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icnmgrjill
02-01-2006, 09:22 AM
Alot of patients ask me... how do I cope with IC? Why am I so optimistic about the future?? Honestly, I spend so much time with researchers, doctors and patients, I see the success stories each and every day.

The core concept of IC is that your bladder is either severely irritated or injured. If you've had a bladder distention, your doctor probably saw those small petechial hemorrhages (aka glomerulations) which are, in essence, wounds. Or, you might have the larger wounds which are called Hunner's Ulcers. Not all IC patients have glomerulations or HU's so don't freak if you don't. Remember that a diagnosis of IC is based primarily on your symptoms.

We're not sure exactly how the irritation/injury happens. In an ICN survey, we asked patients what they believed triggered their IC. They reported several events, such as:


- it can be damage from a single UTI,
- it can come from a fall or car accident,
- it can be a chemical exposure (such as chlorine),
- patients going through chemotherapy often struggle with bladder irritation.. thus it can come from another medication
- after an aggressive labor & childbirth & more

I think for many patients, it can also begin because of a diet so high in junk foods (coffees, sodas, etc.) that the bladder just can't tolerate the chemical load. Think about it. The mammalian bladder is designed to be the toughest cell membrane in the body so that it can store toxins until they can be voided out through urination. But, it was never designed to hold excessive levels of acid that we would see in patients that drink massive amounts of sodas or coffees. God forbid they only drink beverages and never drink water. Can you just imagine just how concentrated and junky their urine is? Uggh! I believe very strongly that a number of patients, through a poor diet, have traumatized their bladders to the point of irritation. :bonk:

Dr. Theoharides, in his latest lecture on our site, also made a case for IC being the result of another internal issue, such as endometriosis or IBS. You can find more on that in his lecture at: http://www.ic-network.com/guestlectures/

But, regardless of how those injuries occurred... and please don't exhaust yourself trying to figure it out unless you know you were a junk food junkie.... I believe that the secret to living with IC is looking at this as a simple injury or irritation. The bladder is wounded. It's irritated and, as with all wounds, needs to be protected, soothed and given time to recover. I liken it to a skinned knee... with lots of little tiny wounds.

Your job is to soothe the bladder, to not irritate it further and to use medications, if needed, to help control inflammation and irritation. Here's the basic plan:

(1) Don't hurt your bladder further through diet: If you poured acid on a wound every day, it wouldn't heal, right? So, even if you feel okay when you have that cup of coffee, you have to ask yourself... would I pour coffee on a wound?? If the answer is no, don't do it. I think that it's important to avoid those top five forbidden foods for atleast three months or longer. You can read our diet list in the ICN Patient Handbook, link at the top of this page.

(2) Consider the concept of a bandaid or a coating to cover up those wounds and give them a chance to settle down: The most common coating is, of course, Elmiron but the flaw with elmiron taken orally is that most of it is destroyed by digestion before it reaches the bladder. This is why patients have to take so much for so long to see some benefit. But, there's a new innovative bandaid worth considering... that's called a rescue instillation. Basically, it uses elmiron (or heparin), a local anesthetic and some sodium bicarb to numb the bladder and help restore the bladder lining. C. Lowell Parsons (UCSD) reports a 90% success rate with this technique and has even taught children how to do it at home. You can read about rescue instillations in our patient handbook as well... or you can hear Dr. Parsons talk about it in the DVD from the San Diego IC & Pelvic Pain Conference ($22.50 at www.icnshop.com)

(3) Reduce inflammation: Okay... so the bandaid sits on the surface but it doesn't get down into those red, sore tissues where inflammation is running rampant. Inflammation is something like a vicious circle. Mast cells release histimine (which creates the red, painful swelling in allergic reactions and mosquito bites). Histamines irritate the nerves which then release Substance P. Substance P then cause the mast cells to release more histamine. Vicious ugly circle. So, our goal is to break that cycle... perhaps using an anthistamine (hydroxyzine aka Atarax or Vistaril) and/or a low dose antidepressant. Quercetin, a bioflavinoid found in most urological OTC supplements, also has anti-inflammatory properties! So, there are some OTC products like Algonot, CystaQ, Bladder Q that are options you can explore. Read Dr. Theo's lecture for more information on quercetin, etc. We also have lectures by Dr. Dan Shoskes discussing this!

(4) Treat pain promptly: Pain is like a fire .... the longer you let it go, the bigger it gets and the harder it is to stop. Thus, it's important to catch pain early. I can stop a flare in an hour because I know exactly what my early warning sign is (a searing pain that goes up my belly). If I have that pain for more than 30 minutes, I act quickly. I stop what I'm doing, slap on a heating pad and try to get those muscles to chill out. If, 30 minutes later, that hasn't helped, I'm going to use a very small amount of pain medication to nip it in the bud. Most of the time, that stops it in its tracks, life goes on and I don't need any more pain meds. The secret is not waiting until your in agony before you doing something about it because then you've let the pain cycle get fully activated and it will be much harder stop and require more medication to treat.

(5) Listen to your muscles: Your bodies natural reaction to pain is to tighten muscles to protect you. This is why so many patients struggle with pelvic floor dysfunction, or muscles so tight that it's actually hard to relax enough to begin urination. Many urology clinics now offer pelvic floor assessments and therapy for their pelvic pain/ic/painful bladder patients. If you notice that it's hard for you to start your urine stream, consider asking for a pelvic floor assessment.

(6) Embark in a program of daily relaxation: Your tension and stress level will directly impact the pain and discomfort you are experiencing. Tight muscles burn and can be very painful. Certainly, we all have experienced pain as a result of stress as well. All good pain management programs focus around a daily guided relaxation that you can do at home. I didn't believe that it would work for me. I thought it was psychomumbo jumbo. But, I was desperate and willing to try anything. The first week, I fought doing a 15 minute guided relaxation each day... but I did it. By the second week, I was looking forward to it. I was amazed at how much better I felt when I took the time to relax my body. We sell several excellent CD's that you can use at home in our shop! I use them too!

(7) Break the isolation: This is probably the hardest thing about IC. After all, do you really want to go anywhere when you know you're going to have to pee every 15 minutes. But, isolation breeds depression. Depression breeds despair.

You are not your IC. IC doesn't change your head, your heart, your brain, your intelligence, your soul. You have nothing to be ashamed of. You are hurt... just as someone who might have been in a car accident. So, each day, you have to break your isolation. Go take a walk, call a friend, call your IC buddies. If you're feeling more chipper, go shopping or take in a movie (even if you get up three or four times). You deserve that movie!

Yes, you're hurting right now but you can still accomplish things. Whether it's crafting, working at home, writing ... use this time constructively! One great way to use that pain is to pour it out in a letter to your Senator, Congressmen, local paper or TV show... and ask for IC awareness! Tell your story and let's see if you can help others too!!!!

In reading the above, I realize that it sounds simplistic. I've written this more for the newly diagnosed patient who has mild to moderate symptoms. Patients with Hunner's Ulcers or advanced IC may need to use other more aggressive therapies as well. But, the diet, relaxation, muscle suggestions are sound for those too!

Most of my optimism is because I see the research and it's exciting. Each month, we learn more about the bladder, about IC, about pain care.... and are coming closer to that cure. We are rich with resources for patients with IC in 2006 compared to patients who were diagnosed just ten years ago. So, use them! Educate yourself about your options! Speak out for yourself! Give yourself permission to ask for help if you need it. Perhaps the biggest part of facing IC is acting for yourself when you feel so badly. But, you can do it! If I started a support group from my bed... you can make a few phone calls to set up doctors appointments, find a support group or whatever from your bed too.

One of my favorite mottos is: Ask! Action! Satisfaction. You can't get satisfaction until you take action. But you can't take action until you ask a question. So, if you're not happy with where you are with your IC, call your doctor and ask for an appointment. Then go to that appointment and work out an action plan. With luck, determination and consistency, you will move forward! Just do it!

:::from my desk and office in the heart of the California Wine Country where, sadly, they still don't have a low acid wine::::

Jill :)

IC SARAH-CPP
02-01-2006, 09:34 AM
Wow Jill! This post is just what I needed right now. My new pain doc also asked me to develop a "plan of attack" for handling flares and increases in pain. I was kind of intimidated by this but then I thought, hey this might be just what I need. I also scoffed when the doctors suggested bio-feedback but to my suprise, it has been one of the most helpful tools I use.
You are an inspiration to many of us so thank you for all you do!! I am working on my plan of attack as we speak and feel stronger for it!
Love Sarah

Cheries
02-01-2006, 02:47 PM
I enjoyed your post. I do take one tiny exception, which is the "junk food" theory. If this were true, the entire country would have IC. Instead, I believe it is genetic. (Why it is found in relatives etc.)

When we discuss theories I would like to see one of the most promising discoveries discussed, which is the toxin, APF. My question for you also has to do with the discovery of a toxin in the urine of IC patients. Dr. Susan Keay found this toxin in approximately 95 percent of patients, it inhibits the growth of bladder epithelial cells This toxin is called antiproliferative factor or (APF).This peptide or small protein puts the opithelial cells in the inner lining of the bladder in a state of suspended animation. It keeps them from growing. Dr. Keay says, "But once you remove it, after a week to 10 days, the cells can resume their normal growth. So it's truly an antiproliferative factor." In addition, "Dr. Keays team has found that the effect of the toxin could be totally overcome by additing a genetically engineered form of the growth factor to cell cultures in concentrations that are normally found in human urine." (From the ICA). I really believe that this is what makes us have this disase. What are your thoughts on this? I would love to see more money and research going into such a promising direction.

Also, I think your coping strategies are great. The only problem is that there are some patients who are in constant pain, regarless of these measures. I wish I could take pain meds occasionally to 'nip it in the bud'. Of course, I use many of your techniques but still experience pain. Years ago I used to be able to control the IC flares as you've described. Unfortunately it has progressed and these measures don't work. Do you have any ideas for the patients that fall into this category? Unfortunately my pain doc does not want to prescribe break-through meds for me.

icnmgrjill
02-01-2006, 03:43 PM
Cherie, I absolutely agree that IC can be genetic. It certainly runs in my family.... but given the APF research, it's probably about healing. That some of us inherit the APF or the process that creates that which dramatically slows down healing. That said, the wound model still fits perfectly. The source of the APF is still unknown but, if I remember the research correctly, it appears to be manufactured in the bladder rather than in the kidneys. My sense is that it could be the result of persistent inflammation as well. In any case, you just wouldn't believe the number of people who call our offices crying in pain who admit to drinking massive amounts of coffee and soda. We've been tracking this for years and, for some people, I think it plays a contributing factor in this whole thing particularly given the fact that when they modify diet, many do improve.

You're right about the pain... that's why i said i wrote it for mild to moderate patients and those who are newly diagnosed. I had steady, constant pain for more than a year with not even an hour of relief. Having access to pain medications after that year atleast reduced my suffering... but what I think broke me out of that cycle was #1.. diet modication, #2 hydroxyzine and, #3... I was a SANS patient and that non-invasive nerve stimulation may have broken that pain cycle for me.

But, that's just my experience. There are so many patients who respond to so many different strategies!

Jill :)

rosesitty
02-01-2006, 05:37 PM
Dear Jill - I appreciate your post more than you know. My IC was brought on three years ago by Accutane - a toxic medication for acne, that's even prescribed for children!! What IC has taught me is to take responsibility for my choices. I was so afraid of this med I sat on the prescription for 4 months. My dematologist kept reassuring me that the med was safe, so instead of listening to my inner voice, I thought the doc knew best, and I caved. I took the med for two days and my bladder started bleeding. I won't do that any more. In fact, I had the same fear about Elmiron because I already have elevated liver enzymes and wouldn't take it for a long time...however, after interacting with many online who are on the med, reading the posts and doing research, I decided to try it with the promise from my uro that she will check liver enzymes every three weeks. I think knowledge is power. If my uro isn't helping me, I'm not going to keep going to her, I'm proactively looking for someone who will look at my symptoms and develop a treatment plan WITH ME. More than anything, your point about breaking the isolation is so true. It's SO easy to sit at home, near the bathroom, in your PJ's, wrapped in a blanket with the tv, trying not to hurt. Our lives revolve around our bladders, instead of the other way around. Thanks again for all your good advice and support.
Warmly --

megancolleen
02-02-2006, 05:10 AM
So, you believe that people should stick to the IC Diet even when "bad" foods don't negatively effect them at all?

IC SARAH-CPP
02-02-2006, 05:33 AM
I also wanted to clarify my above post. I have unrelenting IC pain, 24/7 every single day. But there are also times the pain is worse than usual so those are the times I need a "plan of attack" to deal with the increase in pain. Especially for those of us who are on long term narcotics, we don't usually have the option of taking more pain meds, so that is the reason my pain doc wants me to write a plan of attack.
Sarah

K9wife
02-02-2006, 12:24 PM
I nominate Jill's post for the 2006 President's award! It is an inclusive and factual account of IC and its theory, treatment, and frustrations, and yet shows that in spite of it all, there are ways to manage and cope during the worst of it. Jill- you do a WONDERFUL job and I think your work goes far too often overlooked! Thank you for all you do for so many!

ellienor
04-01-2006, 03:00 AM
One major consideration is that IC is in 95% women.
Hmmmm. women dont eat more junk food or coffee. We do get more utis.

Maybe a uti at the same time a women happens to be drining coffee on that day?
The combination of the 2 could cause irritation that would not normally have occured from the coffee alone.
It seems there much be a hormone thing going on.
Why would a girl get it and not a brother in the same family?

Another thing, if the APF therory is really true, my goodness i hope they are working on that!! We have a drug for ED, but they are dragging their feet on one for us. There is more $$$$ involved when more people buy a drug. More of us should go to the doctor and get diagnosed so they see how many of us have this.

ddemos
04-03-2006, 08:01 AM
This may be relevant...

I took Tetracycline as a young teen for months, as it turned out, for no real reason. I have read in research that certain antibiotics, ie.Tet., Nitrofurantoin,and erythromycin work by invading the outer membrane of bacteria and kill it by causing it to leak to death. (Others, like penicillin, work by killing bacteria outright.) If you take this type antibiotic without bad bacteria to kill, it goes on to attack what's available... the badder lining. This could be caused by taking the drug too frequently, or by an inability to digest properly and thereby adhering to the bladder.

This made perfect sense to me, as it has only been recently that the dangers of perscribing antibiotics as freely as they once were, have been proven. Also could be a reason why IC is more prevalent in the US.

I don't know why this info. made me feel a bit more empowered, but it has.

Diana

Luanne
08-06-2008, 06:04 AM
[QUOTE=icnmgrjill;202191]Alot of patients ask me... how do I cope with IC? Why am I so optimistic about the future?? Honestly, I spend so much time with researchers, doctors and patients, I see the success stories each and every day.

The core concept of IC is that your bladder is either severely irritated or injured. If you've had a bladder distention, your doctor probably saw those small petechial hemorrhages (aka glomerulations) which are, in essence, wounds. Or, you might have the larger wounds which are called Hunner's Ulcers. Not all IC patients have glomerulations or HU's so don't freak if you don't. Remember that a diagnosis of IC is based primarily on your symptoms.

We're not sure exactly how the irritation/injury happens. In an ICN survey, we asked patients what they believed triggered their IC. They reported several events, such as:


- it can be damage from a single UTI,
- it can come from a fall or car accident,
- it can be a chemical exposure (such as chlorine),
- patients going through chemotherapy often struggle with bladder irritation.. thus it can come from another medication
- after an aggressive labor & childbirth & more

I think for many patients, it can also begin because of a diet so high in junk foods (coffees, sodas, etc.) that the bladder just can't tolerate the chemical load. Think about it. The mammalian bladder is designed to be the toughest cell membrane in the body so that it can store toxins until they can be voided out through urination. But, it was never designed to hold excessive levels of acid that we would see in patients that drink massive amounts of sodas or coffees. God forbid they only drink beverages and never drink water. Can you just imagine just how concentrated and junky their urine is? Uggh! I believe very strongly that a number of patients, through a poor diet, have traumatized their bladders to the point of irritation. :bonk:

Dr. Theoharides, in his latest lecture on our site, also made a case for IC being the result of another internal issue, such as endometriosis or IBS. You can find more on that in his lecture at: http://www.ic-network.com/guestlectures/

But, regardless of how those injuries occurred... and please don't exhaust yourself trying to figure it out unless you know you were a junk food junkie.... I believe that the secret to living with IC is looking at this as a simple injury or irritation. The bladder is wounded. It's irritated and, as with all wounds, needs to be protected, soothed and given time to recover. I liken it to a skinned knee... with lots of little tiny wounds.

Your job is to soothe the bladder, to not irritate it further and to use medications, if needed, to help control inflammation and irritation. Here's the basic plan:

(1) Don't hurt your bladder further through diet: If you poured acid on a wound every day, it wouldn't heal, right? So, even if you feel okay when you have that cup of coffee, you have to ask yourself... would I pour coffee on a wound?? If the answer is no, don't do it. I think that it's important to avoid those top five forbidden foods for atleast three months or longer. You can read our diet list in the ICN Patient Handbook, link at the top of this page.

(2) Consider the concept of a bandaid or a coating to cover up those wounds and give them a chance to settle down: The most common coating is, of course, Elmiron but the flaw with elmiron taken orally is that most of it is destroyed by digestion before it reaches the bladder. This is why patients have to take so much for so long to see some benefit. But, there's a new innovative bandaid worth considering... that's called a rescue instillation. Basically, it uses elmiron (or heparin), a local anesthetic and some sodium bicarb to numb the bladder and help restore the bladder lining. C. Lowell Parsons (UCSD) reports a 90% success rate with this technique and has even taught children how to do it at home. You can read about rescue instillations in our patient handbook as well... or you can hear Dr. Parsons talk about it in the DVD from the San Diego IC & Pelvic Pain Conference ($22.50 at www.icnshop.com)

(3) Reduce inflammation: Okay... so the bandaid sits on the surface but it doesn't get down into those red, sore tissues where inflammation is running rampant. Inflammation is something like a vicious circle. Mast cells release histimine (which creates the red, painful swelling in allergic reactions and mosquito bites). Histamines irritate the nerves which then release Substance P. Substance P then cause the mast cells to release more histamine. Vicious ugly circle. So, our goal is to break that cycle... perhaps using an anthistamine (hydroxyzine aka Atarax or Vistaril) and/or a low dose antidepressant. Quercetin, a bioflavinoid found in most urological OTC supplements, also has anti-inflammatory properties! So, there are some OTC products like Algonot, CystaQ, Bladder Q that are options you can explore. Read Dr. Theo's lecture for more information on quercetin, etc. We also have lectures by Dr. Dan Shoskes discussing this!

(4) Treat pain promptly: Pain is like a fire .... the longer you let it go, the bigger it gets and the harder it is to stop. Thus, it's important to catch pain early. I can stop a flare in an hour because I know exactly what my early warning sign is (a searing pain that goes up my belly). If I have that pain for more than 30 minutes, I act quickly. I stop what I'm doing, slap on a heating pad and try to get those muscles to chill out. If, 30 minutes later, that hasn't helped, I'm going to use a very small amount of pain medication to nip it in the bud. Most of the time, that stops it in its tracks, life goes on and I don't need any more pain meds. The secret is not waiting until your in agony before you doing something about it because then you've let the pain cycle get fully activated and it will be much harder stop and require more medication to treat.

(5) Listen to your muscles: Your bodies natural reaction to pain is to tighten muscles to protect you. This is why so many patients struggle with pelvic floor dysfunction, or muscles so tight that it's actually hard to relax enough to begin urination. Many urology clinics now offer pelvic floor assessments and therapy for their pelvic pain/ic/painful bladder patients. If you notice that it's hard for you to start your urine stream, consider asking for a pelvic floor assessment.

(6) Embark in a program of daily relaxation: Your tension and stress level will directly impact the pain and discomfort you are experiencing. Tight muscles burn and can be very painful. Certainly, we all have experienced pain as a result of stress as well. All good pain management programs focus around a daily guided relaxation that you can do at home. I didn't believe that it would work for me. I thought it was psychomumbo jumbo. But, I was desperate and willing to try anything. The first week, I fought doing a 15 minute guided relaxation each day... but I did it. By the second week, I was looking forward to it. I was amazed at how much better I felt when I took the time to relax my body. We sell several excellent CD's that you can use at home in our shop! I use them too!

(7) Break the isolation: This is probably the hardest thing about IC. After all, do you really want to go anywhere when you know you're going to have to pee every 15 minutes. But, isolation breeds depression. Depression breeds despair.

You are not your IC. IC doesn't change your head, your heart, your brain, your intelligence, your soul. You have nothing to be ashamed of. You are hurt... just as someone who might have been in a car accident. So, each day, you have to break your isolation. Go take a walk, call a friend, call your IC buddies. If you're feeling more chipper, go shopping or take in a movie (even if you get up three or four times). You deserve that movie!

Yes, you're hurting right now but you can still accomplish things. Whether it's crafting, working at home, writing ... use this time constructively! One great way to use that pain is to pour it out in a letter to your Senator, Congressmen, local paper or TV show... and ask for IC awareness! Tell your story and let's see if you can help others too!!!!

In reading the above, I realize that it sounds simplistic. I've written this more for the newly diagnosed patient who has mild to moderate symptoms. Patients with Hunner's Ulcers or advanced IC may need to use other more aggressive therapies as well. But, the diet, relaxation, muscle suggestions are sound for those too!

Most of my optimism is because I see the research and it's exciting. Each month, we learn more about the bladder, about IC, about pain care.... and are coming closer to that cure. We are rich with resources for patients with IC in 2006 compared to patients who were diagnosed just ten years ago. So, use them! Educate yourself about your options! Speak out for yourself! Give yourself permission to ask for help if you need it. Perhaps the biggest part of facing IC is acting for yourself when you feel so badly. But, you can do it! If I started a support group from my bed... you can make a few phone calls to set up doctors appointments, find a support group or whatever from your bed too.

One of my favorite mottos is: Ask! Action! Satisfaction. You can't get satisfaction until you take action. But you can't take action until you ask a question. So, if you're not happy with where you are with your IC, call your doctor and ask for an appointment. Then go to that appointment and work out an action plan. With luck, determination and consistency, you will move forward! Just do it!

:::from my desk and office in the heart of the California Wine Country where, sadly, they still don't have a low acid wine::::

Jill :)

glitteringglory
08-13-2008, 06:49 AM
This is well written. Thank you, Jill! I am determined to get on top of my IC problem. I am glad for the advice of others who know more about IC. I am still new to this!
Though I didn't like soda, I was a coffee junky. I quit in April. I am hoping my bladder recovers. The pictures of my bladder were alarming. I realise now that my bladder needs to be "babied".

glitteringglory
08-13-2008, 07:23 AM
Tell me more about the car accidents causing IC. It just clicked, I was in a roll over car accident 3 years ago (slid on ice). I thought I only suffered a cut to the head. Is it possible, my bladder was effected? I had a seat belt on. It was a very bad accident. My daughter was hurt very badly. But she is fine now (God's grace).

glassd18
08-14-2008, 03:32 PM
Hi Glory,

I just sent you a message on Facebook. This is an awesome post, and I'm glad I saw it again!!! Thanks again Jill.

Luanne
09-10-2008, 12:53 PM
I nominate Jill's post for the 2006 President's award! It is an inclusive and factual account of IC and its theory, treatment, and frustrations, and yet shows that in spite of it all, there are ways to manage and cope during the worst of it. Jill- you do a WONDERFUL job and I think your work goes far too often overlooked! Thank you for all you do for so many!


I am from Painted Post New York and I am looking for IC friends I am not sure where you are but maybe you can get back to me.
Luanne