Please help me....

[michelesgirl]

Please help me...I have a 21 yr old daughter who has been diagnoses with IC..she is in soo much pain...she says her pain is different at times than others...she doesn't have any urination symptoms...just pain Can this condition cause different pain in the body...like back ach, body ache,whole body feeling terrible ?
She also has endometriosis which she has been given Lupron for the past 6 months to control. The meds she takes on a daily basis is unbelievable...muscle relaxors,elmiron,amitryptline, hydroxzine,effexor,not to mention her pain meds which have by now become addictive...40mg oxycontin with 15mg oyxcodone for breakthrough pain...this has been going on for a year...she was just diagnosed with IC this October so her treatment hasn;t been long. She tries to not eat things that we have read are bad...but the diest is next to nothing...what do you all eat on a daily basis ??
She has a few decent days then wham..a bad one...she takes her pain meds around the clock...God only knows how much pain she's have if she didn't take them...I'm so frustrated for her...

[traceann]

Hi there, I am newly diagnosed myself, but here is a link to the patient handbook on this site, it has been a lifesaver for me, and many others here. http://www.ic-network.com/handbook/

There, you can find all sorts of info, on the diet, meds, self-helps etc... I just started the diet about a month ago, and it has made a huge difference in my pain reduction, without a doc's help. It wasn't easy at first, since I absolutely LOVE food, but I have slowly been navigating my way around, thanks to the "diet and IC" board here too. There really is a lot you can eat, my trouble is just finding the products, I live in a very rural area. I now have some friends who live in Detroit, and they get alot of my things for me. Like, broths without, MSG and loads of preservatives. There are great recipes on this site too. I started with the elimination diet (I use the list of foods on this site in the diet section of the handbook) and am just now adding new foods in to see if they bother me. I have been doing very well on fresh meats, prepared without a lot of seasonings for myself, all kinds of vegetables (frozen, easier to come by this time of year!). Here is a link to the diet page that I and I think most everyone else here has used as a guideline. Everyone is different, but most of the foods on the "usually ok" list is how I started. And it can take some creativity, but I usually can come up with something quite tasty! http://www.ic-network.com/handbook/diet.html

I hope this helps a little, as it has been a great thing for me to use, since the list my doctor gave me mostly had stuff to stay away from, and very few things that were relatively safe for me to try!

You will get tons of info here at this site, and ask any questions you can think of, the people here are SO very helpful to share what they know and their experiences!!!! Your daughter has a great mom! :)

Hugs,
Tracey :) also a newbie

[Alexa]

Dear Michellesgirl,

I was diagnosed when I was 20, and can only imagine what my mom went through too! Your post gives me a glimpse of that :) It sounds like your daughter's urologist is pretty on the ball and trying lots of different treatments. Because IC is such an individual disease, it can take a while to figure out what works for each patient. Starting with the diet is a great idea - that made a huge difference for me. I tried many different medications before I went on Elmiron, and it helped me tremendously, but it did take a good 3 months to kick in. Hang in there - your daughter is very fortunate to have your support. Please tell her to feel free to post on the 20-somethings board if she feels up to it. For now, definitely look through the ICN Patient Handbook because it has tons of great information on dealing with IC. And don't forget we're here for the both of you!

Hugs :grouphug: :grouphug:

[ICNJess]

Hi there,

Like Alexa, I was diagnosed at age 20, though I suffered with IC many years before I was diagnosed. It is so frustrating, but in time, things will become easier for your daughter. I know how frustrated you are, my mother has lost her mind several times with my IC battle (I'm 22 now) and it's a long process, but your daughter is not alone, and neither are you. Please hang in there, and give your daughter a hug for me.

There is a lot of great information here, you could have your daughter read through it, or print it off for her. Hopefully the Elmiron will kick in and do it's job soon, and your daughter will be on the path towards healing. Hang in there!!

Hugs,
Jess

[Jacqui P]

Hi Jess,

I am really sorry to read your message.

I wanted to reply to your post to say that I really do sympathise and understand what your daughter is going through.
I am 20 years old and my birthday is in March where I will turn 21 years old.

I have been diagnosed with Endometriosis since June 2000 when I was 16 years old and believe I have had Endometriosis since I was 13.
My GP is wonderful and always takes me seriously. I would be so lost without her. I also have a brilliant Endo Specialist.
My GP believes I have IC and is treating me for IC on top of the Endometriosis and my GP is in the process of refering me to a new Gyne at the moment who specialises in Endometriosis and IC!

I suffer with really severe pain from the Endometriosis and I think the IC is causing alot of my pain too. I am on lots of different types of meds but I also take Oxynorm and Oxycontin for my pain.
I am at University now training to be a Paediatric Nurse which I love but it is not easy with endo and ic! I have spoken to my GP about alternative pain relief for when I am working on the wards and driving.

I know my parents get very upset and find it incredibly hard seeing me so unwell at times and in such awful pain. One thing I do know though is that I would not be where I am today without all the help and amazing support that my Mum & Dad give me. They are so wonderful and I love them to bits.

I am sure your daughter is also really grateful for all the support and help you give her and I think that supporting your daughter as you are and keep giving those hugs you are giving her, they will really help her. I know all the hugs I get from my parents certainly help, they do not take the pain away but they help lots when in agony!

If your daughter would like to get in touch and email me then she is more than welcome too. I am afraid I have no magic answers but I do sympathise and understand what she is going through and would be happy to speak to her if she would like to. I know how helpful it is to know that you are not alone and to speak to others who are going through the same things as you are.

I hope things improve for you both very soon.

Take care & best wishes, Jacqui xxx

[kelly McC]

When I first started diet it was a challenge I was eating bland foods and very little adding more and more as time went on. Everyone is different and can tolerate different foods. There is information in the handbook on diet.http://www.ic-network.com/bev/ this link has info on cookbook a taste of the good life.. Good luck and hope things improve soon
Kelly

[michelesgirl]

Thanks to all the young ladies who responded to my post. I feel so helpless..Christina is struggling as you understand...I think she doesn't understand how her pain changes at times, sometimes it's different and that makes her scared that something else is wrong. Does this happen to you ? She never has any problems urinating frequently or pain during urination,nir does she have any of the vulvular pain...just inside her body, hips ect...hard to know why..

I have tried to get her to read more but it just makes her anxious, she tries not to dwell on her illness, just tries to ignore it but I don;t agree totally. I told her about this forum and even printed some responces that people have written. Today I'm gonna show her all the responces you gave me, maybe she will log on and read. I need to make her a diet to follow ona daily basis because I know she won't do it alone. Any suggestions on a daily menu you follow ? Right now she is still angry that she has all this stuff wrong amd can't function like before. She use to be on the go non-stop..never home...out having fun, working etc...now she doesn't leave the house..
I miss my daughter....

[amaris]

Since hubby and I both work, I usually keep breakfast and lunch fairly similar on a daily basis and we make a variety of things for dinner. For breakfast I'll have an egg, scrambled or boiled, along with a gala apple. To mix things up a bit I occasionally make homemade biscuits, which are good with butter or cream cheese. I've also bought cereals without preservatives and sometimes eat that with a piece of string cheese.
I am lucky enough that I can keep lunch supplies in a fridge here at work. I go Whole Foods and pick up preservative free bread and sliced turkey from the deli along with cheese to make a sandwich every day. I'll eat some Lay's potato chips or half an apple with it.
Hubby usually cooks fresh or frozen veggies along with a meat. When in a hurry he cooks up meat in olive oil seasoned with salt and pepper. We use garlic a lot too since it doesn't bother me.
I wish you and your daughter the best. IC can be so overwhelming at first. Anger and depression were a normal part of the process for me to learn to accept life with IC and not be defined by IC. It's nice to know she has your support.
Amaris

[traceann]

Oh yes, it's scary when you feel something different or it hurts more one day than another, I went through the whole range of doubts, what if it's not IC and something much much worse etc. Along with bladder/urethral pain, I get horrendous backaches, and the soles of my feet will just ache to beat the band. But then after starting to follow the "food guidelines" (I believe that helped first, since I had only been on the elmiron a few weeks - much too soon for me to "feel" a difference with it), I began to feel better. That helped me realize that it was something that diet could effect etc.

I can't really say I follow a menu, since I do try to change it up, at least for dinners, so I don't get bored. :) My lunches of the moment are bagels and cream cheese and some canned pears. I try to not eat huge amounts at a time, as that "full" pressure tends to bug my bladder, so I eat a lot of smaller meals. Dinner is usually whatever fresh meat I am in the mood for with a vegetable as a side, or some veg mixed with pasta and tossed with fresh garlic slightly cooked in olive oil and basil. There are always great ideas in the "Diet & IC" message board forum. I have gotten tons of good ideas from there to keep things from getting boring. (And I have become completely addicted to Breyer's French Vanilla ice cream)

I am older than your daughter, 35, but I know in my heart I have been undiagnosed for years. Always treated for UTI's. I can understand the anxiety too, when I first came here I was a bit frightened by all the information, sometimes it was overwhelming. I went through a whole range of emotions, first happy to have a name for what I was going through, then anxiety/fear as in "I don't want this!!!" My mom lives with me, and I try to not stress her out over all my ordeals, but she still gets upset seeing me in pain etc. And oh yes, I get angry. Angry that for quite awhile I couldn't do my usual things, couldn't make too many plans for fear of how I was going to feel. But lately I have been feeling pretty good, everyday gets a little better, and I accomplished a pretty good road-trip for Christmas Day, and that has helped to bring some of my positive attitude back. Granted, I have to put a lot of ducks in a row (carry all my meds, heat pads, ice packs, pillow to sit on, snacks I can eat -- I did eat a whole bag of Lay's regular potato chips--etc.), but that alone gave me confidence I would be fine, only thing missing was my own bed and/or couch! :)

As all the other ladies said, it just takes time. I am surprised that I feel as good as do (don't want to jinx myself, :) ), but I know that it will hopefully get better yet, as I have only been on the elmiron two months. It helped me to come here and read the posts of people who are feeling good, kind of calmed me down, and gave me hope. Everyone is different, and I had to realize that, just because someone else experienced something, it didn't mean I would. Just as with the diet, everyone reacts differently to a certain food. I built my menus from the handbook and the link that Kelly McC gave you.

I hope this helps a little, it's hard to give a definitve formula for anything with IC, lots of trial and error, but then in the suggestions, I have been able to come away with something that has helped me. I have learned so much more from these ladies, than I learned from my doctor!

Take care, keep us posted and tell your daughter she should really should contact one of the girls, or just start posting here: her fears, questions, etc...it made such a difference for me. I have been so much more capable of emotionally handling all of this, knowing I can come here, and have someone be able to relate to me!

Tracey :)