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. "20thbd" 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!
I am 14 years old and was diagnosed with Crohn's disease about a year ago and since then i have had a foot and a half of my intestines took out. and now I have been told that I have another fistula on my small intestines . So I'm scheduled for surgery at the Cincinnati Children's Hospital. wish me luck.
I found this website through the CCFA newsletter. I just wanted to say - IT'S AWESOME!! I was diagnosed with IBD around 12 years ago, but just 3 weeks ago, everything went really wrong. I'm finally having a colonoscopy Tuesday. So while I'm not sure what's wrong (I'm thinking UC) your website has terrific info that I'm sure will be really useful. And, while I'm not longer a teen (gee, when did that happen? lol) I can certainly appreciate this site!
I know I am not a teen any more (22) but I would think that this might be
useful for anyone interested in what goes on in the UK with the battle against Crohn's.
Where to start? well, June 2000 I was starting to get stomach upsets, or so I
thought. "nothing much just a bug I thought". Sep 2000 I ended
up having about three BAD stomach aches in two week intervals till things got
even worse and blood was appearing. That was the home hitting run that made me realize
that there's something more wrong.
I was taken into hospital after a really rough episode. various prods like
barium x-rays, colonoscopy and so many blood tests my arms looked like were a
long term drug users! After a week of agony and tests they diagnosed Crohn's and
put me on Prednisone (30mg), Pentasa. Pred was horrid! I got more spots
than a
leopard and bad mood swings. They let me out only for things to get even worse
and ended up straight back again and got put up to 60mg of pred. Again things
stayed quite for a week or so then things got worse again! this time I was
unable to take pred from throwing up so much but cuz I was so depended on it I
had the roughest time I have ever had! shivers, sweats, crying, laughing
fits, psycho moods, and then all the Crohn's pain on top of that! I now
know what drug users go though to get clean fast!
Finally surgery was the last straw. I was put up on the Pred even more! till surgery a few weeks later. By now I was very skinny, very tired and very mood swingy, etc. Surgery came and I was given a epidural of pain, loads of drips and an oxygen mask. Also a ileostomy. After all that butchering I was now so knackered than when I was recovering I could only walk a few yards before finally passing out and heading for the floor. I was also sleeping a lot. Turns out I had five strictures and some fistulas. They had to leave a stricture in though and had to have the ileostomy for at least three months while things repaired. Just had my ileo reversal and feel pretty good even if a little soar. put on a load of weight, off dreaded Pred and no more l'il bags to change. bit of the runs from three months of bowel rest but hey, things can only get better.
One lesson, don't let nurses handle administering of the pred in hospital because u can guarantee that they forget to give it to u and then its all pain, withdrawal and misery till they finally remember and then wander why you just bit their head off and then started laughing and screaming in pain while shivering all at the same time! Oh, and not forgetting loosing 50% of your hearing and getting blurry eyes!
Last year (April) I was diagnosed with Crohn's Disease. It really scared me. I started feeling better and then a month later on May 3, I had to have 7 inches of my large intestine removed. I remember going back and then waking up. I was scared when I woke up because I didn't know if I was going to be waking up with an ileostomy bag attached to my stomach. Thankfully, they got it all in the seven inches. I was so sore for the next week in the hospital that my Dad had to pick me up and help me sit up in bed. I finally got home and started walking more and I actually done pretty good after I got up and started to walk. I am so thankful to my Dr's and my family and especially God. Without them I couldn't have made it through any of it.
I have had Crohn's since I was six years old, but I was not diagnosed until I was nine. I am 13 now and my Crohn's is in a BIG flare up and I have tried many medications and none of them have worked. I just recently tried an experimental drug called Remicade, but it didn't work. I have also had a blood transfusion because I got tired all the time. I am not going to school right now because I am too sick, but I am home schooling. I am going to have surgery soon, but I don't know when, but I hope it's soon. It's hard being sick all the time because you don't get to see your friends as much as you would like and you can't go out as much as you would like. Thanks for the web site.
What you are doing is more than commendable it is downright on the verge of
Sainthood! Being a patient of Crohn's for over twenty years now I have seen
most of it and survived somehow. I would like to offer my help to anyone.
I try to offer real world advice to people as my parents did for me while I grew
up. I have had this now since I was seven. I know no life with out
the disease.
My death sentence has been written more than enough times for me but for some
reason I am still here. I hope that even if one person can feel brightened
by my views and experiences, (There are some really great ones!) than my soul
will rest easier when my final day does arrive. Until then I will continue
to live my normal life. That's right I said normal.
I hope that everyone who has this disease realizes, that this simply qualifies
them as human! We all have problems and none shall be so great that we
cannot overcome.
Thank you for providing this much needed outlet for so many people who need it
so badly, including myself.
Go back to February 2001
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