Diagnosed today, 19 years old

[LaraMarie]

I'm 19 years old and a sophmore in college. I have flare ups that last for days sometimes weeks, which make it impossible for me to go to school much less hold a job. I've had to move back in with my parents so they could take care of me becuase the pain is so constant and so bad. I now have to wear diapers becuase its impossible to make it to the bathroom. I spend 90 percent of my time sitting or sleeping in the tub. I don't know if I'm gonna be able to take this until the Elmiron (s/p?) kicks in. Does anyone know what I can do to start relieving my pain now?:confused:

-Lara Marie

[Texas Baby]

LaraMarie,:hi: :welcome:
Getting to know what and how to do thigs to help yourself takes a little time when you are first diagnosed. I had extremly bad flares and would spend days on end in bed and I have kids to take care of. YOU might ask your URO for he could prescribe until the elmiron takes effect. There are a lot of good ones out there that could help! Good luck IF you ever need a fiend don't hesitate to e-mail me ! May I also suggest you read the IC survival guide By DR. MOLDWIN it was very help ful! you can either order at this IC site or go to borders or barnes and noble.
Littleva:rolleyes:
Littleva@sbcglobal.net

Diagnosed 2000 w/IC
Fibromyalgia 2005
IBS 2003
depression 2003
panic anxiety disorder 1994
MEDS:
toprol
cenestin
zanaflex
elmiron
atarax
valium
percocet
topomax

[Texas Baby]

Lara Marie
Please excuse my atrcious typing ability and spelliny in the last paragrah!
Eva

[ICNDonna]

First of all, I'd like to welcome you to the IC Network. How were you diagnosed?

My suggestion would be to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find the IC diet there, which may help you a great deal, as well as information on the various treatment options.

It may take a while, but most of us do find effective treatments that will allow us to live normal lives.

Warm hugs,
Donna

[mary124]

Hi & Welcome to the IC network. Don't give up hope. There are lots of medicines and treatments that you can try that will help you. Like Donna said, it may take awhile, but we all live normal lives.

[ICB]

:welcome: Don't give up hope! If your IC symptoms are treated early, the chances of significant symptom control are above 80%. The key is to look at the big picture, the multimodal (more than one) approach, looking at all the things that are going wrong and then correcting them.

Most of us know what it's like to walk in your shoes. Many of us have found relief of our symptoms through diet, dietary supplements, prescription medication, self-help techniques and physical therapy. The majority of IC patients respond best to a multimodal treatment regimen. The most widely prescribed treatment regimen is Elmiron, Elavil and Atarax - check with your healthcare provider to see if these prescription medications are appropriate for you. Furthermore, if you would like fact sheets and informational handouts on many of the treatment options available, please send your request to icrelief@verizon.net and I will email the information to you.

You mention severe pain; you should seek the help of a pain management specialist. Your urologist can help you with your bladder, but you may need other specialists to help with some of the associated IC symptoms.

Best wishes, ICB :flower:

[Imustpee]

I am so sorry...when I was 19 I had IC for 13 years already...school was VERY difficult....my mom wrote notes for my teachers saying that I had " Bladder problems" and needed to use the bathroom alot..:loco: ..sigh...It seemed like all the bathrooms were far from my classes...and the bus ride home was horrible as we were the last stop.:cussing: ..keep taking the Elmiron...it can take a few months before you notice anything...stay away from sodas, coffees, acidic foods....I know, it's a bummer for sure, but hopefully you will start to feel better soon..:) .at least there are treatments now, when I was in school there was nothing...:mad:

[Kiyoka]

hello Lara, How are you doin? I just wanted to introduce myself. I'm kiyoka, I'm 21 from New Mexico. I am started my 5 year of college, i was sick for a year and half, so i didn't do soo well in school. I had ic since I was 19. I have tired pretty much all the oral meds for ic, which didn't work. I have done dmso, heprin instillations. I might not know exactly how you feel, but I am here if you ever need anything. It is hard when you feel so alonely. PM anytime or IM me.

Kiyoka

[mjph]

Welcome.

I spent several months at home as well. The best thing is to start the diet. I recommend Dr. *****'s Diet. You can find it on the internet. It is really tough, but it really works. I wouldn't recommend treatment from her unless you live near enough to see her at her office. I drank only Evian water in the begining. No juice, soda, coffee period. This is the most proactive thing that you can do. You might ask your doctor about physical therapy. Physical therapy cave relief after a month. I also recommend accupunture if you have access to it. I felt relief after my first treatment. Elmiron takes a long time. I was also given a few pain relievers. I can't remember the exact names, but they helped. The big draw back was that I was always sleeping. It sounds like you are at home anyway, so I say better to be comfortable. I think one was neorontine(sp) and another was something that I took at night. Look at the posts. Some pain meds will make it worse, so stay away from advil and pain meds that others have posted reactions to .

The best thing I can say is that you will get better. I know I was really upset and worried I wouldn't ever feel better. You will be in remission and continue your great life as a College Student.

LOL,

Mel:hi:

[ICNJess]

Hi, Lara, and welcome!

I am 23, was dx'd when I was 20, but have had IC since I was very little. Mine became full blown when I was about 16, and I tried to go to college but was unable too and ended up dropping out a few months in. I know how difficult this disease is, especially when you are so young and trying to hold everything together with your life and college and everything.

The path you are on may seem to be long and confusing, but just remember that you are not alone in this, and that as time goes on, things will get better. Just hang in there. :grouphug:

Hugs,
Jess

[IcyAngel23]

I'm sorry to hear the pain you're going thru. I was diagnosed as a junior in college. I had to come home to live with my parents too. I've been battling this for over three years. I've tried Elmrion but it didn't work for me. Studies show that it actually only help about 18% of ICers. I was shocked to find that out. I'm allgeric to it so I can't use it. I'm filing for Disability cause right now I can't finish school or work. I fought so hard for so long to stay in college but in the end taking time off was the best thing. I've done all the treatments with no results. I'm hoping that some treatment helps you. I just want you to be informed. I thought oh it's just a bladder disease and it's not that serious. It is and I put all my hope into my drs. hands. When treatments didn't work I lost more and more hope. Just be realistic in your expectations. To helps the pain I suggest: a heating pad, body pillows(to sleep with at night, hug the pillow and put the bottom part betwwen your legs)this takes pressure of the bladder so you can sleep better, hot baths (or hot tub if you have one)a diary to help you understand your pain (it also helps to get the frustration of everyday pain out on paper for you to see) try to sleep on a matress that has a pillow top(this makes it more comfortable and it gives you the added padding,(firm mattresses can make sleeping worse).
On days when you reallt feel bad treat yourself. Curl up in bed and watch TV or rent movies. I like to watch Tv shows on DVD because they are only 45mins an episode so if you need to got to the bathroom you don't need to pause it as much. I have trouble sleeping so in the middle of the night TV sucks so I like to have them on hand to watch.For me the best thing for pain is just staying in bed. Make sure your bed is comfortable and fufills your needs. My room has a TV,DVD player,laptop,printer,heating pad,lots of fluffy pillows,blankets and a mini fridge with bottled water and some snacks. Living with pain takes a toll on your self-esteem so try to see if anti-depressants are the way to go with you. Most ICers take them for pain management as well. The best advice I can give you is don't let this disease become all that you are. It is difficult not to let it take over your life. If you ever need to talk, vent or just ask questions I'm always here. You can PM me.The key to everything is to keep yourself relaxed and comfortable. Weekly massages help if you can afford them.

[mjph]

I made up my mind to live my life. The best thing to do with a Journal is to get one with pockets. Keep all of you medical records in there. Keep a voiding diary. Talk to us, or e-mail us directly when you are down. There really isn't a lot that I know about Elmiron other than it didn't help me. I had a reaction to it so I had to stop taking it. I am on herbs that really help me. I have accupunture twice a month. I do some stuff that I learned from my physical therapist. It took me two physical therapists before I found one that works. By the way physical therapy is a big commitment and you have to be open minded, but it is really worth it. Sometimes you just need to cry and dwell on it, but try to get out. Even if it is just to hang in the backyard. Be careful with baths and pools. Chlorine, soap and chemicals can make it worse. I recommend soaps, cosmetics, and lotions that don't contain parabens, fragrance, phalates and petrolatum. They can be hard to find. I use organics, vegatable soap, and some other products. You can find them at health food stores and online. Make sure you ask about the four major chemicals. Just because it says organic or it comes from a health store doesn't mean it doesn't contain chemicals. The reason I say this is because the chemicals can really irritate the bladder. 60% of everything on your skin is absorbed. Also petrolatum and parabens may alter hormone levels. I don't know if your monthly visitor sends you into a flare, but for many this a horrible time for IC.

Stay positive.:angel:

[IcyAngel23]

I've been positive and realistic and I"m not in remission. I did PT as well whci created more pain and problems so yes it worked for you but in my opinion it was a waste of my time and it made my IC worse. WE all have IC maybe not the same severity so life maybe be easier for some. I'm 24 and I battle this disease everyday without compliants and keep my mind open to new things. I'm going to start Cyclospoine A (very experiemental only used for extreme case of IC)(I 've seen a bunch of uros some of which are number one in IC)(Dr. Parsons and Mayo clinic uro team) next week. When you try dangerous treatments just to keep looking for a cure or relief you may feel different. Some ICers are helped easily by the drugs available but there is a small group that no matter how many treatments you try nothing helps. I'm still holding out for relief but I"m know it is a long road ahead of me.

[Katrina]

:welcome: I was diagnosed at age 24 but my first symptoms were when I was 13. Some people have found that Elmiron installations help give the Elmiron a head start in working. The diet is a big thing.....some believe if you don't follow the diet Elmiron can't help as much. Self help things help a lot...the links I am giving you have a lot of simple ideas that can make things a lot easier.


I find that antacids were a big help in the beginning. Treating other things going on like Irritable bowel syndrome (IBS) and Pelvic floor dysfunction (PFD) help a lot. I find that liquids are the hardest part of the diet but most important part to follow. Antispasmodics help a lot too.

Your not alone...things will get better. This is just the beginning...it is the hardest part things get a lot better :grouphug:
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

[WhiteWolf]

Desert Harvest Whole Leaf Aloe Vera! I took this freeze dried aloe for a month and felt a decrease in my pain, which is usually pretty bad! I think you should at least give it a shot. The only problem is that it is expensive. Just type in Desert Harvest in google and the website should show up.
Goodluck to you, and remember that you are very lucky to have a family that will care for you in your time of need. :)
-WhiteWolf


Note from ICNDonna: Desert Harvest freeze dried aloe is available in the ICN Shop (see link at the top of this page).