Welcome
Hello and welcome to our Young Adults with Chronic Illness forum. We are brand new and just getting up and going. If you are here you probably understand how hard it can be to make the transition from childhood to adulthood when you are dealing with an illness. Unfortunately this is the time that healthcare often lets us down. Pediatric doctors, hospitals and support services all maake you leave when you become an adult. This is a place to discuss our specail concerns. Managing college, getting a job, being on SSI, making friends, and transitioning to adult heath care. Anything on your mind is a fine topic since, as we all know, illness ripples out to have effects in all parts of out lives. So once again, welcome. I'm glad you made it here and look forward to seeing you in the forum.
sharon
ProzacKat Registered User
Posts: 1
(9/21/02 2:14 pm) Reply
Re: Welcome
Hi Sharon!
Im Kat. Im 19 and have Eosonophilic Gastroenteritis.. Was diagnosed about 2 years ago now.. but most likely had since a baby...
I have multipul food alergies and a low immune system.. They think that my type of EG is autoimmune so......
Other then that, i got married last year to a wonderfull guy, and im a nanny for two wonderfull boys in elemntry school...
Re: Welcome
Kat,
Glad to see you here. Welcome and thanks for posting even though we are so new. Hopefully, you and I will be joined by more people soon.
Hi...
Hi
My name is Becki and I have Cystic Fibrosis, Arthritis, and an interstitial Lung disease that pops up every once and awhile...
I also run a webiste for Teens and Young Adults with Chronic Lung Diseases like CF , asthma, auto-immune problems,ect.
You can reach us here :
www.topica.com/lists/younglung
Re: Hi...
Hello Becki !
I'm glad you found us and that you took the time to post. I know some about CF but whats Interstitial Lung Disease? Is it related to the CF? Do you end up hospitalized a lot? Where do you live? (I'm in NJ) How old are you?
Ok enough with the questions for now. Hope to be talking to you more soon.
Re: Hi...
Hi! I'm Heather, 28, and I have CFIDS/FM/NMH. I'm currently a college student but I am having my first relapse in about 5 years, so I'm a little discouraged right now. Sharon and I have been friends for a long time, and I just thought I would stop by and say hi, so, hello!
thanks for popping in. I hope you come talk some. You need a place to vent too. You cant face all you have to cope with at the moment without a palce to just dump it all when you need to.
Re: Hi...
Hi! I'm Jen, 22 from Iowa and I've had CFIDS/FMS since I was 12 y/o. I'm married to a wonderful guy, Justin for almost 2 years and have 2 kids, Ethan (18 mo) and Taylor (6 mo).
I know Sharon so I thought I'd drop by this group I hope to meet others too that have chronic illnesses.
Hang in there!
Jen(22) & DH Justin (24)
Ethan- 16 months
~*~*~*~*~Taylor Hope born April 17, 2002~*~*~*~*~
Re: Hi...
hi Jenn,
your kids are soooooooo cute!! How have you been doing? I know how hard it is to try to manage being sick with little ones. How close in age are yours? Kev and Abbey are 14 months apart.
Cyclic Vomiting Syndrom
Hello, I am writting more to hear from anyone who may have CVS. My 6 year old daughter has been suffering incredibly from this now she was born. Only last year they came up with this name... Its hell and still no cure. The doctors have tried different meds but non seem to be working BUT IV and drugs that make her sleep. What kinda of life is this? How can she lead a normal life? So , all I would like to hear is others story and possible what works for you.. Thank you so much...
a conscerned Mother
rmooreny Registered User
Posts: 2
(1/19/03 11:39 am) Reply
Re: Cyclic Vomiting Syndrom
Hi DominaG,
I hope your daughter's diagnosis means that now you'll be able to get the information and treatment that she needs.
Have you been in touch with the Cyclic Vomiting Association? They might be able to help you learn more about how to treat cyclic vomiting episodes early and aggressively so as to keep them from getting too bad. I don't have CVS, but I've been learning about it a little because I am friends with Sharon.
Cyclic Vomiting Syndrome Association
13180 Caroline Court
Elm Grove, WI 53122
p 262-784-6842 f 262-821-5494
www.cvsaonline.org
Good luck!
Rebecca
Edited by: rmooreny at: 1/19/03 11:40:01 am
Hi my name is Darlene. I have been suffering from VCS for the past 7 years. It's only recently after getting misdiagnosed with many things that I feel they have finally figured out what is going on.
In any case, I'd be happy to share with you what I go through/things that make me feel better, etc. To help you understand more how your daughter feels.
I can be email at darshere2002@yahoo.com
I hope your daughter is on a "good" phase right now. Hang in there.
:dance
gerry Registered User
Posts: 1
(3/20/03 2:06 pm) Reply
I'm 43 yrs. old and have CVS too.
Hello,
I'm so sorry to hear about your daughter. As a fellow sufferer I really hate to hear about children having it but I suppose it's more rare for an adult to have it. I just found out that I have it early march of this year. I had been sick since before thanksgiving of 2002. Mine was found very quickly, I suppose. I now have an attack once a month with the vomiting for 24 hrs. I still vomit after meals alot but feel better shortly afterward. If you'd like to know my signs and symtoms then please email me at cang94@hotmail.com. there are a few things that make me feel better when an attack starts. Like taking a hot bath, covering my stomach. Hot green tea helps me too. I'll tell you more if you want. I suppose audult symtoms and child ones are the same. Email me and we'll compare notes. I'm a mother of 3 , a wife, and a dental assistant.
gerry Registered User
Posts: 2
(3/21/03 4:14 am) Reply
email address
sorry my email address was spelled wrong. It's candg94@hotmail.com. Sorry for the error
nice to meet you. I'm Sharon. I was origionally diagnosed with a motility disorder- gastroparesis and pseudo obstruction. My stomach was emptying at all so my vomiting episodes werent stopping. Actually I started out in a cyclic vomiting pattern, but then my episodes stared lasting longer and longer, then they were lasting months at a time until one came and wouldn't go for almost 7 years. :cheer I was fed by iv for that time and I was finally diagosed with something then. I got my iv out about 2 years ago ater I had a surgery done to wrap my stomach around my throat to stop my ability to vomit.
Anyway. I have three kids, ages 5, 2 1/2, & 17 months. Gerry have any of your kids shown any tendencies to being pukers too. Mine seem to have trouble also and sometimes I worry that they may develop bigger problems later on. Right now it it more that they just have that tendency to spontaneously vomit on me for no reason at all, without being sick, and they feel fine after, want to eat again right away etc. Or they just seem to get stomach "bugs' a bit too often even when they dont seem to have any other symptoms to go with it. Maybe I am just a paranoid mom. :worry
Hope to talk to you more soon.
~sharon :eeyore4
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul. ~ Madeleine L'Engle, A House Like A Lotus ~~~~~~~~~~~~~~~~~~
gerry Registered User
Posts: 3
(3/30/03 6:43 pm) Reply
Hello Sharon
Hi Sharon,
I have 3 daughters, 22, 21, & 16. My youngest one gets car sick and seems to have alot of stomach flu like episodes. But nothing too frequent to alert me to the fact that she may be suffering form the same thing yet. My 21 year old has had acid reflux since she was about 12 yrs. old. My 22 year old has lots of allergies but none of them to food. She got allergy shots for several years, All my daughters suffer from migraines, just like me. I guess now my migraines have moved to my stomach. My Dr. told me that the pain in the stomach that is so bad is a migraine in the stomach. So I hope this CVS will bypass all of them now and in the future. The Dr. and lots of things that I have read about CVS, say that most people that get CVS are also migraine suffers. But children don't usually have migraines. I'm really happy to have found this site. It's nice to know you can talk to others with similar health problems. wink
Re: Hello Sharon
migraines :wall and nothing seems to help mine.... ugh. What do you take?
~sharon
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul. ~ Madeleine L'Engle, A House Like A Lotus ~~~~~~~~~~~~~~~~~~
My name is Cindi. My son is 26 years old and has been having symptoms for the past 2 1/2 years. He has had about 9 hospitalizations since his first episode. His first few episodes were 6 to 8 weeks apart. He then went between 10 & 12 weeks between episodes, then 16 weeks, and then 5 1/2 months. We were so excited, thinking maybe he had outgrown the disease. However, his last episode was just 3 weeks ago, and he's now currently having another. He always ends up in the hospital with IVs and his episodes usually last 7 to 10 days. Right now, I'm mostly concerned with his emotional state. He's very depressed and says he doesn't want to go on living. He feels he's a burden to everyone and says this controls his life. I'm afraid to some extent, he's right. This really does control his life. He's so far been very lucky and able to keep his job, but I don't know how much longer that will be possible. He's unable to finish college and can make no plans because he never knows when an episode will arise. He never has any warning. Always just wakes up in the morning with the vomiting. He never has pain, just the constant vomiting, diaphoresis and restlessness. We are currently waiting for an appointment at the University of Iowa to see a specialist there. He's seen several GI physicians here and it doesn't appear they are very knowledgeable. I'm wondering if anyone has ever heard of the GI department at Iowa City in regards to CVS? It seems like his episodes are longer than most that I've read about. Does 7 to 10 days seem extremely long or does this seem typical?
aergella
Unregistered User
(5/10/03 12:52 am) Reply
dealing with cvs (I think), some suggestions
I have been suffering with horrible reoccuring vomitting, insomnia, nausea, anxiety, the works...for over three years. I have been in and out of just about every clinic, hospital, doctor's office, homeopathic, bach flower remedy place,psychiatric,chiropractic office, you name it...
Finally an allergist suggested that I have CVS. The strange thing about this is that my second cousin also has the disease, but he hadn't heard of this until I contacted him because he sounded so similar to myself. He's 40-had it on and off since he was 19.
I am currently working with a chiropractor/wellness/health "helper", my therpist (of over 5 years), and a family practicioner-the same one as my cousin. I have seen so many and come away feeling utterly hopeless. After a colonoscopy,endoscopy, barium x-ray "thingie",countless hours getting fluids, and finally being told to take my records to the emergency room in Madison, I really began to lose hope. I began to think I was nuts. Sometimes it gets Really hard to feel hope. I don't think the same when I'm "sick". As soon as I'm better, I don't understand how my head worked that way. I do continue to see oter people if they seem to have a new direction to go in. Hopefully now, this doctor will stick with me and really help.All the treatments together should eventually do something...
I am relieved to have found this sight because until I read all the information on the cvs association sight, I blew off the diagnosis. It's actually not easy to find info. on this dibilitating disorder. Nobody else mentioned it or acknowledged. Tey all just said they didn't know what was wrong with me and sent me on my way.
I am, however, not fully satisfied that there are so few options as far as "curing"(or even easing the horrible week that comes more than once a month). I am a strict vegetarian since I was in 3rd grade.(I'm now 22),so i have been taking all natural vitamins, keeping records of my eating habits, balancing sleeping pills with occasional coffee in order to get on a regular schedule,and recently I've been taking some different combinations of drugs from the doctor.
I'd like to make some suggestions to those who are dealing with this. Drink ONLY pure spring H2O, or F itness water such as Propel (made by gatorade), Rrl eebok water, or other Electrolyte chared water. NO soda, juice,or anything with much if any sugar.
I also eat baby food(applesauce) when I start to get better. I used to get sick for almost 2 weeks at a time, now it's about 3 days with 3-4 "recovery"days (it's really hard to get back into the "real World".
I also take shower after shower, i curl up and hug my knees and the hot water feels great. I also recommend the most hypnotic, droneing, calming music you can think of...I also have a nature sounds light that projects colors onto my ceiling, its soothing.
If you have a family member with this, just remeber that comfort, and just a simple touch or having you back gently rubbed helps alot. I also try not to move too much, or I get hiccups.
Glad to have found this site, hope I can be of some help...:moon
hi
Hi,
I'm Kristen and I'm 22 years old. I found this support group in a web search on google. I've been suffering from a chronic heart and lung disease for almost my whole life. I just wanted to say hi to all you guys and that its good to know that we can bond over these things.
keriene Registered User
Posts: 1
(3/22/08 5:55 pm) Reply
Re: hi
Hi, my name is shaynie and i have Cyclical Vomiting Syndrome (CVS).
I have had it for 5-6 years or maybe longer and im only 15 so i suppose it is most of my life.
I live in London England and am a last year school student.
Also to add one more thing i dont mind chatting with other people with CVS if they need someone to talk to.
Just PM me for email addresses.
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