The Feedback and Experiences Page: October 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. "Happydude" 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: Christina

I have to tell you that you are awesome. This site is amazing. I was diagnosed with Crohn's earlier this month and have been literally scared to death and severely depressed. I am 21 and in college. Every time I go to the doctor I feel so alone because I am always the youngest person there. It has been great to finally see that there are other young people with this disease. I have to give you props for this grand thing that you have created. I just found out Monday that I am going to have to start Remicade because my other meds just aren't working at all. I am nervous, but hope that I can suck it up and take it. I have been through every test that's out there where Crohn's is concerned, so I am hoping that this Remicade thing won't be so bad. The problem that I have been having is that I don't have anyone my age to talk to about what's been going on. Being able to share experiences or even just tell someone about my pain is very helpful in being able to deal with Crohn's. When I tell my friends, especially my guy friends, it just grosses them out and they don't want to hear it. If you have any suggestions as to how to find support groups in my area please let me know. I would greatly appreciate it. I have so much that I want to tell you because you have inspired me, but I want you to actually read this so I won't make it too long. Thank you again Matt. This site ROCKS!

From: Sarah

    Thank you so much for your awesome web page. I come here all the time and it has given me so much information that I couldn't find anywhere else.   I was diagnosed with ulcerative colitis in April,1999. I was 11 years old. That April was spent in the hospital for three weeks, I had three blood transfusions, and was put on 40 mg of the dreaded Prednisone.
    After I got out of the hospital, I tried to pretend that everything was normal. I was not that educated about UC or Prednisone and i actually thought everything would be normal again. I gained 40 pounds in 2 months. It was the worst summer of my life. I didn't know why I was so hungry all the time and I didn't find out the side affects of Prednisone were what was causing my troubles until they had already taken a deep chunk out of my self esteem. I didn't make cheerleading at school and I felt like my world had ended. I was a hungry, fat blob, with acne.     I finally went off Prednisone in November, 1999. My life was returning to normal. I started working towards my cheer leading goal again and joined a prep team at a nearby cheer gym. Everything was going great until (surprise!) April, 2000. I started having the bloody symptoms of UC again. I begged my doctor not to put me on Prednisone. I tried all the alternatives, Asacol, Immuran, Cyclosporin, Flagyl, Bioxin, the list goes on. In spite of everything, I ended up back in the hospital for a month.
    At first the doctors thought my UC had developed into Crohn's because I was throwing up everything I ate. After an endoscopy they realized it was just a virus that was making my flare worse. After those 28 long days in the hospital my strength was gone and I was days away from surgery. I was sent home for 3 days and I was told that if I was still bleeding that surgery would be the 4th day. It was a miracle, all symptoms disappeared.
    It was a hard road getting my strength back this summer. And I was on Prednisone again which was a constant battle for me. My legs were so weak that when I got in a car I had to pull my legs in with my arms. Stairs were the ultimate challenge. I was sad, lonely, and depressed. That was when I decided that I couldn't take it anymore.   We scheduled surgery. It would take 3 surgeries for them to remove my large intestine and hook everything back up. I was worried about the illeostomy that I would have. Three days after my 13th birthday and in the middle of cheer leading tryouts, i had my surgery. It was August 10th, 2000. I have to admit that it was the scariest thing that I have ever done, and it hurt.
    Now, three months later I am bleeding again and I don't know why. I think it is the 2 inches of my intestine that are left. Fortunately enough, no more Prednisone and the enemas they gave me are seeming to work. I still have 2 more surgeries, November 20 and December 19. I am not sorry for myself because I have been through all this. If it wasn't for UC, I would never have felt the need to reach out to people with illnesses. I even want to be a doctor when I grow up. Surgery is a scary thing, but it is better than colon cancer when I am older. Someday I know that I will be a cheerleader. I have my whole life to live, after all, I'm only 13.

From: Mike

My name is Mike and I was diagnosed with Crohn's when I was 19, June 24th, 1996. The doctor's didn't know what was wrong for about 6 months. I lost 90 lbs and also lost the full ride scholarship I had for volleyball because I couldn't even stand up for more than 10 minutes. I go in for my first surgery in
a week. I love the page you have. A lot of the comments on the Diagnosis Day page hit home, because I feel the same way. I have never met anyone else with
Crohn's, so it is good to know that other people are out there.

From: Suzi

From: Amber

I was looking through the diagnosis dates and I kinda feel like a veteran even though I'm only nineteen. I was diagnosed in late fall of 1987. And yes I've been through it all. In and out of hospitals- the steroid treatments- love those chubby cheeks- and most recently surgery in Dec 98- Merry Christmas Amber-. School's hard to go to when you look like a chipmunk - I know, it's hard, but I guess it's took me this long to say but Crohn's is a blessing in disguise, it makes you thankful for the things other people forget about.

When you're in remission, you're on top of the world, when you're not you'd rather not go outside. The questions are hard to answer, especially when you know the person's barely listening- but don't be ashamed or embarrassed, cause life holds too many embarrassments that we create on our own.

For the ones we cannot contain or avoid- forget about it, laugh it away, with time you'll see that life is short and every day gets a little shorter. Enjoy the things you do have- it's hard but I think that's one of the reasons we have the disease, because we have the heart, ability, strength, and humanity to survive it. I hope happiness finds you- it took a while but it found me. Tuck your fears away and smile, it's the only cure that I've come up with.

From: Ginge

I was first diagnosed with Crohn's when I was 11 years old - I am now 22. It was at a time when not much was really known about it in Australia and I was tossed between doctor and surgeon and doctor and diagnosed with everything from leukemia to anorexia. It's hard to deal with when everyone tells you that the reason you are sick is your fault. Finally they had no choice but to do exploratory surgery, not knowing what was going on but just cutting me open and seeing what they could find. At that time they took 1 foot of my small intestine and my appendix. It had got so bad that it had twisted around one of my ovaries and attached to my bladder - a lesson for those who are scared to go to the doctor - don't let it go on - see a doctor!!! I am still worried whether or not i am infertile - they told I wouldn't be but I am a bit wary now. It was only 18 months ago that I had my next bout of surgery - I had just started my law degree and was living a normal life when it hit me again. From then on in I have been on 9 tablets of mesasal a day and off and on with Prednisone. I also have to have vitamin b injections every 3 months and constantly take iron and vitamin C as since I was first diagnosed I have been anemic. Sometimes I feel really down - but then i come to this site and it makes me feel better that i can talk to people who understand - no matter what age they are. It can be hard for us - I get called anally retentive by people at university when I have to peel my fruit before I can eat it; and also girls at university have been really mean since my last bout of steroids by making remarks about me "letting myself go." But what we all have to remember when people have a go at us is that we are so much stronger than them and we are more comfortable with ourselves than they could ever be. People like that are never worth it in the long run. I know how hard it is when you are growing up and going through puberty and people are drinking and eating what ever they want. But just remember how much stronger a person you are than them, as you are dealing with something that they could never comprehend.