How to help my daughter

[IC Mom]

Hi everyone,
I'm new here. My 24 year old daughter was diagnosed with IC maybe a year and half ago. She just had her second hydrodistention. Doctor wants to do the interstim but that scares us and she doesn't want it so it probably won't happen. I guess my concern is...how do I help her with this condition? I worry about her all the time and try to help her with whatever I can. I feel helpless sometimes. Any good ideas on constructive things that I can do? Thanks.
IC Mom

[BellaTutu]

Hi IC Mom,

Welcome. I"m so sorry your daughter has this disease, its hard as a patient and a parent - I remember my parents when I was first dx'ed at 27, it was hard for them to watch what I was going through.

Interstim is for urgency and frequency issues, not pain control, and in my opinion, is the last option after all other options have failed. What medications is she on or has tried for her IC? Diet? Treatments? It helps to know what she's tried and hasnt tried - that way she can exhaust everything before throwing her hands up in the air.

There are some great links and books out there on IC that explain what it is and how to cope as a family member, its difficult because although we dont "look sick" on the outside, we are on the inside. Its great that she has a mom who recognizes that this disease can and is debilitating - so many parents, relatives and friends just dont understand what its like. Just remember she's going to have her good days and her bad days...she may lash out at those closest to her - try not to take it personally though, it comes with the territory so to speak. Just listen and let her vent if need be...its hard to say "I understand what you're going through" when no one does unless you have this. Sounds like you are already so supportive and that in itself is a blessing!

[IC Mom]

Thanks BellaTutu. Where are the links for families that you referred to? I know just what you mean about people who don't understand IC. Since I don't have it, I don't know if I can fully understand it but being a mom to an IC daughter, I think I can partly understand. Lots of people don't have a clue. These message boards have helped my daughter a lot and myself also. I've learned a lot but have never registered to post before. Knowing there are others out there to relate to can be a big help in itself. Thanks.

[BellaTutu]

You're welcome IC Mom - you're absolutely right, its hard with this disease, but support means EVERYTHING and sounds like your daughter has tons of it.

You can search around here for different books and whatnot

http://www.ic-network.com/handbook/

....there is also the ICA and then there's Jills other site located here

http://www.americanbladder.org/

Not sure if many people know about this one *above*. You can also look for local support groups in your area (look under the msg boards for your state on here).

Hmmmm...seems the site is under construction in certain areas....??

[IC Mom]

Wow! So much information to sort through! How great is that! Going to take some time to get familiar with all of this. Just wish the researchers would figure this darn disease out and get a cure already! Want to see my daughter smiling each and every day. I feel for all ICers. Anybody need a mom? :)

[Tracey5399]

IC Mom,

You seem to be doing a wonderful job understanding your daughter's condition. My mom has a hard time dealing with me since the IC because i am so ill. I just wanted to say what a beautiful soul you have to come onto these boards and try & help your daughter. You will both be in my prayers.

Tracey :)

[IC Mom]

Tracey,
Thank you for the lovely post and your prayers. I'll pray that your mom will come to a better understanding of your illness. I noticed that you're taking Oxycontin occasionally. Please, please, please be very careful with pain meds. I know it's easier said than done when you're in pain but I know what can happen from my husband's history. He took Vicodin as prescribed for 5 years due to chronic back pain. Never abused it at all. He used Oxycontin for a short time also but it made him sick. It's a very long story but he's pain med free now. Not pain free but it's better than it was. He used acupuncture and it helped a lot more than we ever thought it would. Now he's doing physical therapy and that's helping also. He's able to function again but he was off work on disability for a year because of withdrawals from Vicodin and Valium. I want to repeat...he only took everything as prescribed and never, ever abused anything. Valium was prescribed one pill at bedtime to help him sleep. He took it for about 6 months. Big mistake. Huge withdrawal. Who knew? There's tons of information on the internet about medications. We learned not to blindly trust that the doctor prescribing meds knows what he's doing. We found a very knowledgeable addiction specialist that got my husband through all this. He's doing well now but not 100% yet. That was a very long winded way to tell you to please be careful about medications, especially the Oxycontin. We never knew there were other methods, like acupuncture, to help with pain. Great research on the internet to be had regarding pain management techniques. Just like IC relief methods seem to be, they don't work for everyone but it's worth a try.

Sorry for the rambling. I guess it's that mom in me coming out again. Good luck to you and God bless!

IC Mom

[windwalker]

Hi mom, I wanted to applaud you for your wanting to help and support your daughter. Sometimes just knowing your family is listening and trying to learn is a lot. If shes got a puter, make sure she comes here and introduces herself. The boards here, they are just full of info and support too. Her best bet is to read the handbook that was suggested earlier, and watch her diet. There are so many foods that can irritate our IC bladders. Its amazing just how much the diet can help (not saying will, there are cases that are pretty severe). I am just glad to see a family member so willing to do whatever it takes to help her child. If she works out (running, power walking) that could bother her bladder too, she may need to slow down for a little while. Any questions, just ask, we all want to help. ;) Take care!

[IC Mom]

Windwalker,
Thanks for your kind words and your help. I have been reading this site and message boards for a while now and it has helped me learn a whole lot. I know I still have a lot to learn. My daughter posts here occasionally. She's the one that got me involved since she got so much help here. The support is phenomenal and we're so grateful to everyone. Your comment about working out was interesting. She does work out occasionally when she feels well enough. I'll mention it to her. She's open minded and willing to listen to any ideas. I was worried that I was overstepping my bounds by registering on the message board. I don't want to get more involved than she wants me to be but she's such a sweetie...she said it makes her realize how much I love her and understand her situation. She makes me proud to be her mom. So, thank you so much again. I hope you're doing well. Hey, just noticed you're from Michigan...we're from Michigan too! Have you ever attended the Lapeer or the Royal Oak Beaumont support groups? Never done that but I was thinking about asking my daughter if she would like to.
IC Mom

[windwalker]

Hi mom, no I havent attended the support groups, I wanted to a while ago, but there was so much going on that I couldnt get there. I am in Warren so the Royal Oak one is/was closest. I wish I had gone but so much to do and so little time.
As for the working out, if she notices she feels worse after (maybe not right after, could be the next day) thatll tell her to find something else to do, I went from powerwalking and a light jog to just walking, I use indoor walking tapes, tai chi, I can do step aerobics if I am very gentle, very low impact. I skip the ab work, crunches et al. I think of it this way, if it could jostle or move my bladder, I'm not doing it lol.
I am glad you decided to register, you may come up w/something that she doesnt or find an answer to something for her. And isnt it nice to know theres people that can lend an ear (so to say lol).
I am doing fine, out of a flare, most of the time, my IC is in control with meds and alternative herbs. Just once in a while my bladder decides it wants to act up and it does.
Take care and talk again soon!

[dancemomof2]

ICmom,

I also applaude you highly. My mom has mild IC and still has no clue what I go through on a daily basis. Even when she has aflare she swears it is something else, IC couldn't possibly make her feel bad. I have a 13 & 9 year old daughters and a 20 month old son. Life can be very difficult some days for me and I have found myself grumpy towards my family when they tell me to jsut get up and deal with it, my mother included.

I am also an Interstim success and glad to read your daughter isn't jumping into this choice. I am a firm believer that this is an absolute last resort and should only be done when the patient feels that they have researched it enough and comfortable with the choice. I also want to welcome you or your daughter with questions on the Interstim only if you want. I am not one that is pushy about this device.

I have tried for months to get my mom to read the handbook on here and hse just says later, I have printed several things for her and they never get read. I also agree that support and a good ear to vent to is important with this hidden life we live.It sounds like your daughter has that in you and that is great all in it's self. Keep us posted on how she is doing and give her the sight information to look at as well.

[Tracey5399]

Hi ICMom,

Your very welcome, your daughter needs you more than ever now.
i didn't want to give you the wrong impression of my mom, she is the best. Sometimes i can just see how she hurts cause i am so sick. I can so understand how you feel.

i also appreciate your advice about the pain med. I only post that here because i am very trusting of this board and the support i receive. I know what you mean about the dependence thing though and me & my Uro are keeping a close eye on it. When your in so much chronic pain its just a lifesaver to have some relief. However these days i am happy to say i do not take them every day & am feeling a bit better.

I did not mean to make this post about me at all, i will be keeping you & your daughter in my prayers,
Tracey :)

[ICNDonna]

You're doing the best thing you can do to help your daughter, which is learning about IC. The more you learn, the more you will be able to understand what she is going through.

I do have a comment about pain medications and that is to say that, even though I an fully aware that some people do have a problem with addiction, there are some people with IC who just cannot function without help with pain. Many ICers are treated for their pain by pain management specialists. It may be that down the line when they no longer need pain meds, they may need help with weaning away from medications, but that's much, much better than spending a life curled up in pain.

I hope that she will never reach the point where she has a need for full time pain control, but if she does, she will need your support.

Sometimes it's just not easy being a mother!

Warm hugs,
Donna

[IC Mom]

Thanks again to everyone for your replies.

Tracey: I'm so happy to hear you say your mom's the best. The fact that she's hurting because you're sick...I know where she's at. Give her my best. And glad to hear that you and your uro are watching the pain meds thing. But please read my comments to ICNDonna about pain meds below also, ok? I don't want to mislead you or make you feel bad about pain management. And don't worry about your post being about you, for heaven's sake! I'm happy to hear you're doing ok. I've gathered that this message board is all about support. How wonderful is that!

ICNDonna: I understand exactly what you mean about pain meds. For 5 years, there was no other alternative to them for my husband, or at least that's what we were told by his pain management specialist. It's such a difficult life with chronic pain. People need to function and live a partly normal life. Pain is so debilitating. It's a serious problem. Believe me, I know and my heart aches for those of you who are suffering. I didn't mean to trivialize that. I just worry so about pain meds because of what my husband's been through. He has been fortunate enough to be able to stop the meds and find other ways of relief but it was only when he got so sick from the meds that he couldn't take them anymore. Getting off long term pain meds is also a serious problem. So, what's the answer? I don't know. My daughter takes pain meds occasionally but she's not at a point that she needs them regularly and I pray that will never happen. But if it does, we'll see if there's an additional pain relief method out there that works for her. If not, the meds will have to do, as much as I hate them. She hates them too because she saw what her father went through. But you are definitely right...it's better than a life curled up in pain.

Leslie: So very sorry to hear your comments about your mom. Maybe she's having a hard time dealing with it because it's hard for her to see you in pain? There are days that I just want my daughter well and I don't want to deal with IC at all. I hate IC. Glad to hear your interstim worked for you. That's fantastic! Haven't heard many success stories about them. My daughter had her second hydrodistention about a week ago so she's been in pain for a few days but she just went back to work yesterday and she's doing better. Except she started her period and she's always worse then. Is that typical? Her last hydrodistention helped her feel better for about 5 1/2 months so we're hoping this one will do the same or better. She's single, no children, and has a serious boyfriend who is very supportive. You sound like you have your hands full. Children are a blessing. It must be very hard some days though with your IC. Hope you're having more good days than bad ones.

ICNDonna: My daughter and I have been reading your posts about your hydrodistentions. My goodness! So many over so many years! It's good to hear your stories. It has definitely helped my daughter make her decision to have her second hydrodistention. Thank you!

Praying for pain relief for all.
IC Mom

[lilbluedevil82]

HI MOM!!!!
Thanks for loving me!!!!

[IC Mom]

You're welcome, honey...love you from here to the moon and back a zillion times! Hey everybody out there...am I blessed or what! :) :) :)
IC Mom

[windwalker]

lilblue, you are ICmoms daughter? I was wondering who it was. I gotta tell ya, you both are lucky people to have each other, what a bond! :D

[dancemomof2]

Lilblue what a great mom you have. (((((((((((HUGS TO YOU BOTH)))))))))))

[lilbluedevil82]

Thanks guys! She is a great mom and I am lucky to have her!!!

[IC Mom]

This is too funny. My daughter (lilblue) and I (IC Mom) communicating through message boards, email, cell phones, fax machines, voice mail, etc. etc. We're like Jane and Judy Jetson! If only we had a Rosie the Robot!

Keep smiling everyone. It's your best defense against a cruel world.
IC Mom

[windwalker]

Hey if you find that rosie the robot, she ran away from my house lol send her back ;) Take care!

[IC Mom]

Thanks for the laugh, Windwalker! :biglaugh: But if I find Rosie, I'm keeping her!

IC Mom

[ISONormal]

Hey! I want a Rosie and an IC Mom, too! :):)

[IC Mom]

ISONormal: You are too funny! I'm so happy to see ICers with a sense of humor! I refuse to be everyone's Rosie (I hate housework) but I would be happy to be your IC Mom.

[ISONormal]

Great! Thanks, Mom. Can I stay up late and watch "ER"? Oh, never mind, we all see too many doctors as it is. Forget that. How about Animal Planet? :)

And can I have a glass of water?

[IC Mom]

Yes to Animal Planet but no to that glass of water! It's way too close to bedtime. What were you thinking? :tsk:

[IC Mom]

Hey everyone,
I was just thinking. :hmm: I've thoroughly enjoyed the fun we've been having on this thread but do you think my daughter is totally embarrassed now? Oh well, wouldn't be the first time I embarrassed her and probably won't be the last. She's learned to deal with her crazy mom! :loco: I do love her so! :kissing:
IC Mom

[IC Mom]

Ok, it's me again. I've been learning some on another thread about the connection between IC and allergies. Do you guys take an antihistamine for IC? Way too many factors involved in IC. So much to learn. I'm overwhelmed. I will be needing that Rosie to keep my house in order so I can devote my days to research! I may need to take a brain break now and then so bear with me. How do you guys do this on top of your IC symptoms? I've tried to be positive about IC by thinking things like, "Thank goodness it's not a life threatening condition." and that is true but it stinks that you guys have to deal with this. My daughter's pelvic floor therapist told us that she's optimistic because there's so much research going on. That was encouraging! I'm praying for a cure.

[SharonA]

Hi IC Mom and lilbluedevil (Jamie)...I am late in picking up this thread...Sorry.

I am so impressed with you, IC Mom. I think it is wonderful that you are so involved with your daughter and love her enough to come here and learn all you can about IC.

Then, when I saw Jamie reveal herself as your daughter...oh my...the chills ran up and down my back. We all could use relationships like the two of you have. Jamie...you are one very blessed daughter.
IC Mom...you are also very blessed to have such a daughter.

:kissing: to both of you.

:) :) :)

[IC Mom]

Hi SharonA,
Welcome to my crazy thread! Thanks for your kind words. Yes, I am very blessed to have Jamie for a daughter. I also have a husband and son I'm so grateful for. They all give me so much love and care. Wish I could keep them all healthy 100% of the time. I'm workin' on it. I guess we all need to keep positive, huh? Some days it's tough, isn't it? Hoping you have a strong support system at home but I'm finding that, if people don't have that, there's definitely one here on these message boards!

[Dolby]

IC MOM,
You know you should be so proud to be such a supportive Mom! My Mom has been there since day one. She is 77 years old and I am 33. You would think she was 50. She has taken care of me so many times during flares when my husband had to work. We are so lucky to have Mom's like you!! She also is an advocate for me to our family. Helping my family understand more about IC ect.

[IC Mom]

Hi Dolby,
So happy to hear about your mom! Sometimes it's hard to get family members to understand. Some of our relatives don't seem to get it. Not that they're mean about it but I think they feel that IC is just like a bladder infection now and then. No biggie. Well, hellooooooooo...IC is a big problem. What kind of specific things does your mom do for you regarding being an advocate to your family? I'm 50 years old but I feel like I'm 77 some days! God bless your mom!
IC Mom

[Dolby]

Thanks IC MOM! Well I am the baby in the family with three older brothers and two older sisters. Of course most of them don't get the whole IC thing. Especially my older brothers. They want there little active sister back. My Mom has explained to them what she sees me go through on a daily basis along with everything I have tried to be healthy again. She is just like another voice for me when my voice is too fragil to speak without getting too emotional. She also bought the book The I C Survival Guide written by Robert M Moldwin and had them read it.

[windwalker]

Hey mom, you asked about antihistamines, yes, I am on Atarax, a very low dose of 10 mg twice a day. My first few days on it, I was very drowsy, so I started it on a weekend so I didnt have to be anywhere! :) As for the fun and how do I do it w/ic, I am fortunate, that my IC is mild and fun, girl, its nice to take a bladder vacation for a few minutes. I also do tons of research on IC and alternative treatments (herbs), I need to belong to RA, reasearch anonomous. ;) I love being able to preoccupy myself because during that time, I forget a bit about my bladder. Oh, and I dont need rosie, I found ROBERTOOOOO! He "yes dears" me everytime I ask for something hehehehehe. ;)

[IC Mom]

Hey Windwalker,
I love it when people call me mom other than my own kids! Even my husband calls me mom. So, you're on an antihistamine too...what's up with that? We never even knew about this med. :hmm: People have been sending me info, I'm printing it up, and we'll take it to lilblue's doctor. If he doesn't have a clue about antihistamines, I'll be seriously concerned. But I think he will. One can hope. Where did you learn about herbs? Working for you, huh? Ok, my brain is buzzing now. Tell me what you know about herbs but I may have to attempt the research on that another day. And Dolby mentioned that book by a doctor that I've heard mentioned elsewhere on these boards. He must be good. Thanks Dolby.

Glad to hear I don't have to fight you over Rosie, Windwalker. You have a Robertooooo, do you now? Glad to hear you've got him trained right. It's one of the keys to a happy relationship! ;)

[windwalker]

I trained my robot Robertoooo in an hour, however my hubby Phil (philippooo hehehehe) its taken over 11 years and hes still not trained ahahhahaha!
When I found out that I may have IC, I immediately started researching the herbs because I wasnt on any meds right away, went to two uros and the second one finally started the meds, so I spent months researching, still researching to this day, its been over 2 yrs I've been researching. I use search engines, find a topic and just keep going and going.
I started the antihistamines in September of 05. Seemed to help w/in a week even tho the uro said give it three weeks, I am lucky, meds usually kick in quickly for me. The reason is its believed it could be some sort of allergy thing, the histamines irritate the bladder if I have the wording correct, so the antihistamines may help. Most of the time, not all, my symptoms are in control or darn near in control, I do flare, at the end of a flare that started in January, mind you, not everyday, but its less and less everyday. Stared real bad for the first three weeks, then slowly started to subside, found the culprits, stevia sweetener and tooooo much chocolate, I can eat chocolate, but I was eating a TON of it and my bladder decided it was mad lol.
I can give you some ideas for herbs, but I think I'd start w/the uro first and anything you come up with (atarax, elmiron, ditropan, etc) and see what he says. Msg me after you dont have so much to look up and I will give you herb info, just good to start w/the uro :) I have heard of the book that was suggested, however I havent read it.
Hope you enjoy rosie, I'll send u her oil can, shes probably getting pretty creaky. ;)
Dawn

[lrogrn]

IC-Mom, first of all I think it is wonderful that you are even going to this site to learn about your daughters disease. When I told my family about it all they could muster up was OH. It hasn't really been discussed since. When I'm around my family I just pretend everything is ok. I am very lucky with the fact that my IC is not nearly as severe as some of these women. I am on Elavil to help with the pain but have yet to need any pain meds. Although there are somedays that if I had them, I'm sure I would take them. I understand the one's who do have to have pain meds and as a nurse I do believe that there is no need for someone to hurt if they don't need to. My doctors have asked me if I want something else for the pain but my biggest reason is a conrol issue. I don't want anyone thinking I'm not big tough and strong. I guess that stupid idea goes back to being the youngest of 6 kids and growing up one of the shortest and skinniest kids of the school! Any way, I wish my sisters and my mom understood more about it. Even though my husband feels helpless when I feel bad, I do have his and my three boy's support and compassion. There are many a day's when one or all of them bring me something to drink or a blanket or a heating pad when I'm curled up in my bed hurting.
For them I am eternally thankful that God thought enough of me to allow me to have them in my life and I'm sure your daughter feels the same way about you. :smile tee :dance:
P.S. If you ever need another daughter to worry and pray over. I am always in need of a mom. :grouphug:

[IC Mom]

Isn't the internet amazing? We would never get to meet such nice people. Or so many people hurting that we can support and pray for. And we're spread out all over the country, all over the world even.

Windwalker, I'll take your advice and check with the doctor about herbs. Boy, is he going to be sorry I got on the web! :)

Laura D, yes I will be happy to pray for you and be your mom when you need me. Let me know if you have any special concerns. I've been praying in general for all ICers and for a cure. Glad to hear you have great support from your immediate family and I'll pray your extended family will help you too. You must see lots of hurting people being a nurse and I'll bet your experience with your mom and sisters has taught you compassion which you share with patients. I wish you the best!

[Kiyoka]

hello IC Mom, I was wondering if you could also be my ic mom? Hmm i'm kiyoka from New Mexico...hmm i'm 23, had ic for about three years now. I tired pretty much every oral med out there. I found dmso/marcaine instillations have helped a lot. I like watching ER, or discovery health..way more then Animal Panet. I am going to school, and transferring to TN to become a nurse.

[IC Mom]

Sure, Kiyoka. I can be your IC Mom. Happy to hear you've found a treatment that's helping your IC. There are so many different methods to try that sometimes it's hard to hit upon the one for you so I'm glad for you. My daughter's hydro has really, really helped her. Hoping she'll get about 6 months of relief out of it. You like medical shows, huh? So does my daughter! Have you watched the new "Miracle Workers"? It makes me cry. So nice to see people find the help they need. Congratulations on your goal to become a nurse...that's fantastic! There is such a need for nurses now. I really think that when a person suffers in some way, such as with IC, it contributes to their ability to have compassion for others. It's a stinky way to acquire compassion, I know. Study hard, learn all you can, be proud of yourself. You go, girl!

[Julie B]

Hey lilblue and IC Mom, I am from Michigan also. I have been to the Beaumont group, they are wonderful. We do need to get the Lapeer group stirred up a little. Where do you live? (You can email me that if you want: julieabeyerrd@aol.com) We also have gotten together informally over the years, lunch and stuff. It has been a long time though. Maybe we all need to stop talking and start doing. :grouphug:

Also, I communicate with my kids with IM and email and cell phones too. My son (19) is at MSU, and my two girls are at home (24 and 21). I was just having this conversation earlier about how wonderful it is to have this type of connection to the kids when they are older.........so so so wonderful......