From: LeahThanks 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 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. "back@last" 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 your help, and your mail!
From: LeahI came across your website for "Teens With Crohn's." I must say it is a great help and encouragement to those who have just discovered they had Crohn's and who are trying to figure out what to do. I was diagnosed about two years ago with Crohn's and since have been doing a lot of research.
From: ShannonI just want to thank you for a wonderful, informative website. I am a child life specialist who works with children with various IBDs. I spend a lot of time working with teenagers. I am so glad that I tumbled upon this website so I can give to my patients and their families. As a sufferer of colitis and celiac disease, I can empathize where these kids are coming from.
From: AnnieI guess I don't really fit into the age group of this website as I am 30 years old but, I do have one thing in common with it and that is Crohn's disease. I've had it for 7 years now and the reason why I am writing is because I did not find my medication among those listed in your treatments section. I take Purinethol (a chemo-therapy treatment given to children with Lukeumia). I have never felt better. I, like many others have gone through a slew of different medications starting off with : Asacol, then to Prednisone, then to Methotrexate and now to Purinethol. It's been 2 years now that I am on this medication with no relapse. I'm keeping my fingers crossed.
From: AmandaI have been looking at your page for a while now and its so awesome...I am 15 and was diagnosed last year this is the hardest thing that I have ever had to face....your page helps a lot. Thanks so much
This is my story. I have read yours, and it was very similar to my situation. It felt like you were there during my experience and were documenting my OWN life! I would like to thank you for making the Crohn's website.... it was very informative for me. I hope I can help myself get through my disorder.
My story begins on Friday April 19th, when I nearly fainted at work and had to be sent to the doctor. it was, what I was told, near-dehydration due to the strep throat I was ignoring. I was over-working myself and extremely stressed, with university exams just finished. My throat was hurting and yes, the swab said I had strep, but I couldn't figure out why my stomach area was in so much pain. my only comfort was crawling up in a ball and slowly rocking myself. My stomach pain increased and by the Monday after I was having diarrhea. Not new to me, since diarrhea has been a problem of mine since I started university in September. I once had it for a whole month during my first set of exams. So I went back to the doctor, who said it was the antibiotics I was taking for the strep that were hurting my stomach. he gave me different pills. By Wednesday morning I was in so much pain that I was about to bang my head against the wall to pass myself out...at least I wouldn't feel it anymore!
My mom took me once again to the doctor, who again blamed it on the antibiotics and gave me yet another dose of another kind. I never started that dose. Right after I left the hospital the blood in my diarrhea started. Little by little at first, but soon more and more... and as the blood increased so did the pain. Being desperate and sick like a dog, I went to the closest hospital and waited my turn to be seen. It took hours and hours, with each passing like seconds for me, huddled in the chair and dashing to the bathroom with what little strength I had. Finally I was seen, and the doctor got saw what was coming out of me, which at this point was almost pure blood. the look on his face was that of shock. I can't recall exactly what happened next, since they did give me morphine (FINALLY) but I ! remember getting a hospital band being put on my arm and being told I was being admitted. This was scary for me, since I had never spend more then a few hours in a hospital. but it had to be done or I was told that the lack of blood I was experiencing would kill me if not treated. I was suffering from bloody diarrhea, extreme pain, and dizziness. it was horrible... I went to the bathroom every 10 minutes and it was like Niagara Falls...only someone replaced the water with blood. I spent 2 days in the emergency ward (the hallway. actually) drugged up on morphine for the pain and pulling myself out of my stretcher twice an hour to go to the bathroom, dragging my intervenes with me, which was a long walk away. And being dehydrated and exhausted didn't help my journey much.
I got my room on Friday, so not being in a hallway and having my own bathroom close by cheered me up a bit. I prayed to get better. It ! didn't seem like it would happen at the time, but I made what the doctors called a speedy recovery, being sent home days before schedule, on Tuesday afternoon. finally Niagara dried up a little, the bleeding stopped, and I had some energy back. I have 2 specialists and they don't know what's wrong with me...but they are pointing strongly to Crohn's. I was told it could be Crohn's on April 29th. I went through numerous tests, including blood tests urine tests feces tests x-rays and of course, the scope. it took slightly over an hour and thank god I was sedated, because when I woke up it was the worst pain of my life. my upper intestines, they found, were extremely bloody and inflamed. so badly that it was Tuesday until my first taste of real food, being on intravenous and Jell-O ONLY for a week. and I was not eating before that either, due to the strep throat that made swallowing unbearable. that made almost 2 weeks on limited food.
Since I have been home I have experienced tenderness in the intestine area and pain after food or before a bowel movement, and I am very very tired. I take naps during the day, which is rare for me since normally I'm such an energetic and active person. My bowel movements are still not normal but I am being very careful of what I am eating and I take my 14 pills 4 times a day religiously. I am on Pentasa, metronidazole, and a very rare and expensive drug called vancomycin (thank god for Canada's health plan and my dad's health insurance...this stuff costs $100 a day!). I start summer school next week and I really hope that I am better by then. but I will not let stress get to me this time!
I just wanted to say thank you for posting your story on the web. I'm an EMT
in Boston and last night I transported an 18 year old boy who has just been
diagnosed with Crohn's Disease to the Beth Israel Hospital. I didn't know what
the Disease was until I looked it up. Coming across your page, I've taken the
time to read it and understand the Disease a little more, not only for my own
knowledge, but to understand why the poor kid I transported looked like someone
just beat him to a pulp and stuck a barbed dowel up his butt. If I had a
printer, I would print your story out and bring it to him. Maybe I’ll call his
parents at the hospital and give them your web address so they could read it to.
I'm 19 years old and I have Crohn's. I was diagnosed when I was 12. I've had 2 surgeries. One was an emergency surgery (May 2001) my intestine had a stricture that had perforated and leaked infection and bathroom into the rest of my body getting everything else infected to. I went to the emergency room because my belly hurt so bad I couldn't breathe. The surgeon was just a general surgeon and thought my stomach had a hole in it and was leaking gas, so he started the cut on my chest and made an 11 inch cut. I didn't even know what was going on I was so doped up from the pain medicine they gave me when I was admitted. When I woke, I had a colostomy. Which really wasn't so bad because I felt so much better. I stayed in the hospital for 3 weeks, with Prednisone running into my veins, was I glad to go home. The next (January 2002) I'm glad to say was a reversal of the colostomy, and another scar ( 3 inches). The worst part was finding a surgeon to do the! surgery , I didn't t have any insurance. many thanks to the university of Louisville. I'm doing great now, I take 16 Pentasa a day and 50mg of Purenthinol a day (when I can remember to). my advice to anybody is to have the surgery if needed its better than the pain, and cling to your imperfections, there what makes you unique.
I have been of member of your Website for about 3 years now. Anyway I just
wrote to tell you that your Website was mentioned on Australian T.V today. The
show Beauty and the Beast which is a program where people write in for advice
etc was talking about Crohn's Disease and a young girl wrote in asking for
advice etc, and a doctor who was on the panel said I know of a great website
called Teen's with Crohn's Disease run by a person called Matt Green. She had
nothing but praise for you website. Anyway I just thought I'd write and tell you
that I think you've done a great job on your website and a lot of other people
in Australia agree with me also.
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