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. "MP2000" 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!
My name is Karen I'm from Ottawa, Canada and I was diagnosed with Crohn's Disease on May 20 1998, two weeks after a had my appendix removed. It has been over a year since I was diagnosed and I'm on Pentasa four times a day, I consider myself lucky that I'm not on steroids. For four years before I was diagnosed I would have stomach aches every few weeks and the doctors told me that it was nothing, they didn't even consider that I had Crohn's until I had my appendix out and they discovered what was really wrong. I had a hard time telling my friends about it and I could tell that they felt a bit uncomfortable too but they were pretty understanding. This fall I'm starting University and hoping that my health stays under control. I visited your web page when I was first diagnosed because the doctors wouldn't tell me much about it, they said that I should do my own research. I think that your web site is awesome and I really enjoyed reading about other people's stories, it's nice to know that you are not the only person out there with the disease because sometimes that's the way it feels. Good luck in the future with your site!
Hi there, my name is Sherie and I recently came across your web page for the first time. I am a 17-year old girl from Australia and I have had Crohn's for 3 years now, however, it has only been treated for 2 years. I spent a whole year feeling sick and depressed because no one knew what was wrong with me. I had blood tests and heaps of specialist appointment, also 2 barium x-rays. Finally, after my 2nd barium x-ray, I was diagnosed with Crohn's Disease. In the beginning, I was put on Mesasal and Prednisone. I was taking 50mg of Prednisone a day, as well as 10 Mesasal tablets a day. I was doing a lot better within days, however, after taking Prednisone for only 3 months, I was taken off it immediately. The reason being was because it weakened my bones a great deal. It drained a lot of calcium out of my body, thus resulting in my weak bones. Because my bones were so fragile, I suffered from a stress fracture in my lower spine. It has been a little over a year since I fractured my spine and it's STILL trying to recover! I was taking Mesasel by itself for a long time, the only side effects I got were dry skin and minor things like that. However, my Crohn's flared up not long ago because Mesasel wasn't strong enough for me to take by itself. I have now been put back on Prednisone, but only 7.5mg so that's not too bad. I'm also on Immuran but because it doesn't work straight away, I haven't felt the effects just yet. Once Immuran starts working, I'll be taken of Prednisone which I'm happy about. Right now, I'm feeling fine but I don't stick to a certain diet so there's a lot of foods that upset my stomach. I know that there's a lot of things that I'm eating now which I shouldn't, but I admit that I'm not strong enough to stick to a new diet. So my health could be better if I ate better foods, but I can't.
In June of 1997, a week before school was dismissed I began having stomach pains. It all started when I abruptly awoke at about 5:00 am one morning to feel sharp pains in my abdomen, unfortunately I brushed it off as a gas pain. Hours later barely able to walk, the pains hadn't eased, in fact they had worsened. My parents took me to the doctor, there I was told that I had a mere stomach virus. Several days later the pain hadn't subsided and I wasn't eating, so I was taken to the emergency room, there I was also diagnosed with a stomach virus. Luckily the medicine he prescribed eased the pain, and I was able to attend school half a day to complete my exams. Two days after school was released I had a fever of 103 and I was unable to get out of bed, because I had already been taken to the family doctor and the emergency room twice, my parents took me to a clinic about 30 minutes away. There the doctor told my parents of my high blood count, which indicated that an infection was present. My parents were instructed to take me directly to the emergency room. I was given every kind of test under the sun, including a barium enema, upper and lower GI's etc. The next morning it was finally decided, after almost two weeks of excruciating pain, to perform exploratory surgery. That's when they found out I had Crohn's. Dr. Lewis removed 8 inches of small intestines, my appendix and part of my colon. I am now on daily medication, I take twelve pills a day. However, I still have pains ( not as nearly as bad as they were ) and the diarrhea. But after being in the hospital for 8 days and having a catheter, tubes in my nose and throat and a tube in my stomach to drain the infection, I just thank God that I am here.
I was diagnosed in June 1970 after a year & a half of pain. One Doctor told me the pain was in my head. Well the "pain in my head" got worse before they found the Crohn's. Years went by where I was tortured by the fact that there was no cure (back then there wasn't even relief from the symptoms). In February 1988 an operation for a blocked intestine was necessary...which is common with Crohn's I found out. The next operation was needed in August 1998...botched...so another was needed in March 1999. Now 7 feet less of intestine and 2 1/2 feet less of colon...I am lighter and enlightened. At 56 years old, I have lived with it for 39 years, told I was lucky for surviving so long, and now still fight the ongoing gruesome stages. How do I cope? I live each day to the fullest. Thanks to wonderful friends & lots of prayers...I know I am in God's hands. Each day I learn something new about Crohn's...from great sites and wonderful people just like the ones here...and give hope that there are strong-hearts who beat the average.
My name is Melissa Kennedy and I wanted to thank you for your site. My daughter is not a teenager yet, but she was diagnosed Aug.28,1998 with Crohn's Disease. I had been in a head on collision and was recovering from massive injuries and was too worried about my own recovery to notice my child was sick. She came home from school and her feet were swollen so I took her to the hospital, they took blood and she only had 1% blood left in her body. They said she shouldn't be alive. At first they thought she had leukemia, and her heart was swollen from trying to pump that little amount of blood. They had 6 different pediatric specialist and could find nothing until a gastro-doctor came in and said he wanted to run tests. Since then she has to go in every other month for a colonoscopy. They can't seem to get the bleeding under control. However, she is in good spirits and makes good on every day of life. They have just started Remicade infusions, but they will only do 2 hours every six weeks because she is so small. Her Crohn's is in all parts of her intestines and esophagus so there will be no surgery available for her. Anyway I just want to say thanks for offering a place for her to hear other stories. I hope you are well and may God Bless You.
I am 21 and a fellow Crohnie. I really wanted to thank you for your site. I've been frequenting it for about a year now. I recently was in the hospital for 10 days, and my dad kept me sane by bringing his laptop so that I could communicate with others via your site and email. Then I had Remicade. After years of being told I was "anorexic and anxious", the diagnosis actually came as a relief. The only problem is today I get violent flare -ups without much warning. This makes it hard to schedule travel plans and live a "normal" life. Having access to all of you Crohnies out there has been a terrific asset. Thank you all!!!!
I remember having surgery June 8,1998 to remove a dermoid that had grown to the size of a grapefruit on my right ovary. They took that out, 3/4 of my right ovary and a cyst in my left ovary. I thought that the pain had finally ended. Two weeks later I started to get, "flare-ups" and it took the doctors until late April to diagnose me with Crohn's disease. I am happy to say that I am taking Asacol and feeling great except for when I get a flare-up. I think its great to know that there are people out there who share the same pain. I even wrote my ten-page research paper, for chemistry, on Crohn's disease! I can tell you that I taught her many things and ended up getting a 99! Well, here is to all of us who can still smile and carry on our lives even though we have an awful disease!
Hi. My name is Carmen and I have had Crohn's disease for nine years. I am 21 now, and have had several flare-ups and remissions over the years. I just found this web page, and it is so nice to realize that I am not alone in having this disorder. High school was hard, b/c I never knew how to tell my friends why I was becoming a skeleton, and always felt I had to cover up the constant pain. I've taken several medicines, but now I am on a steady diet of Prednisone, Asacol, and Pepcid. Everyone says that Prednisone has bad side effects, but I think the worst is the fattened cheeks :). Thanks for creating this page. I will definitely be returning, even though I am not a teen anymore :).
I was browsing on a whim about some Crohn's websites, and I stumbled across one I wished I'd found years ago. But, with hindsight, I'd like to share some stories of my own. My latest surgery was about 7 months ago, December 26th, 1998, and it pretty much ruined Christmas and last semester. With the stress of college, everyone (including myself) agreed that rushing to catch up on the work wouldn't help in my recovery. I did a lot of thinking about how I should plan for the rest of my college career and I figured that I need not be in any hurry and not to overload myself. I seem to look at a situation and realize that I 'could' cope with any problems rather than taking another step to think of the impact on my health. The long days of class, and the stress of getting work done seem to be my greatest challenges. Luckily, I've been wonderfully healthy since December. My biggest pet peeve is the frequent bathroom trips, especially while being on campus and not always within a discrete distance of a restroom. My girlfriend understands, as she was by my side during my last surgery and has witnessed my recovery. But some of the people at my part time job become frequently annoyed with me constantly leaving to "go". Grrr... My diet is pretty weird. I can eat Taco Bell... every so often. I can eat pizza most of the time. The general lactose, or milk, aversion doesn't seem to leave me in cramps as much as it sends me to the bathroom. It's the fibrous stuff that gets me writhing in pain. I can hardly look at corn anymore... Although I can eat a raw apple off a tree and be fine. I dunno... Things that have definitely helped: Crossword puzzles & CDs for bad days, Movies and model kits for uncomfortable days, and Ice pops (LOTS!) for that uneasy feeling.
I have a 16 year old son with this disease and he is not a candidate for surgery as it is in his large and small intestine and stomach. Pills do not do much and steroids have a been pretty much a constant thing for him in the 2 1/2 years since his diagnosis. He is so depressed and not wanting to join life. Counseling and antidepressants do not seem to help him and it is breaking my heart to see him with drawing from life. I showed him this website and he is not interested in reading it. Any suggestions would help! I have looked high and low for answers for a place to help him get on with life or suggestions on how to help him.
Hi, I was diagnosed with Crohn's when I was 16; that was 22 years ago. They did not know much about it, but then my Dr. recommended me to drink a lot of milk as to put on weight - what a big mistake that was! I used to weigh 44 kilos (that is light for someone who is 180 cm tall or 6 ft). What I found to help was I gave up smoking and try to be positive. I heard it might be due to stress. I believe I had a very stressful childhood, and now I weigh 85 kilos. I still suffer sometimes. All you chronies out there: don't give up!
Hi There. It was great to find your web site. I was just diagnosed with Crohn's. Any information you can send me will be useful. I am just eager to feel my old self again. I am also afraid to provoke these horrible symptoms again.
I would like to share with you the experience that I've had since I was diagnosed with Crohn's disease. I was diagnosed with Crohn's disease on August 30, 1998 (the day my life changed forever) At first it was hard to get up the courage to tell my friends about my disease, but I finally did. They were all very concerned but I explained it to them the best I could, without going into too many details. I feel that I am pretty lucky so far, I haven't been put on Prednisone (yet) I finally am confident about what I look like. I've somehow been able to obtain perfect attendance for my first two years of high school. My family has given me a lot of support. And for that I will be grateful, especially my mom, she is the one who I tell everything to, when I'm feeling bad or anything. I love her so much!! This website has taught me a lot too. I now know that whenever I'm feeling bad I can always come to this website to read others' experiences. This website also help me to understand my disease better. Thank You!!
My name is Ann. I was diagnosed with Crohn's when I was 10, but I was sick for 2 or 3 years before that. I'm 17 now and next week I have to have surgery for the first time. I am quite scared, but the pain is so bad now that anything would be better. My sister found this site and told me about it. I think it's a great idea. The past two years were really awful. I lost 50 pounds and was in great pain whenever I had to go to the bathroom. I was so angry because the doctors for some reason thought I was anorexic, even though I was complaining of stomachaches, rectal and fistula pain, and anyone could have told you I was trying to eat all the time, but it made me so sick I couldn't eat much. After changing doctors in February, I was in the hospital for 8 days while they did a colonoscopy, barium X-rays, and put a Groshong catheter in me to help me gain weight. I was also given that new drug, Remicade, which really helped. Unfortunately, this past week another colonoscopy showed that I have a massive ulcer in my rectum that needs surgery. Colostomy, here I come! Thanks for letting me vent.
Extra Strength Black Walnut Hull Tincture, Wormwood, and Cloves = Parasite Killing Program. This herbal program has reduced my inflammations due to Crohn's disease drastically. I have had Crohn's disease for over 20 years. After taking Prednisone for more than 10 years, I had part of my intestines removed surgically. Just 3 years later, I started with major intestinal inflammations once again. It had taken me an entire year to slowly (1mg. at a time) get off the Prednisone immediately following the surgery. So, I was not about to go back on that drug even with the preceding relapse. I tried Pentasa but did not like it. So I started reading books in alternative medicine about intestinal diseases. I found several versions of this program in different books but, decided to try this one from Dr. Hulda Clark's Book, "The Cure for all Diseases". Although many in the media have claimed this author's books to be offering some sort of miracle cures, I found her work to be genuine and serious, even though I may not agree with every one of her suggestions. I have studied scientific methods in college, and have earned a law degree. I do not believe in miracles, and I doubt this author does either since, she is a serious biologist and physiologist. When I followed this incredibly easy program, I was able to reduced my intestinal inflammation significantly in the first 2 weeks of the program. By the 3rd week the inflammations were gone. I continue to take these herbs (which one does not have to get from the author's book) once a week as suggested. I also stopped eating chicken (had given up red meat long before bec' it was too difficult to digest) during the 3rd week of the program which helped. The program starts out with a gradual increase of the herbs during the first 2 weeks. If my memory serves me correctly, I think it's by the 3rd week that the once per week dosages begin. The herbal program is as follows: 2 teaspoons of Extra Strength Bl. Walnut Hull Tincture in about 4ozs (I use 6-8ozs) of water. I drink this with 7 capsules of wormwood (one at a time) very slowly and intermittently. It takes about 10 minutes because I stop and go several minutes apart. Then, I take the 3 clove capsules (which always cause a belch or too) with the remaining tincture mixture. The tincture with the alcohol works much better than the one without, but, it must be taken slowly, and on an empty stomach or, an half an hour after taking Questran. This program is always done in the morning which can cause dizziness due to the alcohol (a substance I otherwise stay away from). If one takes it with food already in the stomach, it can cause a little nausea. However, I can eat 15-30 minutes after I take it without getting nauseous. It also helps absorb the alcohol. The program says to take these herbs once a week for the rest of your life. There have been weeks when I've skipped it. If I have eaten any meat or poultry during that week, I begin to feel the inflammations coming back. I have not had any major flare ups since I started this program over 2 years ago. These herbs have not prevented any diarrhea but, they most definitely have kept me out of pain, the hospital, and away from the surgeons. I do not know whether these herbs are killing parasites (they probably are) or killing an intestinal yeast overgrowth. I tested negative for parasites many years ago but, the doctors only test for certain parasites and not others. I also am not sure that parasites are the cause of this disease but, they may be a by-product of an ulcerated intestine which causes the inflammations which lead to great pain, malabsorbtion and surgery. Now that I have found a way to prevent the inflammations, I am working on getting rid of the diarrhea. I currently use Questran (a perscription powder) by mixing well 1/4 - 1/2 teaspoon in a full 8oz glass of water, letting it stand for several minutes, drinking it slowly by stopping and going, and then waiting a good 30-45 minutes before eating to avoid trapped and/or passing gas later as my food digests. If I wait too long to eat after taking the Questran, the results are not as good, if, at all. If I take too much, such as a whole teaspoon, I get a terrible headache probably bec' it causes constipation or a slight blockage. I am going to try the combination of Grape Seed Extract Capsules and Pine Bark Extract (Pycngenol) to relieve the problem of chronic diarrhea. I have been taking the Grape Seed Extract - 50mg. twice a day for quite some time. I have always found it useful for digestion. However, I read that bec' it is a fruit sugar, one should go off it every now and then to prevent the possibility of causing a yeast build up. I bought the Pycnogenol separately and hope to try it soon after my breakfast instead of taking the Questran. If that doesn't work, I'll try taking it before breakfast w/ one of the Grape Seed Extract Capsules. If the Pine Bark doesn't cause the passing of smelly gas, I will gradually increase the dose starting from 25mgs to 100mgs. I read on the net that one can take as many milligrams of the pycnogenol as one's weight for, I think, once per day. One must be careful not to produce constipation or a blockage. Speaking of blockages, I've read that the Herbal Tincture; Turkey Rhubarb , is excellent for relieving intestinal blockages. Remember to keep all tinctures in a cool place and out of the sun (that's why they come in brown bottles). After I open my tincture bottles I always preserve them in the refrigerator usually in a container to keep them from falling all over the place. I sometimes put them in the egg holes on the door. Good luck! But just remember: you are your own best doctor so don't hesitate to do a little research yourself in what ever approach you decide to take.
Okay, I just found this website and I can't believe it. I finally have a place where I can access information about people experiencing the same things as I am. I am a typical story, I am 23 years old and on the verge of finally being diagnosed with Crohn's. I have been sick with stomach problems since I was a kid (eight) and I have seen more and more doctors that I care to remember. When I was younger I was told that I more than likely had IBS and I was put on a high fiber diet. (I don't know if you have tried this but eating ten grain bread and lettuce like it was going out of style) did not help. I was either nauseous, had severe diarrhea or was throwing up all the time. I managed to live like this until I was 19 (11 years if you can believe that) and then I could not take it anymore. I saw my family doctor again and he finally referred me to a GI specialist. He did a small bowel biopsy to look for celiac disease, said he found an ulcer. I spent a year on Losec and Zantac only to find out that I did not have an ulcer. After that year ended, my family doctor said he suspected that I was a celiac after all and I went on a gluten free diet for almost a year. My symptoms went away and then all of a sudden, I graduated from college and started a new job and BOOM!!! They came back, only much worse. I missed countless days of work because I was in too much pain to move, I was sick all the time, and I experienced hot flashes constantly. I was refereed to another GI specialist who did another small bowel biopsy and again found nothing. Although blood work showed a low iron count and I was not absorbing Vitamin B-12 at all. I again went back on a gluten free diet but I just became worse. Two months ago I saw another GI who looked at my test results and asked me a million questions. I fit the bill for Crohn's perfectly. Right down to being tired all the time, canker sores (50 at a time at some points), low weight etc. Along with all my other symptoms and the fact that my uncle and my aunt both have Crohn's she felt it was time for more tests. (You think?!) I had a barium enema right away (they put a tube in my nose and down my throat and filled my intestine directly so I did not have to drink it) and I have a colonoscopy next week. I am pretty nervous about it but more than anything I am so anxious to figure out what is wrong with me. If one more doctor tells me that it is in my head I am going to scream. As it is now I live constantly on Imodium AD just to get through the day. If you have any suggestions on what I can expect right after being diagnosed that would be great. I think this site is great...I have bookmarked it already.
I have just read almost your hole web site and I have to say that it is very encouraging. My daughter Georgina has been in hospital for the last 2 weeks, having tests and feeling very poorly. She has lost 2 stone in weight or 24lbs in American terms over the last few months. She has just been told, after having all the tests, that her Crohn's is severe and that she is likely to be in pain for the rest of her life and that if it gets any worse, surgery may be the only solution (not a happy thought as you will appreciate). Georgina is almost 22 years old and is on 40mg of steroids a day as well as various pain killers and is now about to start another medication that is like a suppository except that it is in liquid form. The steroids are making her hands shake so badly that she is finding it difficult to hold a pen and she is continually worrying about work etc. I have told her that she must have a positive attitude to the disease and should learn some relaxation techniques. Do you have any suggestions? Her doctors have told her to avoid eating the foods which we are told are good for us and to eat all the stuff that makes the rest of us fat but in most stories people have not been allowed these foods because they made them suffer. As a worried mum, I need all the help I can get to enable me to help Georgie.
You certainly have set up a wonderful page. It is so important to have as many resources as one can when trying to fight this terrible disease.
I'm considering putting my teen on this acne treatment, but have heard from a friend that many people with Crohn's have a history of using Accutane for acne treatment. Has anyone ever heard of this commonality?
Please send me any information that you can share with me on Crohn's. I have just been diagnosed and am very scared. I am 19 years old. Thanks so much for your time.
I love what you are doing with the site. I just stumbled upon it today, and it is a lifesaver!! There is so much wonderful content, it is probably one of the most helpful resourceful sites I've seen. Keep up the FABULOUS work-- really, I mean it. You don't understand how much your site is helping me. Thanks so much.
Hi There. It was great to find your web site. I was just diagnosed with Crohn's yesterday. Any information you can send me will be useful. I am just eager to feel my old self again. I am also afraid to provoke these horrible symptoms again.
I just wanted to say, Thanks for setting up this website. I have been searching the Internet for hours and finally came across this site. GREAT JOB!!! I have read a lot of people's experiences and can feel their pain, however I still haven't been diagnosed.
This is crazy; I have had problems with diarrhea since I was very young. I am 26 now and was diagnosed with a gastric ulcer when I was 16. The medicine really didn't help, but my parents didn't really believe me, so like others, I thought it was in my head. I continued with the episodes of diarrhea for years, then I went to the other extreme where I was constipated all the time. I traveled full time for 8 months and had a lot of problems. I had a laproscopy (sp?) done for female issues and my OB/GYN said that he didn't find endometreosis, but he did find some small adhesions to my colon. Then he said that it was a 'touch' of colitis. However, I didn't receive any medicine, etc... Two Thanksgivings ago, I had the diarrhea and throwing up all night long and continued into the next day. It was awful. They then did the colonoscopy and 'found nothing', the last year or so, I have become irritable, every joint hurts, I have diarrhea episodes every few weeks or so. This last week was horrible and I am still not 100% again. I have missed 5 days of work in the last 3 months, which is a lot for me. I had blood work done about 6 months back because my joints hurt so bad and were swollen, the doctor said I might have a touch of arthritis, so I continue to take Aleve. This helps with some joint pain, but now I am nauseated all the time and am taking allergy medicine and am still sick. My stomach hurts all the time, I can't wear a seat belt for very long, any pressure anywhere on my body (clothing, etc...) hurts. My boyfriend thinks I am crazy when I tell him that his hand hurts when he puts it on my leg for a long period of time. My internist is having me take stool samples this week and is sending me back to the gastro. doctor. I am waiting for my appointment.
I tell you what though, after reading the symptoms others have had, I don't feel like I am crazy. I am just tired of going un-diagnosed and am ready to get better. This is ridiculous. I don't know if this is what I have, but I can identify with just about everyone's experiences so far. ugh.... keep me in your prayers that they at least diagnose me.
Well it was the spring of 1996 a week after spring break and it was time for school to start back up. Sunday night I started getting bad stomach pains and running to the bathroom constantly. So that Monday I made a doctors appointment with my family doctor. She examined me and passed it off as a stomach virus and gave me some antibiotics. One week passed...Two weeks passed...and I wasn't feeling any better so I went back to the doctor and she scheduled me for a barium enema test. Well when I went to take the test I couldn't drink the stuff because I was in so much pain and that stuff is just so nasty!!! But anyway I was rescheduled for the test and I drunk the nasty stuff and a few days later my doctor called and told me that she wanted me to see a GI doctor. So like a week later I met with my GI and was told that I had Ulcerative Colitis. This was the first time I had even heard of this disease. No one in my family has had a history of this disease and I did not fit the mold in which the disease usually forms. Not long after my visit with my GI doctor I was hospitalized for ulcerative colitis I stayed in the hospital for about five days. Finally I got better but I missed the later part of my senior year of high school and was not able to walk the stage. So now it seems like every winter I get major flare-ups. I don't know if it is because of the weather change or what but from November-March I get flare-ups. I guess I'm kind of lucky because I don't have the problem with certain foods like some people do. I can basically eat anything I want. Just about a year ago I had to take a stupid scope test and I found out that my colitis had switched over to Crohn's. So now I am on Prednisone (because my GI doctor is scared that I might have a relapse without it) Asacol and 6-MP. I was very, very skeptical about starting the 6-MP because of the many side-effects associated with it but I trust my doctor and he won't steer me wrong. It's just a pain going to get my blood checked every week (because 6-MP lowers the red blood count) but other than that I haven't had any problems with any of my meds. Right now I am doing good no flare-ups thank the lord!!
I just finished looking at some suggestions you had posted about different ways to tell your friends. I was diagnosed with Crohn's disease during my freshman year of high school, it seems hard to believe that it was so long ago. I missed a lot of school due to surgeries and it seemed that people were always asking me what was wrong. I always got by saying it was a "stomach thing" (not too many people wanted details after that). When I went into college it was a lot harder having to explain to 3 other roommates why I was always 'popping' pills. This past year was a tremendous learning experience and I was lucky to have such great roommates, they became part of my family and even watched out for my health. It's nice to know that there are so many people in this world who you can draw support from. Thank you for putting so much time and effort into your web page, It means a lot to me as well as many others. Also, congratulations from graduating from high school, I hope you are looking forward to going to college, but more importantly congratulations on your remission. That's all the rambling I can do at one time, so goodbye!
I believe I wrote to you several years ago when I was first diagnosed. I remember reading your story of Crohn's back then and believing that I was reading my own. I do the same again now. This is only my second flare. For three years, Pentasa and Zantacs (along with plenty of prayers) seemed to do the trick. I finished high school without a hitch. I graduated in '98 and just finished up my first year at the University of Florida. The entire school year, Crohn's was wonderfully behaved, something that I was quite worried about this time last summer. Yet, thankfully, I didn't have any problems with Crohn's while I was in Gainesville. Only since I've been home have I had any upsets. I've already endured the upper GI, am back on Prednisone, and now I am awaiting an endoscopy. I came close to feeling sorry for myself, but finding your page again kept that from happening. Your optimism restored mine. I truly have nothing to complain about because I have been so fortunate in the past. I suppose I just forgot that flares come with the territory. Even though I'm sure you're swamped with identical e-mails to this and probably have no recollection of me writing in the past (I don't even think I had this e-mail address back then), I just wanted to say thank you again. I'm sure your page reaches a lot of people. Congratulations on all your accomplishments...especially graduation and the Good Kid segment. I did the homebound thing for awhile too so I know it's no small feat to keep your grades up like you did and Laural Porter does the Channel 2 news in my hometown so I'm familiar with the segment. I wish you the best as you go off to college. You truly deserve it.
You have done marvelous work and it is good to see so many helping others. I am not young and my ailment although similar to yours has other ramifications. But I cannot eat any dairy products and many times get sick due to hidden substances not advertised. I do get symptoms that are different, like swelling inside and out. Anyway, I manage controlling what I eat and use, even soap and creams may affect me. I am able to eat eggs and sugar which is a great help becauseI love desserts.
Your site has been a Godsend for parents of teens with Crohn's. My son, Chris, was diagnosed last February with Crohn's after 4 weeks of violent vomiting, diarrhea, and a weight loss of 35 pounds. Chris will be 16 this August, but he's never been a "meaty" kid. At 6'2", he was a wiry, but strong 160 pounds. By the first of February, he'd dropped to 125 and his doctor finally admitted Chris didn't have a particularly virulent flu bug. The colonoscopy revealed Crohn's in his entire intestines, as well as part of his stomach. Worse, he had a tenacious CDif infection that landed him in the hospital for three weeks. That first week was touch-and-go, as Chris had dropped to a skeletal 112 pounds. Here is where your site comes in. I was desperate to find information about IBD/Crohn's, and doctors were helpful when it came to symptoms and treatment, but not the emotional and psychological aspects of this disease. I downloaded many letters and testimonials from other teens with Crohn's for Chris to read and discuss with me. He was able to explain his disease to his friends, learn about diet, and comprehend the effect certain medications would have on his body. Once he was home, he had a TPN and was on massive doses of antibiotics, Prednisone, anti nausea meds, and vitamins. However, he was back at school by April, and scaled back to Asacol and vitamins. I'm sure that his positive convalescence and recovery were due in part to the information and encouragement we found on your site. Presently, Chris experiences some discomfort, but quite minor compared to the excruciating cramps, nausea, diarrhea, and enervation he had earlier this year. He often checks this site for notes from teens like himself about coping with the other side effects of the medications, ie. acne. This diagnosis has been very discouraging for Chris because he has hoped to get into the service after high school. Perhaps your example with nudge him toward considering college upon his graduation. Again, I'd like to thank you for creating such a positive resource for parents as well as teens.
I've been a proud owner of Crohn's for about a month now. Last semester at school I was constantly tired and loosing weight like a mad riot. I figured it was just all the stress and pressure that was causing it, and being from NY and going to school in Virginia, I decided to wait for the semester to end and then get checked out. I went through that terrible colonoscopy test, not a pleasing experience to say the least. I also had the pleasure of drinking barium. Its pretty hard to accept that you have a disease such as CD at the age of 20. Hard core props to you though for a really awesome page. It really is comforting to know your not the only one on earth going through the same things I am. Take care and may God Bless you.
Go back to May 1999
Return to Teens With Crohn's