I just don't know what to do

[butterfly_wings]

I am wondering if my life is going to get any better. I was just diagnosed with IBS after a year of procedures. It is finally getting under control and now my IC kicks into high gear. I was diagnosed with IC two years ago at least I think I was diagnosed or my doctor just left it at that. I am 21 years old, college student, and part time worker. When I was 17 I had a really bad UTI and ever since then I started having bladders issues. About a month ago I had my first real flare. I had no symptoms for over a year prior just frequent urination that I got use to. My prior pain that I would have was nothing like what I have now and never lasted long. My doctors never explained to me what IC was when they diagnosed me. When I started having this horrible pain I did not know what to do or who to turn to. I have my insurance with Kaiser and it takes over a month to see an Urologist. The nurses I speak to have no information or suggestions about IC that they can give me. They get angry with me for calling saying the line is for emergencies only and I wasn't an emergency. They just sent me brochures that left me with several questions that nobody could answer. I finally found the IC-Network and I am so thankful for it. I am on it every day trying to find out more about IC.
Since I started having pain a month ago I have been taking Elmiron and praying it will start working soon. I tried four sessions of the DMSO treatments that left me in more pain than when I went in. It was really uncomfortable and burned. I have also been on Vicadin which keeps me relaxed and able to sleep. I had to fight my doctors on refilling my prescription for Vicadin because they were refusing to give it to me. They said I needed to take Tylenol or Advil which didn't help one bit. My Primary doctor finally refilled it for me so now I have enough to get me by until my appointment date.
Every morning I do not want to wake up. It means another day of pain and struggle to complete anything. When I sleep I feel no pain. Since my IC I have really bad depression, anxiety, and panic attacks. I can't stop crying; I can't talk to anybody about IC or think about it without crying. I am glad at work I work with one other person with separate offices because at work I cry all day long. I worry that my boyfriend of 2 1/2 years will leave because of how I am. I think just leaving him would be a good idea. I know he doesn't want to have to deal with this and I don't want to put him through it. I try to leave a couple times a week to stay at my mom's so he has a break from me. It has been really hard going to school and work where I just sit. I usually have to take a vicadin to get me by in my longer classes. Next term I am only taking two classes with shorter class periods. I am loosing hours at work because I am unable to be there and I have to live paycheck to paycheck where most of my money is going to doctor visits and medicines. I have thought about moving back home but my school and work would be an hour away. My family tries to help me but they really don't understand what I am going through. I can't go anywhere or do anything because of the pain. The safest places are home or my mother's. I worry about the future if I will ever have kids. I read that for some people it put their IC in remission but for others the last couple months their IC kicked in and it was miserable. I don't know that I could handle that.
Recently I found out exactly what the diet is and that a Brita filter is not good. Now that I have changed my diet and drinking different water (Arrowhead water causes flares for me I found out) the pain has gone down. It is just every day still I burn in my pelvic area and feel the urgency to urinate all day long. I am afraid to urinate because I hurt right after. I wake up every morning at 4 or 5am and every hour after that I wake up to urinate. I'm tired and tired of waiting to see an Urologist. I know that this process of seeking new treatments is going to take a long time with Kaiser because it takes forever to see anyone. Does anybody know of any good clinics located in Oregon?
Has anybody used Homeopathic Treatments? I see a Homeopathic doctor for depression, anxiety, panic attacks, and weeping which works for me. He said that he has helped people with IC and is trying to find the right treatment for me. I was wondering if anyone has had any luck with this?
I have ordered CystoProtek that I will receive in a couple days to try out and I also ordered a heating pad for pain. Are there any other treatments anyone can think of me trying? I plan to ask my doctor about pelvic dysfunction and rescue treatments when I see him. I just wonder if I have IC or pelvic dysfunction, or both. I really don't know if I was diagnosed with IC my previous doctor was horrible. What are the differences between the two?
I just need all the help I can get. I feel so lost and alone.

[Diamic65]

Bless your heart. I'm so sorry your in so much pain. I do promise that it will get better. Are you doing the IC diet and drinking plenty of spring water? Are you on any birth control? Some times some birth controls can cause your IC to act up. I think your worrying way to much about your boyfriend. I know this sounds harsh but.. you need to take care of yourself and calm down and try to relax. WHen was the last time you saw your URO? If you can go and and see them they can help you with your pain. If your sitting all day at work maybe you need to get up and stand for couple of min. this may help. I hope you feel better soon. If you go on to Jills journal she has some good tips on how to deal with you IC. Its posted on the ICN website. I wish you pain free soon

DIAMIC65

[lttlewun]

Hello! I wanted to welcome you!

I'm sorry you are going through this. I know how you feel. I'm sure everyone here can relate. It's tough to deal with this disease, but it does get easier. I have my good days and my bad days, but I seem to be having more good days lately. I am on Elmiron too. On December 24 of this month, it will be 3 months for me. I seem to be tolerating it well and I have noticed some improvement.

I also take Glucosamine with MSM. I heard some good things about it on these boards so I decided to try it. Everyone here is very helpful and have great advice.

I used a heating pad on my tummy and in between my legs when I am uncomfortable. It seems to help. Have you tried baking soda in water yet? This has helped me in the past when I had the nasty burning feeling in my urethra.

You will find lots of good advice here. Hang in there. I know it's tough, but we are all in this together!

[Glenda2]

I have had IBS-D version for 25 to 30 years.

It can be a very annoying condition to deal with. And at times can keep you house bound and close to the bathroom.

I use Imodium when I have a day that is bad with Diarrhea.
I've used Bentyl if cramping gets bad. It works very well.

The Rx. Lomotil is used if the Imodium doesn't seem to be helpfull that perticular day. That also works well.

Just like with the IC diet , you need to follow the IBS diet.
Basically they are both the same !!!

Dealing with IBS and IC together is annoying , but you can over come these 2problems with alot of hard work and determination.

I hope you can work things out with your Boyfriend.
If a partner truely Loves You , they will stand by you 100 % , and be there No matter what problems you face , because they really do Love you.

I hope you feel better soon !

I too am pretty miserable right now. I was Hoping the Elmiron would help , sadly it just gives me untollerable side effects.

[Cassaundra]

I was where you are a year ago.

I hope that you find relief soon.

Dont' forget to ask your doctor about:

an low dose of an antidepressant such as amatriptyline/Elavil. This helps with the nueropathic pain and the frequency

and: an antihistamine, such as atarax/hydroxyzine. This helps with the inflammation/mast cells presesnt in the bladder

Talk to you school about students with disabilities/health problems. A note from your doctor may be needed.

Pelvic Floor Dysfunction can add to your pain and symptoms of IC. I have both. Physical Therapy does help. So do warm baths with baking soda.

Also, there are different types of rescue installations. I found that DMSO didn't work well for me. One that seems to work well for everyone is the cocktail version. This has lidocaine, heparin, and sodium bicarbonate in it.

I wish you luck and remember, this takes time in finding the right doctor (some of us go through a lot. I've gone through 3), and the right combination of treatments to help you find relief.

Also, try keeping a journal, this helps track your symptoms, what you ate for the day, what triggers, you, etc.

Keep in mind, IC responds to stress. The more you are stressed out, the worse your symptoms will fee.

I was working fulltime, going to school fulltime, and had a boyfriend (who is now my hubby). I ended up taking a break from school to focus on getting my life back together.

Don't be afraid to take a break. You deserve one. This is in no way, your fault. You didn't ask for this, but you have it. The best thing would be to do your best to accept that you have this disease, adn that it is manageable by treatment. You WILL find relief. It just takes time. And I know that right now sucks. But you WILL get through this. You CAN do it.

If you need to talk to someone your age, or have any questions, just PM me!

Feel better soon!

[dawnja]

BW,
Cassie gave you great advice! I know this feels incredibly overwhelming, but with lots of persistence you will find some relief! You definitely need to be an advocate for yourself and do your research, and you are obviously doing both! Good for you! Hang in there, because there will be good days ahead and a light at the end of the tunnel. It may take some time, but it will happen.
Wishing you good days ahead!
dawn

[butterfly_wings]

Thank you everyone for your support and suggestions. It is nice to hear that it will get better. I do realize that I need a break from school and work, but unfortunately to have health insurance with my mother I have to go to school full time. My work is for a nonprofit company so they do not offer any health insurance options. I am going to take everyone’s suggestions and start working on things. It is so hard to have to wait so long to see an Urologist. I still have another week.

[Bojana]

Welcome, although I am sorry that you had to join to our club. I can relate to you, right now I only go to school and its hard, every day I wonder if I will be able to sit through class or not. On really bad days I stay home.
Since I don´t have so many options here (like elmiron or elavil etc) I am taking a mix approach....oab meds and atarax with cystoprotek, aloe vera and other herbs. It helps with the pain so I do not need to take heavy pain meds right now, I can manage with the pain (although I hope it won´t get worse). I am also on diet. I am a bit better as I was a month ago. So combo of meds and herbs and diet helps me.
I hope CP works for you. And yes you do need to give yourself a break and put yourself first. I am thinking that if me and my partner can survive this together, then I know he is the right man for me. So far he has been managing with all the changes in our lives. Fingers crossed it stays that way.

[Skynard]

I have had IBS for 22 years and diagnosed this year with IC. I can tell you if one is unhappy, the other will be as well. You have to find the balance. It took me three months to settle both of them down to a manageable state. I found that immodium irritated my urethra and I have been taking it for 22 years! I am now on Lomotil and find it helps a lot. I know the frustration on waiting on the doctor, but once you are in it is easier to get appointments. I would suggest taking a notebook with questions and a friend to be a note taker. You will probably find that you will be emotional on that first visit. It is very overwhelming. Educate yourself and use this site to help with the questions for the doctors. There are so many different things to try, so don't give up hope. I would suggest immediately getting on the IBS and IC diet and getting on the DH Aloe (which helped calm my IBS) and the Cystoprotek (only take one for awhile until your body adjusts - it can irritate the IBS, but I found that if I freeze the bottle and take them right in the middle of a meal, it helps). I can now take four a day and I have been on them for about two months.

Please feel free to PM me anytime.

Wishing you well on your journey.

God Bless,

Skyn