Feedback and Experiences: August 1998
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 some 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. "Class99" 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!
From: Carlene
My son was diagnosed Thursday with Crohn's Disease. I am searching for all the answers I didn't receive from his Doctors. He is 17 years old.
Crohn's attacked all but 12 inches of his colon. The Doctors stated that he can only get better at this point because of the amount of infection now.
I have loved what I have read so far. Thanks for the info. I am excited to
have your site. Now I need to find to read each and every link available.
My name is Caitlin and I'm 12 years old. My doctor suggested an elemental diet (tube feeding) for me, because the
weaning off Prednisone isn't working, the 6- MP doesn't seem to be working well enough, the disease is in an unusual spot, and I haven't grown in a few years. Well, I would like to hear people's stories; what it's like to be fed through a tube, if you use it 24- hours or just at night, if it's uncomfortable, how you deal with not being able to eat for a time, what do you do at slumber parties, etc. etc.? I have asked my GI about the statistics, etc. but I want people's real takes. Please E-mail me with what you think- I would be SOO appreciative. Thanks so much!
My name is Tracy, and I was diagnosed with CD on my sister's birthday, August 16, 1996, the summer after I graduated from High School. I am 20 now, and I had emergency surgery on my small intestines last November. The doctor got mad at my mom because she kept insisting that something "wasn't right". That night they cut me from sternum to pubic bone. I'm doing well except for fatigue. I really need help with nutritional advice. Where do I look?
My daughter of 8 has just been diagnosed with Crohn's. I also have it but only when I was 23.
Her Dr. is talking about the possibility that we may need to do nasal feedings if her growth starts to become a problem. She is only on the 25th percentile for height and weight.
I'm looking information about that or people who have had that type of treatment.
I'd appreciate any information you can provide.
I've suspected that I may have Crohn's for about six months now. For the past three years, I've had severe abdominal cramps, all either in the rectal region, or the lower right quadrant of my abdomen. Once, when I was away from home on an orchestra trip, it was so bad the nurse was convinced I had appendicitis. Sometimes (I know this is brutally gross, but you're probably used to that, having Crohn's and all), I can actually feel my intestines when I walk, it's so bloated due to osmotic pressure or inflammation or whatever. It's like I'm full of balloons. I have diarrhea about four or five times a day. That's why I started researching IBDs. I'm sick of living off of extra strength
Imodium. It doesn't even help that much, but it stalls it somewhat, enough so I can make it until lunch, gym, home, or wherever the most accessible bathroom is. I feel like my life revolves around being someplace, like when I go out with my friends, that I can run to a stall, an attack of cramps or diarrhea can come on that fast. The symptoms have been getting progressively worse, especially in the last six months or so. I've also lost ten pounds in a month back in April, but I'd been exercising sort of (riding a bike for twenty minutes every third day), so I don't know if it was related. I've continued to lose weight without exercising, but at a slower rate.
I read that 20% of people with Crohn's have a sibling with an IBD. I know that isn't a rock hard diagnostic criterion, but my little sister had ulcerative colitis. Certain foods seem to make it worse. Excessive milk products give me major cramps, and anything fried is like hell fire. A few weeks ago, I'd been feeling rather well for the past day and a half, so, at McDonald's with my friends, where I usually can't eat any of the food (because of how sick it makes me), I had three of my friends french fries, and landed myself in the bathroom convinced I was dying for an hour and a half (mercifully, I was wrong).
I'm just sick of living like this. Always checking for Imodium (which barely works) before I leave the house, making sure there's a bathroom around, not being able to eat food I used to be able too . . . frankly, it sucks.
I found your web page and was just looking for someone who could give me an opinion. My parents are really skeptical when it comes to this stuff, so I thought maybe if someone with Crohn's thought I may have it, too, I could at least feel more confident when I talk to them.
Thanks for your time, I really appreciate it.
From: Lisa
This is a great webpage. Its really nice to know there are people out there who are experiencing the same things I am.
From: DJ
Everything that I'm reading on your page makes it sound like people with Crohn's
disease can't be active. I know that before I was diagnosed I loved to run, swim, bike, etc. I've just been diagnosed about a week ago and now
I worry that ill never be able to do stuff like that again. Hearing about active people with
Crohn's disease would definitely make me feel much better. Right now it seems like most people with the disease are lazy and use it to get out of doing daily tasks.
I tried to walk last week, and on the third day I got a terrible pain in my abdomen! It sucks, because I really love to exercise. I would like to hear what other people have to say about it.
I was diagnosed with CD 3 years ago and have been on several medications- Pentasa
since I was diagnosed, Prednisone (yada yada yada) and my latest
attempt at remission-Immuran. Only now after taking it for about 4 months my
hair is falling out. I have grown up thinking my red hair was one of my most
valuable assets, however it is falling out a little more day by day. I
wondered if anyone else had experienced this or if anyone knows anything I can
do about it. I am off the med. but the doctor said it may be permanent.
From: Leslie
I'm so glad I found your website. My 16 year old daughter was diagnosed with Crohn's today. She had been real embarrassed by her problems and is so glad she can now put a name to it. She has gone to bed but your site is being put as a favorite place so she can "chat" with others having her same problems. That way maybe she won't feel so alone with this.
Thank you for having this available to her.
I was diagnosed with Crohn's this year. My doctor wants me to come back already for another
colonoscopy. The first time him and his nurse told me I'd be asleep. They said it was like getting your wisdom teeth out. They lied. They gave me one shot for some sedation, but that only turned me into a violent person. I was swinging at nurses and trying to kick the doctor. I asked him this time if he could put me to sleep. He said yes, but that he wouldn't do it because it was riskier. I was pretty
much traumatized from the last time. I had trouble sleeping for 3 days, and I'm afraid of my doctor now. Should I try to switch doctors, and try to find someone who'll put me to sleep. Does any doctor put you to sleep for such a procedure, and what has been your experiences with this.
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