The Feedback and Experiences Page: November 1996 - February 1997
Thanks to everyone who has been sending me their experiences and comments about the page. It's really nice to know that someone is getting some good use from it. Here's a sample of the mail I've received. This page was getting so large that I have split it. All mail received after March 1, 1997 has been placed on the next Feedback page. Some letters have been edited for space. If you want your e-mail address displayed by your comments, let me know. Otherwise, I won't put it up. After all, we all value our privacy!
From: Noelle
I have just recently gotten
out of the hospital about a week and a half ago. I am now enrolled in
Texas Tech High School. It's like home school, but it's thought Texas
Tech. They send me all my books and homework. My doctors thought it
was a good idea because I am supposed to relieve myself of any stress
that I can. So I guess this is supposed to help! I also suffer from
depression, which irritates this disease quite a bit!
From: John
I do not have Crohn's disease but I have two brothers and a niece who do.
I congratulate you on your proactive response to the disease.
From: Michelle
Hi, I was diagnosed with bowel cancer when I was a teenager and
had
a large section of my colon removed. A couple of years later I began
to think it had come back but I was diagnosed instead with Crohn's -
believe it or not that was a relief (for a while!). I am no longer a
teenager (now 27) but have had my time on Prednisone and Salazapyrin and had all the symptoms.
One thing I have not seen in these pages is the need to have some calcium
when you are on these drugs. My doctor told me they leech the calcium
from your bones and teeth - but not until after I smashed two fingers
in my hand in a minor basketball altercation. Check with your MD.
I have tossed the drugs for 6 months as I've found a specialist who
is also into natural remedies so I am giving it a try.
I will let you know how it goes. G'day from Oz (Australia)
From: Nancy
(Note: Part of Nancy's letter and her e-mail address were garbled when sent. Nancy, if your out there, write to me and we'll get this completed!)
Hello. Congratulations on a wonderful web site. It obviously
has helped a lot of people and will continue to do so.
am not a teenager. I am 45 years old. I have had Crohn's since I was 12
years old. It is a tough battle, but we can do it.
I had a 3 feet of intestines removed 28 years ago. I went to college,
graduated, worked full time and went to night school to get my MBA. I've
been married for 20 years and have 2 daughters.
When I was in high school in the late 60's, I had NO ONE to talk to.
My name is Tym. I'm 17 years old and was diagnosed with Crohn's when I
was 12... Though I had been suffering its effects for at least a year.
It has been one of the most powerful influences on who I am. I saw first
hand the cruelty children can show to each other, and I think its made
me more sensitive to other people's pains. My doctor told me that my
case was relatively mild... I've never had to have any operations, just
the awful testing and then the medication. The worst part of the
disease for me was... is the loneliness. I don't know how to explain it
to my friends... though I've tried. I never have attended school regularly... averaging 25+ absences a year. I used to think of myself
as an all around student (back before the Crohn's)... I was getting good
marks played all the sports and had lots of friends. Then I got sick.
They misdiagnosed it several times... once as mono. Then after I became
anemic they sent me to a hematologist... meanwhile I was attending
school while barely able to keep my head up, both arms clutching my
stomach. Anyway to make a long story short... because I know I wouldn't
read this much... Its tough to handle, and nobody should have to do it
alone... I had good family support, but I still find myself asking "What
if... ? " I'd like to hear from other teens out there with Crohn's...
or without who want to become friends. Does anyone else get "Sick
again?" anytime they go to school after being sick (especially form
those acquaintances who don't know of your condition... I also have lots
of school troubles...) Anyway thanks for taking the time to read...I'm glad there's a place like this around... I don't think
everyone's
experiences are the same... but it seems a lot less lonely now.
You have a GREAT site here - I
hope that you keep it up!
Hi everyone, my name is Star* and I for my sweet sixteen - I got the
greatest gift of all - a Crohn's diagnosis. I say that it was the
greatest gift of all because before then I was always running to the
bathroom, throwing up and losing wait and no one knew why. My first
doctor said that I had a nervous stomach, and I would grow out of it.
Fortunately, my mother knew that a nervous stomach doesn't last for
months and months and she took me to a specialist at the Cleveland
Clinic, there I met the coolest GI M.D. in the universe. But the road
would be long, filled with tears, pain and laughs. Like the time I was
on my way to a scope and the transportation people didn't come, so a GI
Nurse named Marcia had to push my bed and she pushed me right into a
wall! - Well, my longest hospital stay was over 2 months, I've had a
colostomy and had it reversed, we stopped counting scopes, biopsies and
KUB's long ago! I've been doing pretty well, my last hospitalization
was 1994.
The most important information that I can share with everyone is - take
care of yourself. It took me the longest time to learn that even though Prednisone
is yucky, it swells your face, clubs your fingernails and
makes you get up in the middle of the night for a ham sandwich and a
bowl of Cap'n Crunch but, it makes you feel better. Take your
medication. Now I take my Pentasa with me everywhere I go - I'm
convinced that it is helping me so, I don't miss a dose.
Also, learn all you can about the disease, get involved in a support
group if you can. The CCFA can help you locate one in the area. Join
CCFA and get a pen pal with the disease. When you are feeling good , help someone else, get online or write a letter and encourage someone.
Have a good relationship with your doctor. Like I said my GI in
Cleveland was cool and now I've moved to the University of Chicago
Center for Advanced Medicine and this doctor is just as cool!
I'm willing to talk to anyone about anything associated with the
illness. Don't let it get you down! I'm very active, just received a
promotion and relocated to Chicago IL. Life is grand....I have great
days and bad days - u keep plugging' one day at a time. A good support
system is essential - have someone you can talk to, rely on, cry
with...it helps!
Well, that's all I'm going to say for now. I'm 28 now, but I
remember being a teenager with Crohn's so I'm on your side!
From: David
This page is very good. I've just found it.
I am not a teenager, but, I was diagnosed with Crohn's disease
over four years ago and have tried everything. I recently came across the
book Eat Right For Your Type by Dr. Peter J. D'Adamo. Since following the
blood type diet for my blood type I have been virtually pain free (a
miracle in itself) and have had little bowel or bleeding problems (that
were a constant before). Please check it out.
From: Noreen
I was diagnosed with CD in April 1981, I was 10 years old. The first 6 years I
was in the hospital more than I was out. But I have never had a section of
bowel removed. I know I am not teenager now but I lived through those years and
they were tough. No one could really deal with my illness. I almost died
before the doctors knew what I had. I've been on Prednisone 5mg a lot that has
helped control mine, but now the doctors say my hip joint may be affected. I'm waiting to find out the results of some x-rays. It seems it's always
something. I've never really been on a specific diet but I am about to try
a diet I heard helps people with IBD by Elaine Gottschall. Since the
doctor says the next flare-up we will discuss surgery which scares me. Well,
I think this page is great and I know you are helping a lot of people cope.
From: Shaun
Thanks for writing that page on Crohn's !
I have to say when you go to hospital it feels terrible and worrying.
When you go out is one of the best feelings in the world :-)
It certainly makes you feel good just to be normal again. Having a disease like this helps I suppose to
appreciate all the times we
are normal.
Just thought I would say that.
From: Randell
I am sixteen and was diagnosed with Crohn's disease at the age of
fourteen. I ended up going to the doctors office after many stomach
pains. The doctor gave me the dreadful SCOPE. My lower colon was raw
and I could hardly stand the pain. The worst part about it was that when
I was on 30 milligrams of Prednisone I had to move away from my friends
and move on to a bigger school. As I walked down the halls I would
notice everyone staring at my puffy face. I hated the thought of looking different
than everyone else. As time went on my dad talked to a girl who
had been taking vitamins and hadn't had anymore problems with her Crohn's. I tried them and ended up having three kidney stones. I thought
my pains would never end. As I read all of the stories on the teens with
Crohn's I am still trying to understand how some people can be on a diet
where all they eat is veggies and fruit. If I eat and fruit or veggies I
will have horrifying pains and bloody stools. Also I read about someone
who's mother had almost died due to the disease. I dont understand this
because my doctor told me Crohn's wasn't fatal and you can't die from
it. I am doing better and have met alot of people in my new school. I
don't have pains very much and am on 10 milligrams of Prednisone. I don't look like a chipmunk (puffy face) anymore and everyone in my family is
very understanding with my problems. I just would like to tell everyone
that has the disease that you are not alone and I feel for everyone's
problem. Thanks for reading my story
From: Kara
My cousin was diagnosed with CD about a year and a half ago. It
just started recently to get to the point where she had to get surgery done
to remove sections of her intestines. I'm not exactly sure about what the
disease is doing to her except that she has to eat a different diet than
other people. I don't know what's going to happen to her but it scares
me. She's the sweetest thing in the world and she doesn't deserve
something like this to happen. So many other things have happened to her.
I'm not trying to single her out from the rest of the people who have CD
but she means a lot to me and for her not to be able to do all the things
she's been able to do before kills me. she's only 18. I'm happy that her
boyfriend is still there for her. She doesn't know how much everyone loves
her. She went into surgery today, I guess that's why I'm rambling on about
it, but I'm nervous. She hates needles and not being able to eat normally.
I don't know. I hope everything turns out OK. It's great that we have somewhere to turn to. It
feels good not to be alone with this. It's such a complicated problem that
I've never even heard of before.
Hi. I was diagnosed with Crohn's in November of 1994 right as I
was getting into my first year at college. For about a year and a half
before that though I was in and out of hospitals. My doctor thought it was
an ulcer and he was giving me all this medication that didn't help. For a
long time my family and friends were playing guessing games trying to
figure out what I had. One of my friends even thought I was anorexic
because every time I we went out to eat I would eat one bite and then spend the rest of the evening in the bathroom. In December of 94, a month
after I was diagnosed the inflammation in my large intestine got so bad my
rectum closed off and I was unable to go to the bathroom. Pacing from one
end of the doctor's office to the net with my parents hundreds of miles
away and knowing that something had to be done soon or I would be seriously
ill was the most frightening thing I think I've ever experienced. But, I
got through it, even though I had !
to!
miss my finals and come back early the next semester to make them up.
Right now I'm doing okay. I don't really have many symptoms but I do take,
as my friends call it, a bag of drugs. I guess it goes along with the
territory. Basically , I wanted to ay that this site is a really good
idea. I wondered how I could possibly get in touch with people who were
going through what I am going through. Right now I'm dealing with the
possibility of a permanent colostomy. I'm trying to find out if anyone my are has one or where I could get more information about getting a colostomy.
Thanks again for this site. It's pretty cool.
From: Dorothee
I'm a mom of a 10 year old who has been diagnosed with Crohn's
last summer. I discovered your page tonight and haven't had much time to
check on it. I'm just glad it's here and we have some other people around
with the same experiences and problems. I'll be back after I've seen more.
thanks for being here.
From: Dania
You have no idea how much I have learned from your site! It's
great!
I have just been diagnosed with Crohn's disease (after I lost 20 pounds
and couldn't hack the stomach cramps and pains anymore). I felt this
sense of hopelessness because I didn't understand that my stomach pains
weren't normal (that's what kept me from going to the doctor for such
a long time). I thought I was just being too sensitive, but now I
understand!
Thanks for the great web site, and YES, it has answered many questions
for me. Now, what only awaits!?
My son Bryan just turned 12 and has suffered from Crohn's disease since
he was 9. I've never read about anyone this young having this problem.
At first they checked him for parasites, then bacterial infection, then
he had some polyps removed, then they said it was ulcerative colitis,
and finally after his last flare-up they decided it was Crohn's because
of the severity of his disease and other symptoms. He was in the
hospital last year from two days before Thanksgiving until three days
before Christmas. Great holiday season! During this time he had high
fevers, constant bloody diarrhea and inflammation that would not go away
and he couldn't eat without throwing up. So they ended up removing 60%
of his large intestine, and gave him a colostomy bag. As if this wasn't
hard enough they left an IV tube in his chest in case of another
flare-up because his veins in his arms are so flimsy. It was a good
thing, because he just got home from another 2-week stay and didn't have
to get poked once. Luckily he didn't have to have any more surgery this
time. Every time they try to lower his Prednisone he gets terribly sick.
He's doing pretty well now but still has to deal with the bag and the IV
tube and thinking about going back to school. If anyone has any
suggestions or encouragement for Bryan, please send him a note. THANKS!
I am 14 years old. I was diagnosed as having Ulcerative Colitis with
peptic
ulcers in July. I had been sick for about a month then. I went into the
hospital so dehydrated it wasn't funny. I didn't eat anything for 16 days,
and I barely drank anything. On my monthly visits, my doctor would
continue
to say I had UC with peptic ulcers or Crohn's( they had done all the tests,
even the disgusting barium drink!!!) Finally, I went to another doctor, my
original gastrointestinal doctor who was out of town when I was being
diagnosed, and extremely ill, and he told me that I had Crohn's and that I
never had UC. That was in October, and I recently got out of the hospital
on
January 14th or 15th. I went to the hospital with major pain, nausea, and
of
course, many trips to the bathroom. It turns out my colon was inflamed and
they put me on a liquid diet, yuk, and the hospital had a McDonald's two
floors down, imagine the torture. I met the worst Crohn's patient and the
second worst Crohn's patient in my state of Mississippi while I was in the
hospital, and they told me that they were trying to start a Crohn's Disease
Camp. If you would like to E-mail me to try and help us out, PLEASE do so.
I'm on AOL and my name is AHRIGHT014. Please help us get this camp going
so
we can find a cure for this disease, and get to meet people first hand with
Crohn's, close to our age.
I just found your page. I was also a teenager when my disease was
diagnosed (Crohn's disease).
It is 10 years ago now, and I am 25
I have a lot of experiences that I would love to share with other young
people around the world suffering from the same disease as you and I.
Right now my disease is in a very aggressive state, but I have no
stenoses in my intestines, which makes it rather difficult to give
an answer to the severe pains that I have had the last few months.
Today I was at the hospital to have my ileum 'x-rayed'. I will get the
results next week. In the mean time I visit my doctor almost everyday
to get an injection with morphine (twice the normal initial dose) just
to be able to live one day at a time.
I LOVE YOUR PAGE AND YOUR INITIATIVE - KEEP UP THE GOOD WORK!!!! :-D
PS. My experience is, that getting a good nights sleep will help you
to avoid many bad days with pain etc.
From: Ryan
You have a very nice site. I am a teen with Crohn's and was also
on the Prodigy service. I am currently in a bad flare up and I use the
computer to cope and distract myself from the awful pain.
I live in cold Canada. I don't think the
weather helps.
From: Charles
I was diagnosed with Crohn's two years ago at the age of sixteen. Talk
about devastated. (I had almost lost my mother to Crohn's six months
earlier.) I went through the ever so pleasant tests, by the way, we
share the same opinion of barium (gag). I lived through all that, and
didn't have another flare-up until this past summer. I spent five days
in the hospital, and resumed the routine of taking large doses of Asacol
and Prednisone. Three weeks later, it was time for me to report for my
first semester of college.
I was so excited to be there, Until I met my roommate. She smiled as I
walked into the room, but quickly changed her expression as she looked
at my overly swollen face. She stared as I unloaded the medicine from
the large duffle bag that swung at my side. I didn't say anything, I
thought I would wait until she asked. She didn't ask for several days,
she just sat and stared. Finally, one night as I was getting readty to
go out, she approached me. She stumbled over her words, and finally
said it, "What is wrong with your face?" I smiled, and replied, "I
thought you would never ask." I told her that I had a disease that most
people didn't know about, didn't understand. I then explained
everything. She was so understanding, I was quite surprised. She then
looked and me and said with a grin, "You mean to tell me, when your butt
screws up, your face puffs up?" I had to laugh at her honesty. I
chuckled and said, "Yeah, something like that."
After our conversation, we became very close. She is always trying to
cheer me up about my situation. She often says that I am the Butt of
all her jokes. Honesty and humor have made this transition a lot
easier.
From: Ann
I think its great to have such strength and stamina. I myself do not have
this but my mom does and my family has been by her all the way. I know how
hard it is on ya'll. I plan to go to medical school and specialize in Crohn's. Hopefully find the cure...
From: Jon
Hi, I'm 14 and was diagnosed as having Crohn's 1 week ago (1/21/97). I
hadn't
really been expecting my illness to be as complex as it is; I'd been told
that I had food poisoning, then Hepatitis A, then lots of other nasty
little
things and then this. I'd had the symptoms for about 2 months and had had
numerous blood tests and stuff. At first it was thought to be food
poisoning
'cos I had diarrhea, then I started developing the other symptoms and
ended
up in hospital being really ill (12/5/96). I had a couple of Ultra Sounds
done, but nothing was found. I was chucked out at Christmas 'cos I seemed
to
be getting better and kept blubbing that I was bored. I went back to
hospital in January for about 9 days 'cos I was ill again and had a white
blood cell scan (I skipped the dreaded BARIUM SWALLOW!!) an endoscopy and a
bunch of biopsies. I have to have steroid enemas (the things you shove up
your butt); I can't have the non-steroid tablets 'cos of a liver problem I
had and I didn't want the oral steroids (I don't want these but - that's
life!!) I suppose that's the end of my exciting little story for the time
being.
I'm 13 years old and was diagnosed with Crohn's disease in Dec.
96.
I would like to know how I find out about a support group for teens in my
area. I live in Woodward, Okla. We live 120 miles northwest of Oklahoma
City. I'm really glad that I found this section on teens and look forward
to checking it out all the time.
My name is Kara and I'm 15 years old. I've had Crohn's for almost 6 years
now
and it ain't no party! :) ( But of course you're well aware of this...)
First, I'd like to say how much I enjoyed your web page. It was the perfect
thing for young adults with this disease, and I think you did a fantastic
job. Thanks so much
for
your help, and for your page! Take care,
Kara. :)
I first want to say that I just found this page today and like it. I
have been through torture or to hell and back. I am 17 and in the middle
of a terrible flare-up. I have been through so much that I want to share
it with others and especially others with my problem. My friends have
been very supportive and seem to know more about my BODY then they do
about theirs. It sucks, but I appreciate all the support and it truly
helps a lot, believe me, I know. When I first got diagnosed in Oct 94, I
had friends, but not the support and friends I have now. Everyone in
school knows me and asks me how I am doing. they all care so much and I
appreciate it. I go to a big school,2000 people, so it feels good when
this many people care about one person. People I have known for a while,
just never hung out with are coming to see me and sending things. I used
to be worried of what people would think or say about my steroid face,
but now I pretty much know that people still see the always laughing and
joking and smiling me. They see past the puffiness. The way I tend to
tell people about my illness is to joke about it. It also helps me deal
with it. Oh yea, I also haven't been at school since Oct 96. I plan to
go back on Wednesday and am a little scared. I've really only been to
say hI once every other week. I know I am just worried for nothing, but
I still am. thanks. This page is great. It is good to hear from others with my
painful illness. I have been through a lot and really want to share my
experiences with others.
From: Ryan
Hi,
I've been on an elimination diet for 3 years which
excludes milk, gluten, red meat, sugar, processed food etc.
Unfortunately this leaves only fruit, veggies, chicken and fish to eat.
I've been very well on the diet but have found that it isn't the only
factor that plays a role in controlling Crohn's. I think stress does play a
role in this disease. Someone once told be that stomach problems are a
reflection of the way people digest life. (I think that this is really
true)
I'm moving towards a diet which contains less raw foods (* trying to cut
down on the nuts, fruit and
veggies *) The sad thing is that doesn't leave much food left to eat :(
On a more positive note - I'm not on any medication and haven't had any
pain since being on the diet. My only symptom at this stage is that my
stomach still runs (*only once or twice a day*). Thanks for running the page.
Cheers
Ryan
From: Michael
This page is the bomb. I think you should call it young adults
with Crohn's. You should try to get to where you can post messages like the IBD sucks page and a page on having relationships with
Crohn's. I love the topics and recipes. I am 19.
Hi! my name is Christie and I am 22, I just found out I had Crohn's this
past summer. I hate the diets. I hate having to know where every rest
room is in my county. I hate going to school, and never knowing when it
is going to hit hard again. I hate the surgery's, testing, I.V.'s and
hospitals. At first I was scared, and afraid that I was the only person
with this oddball disease. then I found out that a lot more people than
I thought had it. Believe it or not, even with all the things I hate, I
am thankful everyday that I didn't have the tumor they thought it could
be. I do lead a relatively normal life and I have friend's who
understand. Thank you for this page.
Hello
I'm 19 and have had Crohn's for about 8 years now, I consider myself
lucky because I have had very little problems with it, but I am on 5mg
of Prednisone, I known the obvious side affects of Prednisone, but I have
heard of some others, does anyone know what and if this is true?
thanks
Tim Hall
From: Anonymous
I have a very good friend who has a very rare medical problem. He
is 12 and his gastrointestinal system doesn't work well, and he has very
little control over his bodily functions. He has terrible pains from
his GI tract at times, and when it gets really bad he misses a lot of
school. Sometimes he wakes up at night crying from the pain. Since his
condition is very rare, there is not a lot of information available. He
goes to some local doctors, but his main specialist is a few hundred
miles away. One of the common results of his problem is Crohn's. I found
this out from doing my own research, and it all fits, especially
considering his cramps and pains.
I think he is an amazing guy. None of this keeps him from having
fun and getting involved in a lot of activities. He plays soccer, is
involved in theater, and joins a lot of school activities. I'm proud to
be his friend, and he is a great model for anyone with a chronic medical
problem. Only a few people really know what his problem(s) are, so they
don't know how hard he has to work to do all these things. He gets
very frustrated at times and says as he puts it "I hate my life". It's
so hard because I want to help him, but all I can do is give him encouragement
(which doesn't seem like enough). Wouldn't we all like to
make it go away! At his age it is really hard to try and reason with him (and there really is no reason).
From: Emily
Thank you, thank you, thank you.
I have ulcerative colitis, not Crohn's, but there are many
similarities between the two. I've had UC since I was 1 and have always
been looking for others my age dealing with IBD's. I'm 18 and living with
a permanent ostomy. It gets lonely. Thanks for a place where I know I'm
not alone.
Hi. My name is Joey. I've had Crohn's disease for about 4 years now.
I am twenty years old and have had three operations, removing my apendix
and about 2 feet of scarred intestine. I have had ALL the tests,
numerous times in all conditions. In other words, I've been there and
done that. If wants to ask me about anything or just wanting to write,
your can email me.
My name is Stephanie, and I turned 21 in September. I was
diagnosed with Crohn's disease last November. My doctors think that I
have had Crohn's disease for most of my life. I am a Donnatal and
Compazine junkie because I was never put on a special diet. My primary
GI doctor seems to think that all of the medication that is available
won't work. I am unable to take Sulfa due to an allergy. Steroids ( I
took them when I was having recurrent sinus infections ) make me so
depressed that I became borderline suicidal. I was on Asacol for about
six months, but this actually made me feel worse than when I wasn't
taking anything. I was sent to a specialist, who in turn suggested that
I be put on the big one, Imuran. I started the Imuran on a very low
dosage. Three weeks later I was in the emergency room, doubled over in
feverish pain. I had developed possibly life-threatening Pancreatitis
from the medication. As of now ( my one week hospital stay was in August
1996 ) I am not on any medications. I am simply existing on faith,
Donnatal, and Compazine. I took a trip four years ago to Russia. I
unknowingly had Crohn's at the time. My best advice is to take every
kind of medicine that you will possibly need ( including a water filter
to avoid contaminated water and Lactaid ) . Many countries without the
medical facilities of the US will not have a corner drugstore where you
can pick up a bottle of Tums. I even took antibiotics with me in case
they were needed. The food was good, but it was impossible to tell who
had used dairy products, etc. At the time I just suffered through it.
Now I would take a type of nausea/intestinal cramp relieving medicine (
like Donnatal ) and a nausea /vomiting drug ( like Compazine). These
medications would be very useful in these situations. Other than taking
plenty of medicine and keeping an eye on what you eat and drink, my only
other advice is to have fun. Although I wasn't feeling wonderful the
whole time I was in Russia, it was one of the best experiences in my
life. The world is a beautiful place. You can't let this disease keep
you from seeing it.
Anyone who would like to e-mail me with any questions or information
can do so. Until then, keep praying for a cure.( I
pray for you, too! :-) )
From: Renata
I really liked this page. I have Crohn's Disease for two years
and I want to share my experiences, too. I am on a special diet for three
months now. I have been eating just macrobiotics foods and I think it is
working. My mom has heard about a university in Israel that may have a treatment for this disease. If anyone knows about it, please let me know.
Thank you.
From: Lisa
My niece who is 14 yrs. old was just diagnosed with Crohn's
Disease. Thank you for taking the time to make this page, and to help others with this disease. I will pass the information on these pages on to
her and her family.
From: Randy
I'm not a Crohn's patient right now, but my father has been since he was
about my age. The doctors all seem to consider me at a high risk for
developing it, however. It's pretty annoying, with all those tests that
people have to have. Thanks for all the info, and I might end up back
here a few years down the road, able to tell you a good one.
From: "I.S.Boparai":
I am 22 years old and have had colitis since the age of twelve. I was first diagnosed in April of 1987. I belong to a sikh religion. I was
losing quite a lot of blood and the local gp gave me medication for the wrong disease. I remember the first time the doctor sent me to the
hospital. We were celebrating visakhi, which is a very important sikh
festival and it is my mothers birthday, too. As I was going to
the bathroom thirteen times a day, we called the g.p over. She sent me
straight to hospital and tests were done that were very painful by
doctor taylor (barium tests). My father was baffled as we have never heard
of this illness in our life. Back home nobody in our family has never had
it. Since then I have been under many consultant, now I am under a
consultant by the name of Dr Swarbrick.
I am 20 years old, will be 21 soon....but I am just barely not a
teenager anymore. I have irritable bowel syndrome. It isn't really bad
in my opinion but it can be annoying (like you said). I don't follow a
special diet at them moment mostly out of frustration. I am not supposed
to eat anything with lactose or milk products but so many things have
lactose in them that I just give up. Many foods seem to bother me such
as fried foods and fattening foods. I get a lot of heartburn and nausea
at night if I do eat a lot of those foods during the day. One thing I do
notice is when I exercise, I get cramped up....I guess the food starts
moving through my intestines more when I exercise or something.
From: malltd
The creation of your teens page was a really great idea. I am 18 and
have had the disease for three years. It seems to me that some of
the things that affect or don't affect me are different from those of
older people who have had the disease for some time. I also find it
hard to talk about the disease but find it necessary. I wish you
success on your page. I hope it will become a place that many of us
can feel comfortable talking about the disease in an effort to minimize
the effects and find an eventual cure.
Go on to March 1997
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