Can't Do This Anymore

[MerryBerryMoose]

I am so tired and sick and ****** off with this whole IC cr**. I can't take the constant pain anymore. I am in a flare and have been sitting on the potty for 2 hours (so far...). It's 12:54pm and I havn't slept in two days because of the pain. I am sick to my stomach. My mom got me to take a left over Vicodin and all that did was make me dizzy and even more nauseous. She's asleep now. Couldn't take my crying I guess. She also accused me of being rude (not sure why). She said there was nothing she could do and that was that. She told me not to even think about asking her to call the doctor or take me to the ER. That she would have to wait 5 hours just for them to give me a morphine drip and how she would have to listen to me complain about it. Which I do not do.

I had to take a 45 minute car ride to my tutor, stay for a 2 hour session, and take a 45 ride back. On the way back I thought I was going to die from the pain. I bit my iPod's headphones so hard I broke all the way through the cord (oops...). When we got home I bolted from the car, ran to the house, went inside, and made a streight line for the bathroom...havn't left it since...

I take Elmiron 100mg 3xdaily, Atarax (some dosage I forget) at night, Ditropan XL 10mg 2x daily, Seasonale, and Prilosec. Nothing seems to work. It used to but now it stopped. I had previously taken Elavil. But it made me gain 35 lbs and gave me an arithmea (sp?) and tachicardia (sp?) which I still have dispite discontinuation. I tried Hytrin which made my blood pressure drop so low I couldn't stand up. Tried....oh darn....I forgot the name....but it did nothing for me. I do the diet thing and that's hard enough. I am lactose and soy intollerant. Can not eat fatty food due to lack of gallbladder. And don't care to eat/drink junk. I can't eat out anymore due to this.

I refuse to try instalations due to a VERY traumatic cath. experiance. And I can think of nothing else to try. (Btw, I use TENS every now and then but it doesn't always help). My doctor refuses to give me anything stronger than Tramadol (which has stopped working). And he is one of the best in a 2 hour driving radious. He knows IC up and down (for the most part).

I'm at my wits end and can't do this anymore. I can't take the pain. I am 17 and it feels like my life is over. I don't see my friends anymore. I can't go to "regular" school (I am home schooled) and I can barely go any other places (mall, grocery store, PT, doctor, tutor). Havn't seen a movie in a theater in over a year and a half.

It just seems like there is no end in sight....


sorry about the vent/rant....

[steph4308]

I hope you are having some relief by now and are in bed sleeping, but if not I'm up with you. I know just what you are going through except that I'm a mom and my two teenagers probably think I am a huge mental case.

I just got over one of those "sitting on the potty for two hours" flare. My husband ended up bringing a dvd player and quilt in for me.

I think we ICers should be as proud as marathon runners when we can make it to the doctor's office without exploding. Especially when we wait for an hour to be seen and don't go postal with the entire staff. What you accomplish every day is awesome considering the way you feel.

Are you homeschooling because of IC? We homeschool too.

Can you take any other form of pain medication other than Vicodin? I take Darvocet and it works fairly well. My mom gave me one of her Vicodin last summer while I was visiting and it made me throw up too (I think it was too strong).

I'm praying that you'll be able to get into bed and sleep well!

[Sheryle]

Please just remember that alot of us have been there and things do eventually get better. You have to hang on to hope when hope's all you've got. Remember, too, that you have all the support and prayers of us who read your post. God is able....:angel:

[July]

Sending hugs your way to bring you some comfort in this difficult time.

[petrie86]

MerryBerryMoose,

I know exactly how you feel. I've been at the end of my rope more than once. I'm 20 and feel like I dont have a life. My bf think's I'm crazy when I sit on the toliet for hours at a time. I told him we need to install a tv in the bathroom and a really comfortable toliet!!! He just doesn't understand the pain we go through. I'm here if ya need to talk.

[ICNDonna]

It sounds very much like it's time for you to see a pain management specialist, but it might be a good idea for you to try instillations first. Some ICers find those really help. And I suggest you practice some relaxation techniques before you have an instillation. What works for me is to lay on my back, put one hand over the other at about waist level, and concentrate on breathing slowly and evenly while relaxing all of my muscles.

And ask for the smallest catheter they have.

Warm encouraging hugs,
Donna

[traceann]

I know how frustrating the diet can be, especially in the beginning of it when you are figuring out your trigger foods. There are lots of ways to avoid soy and lactose (for me soy was the biggest killer to my bladder!), it just can be a pain - I know - lots and lots of label reading...

But I did eat very healthfully in the beginning - lots of fresh foods like chicken, steaks, friendly pork (no additives) and lots of fresh and frozen vegetables. I would save left-over veggies from the night before's dinner (lots of broccoli eaten, one of my faves) and toss it with pasta the next night along with some fresh garlic, olive oil, salt and whatever other herb I was in the mood for, usually thyme or basil. There are a lot of friendly herbs either fresh or dried to make meals tasty, lol. I grabbed whatever I could and started experimenting from there. ;)

I also discovered I loved sweet potatoes - prior to IC I wouldn't even try them, lol. Now I love to cube them up, toss with olive oil, friendly garlic powder (always got mine from Trader Joe's) and salt and then roast them until golden and tender. Regular potatoes are great that way also. As Donna's mentioned before she makes lots of homemade soups, that's a great healthy alternative! It may take a bit of time to find good stock or to be doubly safe, make your own, but that's something that can be frozen and kept on hand to use as needed.

And yep - I too have had the "might as well just sit here cause I am going to be back in here in a minute or two anyway" nights and days. And the more you stress over it (if you are like me) the worse it makes it. It can be an awful cycle. But don't give up hope, I too felt like my life was over and I was diagnosed when I was 35-36, but I was wrong as my husband loves to point out to me. I just know that sometimes it does feel like it's never going to get better and it's hard to believe when someone tells you it will - you won't believe until it starts to happen. Have you been back to your doctor recently to let them know things are changing for you pain-wise? As Donna said, I too think it sounds like you'll probably want to go to a pain management clinic if what your regular doctor is doing isn't enough.

Hope you are feeling better and at least got a little sleep - my heart goes out to you cause I remember the many many sleeplessn nights I spent with my toilet.....

BIG hugs!

[MerryBerryMoose]

Are you homeschooling because of IC? We homeschool too.

Yes, I am home schooled because if IC and because of the way the school district reacted to my diagnosis. They didn't think I had IC, they thought I was faking to get out of going to school. I was classified as special ed. (under "emotional disability"...had "depression" which, after thee years, turned out to be an adrenal problem). So that automaticaly made me a liar/faker. They also did some boarderline illigal things (such as speaking to my uro w/o permission and pressuring him into saying I am fine to attend school). My mom (and I) couldn't take it so she just decided to home school me. I want to go back for my senior yr though. Although I am deathly afraid of having a flare in school...when I went for Regents tests last year, I took my ouwn TP with me. I got some funny looks :-P

[meme]

So sorry you're feeling bad. It sucks having to deal with this all the time. Can't say I blame you about the caths. I'm scared to death of them too. I had a REALLY bad experience and it took me years before the thought of it could be mentioned w/out me getting shaky and sweaty and feeling faint. I've had to have it done a couple times since, and it's no fun, but at least the faint feeling isn't quite as bad anymore. Have you tried Elavil with your Elmiron. I tried all the other big name drugs you see on tv and none of them worked, but the Elavil has been a godsend. I'm doing so much better, almost in remission. I'm not trying to rub it in, just give you hope, I had so many nights up crying also thinking I was never going to get better. Good Luck. Hope you are feeling better.

[Berkshire Road]

Oh, I know how bad you feel. I've been through some times when I didn't think I could go on. But it turned out, I could. And so can you. Women are strong. I'd always been a very active athletic person, and having to change that lifestyle was so hard. And I am sure it's even harderr for you because you are young and this should be your time to enjoy life. And you can't even make your own decision to go to the ER, you have to depend on you parents. But, try to understand that your illness is probably almost as hard on your mom as it is on you, and that may be why she snapped at you. She's tired and stressed too. I know when my daughter has health problems, I feel awful -- like I should be able to make it all go away, but I can't.

I really wish you would re-consider the instillations. They are such a help for so many of us! And they only use a tiny catheter. My doctor uses children's sizes only. The whole thing is over in less than a minute. That might be the one therapy that's going to work for you; please don't shut the door on it! Maybe if you explain how upset the idea makes you, they'll let you have a xanax or something ahead of time to relax you. They did that for my daughter when she had to have a vaginal exam at age 9, because she was terrified.

I agree with everyone else's suggestions that you should be taken to a pain clinic. There's no miracle cure for IC, but the symptoms can be treated effectively in a lot of cases.

You must feel so alone right now. But you're really not; everyone here is ready to offer support and kindness. I know it's not the same as having a normal high school social life, but at least it's a start. Maybe when you get your pain under better control, you'll feel less depressed and more able to reach out to you friends, even if it's only on the phone at first.

The odds are very much in your favor that you will have a remission. Don't give up. You have so much living ahead of you!

[kjd]

MerryBerryMoose
i am soo sorry you feel this way, I wish I could hep you I really do!!!
As for not sleeping, I know how you feel....how annoying!!!! I had to go to work yesterday and I only had an hours sleep. I feel terrible but the pain kept me awake, oh and running to toilet:cussing:

Well I am shocked your mother can be so selfish and I am sure you are feeling quite hurt right now! I am sure she didnt mean what she said and is probably very frustrated that you cant help you which is why she is getting mad:mad:
At the end of they day the pain you are having is not your fault and I dont think you mom really understands how you feel. You did not ask for IC and its NOT your fault!!!!!
I would maybe try to talk to your mum some other time but without getting angry and telll her exactly how it feels to have IC. Or even print some informaiton from this site which explains how horrible and cripping IC is.....maybe then she will be more understanding??!!!


How long have you been taking the Elmiron, atarx and ditropan for? has your doctor suggested why it may no longer work?? How long have you been in this much pain hon?? I would def go back to your doctor as there are other medications availabe or you may just be going through and extremely bad flare! In which case it will calm down soon I promise. I once had a 6month long flare so I know how it feels to be sat in the toilet for hours crying!!!:toilet:

You do not deserve to feel this way so make sure you get yourself back to the doctor asap and make them listen to you!!I
I gained 28 pounds and feel so depressed but theres not much we can do about it I am afraid, so try not to let it get you down.

I suffer with ME and IBS so I rarely go out now either and it reallly gets me down. I always thought that at the age of 24 I would be out partying and having fun but I now have such severe fatigue I can brush my own hair let alone see my friends!!

Oh and the diet is a nightmare isnt it!!!! Try doing a food diary and see how you feel after each meal and record it!!

My doctor is useless too so I have to travel 6hours to see my new IC doctor...what a joke!!! I do feel so sorry for you as I know how it feels to be told there is nothing they can do!!! that is rubbish and no one can live their life in this much pain....you need to get a new doctor asap and make sure they listen to you! You need to be assertive and dont let them itimidate you! They have no right to expect you to live like this!!!

Oh and know you are so young and it feels like things will never get better but I promise you that things will improve! I know that you feel like your life is over but I promise you that it is not. You NEED to be strong and realise you are not alone and you will get this this crap but it wont be easy. Keep fighting and stay stong! Concentrate and finding a new doctor!

I think you are doing so well so make sure you are proud of yourself
x

[Roxie2007]

HI! I used to have those "having to sit on the pot for hrs" sessions also....but not since I started the Elavil. Have you tried that?? It has worked wonders for me and frequency. When I have flare up my dr. prescibes several days of Cipro 500mg. for some people Cipro works (even tho my cultures for UTI come back negative EVERY time!) My dr. is an IC specialist in Houston and totally believes that every person with IC has some different symptoms, characterists and results...... I hope you find something that works for you! Roxie

[waterflow]

Can you have someone else take you to the ER? I don't understand your mothers reasoning. Where I am if you have medcaid you can make arrangements with them to take you to where you have to go. How about a church member? I hope you get some relief from the pain. :grouphug: I understand how you feel that your life is over. I have thought the same thing over and over.