Overwhelmed by IC

[bluestarsic27]

Hi everyone! My name is Tasha and I am a 20 year old college student who has just recently been diagnosed with IC.

I was diagnosed with IC on July 31st, 2009 after having a cystoscopy performed by my urologist. I am now on several different medications, including Elmiron, and I have been following the IC diet I was given since Juthe beginning of July.


I always seemed to have a problem with feeling like I had to pee all th time, even when I had just gone, but I thought nothing of it. But then it got much worse. I couldn't have a glass of water without feeling like I had to go to the restroom. And it was no longer just urgency, it was pain. I couldn't sit upright in a chair or walk around without feeling an tremendous amount of pain in my lower abdomen and pelvic area. Then it was keeping me up all night. I finally just started to sit on the toilet all night long since I found no reason to ever leave the restroom due to the constant urgency. My all-night restroom ordeals left me exhausted the next day and I could barely function. I kept telling my family that something was wrong,and that I was in pain, but I didn't have a clue what was causing it. There were too many symptoms that I couldn't figure it out to be one thing or another. I started seeing my doctor in 2008 for my pain. I spent so much money on doctor appointment after doctor appointment, and test after test, but they never had answers for me. All the while, my family was becoming more and more frustrated with me and eventually they began telling me that I was a hypochondriac. My mom finally told me that she wanted to go to my next doctor's appointment with me, and when we went, my doctor told me it was all in my head and that I needed a psychiatrist. I was devastated. I knew my pain was real and from that moment on my entire family doubted me. I continued having tests done, but with no proof of it being anything but a figment of my imagination, my mother got fed up and told me to see a psychiatrist. I went as she asked me to and the psychiatrist told me I was just depressed. I think the blank expression on my face said it all; my heart knew my pain was real so I got up and walked right out of the office. I begged my doctor to keep looking, but she kept saying it was all in my head. My family began getting angry at me for being in the restroom all the time, for being 'lazy', and for refusing to stop 'making myself sick' when I was "perfectly healthy." The tension grew with each day and I didn't know what to do. They didn't believe me, and I had nothing to back me up to prove to them I wasn't crazy. And the added stress just made everything worse. I would get screamed at if I was in the bathroom repeatedly or if I was sleeping during the day trying to catch up on the sleep I missed from being in the bathroom all night.

Then on an evening of March of 2009 my mother sat me down and told me that I had two options; I could take a 50mg antidepressant from that day forward or I could pack my bags and get out. She said that they had all had enough of my insanity and that enough was enough. I begged her to understand, but she didn't. I told her I would leave the following morning.

She dropped me off in the driveway of a friend's house in the middle of that night however because she caught me in the bathroom again. I tried my hardest to ignore my pain and the urgency... but IC isn't something a person can just ignore.

I switched doctors and by some miracle they knew what IC was and were able to diagnose me. I had never even heard of IC until my new doctor explained it to me in June 2009. After my procedure (cystoscopy), the doctor expained everything to my mother. She said she felt badly about what happened before... but since IC isn't like a cold that goes away in a week or two, she said that my family didn't want to put up with it and didn't want it to become a problem for them too.

I have now been living with my friend's aunt and her family for aboout 6 months now. I have been very positive about my treatment and about my diet, but recently I am feeling very bummed out because I can't do very much. I can't go anywhere that is more than 15 minutes away because the car ride is too painful and I always need to be near a bathroom. I can't swim with my friends since the my IC has caused me to be sensitive to the chemicals in the water. I keep having these weird spasms and aches all over my body that I can't explain, and my pelvic feels like someone punched me with a handful of sharp objects. I have been told I am no fun anymore because I can't do things like I used to and I can't eat at the places I used to anymore. Most of what I do is limited to whatever can be done while laying sideways or on my back, usually curled up in some weird shape. The baking soda baths don't seem to help and I am at a loss of what to do now.

Please don't misunderstand me- I am not suicidal, I am not trying to be negative, and I am certainly not seeking sympathy; I'm sure there are many other people suffering from IC like this too. I just need some suggestions and support. Is there anything I can do to ease my pain that maybe I haven't heard of? My doctor said he wants me to do a clinical trial since I have such a severe case, but I am nervous about that. But then again, what do I have to lose? And are there any activites or projects I can do? Like maybe other IC patients know of some sort of hobby or something that I could do?

I'm desperate for suggestions.. my life has now consisted of sleeping, making restroom trips every fifteen to thirty minutes, following my diet, and trying to complete my hw for my online classes. ( I am trying to do school, but right now I am having to consider applying for disability since I can't get a job or work with my IC acting like this. I have no source of income and all of my savings have gone to paying medical bills.) I will say that as of now it is week two of school and I haven't done much as far as my classes go since I am too exhausted and fighting migraines. I get a lot done on my "mild days" but things have been severe lately and it's getting in the way. I am also facing the fact that I need to move out of my friend's aunt's home, but frankly I have no where to go.

I'm having mixed feelings right now, but I am hopeful that someone may have some encouraging words for me. My IC is overwhelming my life right now and I am trying to stay strong... but it is hard because I don't know a single person who is going through IC besides myself and I don't have support from anyone besides my urologist.



I hope everyone is having a great week!! Take care!:)


So...... that is the end of my novel... any suggestions? (please?)

[nottoc4]

I am so sorry you are having it so tough. I was like that in the beginning but my husband was very understanding and supported me. I had symptoms for about 2 years with no diagnosis before finding my UROGYN.It took quite awhile for my symptoms to ease up including 2 rounds of bladder instillations my GYN did with an Elmiron cocktail. Has your Dr suggested instillations?If not bring it up with him/her. The diet and keeping a food journal helped me out so much. Many of my medications had citric acid in them and other preservatives and dyes that caused me problems.I am finally on the right medications for everything including IC and have been pain free since March of this year.Hang in there,we all know what you are going through.Jo:pray:

[ICNDonna]

First of all, I'm glad you found the IC Network. Hopefully you've found the Patient Handbook so you can learn more about IC. Elmiron can take six months or more to become effective so you do have something to look forward to. I totally agree that keeping a diary of foods and drinks, and also include activities --- and pain levels. That way you may be able to track which ones are a problem for you.

And be sure to drink plenty of water. It will help keep the urine diluted and less irritating.

Sending gentle hugs,
Donna

[NancyB]

Dear Tasha -

I am so sorry you are going through such a terrible time, particularly with your family. Nothing like being kicked when you are down. Ugh!! You are so young to have this, but there are a lot of recently diagnosed 20 year olds that frequent this site that I am sure will chime in and welcome you.

Make sure to read as much as you can on this site to educate yourself, and post questions if you have them. There is a lot of support here.

As Donna said, make sure to drink plenty of water. Most ICers drink bottled SPRING water only. There are a number of brands to try. Make sure there is nothing added to it. This site says Evian is ok, but a lot of ICers cannot use that. Other brands are Poland Springs, Crystal Geyser, and Ice Mountain that you can try.

Make sure to look at the IC diet on this site. It helps most ICers a lot.

Another ICer mentioned instills. That would probably be a good thing to try to get some relief. Some ICers do home instills as needed. There is one person who comes on the boards infrequently by the name of Lee Read that had terrible IC with ulcers and pain that got herself into remission by going on instills using 8cc 2% Lidocaine, 4cc Sterile Water, 3cc Sodium Bicarbonate all mixed with 1 Elmiron capsule contents. She did this 3 x per day for 3 months, 2 x per day for 3 months and then 1 x day for 6 months. She was put on this regimen by Dr. Parsons in California. He is a notable IC physician.

Hope this information is helpful to you and that you will get some relief for your symptoms soon.

NancyB:)

[maryla]

Tasha,

I am so sorry that you are dealing with such cruel people. As most of us here have lost friends as well as family members dealing with IC. A great aspect is that by you refusing to do what others wanted you to do ie "it being all in your head" tells me you are a very strong willed person and in my opinion that's what it takes to deal with IC. I tell people all the time, "that you can't have IC and be a sissy! I'm very proud of you for sticking up for yourself.

As far as going on disability, you might want to wait awhile. A lot of people here have great results with a combo of meds and are able to live a "somewhat" normal life. As horrible as it is, the good thing is you do have a d'x and can start treatment at an early age. I went from my late teens with all kinds of different d'x to finally getting the correct one 5 yrs ago and I'm 53 now. So imagine ALL the damage that took place in all those yrs.

I did have to stop working and go on disability finally. And I miss working so much!

As far as surviving in the mean time, it might be a good idea to call your local social services and see what they can do to help until you can get some relief.

You are also blessed to have your friends aunt there for you, she sounds like a Godsend.

Keep us posted.

Hugs and blessings,

[dyno]

I am so sorry for all you are going through. You have been given good advise and I just wanted to give you a hug and say that you are always among friends on here and we care!

[DenySue]

Tasha,
:welcome: I have a 19 year old daughter, and your story just broke my heart. You have come to a very good place, and we are all here for you!
You have been given great advice. Do ask your urologist about instills to give you some relief. What medications are you on besides Elmiron? Some of us get a lot of relief from Elavil. You might ask your doctor about it. Also, what area are you from? If your doctor isn't an IC specialist, there are some great ones scattered around!
You are doing the right things by staying on the diet, drinking lots of water...and it may take some time , but things will get better. Until it does, we are all here to support & encourage you.
DenySue

[lonely sole]

Tasha,

Sending the biggest hugs I can your way.

You have been given excellent advice so far -as DenySue suggested, Elavil helps many folks on this board. You might want to look into Atarax as well. Some folks take them in combination, or alone, but either way, they can help you get some precious sleep. Do a search on these boards, you can get an idea of both and how they can help you. Perhaps you can discuss these with your doctor the next time you go in.

Some IC'ers are also helped by antispasm medication for the bladder - I am on Vesicare myself and it has helped hugely with the spasms (which would manifest themselves as extreme urgency, it was only when I started the IC diet and the pain died down a bit I could feel more of a "spasm" sensation). You might want to look into this as well.

I am so sorry about the family situation... things will get better though. You will get better. It might just take some time and the right combination of meds to allow your body to heal. Whenever you want to vent, feel free. We understand!

[KarenAnne]

Tasha, I am one who has had great success with amitriptyline (generic for Elavil). I had been on alot of other meds. The ami helps me get sleep, cuts down the urgency & frequency, & has helped with spasms. I drink Deerpark water & also use a Brita pitcher.

With your current financial situation, is there some way you could get physical therapy for the pelvic floor? You could get significant relief with that.

I am sorry about what you have been through with your mother. You sound like an amazing person. You have been so ill with no support, but you got a diagnosis on your own, & your trying to get your education. You asked about things to do. I read alot. Maybe on the days you feel a little better, you could visit a public library. A good book distracts me, especially in the beginning when my urgency was a bad as yours is now. In the beginning I would do as much as I could on my good days too. With the amitriptyline, I have more good days than bad now. Once you get a good treatment plan going, I hope you are able to do more. May God bless & heal you. Please keep in close touch with all of us.

[beautifulshades]

Oh hunny I am so sorry, I know exactly how you feel, I was diagnosed with severe IC july 2008. But I had support from my family. Nothing is worse than not getting the right support from your family and friends. Support is the biggest thing you need when living with IC. No offense but your mother should be kissing the ground you walk on because IC is a chronic painful illness and she should have believed you from the get go. I still miss a lot of class because of the IC and chronic migraines but I still give it all I have got. You might want to apply for Disability because you have no income and IC is in the books for disability. Also every university/ commnity college has a disability resource center, get a some paperwork from your doctor and get yourself into the DRC so you won't get crap from your teachers and you can still get your education. Talk to your urologist about all of the information you get from here, the next step is trying to find a method that works for you. Feel free to PM me if you need to talk, I am 23- I was diagnosed right after I turned 22, we are close in age :D. It really sucks that we have to deal with this huge elephant of a disease at such a young age. If you need to tak I am here, we are all here to give you the support you need, because without support, you go into that deep and dark hole of emptiness and despair, the loneliness there is overwhelming. We are all here to help eachother stay out of that terrifing place. I send warm hugs to you and I hope you find relief soon.
Your friend
Amber

[bluestarsic27]

Seeing the amount of support that I received actally brought me to tears.. it is so nice to finally hear from others who understand.

I am making a list of all the suggestions that everyone gave me. nottoc4 and NancyB- The instillations you suggested sound like a good idea, so I will surely bring those up. I have been drinking lots of water, but I've been drinking sparkletts.. I don't know if thatis a good or bad water to be drinking with IC, but I am considering switching to something like Crystal geyser or a brita filter as was suggested in the replies.

Maryla - I cannot even imagine what that must have been like for you to go so many years in pain without the right doctor. I keep thinking of all the women who began having IC years and years ago and how much they must have suffered because no one understood much about IC. I am blessed to have found a good doctor at such a young age.. and I won't ever forget that.

Denysue- The medications I am currently on for IC are Elmiron, Elavil, Pyridium, and Allegra. I am also taking Carafate because my doctor also just found a hernia and gastitis in my tummy. Apparently I'm a very acidic person...? I am in the Glendora/Covina/ San Dimas area of California right now, and I didn't realize it until last night, but my urologist just happens to be one of the doctors suggested on this site! He is also here in Glendora, so I got really lucky I guess. I can't imagine what it must be like for people who have to travel far to their doctor just for IC.

I would love to just wait it out and see if my IC settles a bit without applying for disability, but with no income, and then my mother removing me from her halth insurance pla in December... I'm nervous. I don't know what will happen to me or how I will cover my meds and my doctor appointments...
The ICA also told me that I should be applying now since the process takes so long too.. I am at a loss of what to do.


Lonely sole- I am also going to bring up the antispasm meds. I am following the IC-Smart diet, but even without adding anything and eating the blandest and most recommended food my bladder still feels like it's on fire.

KarenAnne - I haven't heard much about pelvic floor physical therapy, but I am going to look into that as well. My doctor has a physical therapy unit in his building but I wasn't aware that the even did things like that for people with IC. I am willing to try anything to ease my symptoms at this point. Thank you for the reading suggestion by the way. I tried it tonight, and even though I only made it through one chapter before having to run to the bathroom, it was very relaing and it did take my mind off the pain for a bit. So thank you :)

beautifulshades - I can't even think of what it would be like to go back to class on campus with IC. All the restroom trips, the hours of sitting up in a chair in class, and then the walk to the bus stop,then the bumpy and long ride home on the bus (55 minutes), and then the walk home... un uhhhh... no way. I did it as long as I could, but with my symptoms the way they are now? But perhaps it was more or less due to the fact that I didn't know what was wrong and because I didn't know how to manage it. I am going to set a goal for myself to return to campus as soon as my body settles down a bit. It would be nice to be social and be back on campus. I miss being around people my own age.

Thank you all so much for the support! It means so much to me, and I really hope you all keep in touch. Thank you for the hugs and the encouragement, I truly needed it and makes things a bit easier knowing that I am not alone. :)

God Bless you all and please keep me updated with what you all are up to!

-Tasha :D

Life is too short to put off living while waiting for the day we feel better... An ear one may lend to listen and a heart to confide in makes all the difference.

[beautifulshades]

I totally agree with you, with your IC, how it is out of control right now, there is no way you could return to school. I went back when my IC went into remission, then now it is out of remission and I have only gone to 2 classes in 3 weeks. I don't think my professors are happy with me and I am starting to get behind. I am actually scared I might not make it this semester and have to drop... I dont want to do that I am already a 6 year college student...I couldn't imagine taking a bus and sitting that long...when I am in class, I have every right to get up multiple times to go to the bathroom if needed. But the bus whoo, I am glad I have a car.

Home remedies that might help is long baths, pain meds if you can get them from your doctor, lots of non-tap water I drink crystal geyser, IC diet, see if you can get suppositories, I have something called rectagel, which is inserted intravaginally, it numbs it up down there. hot or cold packs to the abdomen/ down there. I will mention more if I come up with more.

[DenySue]

Tasha,
I was just thinking of you and hope you are doing better. Do continue to educate yourself as much as possible on IC, and let your doctor know that you would like to be involved with the decision making process concerning your care.
You sound like a smart young woman, so never be afraid to ask questions and expect answers!
Another thought, have you asked your mother to check out this support forum for herself? I just thought that maybe if she could read the posts from all the MANY people here that are afflicted with this disease, she may began to understand the gravity (and reality) of it. Just a thought!
I will be thinking of you...and sending a big "motherly" hug your way!
DenySue:angel:

[bluestarsic27]

Yeah I totally understand, I've been there too. Right now I am having trouble keeping up with my current classwork too. It is so hard to concentrate let alone go about the every day things when our IC is at it again. I hope that you feel better soon and that you don't have to drop. I am in the same bucket considering the same thing reluctantly. I don't want to, but I may not have a choice if I get any further behind. I know that the idea is daunting and not ideal, but just do what you can and know you are in my thoughts. Let me know if you need anything :)

Aside from my IC flare ups and exhaustion caused by being in the bathroom all night, I am also having trouble waking up in the morning... not like the sleepy-hit-the-snooze-button though. I literally cannot fully wake up.. I will be aware of my surroundings but my head will be in such a fog and I'll feel so dizzy that I can barely keep my eyes open. I am at the point where it takes and hour or two to get to a point where I can snap somewhat out of it and then I get in the shower and sit under ice cold water for about 15 minutes. That is all that I have found to help, but even then, I have to keep splashing water on my face to stay awake. My doctor said it may be a side effect of one of my medications and that perhaps over time it will subside. Is anyone else having trouble with something like that with their medications?


The constant bathroom trips are still obnoxious, but embarrassingly enough I couldn't even make it through a 15 minute grocery trip yesterday. In front of my mother none the less. I went to visit her yesterday for a couple of hours and I made a point of trying to keep my IC from interrupting our visit. Not how that happened... I literally walked in, walked through one aisle, and then I felt like I had two seconds to get to a bathroom. :/ Then after we got back to her house, I couldn't stop going to the bathroom, and then before I left I made four consecutive restroom visits in the same ten minute period. I finally just let because I have realized that my IC isn't going to just let up when I need it to. So I endured the ride home and just sat on the toilet for a long while when I got there.

Oh, and Denysue, I appreciate the support. I think showing her this site would be a great idea, I just hope she will take the time to look at it. She wasn't exactly thrilled when I tried to show her the booklet the ICA has for family and friends to read. It takes less than ten minutes to read it cover to cover... but it just wasn't in her agenda, and I think she read it at last to get me to stop nagging her about it. :/

I have a gyn appointment on Wednesday the 16th, and I was wondering, what kinds of things can I ask the doctor to help me with for my IC? It gets confusing and I have to figure out which specialists to ask which questions. The pressure in my pelvic area is something I will definately bring up, but can he do anything else for me?

I hope and pray that you all are having a great week and that all is going well! Keep me posted please!

[DenySue]

I don't know how long you have been taking Elavil, or what dose you are on, but it has a sedative quality, and will take a week or two to adjust. I started out on 10mg...went up 25...and am now back down to 10mg. I make sure I take it no later than 7:30 at night. The great thing for most people is that it does help you sleep....but until you adjust it can make you groggy in the morning. For most people it does go away, though.

[bluestarsic27]

Hmmm... Well they had me on 10mg as of July 31st, then 25mg as of August 19th... They have me on elavil for the pain, but perhaps 25mg is too strong of a dose for me? I am going to have to ask my doctor for another alternative if this doesn't get better.

How are you feeling?

[DenySue]

Were you having this same problem when you were still on the 10mg of Elavil, or did it just start or intensify when you went up to 25mg? I would think you have been taking it long enough for that morning sleepiness feeling to have subsided if it is going to. Most importantly, do you think the Elavil is helping with your pain? For me, it made a all the difference in the world. Talk to your doctor about all this, and see what he thinks.

[bluestarsic27]

I didn't have this problem until they started me on Elavil. It definately helps my pain, but I think I should go back down to 10mg if they morning drowsiness doesn't stop. Are there any other medications to help with pain besides Elavil?

[some_guy]

Dear Tasha,

Wow I am so sorry people have been so horrible to you. Just remember that you have a medical condition that you did not ask for nor could you prevent and the people who don't understand or support you are in the wrong not you.

I don't know what to suggest to help you because I'm still on my own sometimes seemingly lost journey but just keep learning, keep trying, keep asking doctors to try everything and anything. Get mad at it, laugh at it, cry at it and just keep going till you find something that helps.

[DenySue]

If you are taking your Elavil early enough (by maybe 7:00 pm) and still can't shake this morning drowsiness, you can try to drop back to 10mg and see if that will still help you. Ask your doctor's opinion....he/she may be able to give you another similar drug to try that won't be so sedative. I have a pill splitter, and I cut my 25mg pills in half. That is working okay for me. But make sure you keep your doctor informed on what's happening.

[Diamic65]

I tried Elavil one time. It made me feel like I was on another planet.:loco: My URO wanted to put me on it and I told her that I could not take it. Did any of you gain a bunch of weight do to Elavil? I did big time.:( If you don't look sick people think you are crazy and you feel bad all ready because of IC.

DIAMIC65:puppy: