset, confused and scared. My gastrointerologist attempted to explain, but there was just so much information at once. I'm scheduled for a colonoscopy on Tuesday, and she said that will bring more answers. Right now I'm just trying to figure this all out. This website has really helped, but I still have fears. But thanks so much for all this. Its helped me to sort out how I'm feeling and what I need to do.
I just wanted to tell you what great site this is. I'm a pediatric nurse and do not have Crohn's. I was trying to find something, a support group or information to help a teen newly diagnosed with Crohn's. The only information I had at the hospital were nursing/medical text books. These aren't a lot of help to non medical people. The social worker was trying to find a support group and not having much luck. I decided to see what I could find on the net and found you. Your site is fantastic. I gave the address to the patient. I hope that the patient and family will access your site and get some support from you and all the others who have shared your experiences.
Hi, my name is Lyndsey and I just got diagnosed with Crohn's disease about nine months ago. I've been sick all my life. Now, we thinks has all been associated with this disease. My life has completely turned upside down. I understand completely when other teens say "people just don't understand." I'm 16 and these are supposed to be the best days of my life. So far, they've been the worst. On January 23 of this year we had a school function my hair was all done up, and I had a beautiful gown and it all went to waste. Because, not even five minutes into the dance, it felt like I was having a heart attack. My loving boyfriend carried me from the school to his car and drove quickly to the E.R. My evening was ruined. I feel as though my life is ending even though it's only supposed to be beginning. I feel myself coming into a deep gorge of depression and helplessness.
Hmmm let me see.... My name is Bryan, and I am 18 yrs old. First off, I hate my life, I hate the doctors, I hate God for bringing me into this world, I hate Prednisone, I hate constant agonizing pain, I hate that people think I'm lying and have this disease just for attention, I hate vomiting all day, I hate having to take painkillers that work sometimes, I hate passing blood, I hate being tired all the time, I wish I was normal, I think about killing myself all the time, I hate knowing my future is destined for failure, I hate all the upper gi's, I hate colonoscopies, I hate waiting in a doctor's office for 3 hours for him to tell me "it's not that bad". These are some of my thought's and maybe someone else's too. .
Hi, my name is Nicole. I recently discovered I have Crohn's disease and was wondering how much information you know about it. I have been reading up on a couple of things, and some say to have low-fiber diets, don't eat fruits and veggies, and other things. I had never heard of Crohn's before I got it. I'm kind of sick and tired of people treating me like I'm a child. I'm 18 yrs old, and my mum won't leave me alone about it. She won't let me carry things, which makes me feel like an invalid. I don't really know how to cope with it all. I feel like bursting into to tears whenever someone says, "It'll be alright", but they don't know what your going through. When I was in the doctors office, it was so hard to keep everything in, it's so hard to hold back your emotions, but I fear that if I let them go, I'll be giving up. And that's one thing I don't want to do. I'm attending TAFE, and sometimes the pain is so extreme, that I feel I'm going to curl over and die. I try so hard not to miss any school because of it, and I always feel tired if I get pains during the day. It's so hard to tell people what is wrong, especially when your a teenager. Some of they guys at school want to know what is wrong with me, but I find it hard to tell them, it's personal. I don't want to be treated differently then other people, I guess the real thing is, that I don't want to accept it, but then again, nobody would. Thanks for creating such a great page, it's really great to know there are other people around who you can share your experiences with. BYE!
My name is Kelly. I was diagnosed very young (age 10) with Crohn's disease. I am now 29 and have had just about every test they make. I just wanted to tell you that I think you must be a very brave person to have faced this terrible disease and still have such a positive attitude. I'm glad that you are doing so well. Young people now are lucky to have people like you (webmasters) to share with. When I was diagnosed not even the doctors new what CD was. Here is my story: I was diagnosed with ulcerative colitis when I was ten years old. The doctors prescribed azulfadine and I was fine. A year later the pain started again. So at the ripe old age of 11 I was diagnosed with a strange disease that no one had heard of, Crohn's Disease. I can remember going to the doctor for the usual check-up and answering the infamous question...Do you take any prescription medicine? It never failed, after I listed off all the drugs, the doctors would always ask why. T he interesting part was that I would tell them and then have to explain the disease to them. It was not comforting being a 12 year old kid explaining the disease that plagued me to a 40year old doctor. (Aren't they supposed to know everything?) But over the years more and more people new what it was. I am thoroughly convinced that they will find a cure!!! I made it through middle school (the age when kids are the cruelest) without to many problems. I had to go to the nurse everyday for my medication, so I guess I was an easy target for the bullies. At first I wouldn't let anybody talk about it. I didn't want my friends to find out I was "different." There were rumors flying all over school that I was bulimic. To make matters worse my mother was a teacher at the school. It was horrible; kids can be so mean. I remember eating my lunch sitting by myself on the edge of the stage in the cafeteria. I truly believe that everybody knew that I had CD. Luckily, I can look back now and realize that it was jus t the age we were at. I wasn't a freak. It's funny though, I was packing up all my stuff to move and found my old middle school yearbooks. Instead of all the generic messages that are usually signed in yearbooks, I got things like: to a bony girl and t o the school stick. I moved on to high school and was able to participate in many normal activities. I was in the color guard and also worked with the Music Theater. I made through those 4 years without many difficulties. I did have a lot of anxiety a bout "using the facilities" back then. I'm sure that we all feel the same way. Finally the administration just gave me a permanent hall pass so that I could just go whenever. and I always used the "private facilities" in the nurse's office. Everyone was actually very cool about it all. On a few occasions I went on trips with the band to competitions. Let talk about anxiety, what about using a bathroom on a bus. Let's just say that when we stopped at McDonald's to each I was always the fist one off the bus and the last one on. College came next and so did all the problems. I went away to school, about 800 miles away. It was a very small private college in South Carolina. I loved it. It all started off okay, but then the stress started kicking i n. My classes were harder, I didn't get along with my roommate, and I was going through sorority rush. By the end of the year I was so disoriented that I didn't even know what day it was. One of the worst times, I was so ill that my poor roommate had even traded beds (I usually sleep on the top bunk) with me so I wouldn't hurt myself getting up in the night. One morning I was ill and Beth was late for class. I crawled out of bed and made my way down the hall to the restroom. I was so nauseous that I thought I would pass out. I finally made it back to the room after vomiting a lot of blood. Beth had gone to class already, the maid had to call the nurse for me. The nurse then promptly took me to the hospital. Have you ever had a nasal-gastric tube p u t in place while you were awake? Basically it is a garden hose that goes from your mouth to your stomach and then pumps out the contents. Let just say it is extremely uncomfortable. I was there for the weekend and then it was back to classes. At the time I was taking 40mg of Prednisone a day along with other assorted meds. By the time the semester was over I was nearly incapacitated. Once I was home for the summer and went to see the doctor, it was decided the only option left was surgery. They removed about 6inches of each my lower and upper intestines. I was lucky, when they actually got in there they found an abscess the size of a tennis ball. (an abscess is a self-contained infection) It would seem that there had been a small perforation in my colon. Luckily it contained itself. I am lucky. Over the rest of the summer I recovered and went back to school. Everything was WONDERFUL for about 6 months. I don't ever remember feeling that good. I t was the ultimate high, to be healthy. By the 2nd semester, I was having trouble again and back on tons of medicine. By the time I was a senior I was so overmedicated that I could barely get to class without passing out or vomiting. I finally graduated (with a 3.17 GPA!) and moved back home. My doctors reevaluated my situation and a new course of action was taken. It was discovered that I had a stricture in my lower bowel. Medication wasn' t helping. The doctors decided to try a new approach. Every month I was taken into the hospital and the doctors performed a colonoscopy. While they were in the area the stricture was dilated (stretched back open) and injected with steroids. It worked and the medicine started working. Although I did have to emergency surgery once, I am doing well. I only have the procedure done once every three months, My meds are working well, I'm no longer depressed, and I have a great job. I'm glad to hear you are doing well.
Hey, I was diagnosed about 6 months ago and have been in the hospital about 5 times since it has been an uphill battle and I'm not sure if I'm in remission yet!! I just found out I have kidney stones too witch is common with the disease, so beware!! It's a never ending battle, but the best advice I can give is tough it out - things could be a lot worse!
Hello everyone, my name is Amber and I am 20 years old, writing from Kansas. On March 18th I was diagnosed with Crohn's Disease. I have so many questions about the disease, and don't feel like the doctors are answering them for me. (I have had the run around by the doctors since Aug). My pain started in Aug, my right side was killing me and I was vomiting. I went to the doctor and they told me I had an ulcer, put me on ulcer medicine. This was all after I had to drink that nasty barium stuff. I was doing what the doctors told me to do, taking my medicine for the ulcer, but still feeling sick. Finally I went to a specialist and they made me drink more of that nasty barium, and called me an hour after I left hospital and told me my test were not good and I needed to come back and see the doctor the next day. I go back to the doctor and he schedules me for an colonoscopy. He couldn't even get up into my small intestine because I am blocked. That is after he put me on 40mg of Prednisone, that I am still on. By the way I hate that stuff, no I haven't been in the severe pain, but I am still sicker then a dog. Anyways it has been about a month now since I have been on the Prednisone and I am not getting any better. Now they are worried that my liver is getting bad too or something like that. I don't understand the medical talk that easy. But I would just like to talk to someone that is rather close in my age and see what they have experienced and see if what I am going through is normal. I am scared, don't feel good, and just not a real happy person right now and I would like to talk to people are going through what I am going through, or who will understand how I am feeling. Thank you so much for you time, and I enjoy reading your web pages.
I was just checking out your Web Page and wanted to drop you a line and tell you what a fantastic Web Page you have! I have copied down some of the recipes for myself. Well done!!!
We are new to the 'net' and have to say your website is outstanding. My daughter (16) has had Crohn's for 7 years and we live in Sydney, Australia. It has been difficult for her to (a) find any other kids with Crohn's and (b) then meet them as the support groups offered here are mainly targeted to older people. Your website has given her more support in 3 weeks than anything we have ever come across and for this from the bottom of my heart I thank you.
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