Feedback and Experiences: September 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. "Wesh2" 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: Annie
Great page. Having never heard of Crohn's until I was diagnosed with it a few weeks ago, I still have a lot to learn about special diets and what to expect from this awful
Prednisone. I spent my entire summer before my senior year of college - my last real summer of my life - very very sick until the docs figured out what I had. I was put on relafin before I was diagnosed for the severe joint pain which apparently made the
Crohn's worse and that was not fun. Thanks for all the info on this page, I'll be back again and again!
My son is 11 years old and has a very hard time finding something that sounds good to eat.
Every time we sit down to dinner I hope I have made something that he will eat but he usually ends up going off the bathroom for a long time. Even the smell bothers him. Any suggestions? I need help - he is starting to lose weight.
My name is Joyce and I am 17. I was diagnosed with Crohn's in May of '98. I had just turned 17, three weeks before I was diagnosed. 3 months before I was dx., I experienced a VERY LOW red blood count because I had diarrhea. The normal is 117-138(approx). Mine was 82!! I also had a low iron storage. The normal is 20%-30%. Mine was barely registering at 1%!! My GP put me on iron supplements which increased my diarrhea and I had tons of blood on my stool!! No wonder I was close to death!! I eventually tried every single kind of iron
supplements (which includes syrup, and slow release tablets) Nothing worked. My GP said I might be allergic to iron...whoever heard of that! Well, I think I
was bleeding internally for approx. 3 months since I was dx. Eventually, my parents decided to take me to the Children's Hospital down in Vancouver, BC, Canada to find out what was wrong with me. They couldn't do much as I was 3 weeks over the age of
admission (birth to 16 yrs. old) They gave me some IV fluids for replenishment and told me to go to an adult hospital the next day if I was still feeling
ill (diarrhea, blood & stuff) Well, it happened. I was admitted to hospital and stayed for 3 days. I was put on clear fluids for 2 days and gave me 1 one liter bottle of Citromag to clear my intestine in preparation for the
colonoscopy. I started to puke and feel dizzy, tired etc, RIGHT AWAY. I told the nurses that if they gave me another
bottle (which they were going to give me soon) I would RUN out of the hospital as fast as my weak body could. They got the message and they
just told me to take the black stuff (barium) It tasted icky, but I was too tired to argue with the nurse. I passed out 2 times. One was an
embarrassing one. I was in the toilet late at nite doing you know what, and I started feeling nauseas and started seeing nothing but black!! I immediately pulled the little string which was connected to a wall. I assume this was a "pull in case of emergency" thing. Well, the nurses came, about 6 of them, and they carried me back to bed. After 10 mins, I started coming to after they administered Oxygen to me. I was SO THIRSTY, but of course you can't drink anything. When got home to
research my condition, I only realized that the citromag they gave me was full of SALT!!! You see I also have a kidney condition called Minimal Change Nephrotic Syndrome, which is pretty much in remission. I was in hospital for a month for this so I know what hospitals are like!! But I had to avoid excess sodium. WOW. (Also, I WAS put on
Prednisone for my kidney condition, so I know what Pred. does!!) After looking at citromag on the internet, I found out that the symptoms of an overdose of citromag are dizziness, fainting, vomiting, etc. Well, I guess I knew why I passed out and felt so bad :(
Well, I am currently taking Entocort (Budesonide)--3 3 mgs a day. My GI
says I will probably take these for a maximum of 3 months. I have taken
salofalk, and Flagyl, but it didn't work. The Flagyl gave me pins and
needles, numbness--periperal neuropathy (which I still feel the
aftereffects 4 weeks later) My GP told me I will probably have this for
at least 6 weeks!
If there is anyone out there who wants to chat sometime, PLEASE email me
anytime!! My address is: jpang@smartt.com
After looking through your Crohn's site, I found it to be GREAT HELP!!
You are a brave person and I wish you the best in everything. Remember,
what goes around, comes around. Live life to the fullest extent!!!
From: Sebastien
I live in a small town and we only have a small clinic when I first told them my symptoms the nurses were
baffled (sorry about the spelling)
so I went to a small hospital and they too had no clue what it could be. Finally
after 6 months and 35 pounds lost the doctors finally know what I have. that is my painful story.
I am 19 and was recently diagnosed with UC (colitis) 5 months ago. Right now I am in relapse. I think it is because I just took some extra-strength
Tylenol. I read somewhere that pain killers like these have been reported to trigger flare-ups. As many have already stated, I am extremely grateful to you for having created this website. It's good to know that there are a lot of young people out there suffering with the same thing I am. Fortunately I am in Bible College (Southwestern Assemblies of God University) and prayer seems to relieve most of the stress that often causes my flare ups. I relapse about twice a month. Does anybody else relapse that often? I read the recipes list, but does anybody have a list of specific foods that don't hurt you after eating them? It's good to know that I am not alone.
My name is Sara, and I am 21, living in Las Vegas. About four years ago I lost a close friend and had a very difficult time dealing with his unexpected death. I believe this is around the same time my stomach problems started. First I would pass blood and mucous, then I would feel faint. My stomach was always a little
queasy, but not too bad. They diagnosed me with ulcers. About a year later is when the attacks started, these God-awful, painful attacks of diarrhea that make you cry and scream and you think you will surely die of the feeling. Sometimes they would come after I eat meat, sometimes for no reason at all, sometimes when I would get excited or nervous. So after too many years of this now, I have gone to a specialist after my family doctor diagnosed me with IBS. My gastro doctor, however, thinks I have a
spastic colon, or some form of colitis. I have my first colonoscopy this Friday, September 11, and I tested negative yesterday for lactose intolerance. So, here I go...trying to remain positive but very scared at the same time. Anyone who needs to talk or has suggestions for me can e-mail me anytime. Thanks!
From: Bobbie
Thank you for this wonderful site. I just turned 30 in July and was diagnosed with Crohn's and Colitis about the same time. I have had abdominal pain,
diarrhea and very bad joint pains for a very long time. Finally I went to a doctor that know what was wrong with me before I even did the colonoscopy. I am glad I
finally have a name for what is wrong with me. It has been very scary, but I think I'm dealing with it very
nicely. I have my good and bad days. I started on various kinds of medication and vitamins but I had to start taking Prednisone. My
doctor was kind enough to worn me about the round face effect, but he also told me to watch my salt intake. I have had any salt since. I know it is hard but for those of you how are
concerned, cut salt out of you diet. I had just taken my dosage down but my abdominal pain was getting worst so I raised it again. As my doctor told me the first day I saw him "You are your own best doctor. Watch what you eat and cut out what make you feet bad." Hope we all feel better soon.
From: Peter
I just came across your page and I was so happy that us people with Crohn's were doing stuff like your page. I am 20 years old and I have had Crohn's since I was 12 and I have been through every treatment under the sun that my doctor can think of. It has been hell! I would like to hear back from you to see I if you can help me. I live in Halifax Nova Scotia Canada were thank God my heath care is free (with lots of tax of course).
From: Harmony
Hello I am 17 years old now.. I was diagnosed with Crohn's disease 8 years ago.
I have been hospitalized approx. 10-15 times with difficulties in the past 8
years...
in the beginning it was a major struggle. I had excessive 'Water weight gain"
from all of the
medications... As most I was on Prednisone a hormone that causes your body to
go through many changes as most of you know. You don't look right and you most
certainly do not feel right... I was also on a medication called
"asulphadine".. I was falling asleep in my classes at school, changing for gym
was a nightmare considering i was only 10 and most teenage girls were not a
developed as I, which was caused from the hormone in the Prednisone. I
eventually switched schools, I went to a private school at the time and I
couldn't keep up my grade point average to that was needed to attend school
there... so through the passing years I was in & out of the hospital.. but
something happened as i grew.. I no longer needed medication, i grew up strong
& secure, I was no longer in the hospitals from age 14.. so in the past 3
years I have wondered why I haven't had problems. so I scheduled an
appointment with my doctor at children's hospital to have an colonoscopy done..
Well as you all know Crohn's is a lifelong disease, to never go away. Although
I believe a miracle happened in my case... you see I have been smoking since I
was about 13.. I do not suggest smoking in anyway!!! But new studies show
that the nicotine in cigarettes has been known to be as of a "cure" or a
helping aid in the disease.. I have absolutely no signs of Crohn's as of to
this day...so basically what I am trying to say is miracles do happen. So be
strong and have courage.. You will make it!!!!!!!!!
:-)
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