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. "EvilToyMonkey" 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 few days or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
My name Is Leslie, 13, and I have had a pretty bad time with Crohn's. I first went to a doctor who told me I was constipated so he put me on laxatives which I hated. When they didn't work he put me on a strict diet. He ten began to wonder what it could be, it took him awhile but he crossed out everything but crohn's. He then had me do the barium swallow through which I did unhappily. When he received the results he told me there was no indication in the upper G.I. So he put me on Asacol which is for the lower because he figured if it wasn't in the upper then it had to be there. He had me on 4 a day then he kept upping it and upping it to 8. It didn't do anything at all for me. He had just assumed that it was in the lower because of the test but I had gone down in weight and hadn't been absorbing the proper nutrients which meant that it was in the upper because that is were you absorb the nutrients from. It was then that my mom decided to see another doctor. So I went to him the next week. When I got there he told me right away that he wanted to find out where it was before doing anything which meant more tests. I did so many tests that kept showing nothing. During this time I went down to 58 lbs.. He finally decided to have me do the barium swallow again which really made me mad. When he got the results it showed that I had it in two places. So I had spent six months with the first doctor for nothing. After he found out where he put me on Prednisone starting at eight and going down a half a pill a week. Then when he saw I was feeling fine he let me go down a full pill a week. After I finished them I felt almost normal except for the moon face and the fact that I now weighed 90. He then had me taking pentasa which I am still taking. I was lucky that they found before it did more damage to me. I was just diagnosed in April and I learned one thing, which is that no matter what you can always count on friends and family for support
Hi my name is Tia...I am a 14 female, I was diagnosed with Crohn's at the age of 10. I have been very sick with it for many years. I was on as many as 29 pills a day. I missed a lot of school and a lot of fun, with my friends. I stayed very thin and very small for a very long time. I just had the surgery this past May of 1999. I was out of school for the last month. But all and all it was worth it. I won't kid you the surgery was hard on me. And my family. It took me about 30 days to get on my feet. I won't bore you with all the details of the surgery, but I will tell you it was the right thing for me to do. I feel like a new person. My outlook on life is wonderful, everything looks brighter, I can enjoy things I never could before...no matter how hard I tried. I have a pouch now... for how long I am still not sure yet...but my new friend is going to be with me for a while, the Doctors say. I am growing and I have put on weight this past summer. I am more relaxed then every before... and I can't wait for school to start. So if any one wants to talk to me about it you can E-mail me.
I have had Crohn's for 13 years. I was 14 years old when I started to feel the pains. It took about 2 months to find out what I had. I started to bleed and very quickly went down hill. I was just out of 8th grade and high-school started. Adding up all the days I missed around a whole semester of school. I was fat and skinny. The medicine would make me so chubby my own teachers didn't know who I was. When I got sick I lost around 30 pounds in two weeks. I was stubborn and didn't go to the doctor much. I can't say my parents were much of a help. There were nights I felt my body couldn't take the pain and humiliation any more. My whole life I have kept the disease quiet. I still have not talked a whole lot about it. It still brings tears to my eyes to remember what I went through. However, It allowed me to be strong. God did not give it to me but he did work through the disease to teach me much about life. 4 years after having Crohn's I got my whole large colon taken out. I live in a town and state for that matter that does not have a whole lot of knowledge of the disease. Only recently from the internet have I found out about new drugs. I am off and on the Prednisone. I was totally fine for 7 years and only two years ago I started to get sick again. I am now working as a full time youth minister. Crohn's has shaped a lot of who I am today. I encourage all of you to never give up. Use you situation to learn and grow.
Well, the last time I wrote to you was one year ago when I was first diagnosed. I was put on 40 mg of Prednisone and 6 Asacol a day. By November 98 I was off Pred and feeling great. Eventually, my doctor actually said I was in remission. What a great feeling that was! From December to May I had virtually no problems and actually thought I might never have to worry about Crohn's again... how quickly we think we heal. Since June, I have come out of remission and slowly started displaying all the symptoms again. After the whole summer of trying out new methods of treatment, it seems the Doctor has finally settled on one: increasing my Asacol consumption to 9 a day, as well as prescribing Flagyl and Palafer (?) (an Iron supplement). And, of course, the five year old fistulas (which I already had surgery to remove... they came back about 6 months after the painful operation) have started to really act up again. Things wouldn't be so bad if my future was certain... but I'm leaving for University (9 hours away) next week. Coping with a relapse of the disease while away from home is a scary thought. Hopefully by the time I leave, I'll be a bit more confident in my ability to control the disease... hopefully. Once again I must commend you on the site... it is wonderful. You have really helped all of us with Crohn's... Thank You.
I was diagnosed on August 15 - that was almost 1 year ago. I went through a lot of tests and had my appendix removed. The doctors just kept telling me that it was all in my head and that it was a girl thing (yeah, right). I was not getting better at all; at the time I had lost up to 50 pounds in a month. My parents took me up to the Mayo Clinic where they did tests and they came back and told me the news... it was Crohn's. I started to take up to 30 pills a day. I went back home; the meds were not helping me at all. I went back up to Mayo where I had 14" of my small intestine removed. Now I can say that I am doing a lot better. I only take 3 pills a day, and I have had no problems yet. I am only 17 and had this for a year, but I have learned to live with this.
I think your website is wonderful. I was lead here because I was searching for info on CD, because my sister is undergoing tests to see if she has it. I am so worried about her. I've known two people that had the disease and both went through tough, debilitating times. And the prednisone did a lot of damage. My sister is 22, in graduate school for audiology. She's worked full time and gone to school. She's such a hard-working, smart beautiful young woman and I'm in fear for her, because we don't know much about CD and what happens to a person. Her natural mother had part of her colon removed because of cancer, and we don't know if that was some kind of hereditary thing, or if it's even related. As you can see, we're all just basically confused right now. If she is diagnosed, I'm going to make sure she knows about this website. It's very informative, supportive, and offers a lot of positive things. Thank you for devoting your time to something so helpful and worthy.
In October 1997 I started getting annoying pains in my bowl and suffered diarrhea / blood. I was only 11 or 12 then and was mystified by these symptoms and was so terrified I didnt mention a think to anyone. Time passed by and the symptoms continued and got worse. My parents started to notice I was going to the bathroom more often. They eventually found out and took me to the doctor's in February. The doctor at first thought it might have been piles but when that was ruled out immediately he knew it might be Crohn's. I was told to go to the the hospital that very day. I was very afraid I didn't know what was going on. I went up to Crumlin Hospital in Dublin and was checked in. Very fortunately one of the leading doctors in the world at Crohn's and Colitis was stationed in Dublin (Prof. Drum). He had worked all over the world looking for a cure and causes of it. He was pretty certain it was Ulcerative Colitis but had to make sure. So I had a scope done, and it turned out i had Ulcerative Colitis. I was given tablets called salazoprin and I was given steroids to regain my strength. Thankfully I have not had any problems since and my medication has been reduced. In a years time I will have another check up and then he will decide whether to stop the medication. The prof. is mystified - there seems to be a few people that the salazpyrin works fantastically with and a few where it doesn't work at all. I want to point out a few things too: I lost a lot of weight when I had Colitis but regained a lot when I was put on the medication has this happened to other people? Where I come from there are 4/5 people I know who have this disease in a town of 11000 and it's very rare to have even 1 in a town of 11000, I think what it is is the water in my town its usually brown/gray. No one uses it except when brushing teeth or showers; I think it might have something to do with the disease.
I was surprised having seen your site. You deserve an at-a-boy! I was also ill sometimes (3 operations + many and many other "gifts"...) There was a large risk of new complications. My disease was incurable by traditional medicine. I tried various methods, diets, procedures, etc., but without results. It occurred to me that I needed an approach in health and all elements of health system that must be interlinked. I had started to strive for health and created my personal health system and now my health is OK. Now I help everyone who need valuable advices of health. I believe only in natural healing and do know it's powerful strength in curing diseases. I even know people having won the fight with cancer. They use the same methods as me.
My name is David, I am 18 and I was diagnosed with CD three years ago. However, I had severe symptoms, (profuse bleeding, cramping, and gas) a year or so before I went to the hospital and was told I had CD. The reason I finally went to the hospital was that I had lost so much blood I passed out. The GI specialist at the hospital scared the shit out of me, telling me about the wondrous possibilities of fistulas, colon cancer, drugs, surgery, and little plastic bags to replace your intestines. I was depressed for months. My symptoms kept getting worse until six months ago. I had regular intestinal bleeding, an anal fistula, cramps so bad I would lay awake all night, and gas that could clear out the entire house. Then I went to see a doctor who was recommended to me by close friends. He is a chiropractor, kinesiologist, and homeopath. The first thing he told me was that I was so severely allergic to wheat and milk that they affected my body like poisons. He also instructed me to stop eating caffeine and most refined sugar. I followed his advice and the blood in my stool disappeared. After several weeks on the new diet and an array of unusual herbal and vitamin supplements I was on the road to recovery. Anyway--this has gotten to be a long story-- to the point now ----six to eight months after I began my treatment with this doctor I am virtually symptom free, and getting better every day. I gained ten pounds and most of it muscle. I urge any one who has CD to seek out a reliable chiropractor and kinesiologist, which can be difficult, because some chiropractors really are quacks. The modern, traditional western medical field offers people with Crohn's too few treatments and options.
Go back to August 1999
Return to Teens With Crohn's