The Feedback and Experiences Page: March 2000

Thanks 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. "UltramFlare00" 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!

From: Steven

My son, almost 13, has just been diagnosed with what the specialist believes (80% sure so far) is Crohn's.  He thinks it is a milder version of it.  It certainly is nothing like what you've experienced thus far.  He's just had several bouts of abscesses with no pain (except, of course, when they remove them!).  I'll give him your URL so that he'll have a source of information to go to when he wants.

From: Jay

I am now 20 years old and a sufferer of Crohn's from Australia.  I was diagnosed in February of 1997.  I have been in and out of hospital 3 times, had 2 colonoscopies, a barium enema, been on all the drugs (mesalazine, prednisolone, imuran, etc).  I have just returned from my latest stay in hospital where it was found that there was an infection in my ascending colon and ileum.  There was also a very severe stricture in the ascending colon which was causing much pain.  I have lost 10kgs in about 2 weeks.  They have said that there is no alternative to surgery.  So Wednesday is the day.  Just two more days.  I have never been so scared in all my life.  but your website has put me at ease.  It isn't that bad.  I welcome anyone who would like to email me about their experiences or ask me more about mine. 

From: Christina

My name is Christina and I am 16 years old.  I was diagnosed with Crohn's disease in November 1994.  I was at the young age of 10 and finding out this news was devastating.  I was scared and didn't know what was ahead of me.  I found out soon enough:  medications, abdominal pain, constant trips to the doctor.  During the years I have taken a variety of meds:  Prednisone, Flagyl, Cipro, Asacol, Pentasa, iron supplements, and Remicade injections.  Recently, I've been through quite a bit.  Back in August 1999, my gastrointerologist admitted me to Children's Hospital of Birmingham, AL.  I had a colonoscopy done and the results showed that I had a highly ulcerated colon, so my doctor wanted my colon to rest for a while.  I had a midline put in my arm.  I was hooked up to an IV machine with three different IV lines:  one for lipids (fat), one for potassium-enriched saline solution, and one for nutrients.  This was my very first hospital stay, and I wasn't
prepared for what I got.  My IV machine seemed to beep CONSTANTLY through the night, nurses came every 4 hours to take vital signs and at 4:30 A.M. to take blood, and the worst thing was no food!  Every time I watched TV the commercial with the best looking pizza or hamburger would come on the screen.  It was horror, but I got through it.  After 6 days my doctor said I could go on a bland diet.  At the time anything solid to eat was heaven.  I was in the hospital for three more days so my doctor could see if I could tolerate food.  I did, so I was finally discharged September 1 on a low fiber, lactose free diet.  Getting used to this diet was not easy for me, since some of my favorite foods were mac and cheese and grilled cheese sandwiches.  I did manage to find alternatives to lactose, though. (Lactaid milk rules!)  Being in the hospital made me miss a LOT of school.  My school had just started back and I was 120 miles away from home lying in a hospital bed. Even when I did return home, my doctor put me on homebound schooling.  This meant I couldn't participate in school-related activities.  I became
extremely sad, being that I am in the school band.  I missed all of marching season, homecoming, and the biggest rivalry game in my city.  In November I was given clearance to go back to school.  I was SOOOOOO happy!!  I really missed my friends and school.  Everyone was glad to see me back, but they had somehow gotten the idea that I had surgery.  I had to tell them I didn't.  Right now I would say I am doing pretty good.  I feel fine and am currently taking Pentasa, Cipro, Flagyl, Immuran, and Anemagen (iron supplement).  My doctor has finally told me that I will probably have to have surgery in June because of complications with my perianal fistula. I've fought it off with 5 Remicade treatments in the past 10 months, but it has caught up with me.  I'm very apprehensive about the situation, but
Matt's website has calmed me.  The surgery reports I have read have all been positive, so maybe surgery is the best thing in the long run. Thanks for taking the time to read my story.

From: Jerome

Blessings on you for sharing your experiences with Crohn's Disease. I teach public school in Detroit, Michigan, and have the most beautiful African American girl you would ever want to see in my English 8 class. She sits right in the front seat. She is a gem, an excellent writer, and just an inspiration. She is suffering greatly from Crohn's Disease, which she has had since she was in the sixth grade. The tragic thing is, she has not grown any physically since then. She still looks like she is in the sixth grade, and is as cute as can be. This past week she came just one day, told me she was stressed out, that her stomach hurt, that she was facing another major operation (she has had six so far, if I recall what she wrote in a recent composition). The week before last she had an Upper GI. I told her I had gone through that myself. Her test was unsuccessful. Her large intestine is totally blocked. I asked Karletta, "Do you remember what I told you the last time you were in the hospital?" She said yes, you told me, "Don't worry about it." I said, "That's right." She does such good work when she has a few days or weeks of remission, that I let her keep her A even if she doesn't find it possible to keep up with all her work. She will be graduating from high school this coming June. I really love her as a student, and pray for her often, even when I awake in the middle of the night. When she is in the hospital, her counselor always gives me her telephone number, and on my free hour I call her to cheer her up. She is always a delight to talk to.
 

From: Emma

Miserable, nauseous and having a terrible day with not only hideous diarrhea, but a massive output from my external fistula, I thought I'd browse on the web to see if anything new was going on.  I found your site. It made me laugh, it made me cry and it made me realize that there's not only me like this even though it seems like there is.  Matt, I must confess, I am too ancient for your site. In fact I was too old for it when my Crohn's was diagnosed at 23, 6 years ago. Since then I have literally been to hell and back, all kinds of misdiagnosis, multiple surgery, hemicolectomy, temporary colostomy, septicaemia (it's you guys who spell it wrong!) peritonitis, naso gastric feeding, tpn via a hickman line for a year, the works.  But I don't care that I am too old, your pages really made me feel better and I will drop in regularly from now on, so thanks for being out there, we have nothing like this in England.  Good luck for the future, both with the site and with everything you do.

 

From: "Ginghamgirl"

I believe I may have Crohn's disease, but I am wondering if anyone else has had symptoms like mine.  I have had rectal bleeding and stomach cramping, but they are not my primary symptoms.  The main thing I have is a hollow, burning feeling from my throat to my stomach.  During the active periods it NEVER goes away, and I have it all the time.  This could be caused by little ulcers, which I've seen listed on symptoms of this disease.  I have had less active periods, but no doctors I've ever gone to have known what this is.  Please help me!  Has anyone experienced anything like this?  I am in a lot of pain, and I have a very active and busy life.  I work as an administrative assistant, I'm a professional singer who's finally got her foot in the door of the music business successfully, and I'm engaged to be married in June.  I need to know if the symptoms I have are like those of Crohn's disease.  Please email me at Ginghamgirl@hotmail.com if you have any information.  Thank you so much, and God bless you!

From: Julie

I want to thank you for your page.  I don't have Crohn's, and I'm way past being a teen.  A girl at our church was recently diagnosed though.  My daughter, Jessica has Spina Bifida.  The girl I am referring to, Laura, had always gone out of her way to be friendly and kind to Jessica.  At first I thought she was trying a little too hard, and was not genuine.  Time proved me wrong.  This is one of the kindest, most caring young ladies I have ever met.  Now I understand she has developed Crohn's.  It's not happy news that she and Jess have Children's Mercy Hospital experiences in common now, but they talk about their experiences in such an everyday manner.  I want to try to understand her unique trials, the way she made an effort to understand my daughter.  Your web-site is a great resource. 
 
Jessica said something curious the other day.  I was trying to explain what I knew about what Laura was going through. Now Jess has to use a wheelchair, or walk with braces and canes.  She has to use a catheter to urinate, and has an enema every other night to keep from having bowel accidents. She has had 11 surgeries in her 9 short years for orthopedic and neurological complications. When I explained why Laura's face was swollen, and what she was probably going through, Jess said she was glad she had Spina Bifida, not Crohn's.  We all learn to live the life we have, don't we? 
 

From: "DR2Bisme"

  In December of 1998, I was starting to get sick more often than usually. So, my doctor had my blood count checked. It was 15000. This was what started all the trips to the doctor. By January I couldn't eat without getting sick. I went to the emergency room one day and they told me it was my appendix. Unfortunately it wasn't. They did find that I had a ovarian cyst. In February, I had lost 30 pounds and couldn't eat anything. They finally diagnosed me with Crohn's disease in March. By that time I had already missed 25 days of school in a row not counting before that. After that I had to go see Dr. Scott every 2 months for a checkup. In August he put me on Pentasa. Now I take 4 pills 4 times a day. That is my story.

                                              

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