18 with ic

[lizzie2994]

i'm 18 and i have ic and i was diagnosed with it this year as a senior in high school. its very hard for me to cope with because i know no one my age that has this. i feel all alone sometimes. but reading everyones posts really helps me. i just feel so frustrated dealing with this. i am on the ic diet and i feel like it barely helps. if anyone has any advice that would be great. =)

[ICNJess]

Hi there,

I know how hard it can be to be a high school student with IC. I was 16 when my IC got bad. That was almost 10 years ago and no one would dx me with IC because I guess they didn't think it occurred in people my age! So I didn't get the dx until I was 20. I remember being in pain and leaving school early to go home and rest and I remember frequenting the bathroom! The IC diet is a great place to start for sure. If you ever want to chat, just drop me a line via PM. I know you feel alone with IC in your everyday life but just know that you can always come here and vent or ask questions or whatever! You're definitely not alone. :grouphug:

Hugs,
Jess

[babygirlh1]

Hi Lizzie,

My heart goes out to you. Have you done an elimination diet? Where you basically stop eating all foods except safe foods. Then you slowly introduce other foods so you can find the foods that trigger your IC. This prodcess helped me greatly! What meds are you taking? If you just started meds, please be patient because some take quite a while to work.

I'm not an IC epxert, just someone that had a miserable time with IC and now feels blessed that I have a producive life again. If I can be a shoulder to cry on or ear to listen - please don't hesitate to contact me. I'm also on myspace.

Hope you get some relief soon!

[lizzie2994]

Thank you so much for all your advice!! i really appreciate it! I do have a list of food i should and shouldnt eat, but i dont know exactly how strict to be with it. I also have prelief. i never eat the food on the bad list however. the only medication i am taking is urelle.
Thanks again so much! <3

[jessied]

I have had IC since I was 14. I am almost 18 know. I had a awful school and i had to quit. They said IC wasnt a reason to miss school. PM me if you ever wanna talk

[crkshnks79]

Hi ! Its tough to go through this at any age , but Im so sorry that you started so young ( that goes for Jessie too !!) . I started at 21 but mine wasnt bad and it went into remission until I was 24 /25 . Has your doctor talked to you about any other medications ? If you dont mind me asking , what are your symptoms ? I know Im 10 yrs older then you , but Im a good listener , if you ever want to talk about anything please feel free to pm me . I hope you feel better !!!
((((hugs))))

Lauren

[StariNiteSkyy]

I am 17 years old with IC. I also had to quit school becuase of "poor attendance." I would always been down at the nurses station and they never believed me. :cussing: I am consider going back this year to finish up because I now have a diagnosis and no one can doubt me now.

STAY STRONG!

[petrie86]

I was 18 when i started ic symptoms.... I'm 22 now and starting to have a normal life again thanks to meds and dr's. wishing u the best of luck!

[ljarman]

My daughter is a senior this year and has IC, as well is myself. She missed so many day's last year she was homebound with a teacher coming out to the house 3 times a week. This is her senior year and she is wanting to attend school. She has a hard time with back aches from the hard chairs. Do you? I also had her urologist write a letter to excuse her for bathroom breaks but she also doesn't want to call attention to herself or be treated special, do you feel like that also? She has loratab to take for pain but that makes her sick to her stomach and she is still in pain, sitting in a warm bath helps her alot. Have you tried the warming pads you can apply to your stomach? I hope your school year goes well for you. :angel: Take care

[nancym]

My daughter is going to be a junior in high school this year. Just diagnosed with IC in March. Last semester she was too embarrassed to leave class to go the bathroom, so she sits through class in pain. This summer has been a nice break for her since she can stay home, but classes start up again in a few weeks and she is worried whether she will be able to sit through class or not.

She takes Elmiron 3 X day but that has not helped at all yet. Has only been on it for 3 months though. No bad side effects though, so she will continue. She takes Elavil at night and thankfully that helps her sleep really well. She just can't get any relief during the day, goes to the bathroom every 15-20 minutes like clockwork. We are considering bladder instilliations, but she is very nervous about a catheter, and I don't want to do anything that will cause her more pain. Have any teenagers had instillations and had any success with them? she is pretty strict with diet, but that doesn't seem to help either.

[ljarman]

I'm sorry to hear your daughter is going through the same. My daughter has started instills in the Dr. office she started 3 times a week for 6 weeks then she visits when she needs one. She also was scared to cath but the nurse has ic that was doing the instill so she knew how to talk her through it. We were grateful for that. I currently do instills at home on myself. The lidocaine helps me. My daughter didn't have any luck with Elmiron, hopefully yours will. But to answer your question the instills did help some. She currently watches what she eats and takes prelief to remove any acid from her food or drink it's over the counter, then 1 antibiodic a day, urelle 1 tab 4 times a day when she is in a flare and loritab for pain when its real bad. I don't know if heat helps your daughter but we get the heat pads you can stick on under your clothes and it helps some. Please let me know how she is doing. Best Wishes

[nancym]

Thank you for your reply.

What type of instills does your daugther get, Elmiron or Heparin? How long does the relief last after an instill? Also, how long did she try the oral Elmiron for?

Does your daughter think she will be able to attend school more comfortably this year with her current treatments? I hope so...

[ljarman]

Good Morning,
My daughter receives a lidocaine instill mixture, we have tried a few but this works good for her. She was on Elmiron for 6 months . She started school last week and has had alot of back pain but is trying to work through it. We are having a problem with her pain medicene when she takes it she feels sick to her stomach and it still doesn't take away her pain so we have an appoitment to see if we can change it or what we can do about it.

[nancym]

Sorry to hear she is still having the back pain. Hope she can get that under control and be comfortable enough to get through the school day. That seems to be the biggest challenge for kids with this condition. Best wishes for a susscessful senior year. Keep us posted on her progress.

My daughter has an appt with her uro on Wed, so we will discuss the instills. She seems to be a little better the past 2 weeks though, not complaining about pain so much. So, we may hold off for now and see if things continue to improve on their own. But, the real test will come when she has to sit through class in a couple weeks. If she can't do that, I think we will have to try the instills.

Thank you for all the info. It definitely helps to hear from soemone with a daughter around the same age going through the same thing. There's a lot of info on these boards, but very little of it is specific to teenagers and the challenges they face with getting through the school day.

[smcclafferty]

Sitting on chairs, especially hard ones is a major problem for me as well. It aggravates my bladder and lower back...I am always fidgeting in chairs all day long, however, I am age 37 and not in school anymore.

[nancym]

My daughter has been starting to feel better since about 3 weeks ago.
Not really having pain anymore, able to go much longer between voids. Can sometimes go well over an hour, when she used to go every 15-20 minutes. Has been fairly comfortable at school. Not sure if the elmiron and diet are finally kicking in, or if it is because we increased her elavil dose about a month ago. She increased from 10 to 20, then up to 30 mg. About a week later she was feeling much better. Hard to say what caused the improvement, but we are not chancing stopping anything right now to find out. Hopefully the improvement continues and is not just temporary. She still seems to go to the bathroom more frequently at home, probably out of habit and because she can, but she doesn't seem to be having trouble holding it at school. Thank goodness, because I was so worried she wouldn't be able to attend school. She sleeps great with the elavil too. Sleeps for about 6 hours before having to get up to go to the bathroom, then can go back to sleep for a few hours on the weekend.

[an0bgobeloba]

i'm sorry you are going through a rough stage and feeling overwhelmed!!! as you can see from the boards it is a very common feeling! i am young too (25) my first thought when i was diagnosed is that i'm to young to spend the rest of my life like this!! i cling to the words of others here and remind myself that most people improve given time with the right meds. the very good news is that the sooner they catch ic the better its response to treatment! so the odds are in your favor that you will get your life back!! let us know how the treatments are going for you!

[ljarman]

Nancy, I'm so glad your daughter is feeling better. My daughter is just taking it day by day and has also felt better here lately. We have an appointment with her uro next week and he is going to change her pain med's the loratab makes us both so sick and we still feel the pain. We only take pain med's when we can't control it any other way, but just like your daughter you can't be at school and take pain med's. Did your daughter try the instills? We also use a warm sitz bath instead of the tub, and I purchased a portable toliet for the truck when a restroom isn't available. Hope your daughter continues to feel better.

[nancym]

No, she didn't try the instills because she started to feel better before we got around to it. Hopefully she won't need them, but if things go downhill, we will definitely consider. Glad you daughter is doing well. I'll keep my fingers crossed that it continues to get better for all of you Take care,

Nancy

[toastandsausage]

I'm 16 and have 0% life with IC, and I have been to school for one hour in the past 3 weeks. I had to get letters from the doctors etc to stop them kicking me out. I want my work sent home, but they arn't listening so I'm going to fail. :confused:

[nancym]

What treatments are you receiving? Elavil has been a lifesave for my daughter.

[toastandsausage]

I'm on Ranitidine HCl. I don't think we have Elmerion or whatever,or the one you mentioned in the UK. I've been on a few meds but none have worked, so I'm on one that they usually don't give to people as it's so expensive...

[nancym]

I just looked up that drug and it is an Acid reducer. Completely differetn than Elavil. Elavil is the brand name for amitryptiline and is very inexpensive. I'm pretty sure they must have it or something very similar in the UK. Is your doctor a urologist? You should mention it to him or her.

[ljarman]

I am so sorry that you are going through this rough time. Last year my daughter had to be homebound a teacher would come to our house a few times a week so she could still do her work and finish her junior year. Does your school offer anything like that? Their were times when I even had to cancel the teacher from coming out because she was hurting so bad. Have you found any relief from any med's or any home care? Have you tried warm baths, heating pad, or cold gel pack? I hope you feel better soon, let me know how you are doing. Lisa:pray:

[ljarman]

Nancy, How is your daughter doing? Thank god my daughter has only misses 8 days of her senior year so far, we see our urologist today she has been having muscle pain and headaches. Does your daughter ever complain about this? If I may ask what state do you live in? We are in Oklahoma. Do you have an IC support group? Take Care, Lisa:angel:

[nancym]

Hi Lisa,

So glad to hear your daughter is doing well with school. That is great! Are the muscle pain and headaches something new that has just started? No, my daughter hasn't complained of muscle pain or headaches. Her pain level is pretty good now, but frequency and urgency are her main problems now. She hasn't missed any school yet. She started feeling a bit better almost 2 months ago, not sure if it's the increased dose of Elavil or if the Elmiron is kicking in. Saw her uro yesterday and he thinks her frequency is still too high, which I agree with. We are going to experiment with increasing her Elavil dose a little bit more to see if that helps. He also wants to try switching from ditropan to vesicare. I don't know if those things help at all??? I would rather only change one thing at a time so we will know what is actually working.

The URO suggested thinking about an interstim in a couple of months if no further improvement in frequency. That seems a bit quick to me to start thinking about an interstim since she is so young and just started Elmiron and elavil 4 months ago. Certainly not something I want to rush into. Some folks have said they start feeling better on Elmiron after 8 months to a year. So I think we should at least wait that timeframe. If we do go with an interstim, I would probably wait until summer vacation so it doesn't interfere with school and she will have been on Elmiron for a year at that point. Since she is doing okay with school right now, I don't want to rock the boat. Of course if things get worse or go downhill, I would reconsider.

We live in Maine and there are no active support groups unfortunately. She is so shy she probably wouldn't want to go anyways. Foturnatley we have found a good doctor who specializes in IC and the treatments have been helpful so far.

Good luck and keep us posted.

Nancy

[ljarman]

Nancy, Yes the body aches and headaches are pretty new, but I have read that it can accompany IC. I also talk with a girl I met at an IC meeting who lives in Fort Smith Arkansas and she has tried the interstim and I think your opinion about taking it slow is correct. Does your daughter have any girlfriends that have IC? My daughter would certinaly be glad to email her back and forth or can talk or these days text her for a support person of the same age, like your daughter Brittany is shy but during a flare it would help her also I think to have someone her own age to communicate with if your daughter would be willing, I'm kinda speaking for Brittany, but I'm sure she wouldn't mind. I will talk to her about it after school. I'm glad she is doing good. Brittany and I are on the IC friendly diet and are starving...haha We are also talking to the doctor about her not sleeping. Take Care, and the best of luck to you and your daughter, Lisa

[nancym]

Hi Lisa,

I think that is a great idea. Erika doesn't know anyone else with IC. I will talk to her about it after school and see if she is up for it. Funny.. my other daugther's name is Britni. Thanks,

Nancy

[ljarman]

Nancy, That is odd because my son who is 21 his girlfriend is Erika,. Ok and do you also have an Ashley? that is my other daughter and my son is Eddie? How strange..haha

[nancym]

No, I only have the 2 girls. You must be busy with 4!!

[ljarman]

After May 09 I will be an empty nester, don't think I will handle that well..Being a mom always came first. My daughter Ashley lives in Spring Texas, and my son lives in Tulsa Ok then Brittany is my senior. I also have a grandaughter who is 4. I also enjoy my grandma she is 84 I took her to San Diego this summer and Las Vegas last year. I have never been to Maine. Were you born and raised there? Oklahoma has been home for me I have lived in Texas for a while. My husband travels alot so I will travel with him after Brittany starts college, and we will sell the house.

[nancym]

I'm sure it will be an adjustment after having kids around fthe house for so long. They grow up so fast. I will be in the same boat in a couple years. I also have always put my kids first and will need to find some new hobbies to keep me busy once they both move out. The travel sounds like fun. Yes, I have lived in Maine my whole life. I love it here. The winters are long, but the rest of the year is just beautiful. If you ever get a chance, you should defnitely check out Maine. Summer is the best time, or October during peak foliage season.

[toastandsausage]

I just looked up that drug and it is an Acid reducer. Completely differetn than Elavil. Elavil is the brand name for amitryptiline and is very inexpensive. I'm pretty sure they must have it or something very similar in the UK. Is your doctor a urologist? You should mention it to him or her.


Hey, I'll ask her about getting an amitryptiline. I've been on quite a few things, but I don't even pay attention to what they are because they never work, I just let my mum feed me them or take them when I'm meant to for the 6 months they are meant to take to work. If it's an acid reducer then would that not just stop the burn (which it hasn't done)? I just want that urge to go away. I was on Buscopan for that, it was an antispazm medication I'm sure but it made no difference...

ps; my doctor is not a urologist, that's why she has refered me to a IC specialist. Who's a man. Which I'm dreading.

[nancym]

My daughter's urois a man, but fortunately, he's never had to physically examine her yet. He basically just asks her questions. So it has not been embarassing or uncomfotable for her to have a male doctor. That is great that you will be seeing an IC specialist. The amitryptiline does 2 things... helps you sleep and takes the edge off the pain by interfering with the nerve signals somehow. It's been around for a long time and is considered very safe, and it works for a lot of IC sufferrers. Good luck!

[nancym]

Lisa,

I sent you a private message. Let me know if you don't get it.

Nancy