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. "FCclass" 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!
I just wanted to say thanks for this site...I've been diagnosed last November and I had never heard of Crohn's disease before!!! I had a first crisis so bad that I couldn't walk anymore and they kept me at the hospital for a week to finally let me go home with a stupid flyer saying "You have C.D.; you're not alone" That's it!!!! It's so cool to find out about people that are going through the same stuff as me!!!! Thanks again so much....you're an angel for sure!!!!
A search for information brought me to your site. I think it is great.
I was diagnosed with Crohn's just last week (9/8/00). I have been sick
since April so just knowing what is wrong is a relief. Dealing with the
fact that this is something I will have to learn to live with is difficult
though. I have very supportive parents and I believe very strongly in the
Lord and His Provisions. I know God will give me the strength to deal with
this. Let me share with you my story.
In April of 2000 I started having stomach problems. I didn't really have a
lot of pain but I went to the bathroom a lot, especially during a certain time
of the month. I also had a lot of gurgling and just an uncomfortable
feeling. There was a lot of stressful situations present so I just thought
that was the problem. Well I went to an OB-GYN and he said I had a
parasite and possibly IBS, but that I needed to go to a GN (gastrointerologist).
Well I was moving that week from CA to OH so I had to wait. In May I went
to a family doctor in Ohio and he said that I did not have a parasite but that I
did have IBS or IBD. He put me on Lotronex and Prevacid. The two
just caused more pain and complications so I stopped taking both and went to a
GN. As it turns out I did have a parasite and went on antibiotics for two
weeks. Well a few weeks after that I was still feeling sick and I was
having a lot of cramping to the point where my body was just shaking. My
mom decided that enough was enough and we went to the hospital. After
doing a blood test, I was admitted. My blood cell count was high,
indicating an infection. That day they did stomach X-Rays and kept me on
I.V. They also did stool samples. They did find that I had a
virus. It turned out that the antibiotics can sometimes cause a virus.
The next day I went in for a colonoscopy and my doctor said something was
definitely not right, but he couldn't say for sure until the report came back. I
had to stay one more night, because the doctor said my body couldn't take much
more. I had no reserves. Finally on the third day I was released.
The next day the doctor called and said I had a virus and Crohn's. He has me on
an antibiotic for the virus and Asacol for the Crohn's. When I first heard
the news I was crying and thinking that I would never have a normal life again.
I have always had a decent number of friends around but I have always been
pretty quiet, especially with such a personal topic. I guess I don't
handle embarrassment very well. I do have one friend with Crohn's but he
is an older, married man. I personally think it is harder for a teen to deal
with. Well, anyway, after some thinking and a lot of praying, I realized
that it could be worse.
I still worry at times about how I will ever be able to hold a normal job, and a
lot of "What If's" go through my head. I am trying to take
things a day at a time though, and like I said, I know God will see me
through. I do think your webpage is great though, and it helps to know
that there are others going through the same
thing. I hope my story can be of help to someone. I do plan on going
to the site frequently. Keep up the good work.
I saw your webpage and read your story. As some one with CD who also went to college pursuing a degree in science (environmental engineering and now a masters in chemical and environmental engineering) I know how tough it can be. Let me recommend that you take your time, don't worry about grades - it is what you know not what your transcripts show. My profs new this and because of that they helped me get into grad school - my grades weren't quite up to par with grad school requirements. CS is a tough major (I believe the hardest majors are engineering, CS and biomed, everything else is expensive summer camp). I took five years to get my B.S. and was well worth it. It let me cut down on my load, 3 classes instead of 4 a quarter which allowed me to concentrate on my studies more and not be as stressed having so much more to do and if I needed to take time out, I could. It made college easier. Hang in there. I am sure you know how tough it can be.
My name is Melissa and I'm 21 years old. I was
diagnosed with Crohn's disease when I was 14years old. I was stable until
last year. The doctor's had put me on Prednisone the first couple of months of
being diagnosed. When they took me off, my body couldn't handle any other
drug....I would break out with rashes.
Last year October of 1999I got really sick. The doctors
didn't even know if it was the Crohn's acting up or not because they performed
every test. Finally they did the barium down a tube through the nose and
detected where it was inflamed. My symptoms then were vomiting and sharp
pains above the abdominal area. I couldn't hold any food in and lost about
20-25 lbs. within 2 months. I had to have surgery and 2 feet of my intestines
were removed (the ileum). Since then it's been like starting all over.
I need to experience all over again with foods. Before my body could take more, but
now it's kind of weak....I really don't know what to eat anymore and I'm getting
tired of eating the same things.
I notice when I'm stressed, I get sick...I need to find a way
to get rid of stress or at least calm down and maybe a way to exercise or
something.
I ran into my ex girlfriend today, oddly enough as she moved away to Maryland... Well the reason she is in town is that her sister who still lives her was ill enough to warrant a trip north to CT. Her sister has Crohn's. It was never really explained to me, and while discussing it with another friend tonight I was at a loss as to say what it really is. The closest I could come was "It is like lactose intolerance (which I have), but much worse." So, when I got home, I searched the web and ended up at your website. Needless to say, I found it extremely informative and even inspiring as well. I'd just like to congratulate you on a job well done. Thanks a lot.
I've just been told by my G.P that there is a very strong possibility that I have Crohn's disease. I've been suffering with bowel problems for the past eight months so I'm relieved to finally be given some answers, but I'm scared of what it all means and how it will effect my life. My Mum found this website for me and when I read it I immediately felt much better, I realized that I wasn't alone and that others suffered too. Your site gave me hope when I thought it was time to give up. I'm going to be a regular surfer here as I want to know more about my condition and how to handle it. Thanks for spreading the word about Crohn's to clueless people like me. I thought no one could understand what I was going through and I felt very alone but now I know that there are people I can talk to who can relate to my experiences. Please feel free to share any tips or advice with me, I'd really appreciate it
I was diagnosed with Crohn's Disease in 1976. I guess you could call me the
old man of Crohn's. I have gone through all the same type of things and pain
over the years and would like to support what you are doing with your web site.
over the years I have refined my diet to consist of whole grain cereal and toast
for breakfast and in general tuna and chicken for all other meals I supplement
with met-formula that you can get at GNC and mix half a bag with orange just and
a banana brewers yeast and take HMB that you can also get at GNC this along with
working out such as mountain biking and a positive attitude has helped me cope
with Crohn's. Note : do not eat meat , nuts, corn, salad, and other hard
to digest foods try to stay with whole grain foods for health. Good luck to all
and good health
I have been diagnosed with Crohn's decease for about 3 mouths now and I wish it would all go away. The more pain I get, the more hope I lose. So I prey for a better day tomorrow almost every night. The pain is not just in your stomach it is in your head and heart too. When I found out that I had Crohn's I was so in shock, I thought that I was untouchable to illnesses, for about the first week I cried at night. I tried to keep quite around my friends until I started to take some medication called Prednisone witch in my case really shut my yap. After a few days of taking these prescriptions I started to feel and notice the side affects through acme, lightheadedness, nervousness, confusion I felt mentally and physically exhausted no energy too. I was suppose to gain weight through the pills but it never worked, maybe a little. After I was done my first treatment of Crohn's I never felt worse in my life, sick and tired of all this crap already, even though I have a long road ahead of me. My mother (R.I.P) was diagnosed with Crohn's decease when she was 18 (my age )too. She lived with it and fought hard a long willing never to give up hope to finding a cure to this decease but then one day when I was about 17 and she was about 42, she had found out that another decease had began to raid her body too called (cancer) she fought long a courageous to over come all the pain but she never could, one afternoon she passed away. About 6 months after she passed away I started to suffer from on going pains in my stomach, so I went to the doctor and he told me that I have Crohn's just like my mother. He told me it is hereditary and the chances of catching cancer like my mother are slim next to nothing, I prey to god so. All I could think about was my mother and all the pain she had gone through. Now since I have been off this medication for about 4 weeks my symptoms have almost all gone away. I am starting to socialize better and feel and look better to. I am lucky that I have a mild case of Crohn's. This I tell you all who have suffered like me, talk to your loved ones, don't let this decease eat away at you, fight it you can, if you friends are not supportive then they never where your friends to begin with and always have an open mind towards the cure because one day it's going to be here with hard work, persistence and strong fast dedication, support your local Crohn's and colitis foundations, NEVER give up hope, there is light to a brighter day, you have to hold on and a stay strong because in this world, only the strong survive......
I was diagnosed with Ulcerative Colitis in March of 2000. I had been having
severe stomach spasms which my regular doctor said would go away. They didn't,
but proceeded to get worse. Then when more symptoms came, like the numerous
bowel movements and blood along with it, my family and I became very worried. I
went to a gastro-intestinal doctor who made me go for tests, and scheduled a colonoscopy
for me. This came as a shock to me. I was just finishing my sophomore year in
college and I had to stop tears from rolling down my eyes in class. I was out of
work for 2 weeks and I never missed a day of work the 2 years I had been there.
After the colonoscopy, my doctor informed me that I had Ulcerative Colitis. I
had no idea what that was. He said my entire colon was raw. He put me on plenty
of medications, and I began to get better, gradually. It's hard living 19 years
of your life and then all of a sudden someone telling you you have this chronic
disease, that you will have always, and it impairs you in some way. I became
depressed, but as I got better....things went back to normal. I cut out some
foods that I found upset me, like fries and I didn't dare try to eat fast food.
It was hard cause I loved Burger King. haha. For about 4 months I was my 'old
self'...then....I found out I needed to get all 4 of my wisdom teeth out. I
wasn't nervous or anything, but I guess I should have been. After my surgery, I
had stopped taking the little medication I had been on for my Ulcerative Colitis
( since I was improving my doctor lowered my dosage) and I started taking the
medication for my wisdom teeth. I think that going off my colon medication and
eating only dairy ( what else can you eat after wisdom teeth surgery) caused my
Ulcerative Colitis to inflame. I could be wrong, but that's what I think it is.
So......the whole month of August I was in some pain from the inflammation, but
then nothing seemed to be staying in my system, and I lost a lot of
weight...so I went to the doctor and he put me back on a medication he had taken
me off of. Nothing improved. So on Thurs. he admitted me to the hospital to give
my colon a rest and to run more tests on me. He wanted to see if I had developed
Crohn's. I hadn't. It was my first time in the
hospital, and they had my hooked up to IVs, giving me food and medication. My
friends and family were amazing. Being sick makes you realize who is really
there for you. Right now, I am home, but my Ulcerative Colitis is still inflamed.
I just visited my doctor the other day and he put me on more medication so I can
sleep at night, I wake up at least 4 times to go to the bathroom. The only thing
I am worried about is dealing with all of this when I go away to school, when I
was diagnosed in March I was at a community college, but since then I have
graduated and am going to go to a University. I leave Sunday. I was hoping I
would be better after I left the hospital, but I guess not. I guess what keeps
me going are my friends, family, and knowing that there is relief...I had it for
4 months....<stupid wisdom teeth surgery> hehe. Sorry this is so long, but
I just wanted to tell my whole story. If anyone else would like to
talk....e-mail me anytime....I would love to talk to anyone who might be going
through what I am going through.
Cool site and bravo for concentrating on people's story's and experience's,
unlike the other Crohn's sites which seem to concentrate more on medical
terminology which on the whole doesn't mean all that much to the average Crohn's
sufferer. I was diagnosed with Crohn's in November 1998. I had a
stomach ache for a couple of days, but on the third day I couldn't get out of
bed I was in so much pain. I went to hospital where they removed my appendix,
and also some of my large intestine which was inflamed as well. However, the
drain wound from the operation did not heal and I had a hole on my side leaking
pus for 2 months (which wasn't too nice). They did some tests, (barium meal and
a colonoscopy), after which they told me I had Crohn's. I'd never heard of it
before in my life, and the doctor had to completely explain it to me. They said
I would need more surgery, which they did in December 1998, where they removed a
chunk of my large intestine. After the surgery I healed up nicely, and have not
had anymore problems since. The only thing that has changed is that I have to go
to the loo a bit more than I used to. I still eat pretty much whatever I want
and am not on any kind of diet. After reading some of the people's stories on
your site, I feel quite fortunate, as it hasn't really affected my life all that
much, and a lot of other sufferer's seem to be worse off than me, and for this I
feel grateful. The only thing that worries me is the thought that if the worst
comes to the worst, I may have to have a colostomy bag later on in life,
although my doctor tells me that this is rare. I try not to think about having
Crohn's too much, as this just seems to get me down. To anyone who has Crohn's
and is told they need surgery, don't worry about it, it's not that big a deal,
you'll have a cool scar to show your friends (I now have 3 scars because of
Crohn's) and you'll feel much better afterwards. I did.
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