New Member

[Iluv2teach]

Hello New Friends!
I would like to introduce myself and ask for advice. I am a 23 year old teacher, engaged for 1 year, getting married in Montana next July, and struggling very badly. I have been recently diagnosed with IC after 2.5 years of doctor visits to various specialists. Before the IC diagnosis, I was diagnosed with Pelvic Inflammatory Disease, Lactose Intolerance, Acid Reflux, IBS, Depression, Yeast Infections, High Anxiety Disorder, and just plain gas. My favorite was "pulling my muscle the wrong way". As I have read many other board replies, I have learned that this is a common trend.
Here are my concerns, as I am new to all of this: I am missing SO much work and I feel terrible for my students. Everyone at work is very understanding and my employer is more than generous with time off, but some days I just can NOT get up and ready from all of the pain. I have tried the diet and it seems to be working great, but still having a great deal of pain. It feels like razors inside.
During the first week of December, I am going to have a laparoscopy for endo and cystoscopy (or whatever that is called through the bladder!) during the same procedure. It's my first time and I have all this hope for relief from the procedure. Am I fooling myself?
How is everyone dealing with this stress? The pain NEVER stops... I'm missing SO much work and feel just awful.

[July]

Welcome! I'm glad you have found us. You are not alone. Are you on any meds yet like Elmiron? Heating pads can also ease the pain. Some people benefit from physical therapy. Have you been checked for pelvic floor dysfunction? Physical therapy may help. Stress is a major trigger for IC, so you might want to check into some relaxation/visualization techniques. A lot of alternative/natural treatments also exist. Reading through current and past posts on this website will give you ideas to try.

[marsi4]

Hi Iluvtoteach and welcome to the board!

I have IC for 30 or so years. Since last year my symptoms really worsened and I had severe pain, burning in bladder and vaginal area, severe pressure, razor cuts, throbbing pain, bladder spasms, urethra burning pain and pressure, severe pain all over my abdomen and inflammation, IBS, and many other symptoms that are hard to describe. I believe I also developed inflammatory bowel disease even though I went a month into my flare-up for a colonoscopy exam and was diagnosed with a healthy colon. I had horrible bladder pain, pressure, and inflammation in my bladder that I believe over the 8 months that I was in this debilitating condition, the symptoms spread to my large colon. Like I said I have IC for a long time but had never experienced any pain and inflammation in my colon and entire abdominal area until this year. I'm sure I have IBD because the pain was herendous. I'M supposed to go for another colonoscopy exam soon and see what my doctor says. Usually when someone has IC they also develop problems with the intestines, because the large colon is connected with the bladder. Anyways I don't want you to despair. After 8 months and a lot of pain meds and other oral meds I am starting to feel better. You have quite a few diagnosis at your young age and Im really sorry that you are going through all that, but I can relate. Usually with a laporoscopy exam they check for endometriosis, and oter abnormalities of the pelvis.

I would recommend that you have your GP refer you to a pain clinic and get meds to control and manage your pain so you can get some sleep. You need to have your pain managed because the pain will prevent you from functioning and wear you down. Secondly I would advise you to start on Elmiron. Elmiron helps to coat the lining of the bladder so it won't get easily inflammed or irritated. I would also get medication to help with the bowel inflammatory disease. I'm curious if your doctor gave you meds for IBD? If so what? You can also take hydroxyzine at night. It has anti-inflammatory effects and can help in reducing inflammation. Elavil is also used to reduce pain, frequency, and helps you sleep. You can also ntry bladder instillations. There are several different meds that you can use separately or in combination to reduce your ic symptoms. I know this sounds like a lot of medication, but you have numerous health issues that need to be treated. I hope your doctors put you on the necessary medications in order for you to get some relief. Diet is also important.

I'm so sorry that you are going through so much and it's affecting your job which you love so much. I hope you can manage your ailments and feel better soon so you can get married and have a happy life.


Hope you feel better soon, and hang in there it will get better but it will take some time. You are going to need a lot of support and care from loved ones and I hope you get it. Tell us how you are feeling as you go along in your treatments sweetie.If you need to ask me anything or talk please do so.

Hugs,

Marsi4

[Katrina]

:welcome: to the ICN! You came to the right place. I have quite a few things that you mentioned...I believe my list is over 13 long. (Remembering the number it was at one time seems easier than the list itself lol) Anyway, feeling like razors inside...sounds like you should make sure you don't have PFD, try an antispasmodic (until you do alternating heat and cold, and using moisture help somewhat), and make sure your urine is not acidic...sometimes calcium and antacids can help with that.
:grouphug: I hope things improve for you!!

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[traceann]

:welcome: to the gang, glad you found us! Katrina has given you great advice already, so just adding my greeting!! Hope to see you around the boards!!!

Hugs!

[Oxana]

:welcome: to the IC family. This place is great!
When you will find right treatment the symptoms will be better :grouphug: !

[~*~Christine~*~]

:welcome:

[Morgana]

Hi and welcome

Everyone here is so welcoming, friendly, and they give top class advice and support.

Hope to see you around - I'm the crazy one.

Feel better soon...

Love

Mo
xxx

[SharonA]

Hello and :welcome: to our corner of the Internet. Glad you made your way here. :) :) :)

[Babs RN]

Welcome to our bladder neck of the world! :) You've been given tons of great advice, I just wanted to say hi as well. Congrats on your upcoming marriage! Good luck with your procedures--before and right after diagnosis are the most challenging time in my opinion. I also had endo, it was actually diagnosed before the IC. You will survive, honest. Both conditions rely on trial and error to control(because relief is so individual)but once the pieces to the puzzle are found, it is wonderful.

Hugs,
Barb :grouphug:

[Kimchi]

Welcome, welcome :grouphug: :welcome: and congrats on your engagment. Also, thanks so much for teaching our children. There are not enough wonderful teachers out there. You will find help and relief soon. Don't give up.

[ICNDonna]

I also am glad you found us.

My IC was diagnosed back in 1975 and I have lived a very close to normal life most of that time. It can take a while to find the most effective treatment options for each individual --- and the diet can be a challenge, but most of us do get better.

As you are reading these boards, remember that for every individual posting here because they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and don't need the support.

Sending warm well wishes,
Donna

[traceann]

Hee hee, Barb, you crack me up, "bladder neck" love it!! As you can also see, there are lots with great senses of humor, it's the best medicine in the world!!! Once again, welcome!!!

Hugs!

[Morgana]

No wonder we all have problems! This bladder neck is mightily jammed. ANyone seen that Plumber?!?

Love

Mo
xxx

[Oxana]

Yes, it 's great to have good senses of humor!
I study at medical school that 5 minutes of laughing equal to eating 1 c. of sour cream. So, as we can't eat sour cream, we can laugh a lot to make it equal. :biglaugh: :biglaugh:

[kadi]

HI there!
I am also a teacher. This is my 15th year teaching, my 3rd year with IC. I felt pretty awful the first year, missed 33 days that year. The second year, I think I missed 13 or 14. This year, I am doing really well, now that I have found a combination of treatments that work... I hope that will be the same for you. Hang in there! Please feel free to PM me if you want to talk. I love talking to other teachers!
Sending a hug & wishing you better days soon!

[Iluv2teach]

You all are awesome. I value the point made regarding the fact that hundreds of individuals out there are not feeling the pain are are doing just fine. That gives me hope. It also gives me hope that another teacher has missed so many days and continues to do what she loves regardless of her missed time at work. I have missed 12 days so far this school year, it breaks my heart. My best form of relief is the heating pad. It is a God-send! Thanks for that tip!
Does anyone have a tip for this pain: a solid cramp, like a Charlie-horse in your leg, but in your lower abdomen. I need advice on how to deal with these pains at work. My doctors do not seem to have any advice except the pain killers, and well... that's not such a good plan while teaching 8th graders with special needs!
I can't express to you all what an amazing feeling it has been to read all of your replies and convince myself that I'm not alone in this pain. I'm considering talking to a specialist about dealing mentally with chronic pain. Has anyone found that helpful?
This is so great! Thanks for all your advice! Once I learn more, I'll be able to give back to these message boards to others like you all are doing for me. :)

[Babs RN]

I have used mental health professionals more than once since my diagnosis. It is nice to have an objective third party to listen and help with coping skills.

Hugs,
Barb :grouphug:

[Briza]

Hi
I'm glad you found ICN! The support you will find here is incredible. I'm also a teacher, and my history is similar to Kadi's. This is my third year with IC. The first two years were tough. I missed 13 days of work when this all started, and like you went from doctor to doctor trying to figure out what was going on. That year I got an "excessive absences" notation on the areas of concern on my annual formal evaluation. I didn't even contest it...with the personal nature of this condition, I wasn't comfortable telling my administrators what was going on...I didn't even know what was going on. Last year I missed over a month of work due to surgeries and pain. I had a really rough group of 7th graders and the pain I was in made behavior management so hard and I really began to question my abilities to teach and work...UNTIL I found a gyno who prescribed Tylenol 3 for the pain. Like you, I was reluctant to take it while working. At first, it made me dizzy and drowsy, so I was really worried about being at work "on drugs." So for about a week I would take just half a tablet after lunch, and then I was able to take a whole tablet and had no side effects and the pain was practically gone and I could teach! Believe me, it was a LIFESAVER. I need my job and health insurance, I have to work, I like to work and the pain med made that possible. This was all going on while I was waiting to see a urologist. Now that I'm managing my symptoms with other meds and diet, I don't have to take Tylenol 3 regularly, only for bouts of pain, which don't occur very often anymore. Please private message me if you'd like to talk more about how I dealt with this. Teaching can be a very stressful job and being in the pain you are describing doesn't make it any easier!

[MarthaB]

:) hello and :welcome:
martha

[traceann]

Have you tried the Thermacare Heat Patches?? Those are WONDERFUL!! Great for when you need to be "wireless", lol, and you can't see the menstrual cramp-style ones under clothes, can't tell you how many times I wore one to work!!! :)

Hugs!!

[Sarojini]

The others have already given some good advice, so I'd just like to welcome you to the boards :welcome:

[citygirl]

ILuv2Teach,
Welcome! I am also a teacher---ninth grade special needs (but aren't all ninth graders special needs?!). I haven't been officially diagnosed but am in the process. I'm going for a cysto on Wednesday. Stay hopeful. My grandmother was diagnosed with IC in her late 60s and, once she started getting the right treatments, lived relatively pain-free to 97. I know it seems like you have the worst occupation for IC, but you are reserving a place in heaven for yourself for sure. Hang on.

[kadi]

The thermacare patches are great! I've used those & the BodiHeat ones too.

Also, varying position can help. I got a tall stool so I could "perch" at the overhead, or stand with one leg up on a rung, or pace the room.

I also had the kids do as much of the classroom chores as possible, even things like locking the windows, pulling the curtains closed, erasing the board, washing overheads. For non-essay grading, I got a set of markers & had the kids put their pens or pencils on the floor & they could only use the marker I gave them to grade their own papers. (If I found they'd given themself credit for an answer that was wrong, I took off double. A few "spot checks" like this & honesty prevailed.) Then all I had to do was record the grades.
DELEGATE, DELEGATE, DELEGATE, so you can save your energy for the things only you can do, like lesson planning & parent calls...

Hang in there, it does get better!

[Iluv2teach]

Thank you Everyone!
You have made this last week so much more bearable than the weeks before. Only 2 more weeks to surgery! Hope it helps! Has anyone found relief with the bladder surgery? Thanks again... I tried the heating pad at work (huge relief) and the delegating of tasks off to students (EVEN BIGGER RELIEF!). Thank you, thank you, thank you!

[traceann]

You are so welcome! ;)

Hugs!

[csocain]

Just adding my "hello" to the boards. I've been diagnosed with IC since May 2004 and it has been a hard year and a half but just recently got the ok from my urologist NOT to come see him unless I have trouble again. Please keep plugging along with the diet and treatments. It will pay off in the long run. Praying that you feel better real soon. Blessings of hope and peace to you.

[icsonja]

:welcome: You are finally among friends who understand! and I am happy to meet you, I was a special ed teacher ,taught in a school for the deaf and loved it! Unfourtunately I am unable to work due to my health, so I admire your ability to do both.
You have been give some great advice, I will add one piece too, once you get with a good knowlegable Doctor, one who really works with IC patients, you might try rescue instillations for when the pain gets bad, it requires that you or your DR put medication into your bladder, like lidocaine or marcaine which will give you some wonderful numbness, there is a post thread about them.
We have alot of the same illnessess and for me some of the stabbing pain is related to my bowel and colon spasms, especially when I havent been able to poop (sorry for the bluntness). I have had pretty good response with Zelnorm it helps with gasrto pain, which is often mistaken for bladder spasm and vice-versa.
It really is trial and error and can be frustrating and depression is very common with IC and chronic pain patients, so it would probably do you good to have a person to vent to and maybe prescribe any meds that might help with dealing with being ill. Depession caues pain to intensify, so treat the depression and you treat the pain. That is one reason that many ICers take Elavil, which is an old school antidepessant with the added benifit of helping with spasm and pain.
So much for one little piece of advice :loco: , I can get a little long winded,(as they read this many peoplw who know me
here are laughing at the word "little" :help: )
I do have a lot (read ..too much) information about treatment as I have done 'em all and am down to clinical trials now.
Any way welcome and anytime you need to talk let me know my email is listed.
Sonja

[hoping4acure]

:welcome:

You have already gotten some great advise. This site is incredible. Again, we all know how you feel and what you are going through!

See you around the boards.
:)

Louann

[ssmith]

Hello,
I was diagnosed with IC today via the potassium chloride test. I feel like I have an excellent OB/GYN, they have 55 IC patients in the clinic. I must say I think my symptoms are minor compared to what I have read on the boards. I have a history of UTI's 3-4 times per year that clear up nicely with cipro. But in Oct. it didn't go away. The worst symptom was the frequency, at worst 15 x in 24 hrs., and some side and back pain, some pain after voiding, sometimes trouble getting a stream started.

My dr. has started me on veslcare, elmimiron, and zeptec (can't read this and haven't filled it yet)

My dr encouraged me to start the elimination diet...where do I begin?

Is IC something that gets worse over time?

Thanks,
Sally Smith
Minnesota

[hoping4acure]

Hi Sally :welcome:

Please see the link below to guide you to the IC handbook...lots of information there.

This is a great site. Lots of support. Keep the faith and see you around the boards.

:)
Louann

[mayray518]

Kadi and all you other teachers, you dont get enough respect as is I dont think and then to teach with IC. God bless you. I kept my paralegal job for 2 years with IC and then had to go on disability. But now I am doing great thanks to elavil and back to work. People dont realize how horrendous this disease is let alone work. I wish you the best.

[traceann]

Hey there Sally and :welcome: to the family! You have come to the right place to find information, support -- you name it, we've probably discussed it! :biglaugh:

The diet can be a bit tricky to navigate when you first start thinking about it, but it's actually pretty simple. Here's a link right to the IC Diet foods list here on the site, that is way more comprehensive than the one my doc gave me.

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

What I did was what was recommended to me: Eat soley out of the "Usually Ok" list until you get your bladder calmed down and somewhat feeling under control. (for me it took about 3-4 weeks, but it takes however long it takes, :biglaugh: ) Then I started adding in things from the "May Be Ok" list one at time, with 2-3 days in between each new food. If in that time my symptoms increased it went on my no-no list to be retried at a later date. If it failed again, it went on my permanent no-no list. I have found that yes, while it's slow going, it's totally worth it. I have discovered there are many more foods I CAN eat than ones that I can't. It just requires some patience... :headbang: And it might feel very restrictive in the beginning, and that's well, because it is, :biglaugh: But it's only that way temporarily, as you begin the process of reintroducing foods, it obviously expands.

And there are a couple things you can do to help. A lot of us use Prelief tabs to help us eat acidic foods that may bother us. (and I use it for "unknown acid level" foods when out etc.) You take them right before you eat and they help to reduce the acid in foods. I get mine at my local Rite Aid. :)

And if we have eaten something that maybe we shouldn't have, you can either drink a big glass of water with about 1/2-1 tsp of baking soda in it (but be careful if you have salt-sensitive health issues) or you can eat a couple of Tums. (good source of calcium too! ;) )

Once again, glad you found us, and I hope this helps a little bit. One other thing, the Diet message board was a lifesaver for me! I practically lived there in the beginning!! :biglaugh:

Hugs!