Feedback and Experiences: May 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. "BtrL8" 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: Robyn
Hi! I think this site is fantastic! I wanted to send in my all-too-common story. I had one year of treatment where my Dr. thought I had spastic colon. Then a colonoscopy, lots of medications, and lost 30 lbs. Finally we did an Upper GI with small bowel follow-through, and tada! Crohn's (just like my mom) So we started
Prednisone and I guess I was doing alright, when suddenly I had a major episode that landed me in the hospital on my 19th birthday (5/18) Boy did I ever feel like a pincushion! Then they decided that I had a bacteria in my blood, and then an ovarian cyst, so they kept me longer doing
x-rays, CT scans, and ultrasounds. I'm home now, thank goodness, with an arsenal of pills. I'm looking forward to the big R-remission, I know it will come. Thanks for this place where I am one of many, not the only one.
From: Morgan
What a great idea to have kids and teenagers with Crohn's open up to one
another about their common problems. What an insight it is for me, as the
mother of a 12 year old boy, to read all the inputs and get some of the
information that my son is not able to communicate to me.
I want to thank you and everybody who is involved in the makings of this
wonderful website.
First of all I would like to congratulate and thank u for putting this wonderful and informative site for all of us.
Now about me I'm Neerajfrom India (Bombay) a software engineer. During my first business visit to USA early this year (Jan to Mar) I have been diagnosed with a disease called Ulcerative colitis.
after around 2 months of suffering on 4th march (day of colonoscopy in CA) doctor told me about this disease , that time I got a relief that now I know what is the problem, but later when started surfing net and
discussing it with the doctor, i got to know that its incurable chronic disease.
Now I am seeing a GI here in Bombay and taking Mesacol(1200mg), Prednisone(50mg)and some other pills. My doctor says it can be controlled very soon; I force
myself to believe him, but after five months of suffering I have not gone
to remission. My doctor doesn't have much experience of these cases (he has an experience
as a GI of about 6 yrs) and he told me that in India
we don't have many cases of Crohn's Disease and cases of UC are coming
up. He told me that these diseases are common in west.
Once again thanks for creating this site.
Help!!! My 12 year old son, Bryan, has recently been diagnosed with Crohn's Disease. (He was diagnosed in October of 97). At any rate, his list of medications include: Prednisone (15MG/0MG DAILY), Actigall, Pentasa, Penicillin, Purinethol, Ranitidine (SP?). The problem? MOOD SWINGS! Bryan isn't Bryan these days. I realize that some of his mood swings are caused by Crohn's and/or medications. He has been in trouble at school more these past 7 months than in his whole 6th grade education. I have tried to explain to his teachers and principal that Bryan's attitude isn't entirely his fault. I know to them it sounds like I'm just making excuses for him. Please, how can I better help the school officials to understand that this behavior isn't normal? Bryan's attitude is real indifferent, at school and at home. When will I get my son back? We are in the process of reducing his Prednisone (Again!) I have heard some stories tell that depression, aggression, and indifference are sometimes more pronounced. We're trying to wean Bryan from this drug. I am at wit's end! Please, I'd appreciate any and all advise you may be able to offer.
From: AJ
I see from your web page that most people, though not all, are treated with Prednisone. I've heard some concerns about long-term use. What is "long-term" considered to be? Have any of you had problems with Pred. other than chipmunk cheeks, which for sure I have. On the up side, it's working!
Hi! My name is Katherine and I live in Sydney, Australia. My best friend, Caroline, was diagnosed with Crohn's about a year ago, and since that time she has been through 3 operations, about 5 different diets, and has gained and lost weight at amazing speeds. At the moment she is in a period of 'remission', although each day I wait to hear the news that she is back in hospital....
I was hoping you could give us some advice, because Caz is currently trying to lose weight. All the reports I have read say that weight LOSS is a common symptom of CD - but Caz has been putting on weight. Is this unusual? We thought it might have something to do with the fact that she is on a high dosage of Steroids - which have been known to speed up one's system and make them eat more? Have you heard about this sort of thing before? Any advice that you may be able to offer would be appreciated.
I'd just like to say that what you're doing (the Web site, etc.) is FANTASTIC - it is so comforting to know that Caz isn't alone.
Hello, my name is Jenny Curry and for the past 3 or 4 months I have been experiencing an abnormal cramp in my right hip area. I went to the doctor and he said that he wanted to test me for appendicitis. He told me to come back in a few days. When I went back he checked the pains again and then told me that there is to much tenderness for it to be appendicitis. He told that he wanted me to go get some tests done for a disease called Crohn's. I didn't really realize that the disease was so complicating until I read some stories on your web page. I am really worried that I may have it. Should I be so scared. I was never told that it runs in our family until today. It turns out that 2 of my aunts have it. I guess I am just really nervous because I go for the BARIUM in 2 weeks and then they'll tell me my results.
I'm really unsure if I'll have it because the only symptoms are that I can't drink milk, or eat spicy foods without getting the pain. Sometimes I'll just get the pains for no reason. I guess the reason for this note is that I just needed someone who's been through this to give me some advice!!
Thanks a lot for this web site, it's given me a lot of information on the disease that I may or may not have!!
My son Michael has Crohn's, I was wondering if there are any connections to allergies and Crohn's. When Michael was born he was allergic to all formulas and was put on German 2% milk. (He was born in Germany). He was four months old by this time. Since then Michael has been tested for allergies and out of 60, he's allergic to 48.
Some foods, the allergy just happens, seemingly overnight. Like crab legs. He had eaten them for years and then we came back to the states and went to Red Lobster and within five minutes we were on our way to the emergency room.
I noticed chocolate is on your list of forbidden foods, Michael is allergic to chocolate. I've asked the doctors about the connection and they tell us no. I was just wondering if other people with Crohn's had food allergies as well.
I think this page is a great idea. I have found out a lot of information and on some things have a better understanding of the pain and mystery surrounding Crohn's.
From: Erin
Hi!! I am a 14 year old girl diagnosed with Crohn's about five months ago. I was in your web page about forbidden foods. I have found all red meat to be irritating to my bowl. I eliminated it from my diet and found that is has helped a great deal. I just that I would let you know that so I can help others with food problems!
From: Michelle
My name is shelly and I've had Crohn's since I've been 11 years old, and I'm 30 now. I've been on all kinds of diets and none of them really ever worked. I was in and out of the hospital my whole teen life, On different kids of diets , certain health drinks actually I think I've tried them all. Shortly after I turned 18 I was put back in the hospital, almost died cause my Crohn's acted up so bad that I lost a lot of blood and passed out in the bathroom at the hospital. Having my 2 IVs against the bathroom door stopped them from getting in right away, they could only open the door a little bit and had to find a little nurse to squeeze in and climb over the bathroom sink. By the time they got to me I was out cold , nearly lost my life that day, was the scariest day of my life. They put me in intensive care that day and buy the next day I was on my 4th surgery . This time I had to have an illeostomy. It saved my life, and since then knock on wood I haven't had any reoccurances. Even though I hate having the illeostomy it saved my life and now I'm married with two beautiful children and wouldn't change anything. There's a lot more that I've been through but this was the main thing. Thanks for listening.
From: M.
My name is M. , I'm writing to you because I thought that maybe you
can help me.
I had an anal fissure surgery last February (February 9th.). When my doc
. (family doctor) first examined me, he told me that I had inflammation
around the anus. He gave me a cream to lower the inflammation, but it
didn't worked. A week later I had a colonoscopy and they (my doctor and
a gastrointerologist) didn't found anything.
Things got worst. I was in a lot of pain, and one week after the
colonoscopy I had the fissure surgery.
It's been almost 10 weeks after the surgery and it hasn't heeled (it
takes 1 to 2 months to heel)
I had read a lot about anal fissures and I learned that sometimes
fissures, abscesses and fistulas are signs of Crohn's disease (that's
what I'm worried if maybe that is what I have). My surgeon (a
) told me to be patient, that because of all the
inflammation I had, that it would take longer to heal?
I would like to know if you had just the rectal pain at the beginning,
or if you had any other symptom like diarrhea, etc.
I would appreciate a lot your help!
Please let me know if you don't understand my English,
Hope your feeling fine!
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