View Full Version : What a week!
08-05-2004, 09:27 AM
Well, it's been one week today and I am thankful for all the help and support you all have given me so far just by letting me read your stories and experiences. I am also overwhelmed at having been diagnosed with IC. I have spent most of my waking hours since Friday on the internet and find some great info especially at this site. It sounds like a lot of prayers and patience are in order for the next few months, if I am lucky. I started on Elmiron and am trying to find some pain relief so I can start teaching again in 2 weeks. My uro is on vacation and I won't see him again until after I go back to school. Any suggestions on the best OTC until I see him? The alternative is the Vicodin he gave me right after the cyst/hydro and that certainly won't work in front of a bunch of high school kids! I'm really nervous about going back but I have to try. I am really looking forward to your responses. Linda
08-05-2004, 09:42 AM
Have you tried prelief? Also avoiding certain foods which may make you flare can help. I don't know what meds you've tried but there are a lot of things you can try to help. Some thingds won't be as helpful to you as others. Katrina compiled a list of pain relief that we all have tried and maybe something there will be beneficial to you as well. Take care and good luck with your new students! - Chris
08-05-2004, 09:54 AM
:hi: Linda and :welcome: to ICN...
I am sorry you have IC but very glad you found your way here. As I'm sure you have already found out, this is a great place to find helpful and supportive people who know what you are going through.
Yes, IC and it's realities can be overwhelming. Don't try to learn everything all at once, but do try to learn everything you can about this disease. Knowledge is power. When you are armed with the facts, you can become a vital member of your health team.
I do not know much about OTC pain meds. I do recommend you check out the IC Diet. Finding what foods are triggers for you is invaluable. There are many of us here who find a lot of help watching what we eat and drink. I also use a product called Prelief with suspect food and drink. You can learn about this here, also. You can purchase it from this site. I have found it at Walgreens Drug Store.
Many people find relief using heat. You can buy the kind of heat pads that stick to your underwear and work for about 8 hours per pad. There is a brand you can purchase from the IC Shop here on this site. There are others you can find at most drug stores and places like Wal Mart, K Mart, etc.
Good luck with the new school year. :)
08-05-2004, 10:24 AM
hi and :welcome: to the icn.
since your doctor is on vac. this week ((seems like i know alot who are lol)) but he has to have someone on call that can help you.
please read www.ic-network.com/handbook this will help you with alot information also.
please let us know how your doing we do care
sending you hugs and prayers
I know exactly how you feel. I too am a teacher except I teach elementary. My biggest problem is frequency, rather than pain, but I do get flare ups that can be painful. I have tried AZO and it helps some and ibuprofen, which didn't really help. I haven't found anything otc to be all that helpful during a bad flare up. I too, will probably have to ask for some pain meds. Sorry I couldn't be of more help!
08-06-2004, 05:11 AM
If your uro is not available, there should be someone taking calls for the practice. I suggest you call the office number and see if you can't see someone.
Sending encouraging hugs,
08-06-2004, 06:23 AM
:welcome: :welcome: :welcome: :welcome: Welcome to our ICN family!
So sorry you have IC, but if you have to have it atleast you have us too! :wink:
I have a list of ideas that help with IC pain.....some are easy things you just don't always think of .......I am also including a link at the end where I posted this link with attachments of pictures to help with the reflexology and other things.
IC Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese.
This list is for when you are already in pain
• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix (about 1 teaspoon baking soda per glass)
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lemons oranges
o all essential oils
• physical therapy
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession)
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]
NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!
Good luck.....I hope you find a lot of relief.
Take Care :grouphug: :grouphug: :grouphug: :grouphug:
08-06-2004, 10:17 AM
I am so humbled by all of your answers and your support. Special thanks to Katrina. I ran right out to get some Prelief last night but I'm not sure if the food is the only thing causing the pain. I have given up almost all of the foods on the "avoid list", especially the really high acid stuff. But some I really love and don't seem to understand how they can be so harmful, like berries, cheese and yogurt. Anyone out there find these really bad for you?
Another big problem I have is the timing of the Elmiron. I also have Type 2 Diabetes with Reactive Hypoglycemia so I need to eat at 3 hour intervals so my blood sugar doesn't get too low. The early and late dose are not much problem. I see from another thread that some ICers take two in the morning. Seems that the meds should be spread out to maximize the amount in my system all day long.
I did call the uro's office and another doc phoned in a scrip for Pyridium for 10 days, no refills. I'm taking that, 800 mg Motrin and the Elmiron right now. It takes the edge off so I can at least distract myself and get a few hours sleep. I have given up all the vitamins and supplements for the time being. Do other scrips act as irritants also? I have some allergy meds and thyroid meds I need. How can I find out? I know patience is in order, but how long should I try these things before I call the docs back?
Sorry, this is sooo long. I have so many questions.
Thanks again, Linda
I also am a high school teacher. I got sick last Aug, but wasn't diagnosed during summer. I ended up having laparoscopy in Sept, and a cysto/hydro in Oct. I am so so glad you were able to find out what is wrong before going back to school!
I can make it through my 90 min classes by: strict adherance to the IC diet (left hand column foods with careful label reading of even those foods to avoid certain brands that have added "citric" or "sorbic" acids as preservatives).
I also take Elavil (30mg) & Ditropan 5mg at night--with these I sleep all night! I had a 6 week course of DMSO cocktail treatments this summer & I'll be having those done once a month on a Friday afternoon. Motrin makes my pain worse, but maybe I'm weird!! If I'm flaring at school I'll take 2 Tylenol with 4 Preliefs & a half Ditropan & that doesn't dope me up. Also a Thermacare heat pad to stick on under your clothes can help...
I got a "prescription" from my doctor for a classroom near the teachers' bathroom and have a "buddy" colleague in case I sprint out during class. Water, if you take a tiny sip every 10-15 min. you might be able to drink more without sending your bladder into fits. I keep 2 days of emergency subplans on my desk (usually a video that enriches something we've learned--standards, right?) so if I feel rotten I can call in without worries.
If you need anything, have questions, or just want to talk, please feel free to PM me. I'd love to help any way I can.
What do you teach?? (I'll teach all Spanish this year, though some years I also teach World History).
Wishing you better days soon and a great start to the school year,
08-06-2004, 04:30 PM
Hello and welcome to the ICN! It looks like you got lots of good advice. Pyridium is good to use short time use. There is also pyridium plus that is much better. As far as the food part goes. I do not have a whole lot of absolute food triggers, but I also take a lot of prelief. At first, I was not sure if the prelief was helping. After about a month, I did start to experience significant improvements with the use of that and an anti histamine.
I hope you find some answers and help soon!
08-06-2004, 10:57 PM
Well, it's 5 am and my pity party is over and my mind is racing with questions again. I know I need to address this issue very soon but I am scared out of my wits. I would be anyway even without the IC. This needs a short explanation. May 2003, I had an abnormal pap and mammogram. It wasn't the first time for either and I dealt with it then. Seems so long ago and so trivial now. Repeat pap in Sept was okay but I had 3 fluid-filled cysts in my breast drained and it wasn't pretty. I've had surgery to remove cervical dysplasia three times so I know how important a yearly exam is, expecially for me. I also have HPV. I called the gyn office and asked to talk to the nurse if there was anything they would do to make the pelvic exam more comfortable or should I wait. She said she would talk to one of the docs, mine wasn't in, and call back. When she did, she was almost rude telling me to talk to my uro. Should I give my gyn, been with him for 22 years and two pregnancies, a chance or ask the uro for a referral? Should I "interview" my gyn before I let him touch me? I'm really nervous about this.
08-07-2004, 02:00 AM
I think if I had been seeing the same gyn for that many years, I would at least talk to him. I always talk with my gyn before an exam. And I would include mentioning the way the nurse talked to you.
08-07-2004, 03:33 AM
Hi Linda. You have a lot going on at once which is why it's so difficult to deal with this problem. Berries are acidic and cheese is a dairy product. I suspect you may also be lactose intolerant. That can cause more discomfort in the pelvic area. Also, be careful of aspirin products, Motrin being one These cause more bleeding which can cause more hemmoraging in the bladder. My Elmiron comes with a warning about not taking aspirin-containing products, so the Motrin may actually be causing you more pain. Also, I understand about the timing. I'm having a dfficult time also. I end up taking a tablet about 1 am so I can space them equally, which I think is important to proper use of the product. Do talk to your gyn. You should be able to after all these years. Always be an aggressive participant in your own treatment and a good doctor will actually appreciate it; if not, move on if insurance allows. Sorry about the cysts and HPV. You must continue the the exams though. HPV can cause pelvic pain so you have several situations to deal with at one time, but it CAN be done. You can feel better. I know I do, not all the time, but do have better times. The Prelief especially helps me. Good luck. Katy
What is Elavil? I have been hearing about this drug and do not know what it is. I am only taking Elmiron and the herbal med.Bladder Q. I have only been on the Elmiron for about 2 weeks, so it hasn't had time to work. I have seen that many of you take Ditropan or Detrol. I found that it really doesn't work for me. Has anyone else taken Detrol and found that it doesn't work?
There is an article on the ICA website about how to make pelvic exams more comfortable for IC patients. I plan to print it out & take it to my gynecologist appt Monday.
The problem for me with most cheeses isn't that they're dairy. I can drink milk, eat ice cream with no problem. The problem occurs in the aging process of the cheese. So, mozzarella & farmer's cheese which are barely aged are ok for many of us. Cottage cheese & string cheese (which I think is mozzarella) are ok. Careful with cream cheese, in the block it's okay, in the tubs it's preserved with sorbic acid!
Advil is not aspirin, it's ibuprofen, but it definitely makes my bladder hurt! Pyridium Plus is a barbiturate drug, which nobody told me til I got to the pharmacy & saw all the warning labels. If you're concerned about not wanting to be spacy in front of your students, this might not be a good one for you.
Whatever you see on these message boards, be sure to check it out yourself with your own research & doctor!
08-07-2004, 04:36 AM
Thanks Kadi for the suggestion on the article. I remember reading it in my early quest for answers last week but couldn't find it under duress at 4 am this morning. Please let me know how your appt goes next week.
I started on Detro LA about 3 months ago when my uro thought it was overactive bladder. I'm still on it but it hasn't helped much. Now I wonder if it hasn't made the pain worse. I will ask when I see the uro next time.
And I will go back to my gyn. He has helped me through some tough times and we have even had some laughs together. Must have just been a bad day for the nurse. Wonder if she knows what IC is like? Linda
Detrol LA helped when I had overactive bladder, but when the IC started (they are not the same problem) it became useless. Some IC patients do find it helpful however. Ditropan is a stronger medicine for bladder spasms, overactive bladder & some types of incontinence. I take 5mg at night because my bladder spasms when I lie down to sleep, don't know why. Or I take 1/2 tablet during the day if flaring.
Good luck with your doctor, and definitely mention the rudeness of the nurse. Even if she doesn't understand IC (and that is a very compassionate way to view her behavior), she still should be professional & polite. Unfortunately, no matter what I've done, I've encountered an appalling number of rude nurses this past year. In fact before I call a doctor's office I write down what I'm going to ask first, so that if I do get rudeness, I can stick to what I wrote & not get emotional about the unfairness of it. I make sure to tell the nice ones how very much I appreciate them.
Hope things go well at your appointment too:)
08-07-2004, 09:00 AM
Hi. Advil and Motrin are both brand names for ibuprofen which has aspirin characteristics; that's why it's considered an aspirin-containing product because it can cause bleeding. Tylenol is the one that doesn't, but I'm having a hard time because I usually take ibuprofen for back pain and spasms and Tylenol doesn't help that, but I've been easing off, trying to use as little as possible. Kadi is correct about the aging process of cheeses. One might not be dairy sensitive, but fermentation sensitive. This is very common sensitivity so anything aged or cured can be a problem. A lot of people with allergies to mold and mildew will also have a reaction to this. I know, I'm allergic to just about everything but have been taking allergy shots for over 30 years every three weeks (with the same doctor and nurses!) and have built up quite an immunity to most of the culprits so I'm much better off. By the time I'm 80 I might be feeling pretty well! Katy
08-07-2004, 10:17 AM
Katy, your reply reminded me of another question. I have dust, mold, pollen and animal allergies, as well as asthma. I am on Rhinocort Aqua and Allegra for the allergies and Advair, Singular and Ventolin for the asthma. Do any of these count as an antihistamine for the IC or is there something better that will help both? I too am on allergy shots, but weekly. I tried to stop about 2 yrs ago but always seemed to get sick every time a student sneezed on me. I am somewhat lactose intolerant and have problems with milk, and really expensive ice cream. The cheap stuff didn't seem to bother me, nor did the fermented cheeses or yogurt. I guess I will have to try to make my own frozen yogurt after I am somewhat stabilized.
I am being a little bit more cautious about the Motrin after all of the suggestions. Trying some of Katrina's list. Ice seems to work better than heat, at least today. Anyone know if a hot tub is okay? We keep ours at 101 degrees which isn't as hot as most.
Kadi, thanks for the suggestions about nurses and written questions. I'm sure I will be seeing a lot of them over time.
The antihistamines that have been most studied for IC are Atarax & Vistaril. I did read a post by a lady who felt better when she took Singulair, but don't think there are any studies on that either-YET!! If you use an inhaler, notice how you feel when you use it, some meds can aggravate symptoms. That's all I know on that. Maybe somebody else will know more.
Hot tub (from what I've read here) depends on if you can tolerate chlorine or your pool chemicals. Also avoid jets on sensitive parts, you know....
I learned a lot by ordering the New Patient Kit from the ICN shop (on this website) -
It contained "The Interstitial Cystitis Survival Guide", "Patient to Patient: Managing IC & overlapping conditions" and a cookbook for IC patients, "A Taste of the Good Life". And a bathroom card to show when you need a store manager to open a bathroom for you. I use those books all the time!!!
08-07-2004, 10:59 AM
Kadi, Thanks for the suggestion of the suggestion of the New Patient Kit. I was thinking of ordering the Survival Guide but now will get the whole thing.
Hugs to all of you for your help today! Linda
08-07-2004, 11:49 AM
I would just like to clarify a statement made in one of the posts. Ibuprofen is not considered an aspirin-containing product. Ibuprofen does not contain acetylsalicylic acid which is the drug contained in aspirin.
Both drugs may interfere with blood platelets -- causing bleeding. They should not be taken together because aspirin actually makes ibuprofen less effective. Both drugs taken together also raises the risk of bleeding. If you are sensitive to aspirin it is advised not to take ibuprofen.
Under direction of an MD, larger doses of ibuprofen can be taken effectively. Whether or not the drug helps you is an individual response. Some patients may get relief from their IC symptoms with this drug, while others may not.
If you have been taking ibuprofen, and have any concerns, you should check with your MD.
You mentioned Cornsilk tablets for pain. Do these need to be taken everyday or just when needed? Can you find them at a health store?
08-08-2004, 05:35 AM
Hi. For Mags, Elavil is an antidepressant that is often prescribed for IC patients because it helps patients rest better at night.
Jeanne, you're correct about ibuprofen; I didn't mean that it had aspirin in it, but that it may cause bleeding in patients who have to be careful about blood thinning so it may be something IC patients need to avoid to eliminate if they are on it. Thanks for clarifying my statement. When I said "aspirin-like characteristics" I didn't mean that it contained aspirin. Katy
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