Interstitial Cystitis?

[oybolshoi]

Just wondering if anyone here has been diagnosed with this and if so, have you any advice on how you and your doctor try to manage the condition?

I have not been officially diagnosed yet ... we're still testing for other things and we do know that I've got issues with calcification in the kidneys. But my urologist sounds pretty confident that IC has reared its ugly head in addition to the kidney stones.

I'm used to chronic conditions ... I have Crohns Disease, Endometriosis, and Arthritis ... but I'm starting to get a little frustrated (OK, a lot) and am trying to find ways to manage the fatigue and the pain / discomfort, especially in light of working 40-50 hours per week.

I apppreciate any thoughts or suggestions you may have. Thanks! :flower3:

[oybolshoi]

Just returned from nine days at WDW where I feel that I have become intimately acquainted with several bathrooms, especially at Epcot. :laughing:

I was really hoping someone might have some insight to share while I was away ... I guess I'll just keep muddling through. :confused:

[Tinker'n'Fun]

First :hug: Second, I am sorry I don't have any experience with the actual diagnosis, I do have the sypmtoms of this disease. Last, I would like to be with you during this, so I am in for the long haul....

[Tinker'n'Fun]

Please make sure to update. You can PM me anytime. I suffer from many problems with my bladder. I have extreme pain most of the time, Dr's found nothing. I have had attacks where my bladder bled so much that I spent many hours in the ER... Infections that don't show up, pressure, painful cycles, etc. All symptoms start and stay in the bladder and surrounding area.... Sound familiar? My Dr's have not diagnosed anything for me. So I do understand, but I can't give you any info... I wish I had an answer for you. Diane

[oybolshoi]

Hi Diane, thanks for posting. It sounds like you really have it bad - I'm so sorry to hear that you've been unable to get a definite diagnosis ... that's so frustrating. :hug:

As for me ... I had an IPV the day before we left for WDW and have since found out that everything looked OK (kidneys, bladder, etc.). So now it's time for the cystoscopy (I think I spelled that right) which is scheduled for next week.

It's just been really annoying since this began to get bad ... which was probably late in July. I feel like I'm walking around with a perpetual UTI and nothing seems to make it any better. I didn't let it get in the way of having a good time at the world, but it was frustrating to have to stop to use the bathroom every 30-40 minutes. Epcot should probably just name one of those stalls in the UK after me. :laughing:

Hope you feel better soon and thanks for the support - I really appreciate it. :flower3:

[Tinker'n'Fun]

Sorry your trip was so well "interupted". I had a cystoscopy a while back after the ER trip. They stated that my bladder looked "normal" expcept for a small area where the bleeding was coming from, probably from an undectected infection. The test was very easy and I was not uncomfortable at all if that helps. I had more problems with the IPV and the dye. You are in my thoughts. Keep me informed. Diane

[JandJ]

I'm sorry you're suffering through this! Whenever the dr. does a urinalysis on me there's "trace" blood but my mom had the same thing and it's never been anything at all. I used to have anxiety attacks that manifest in UTI feelings when it was 100% not a UTI. My primary care sent me to a Urologist 2 years ago just to be sure the trace blood was nothing serious. The Urologist was very nice but he couldn't find anything. He did a cystoscopy and I hate to contradict Diane, but it was one of the most painful tests I've ever gone through! After the cystoscopy I was in pain for 3 days and felt like I had the worst UTI ever known. I was there for a consult and the Urologist said "let's just do a cystoscopy" and I was led into another exam room. I had no idea what was coming or how awful I would feel. He did say I had one of the worst reactions he's ever seen, but I later found out that most drs. give the patient Valium or a light sedative before doing the test. Mine did nothing! Please talk to your doctor before the test and make sure he/she has fully informed you about what it entails. For me, it turned out that it was all anxiety, so "all in my head," which was hard to deal with at first, but has actually turned out really good because I've been able to deal with the anxiety and no longer have random UTI symptoms.

Best of luck for a quick diagnosis and treatment :hug:

[oybolshoi]

Thanks to both of you for the input and the support. I've actually been planning to call my doctor's office tomorrow to ask some questions. I'm usually swamped at work through Wednesday and don't have much time to call during the day. Thursdays are breathing days at my office so I can make all the calls that I've added to my list since we got home last week.

In the meantime I'm just keeping on keeping on ... trying not to let things get me too bummed out. :thumbsup2

[Tinker'n'Fun]

Thanks to both of you for the input and the support. I've actually been planning to call my doctor's office tomorrow to ask some questions. I'm usually swamped at work through Wednesday and don't have much time to call during the day. Thursdays are breathing days at my office so I can make all the calls that I've added to my list since we got home last week.

In the meantime I'm just keeping on keeping on ... trying not to let things get me too bummed out. :thumbsup2

Please let me know how everything is going. Hope you got to speak with the Dr. I had only a local rub during my cysto, like lidacaine. I do take and did take my Xanax before going to the test. I would ask your Dr. what he does to make you comfortable. Sorry that the PP had such a bad experience with the test. Everyone is different and I pray that you will have no side effects and that the pain is small. Diane.

[oybolshoi]

spoke with the nurse today who was very nice. she said they will do a flexible cystoscopy ... should only be about 5-10 minutes and will give me a local anesthetic to ease any potential discomfort. nothing to do now but wait ... and go to the bathroom. :laughing:

[Tinker'n'Fun]

Had flexible also. It took about 5 minutes total for the test.... You will be just fine... Well if you could stay away from the bathroom it would be better;)!!

[oybolshoi]

Back from the urologist and the cystoscopy ... it wasn't pleasant but it wasn't as bad as it could have been I suppose. I cheated and popped a darvocet right before I left the house. ;)

The diagnosis is official ... IC joins the other chronic conditions that I deal with on a daily basis. I have a prescription that I'm going to start taking this evening and then a follow-up with the doctor in five weeks. If this doesn't work then we'll move on to other drugs / treatments.

I'm also going to start keeping a closer eye on my diet to see if there are any triggers that may cause it to flare up more than usual. But I refuse to give up my coffee! :laughing:

Thanks again for letting me share ... I hope anyone else who's dealing with something similar feels free to post here. I think we could all use a little support and encouragement, especially with some of these conditions that are things you're not supposed to talk about in polite society. ;)

I think I'm just going to start telling people that my internal plumbing is shot to hell. :laughing:

[Tinker'n'Fun]

While I am sorry that it is official that you have Interstitial Cystitis, I am grateful that you got a diagnosis. The not knowing part of all these things happening to our bodies is sooo horrible. Oh and I can join your group...

Hi, my name is Diane and my internal plumbing (the whole system front and back) is shot to he double hockey sticks also!!:rotfl2: :rotfl2: and so is my digestive system, hormonal balance, my anxiety coping part of my brain, and well lets say all of it Sucks!!

I give you points to be on the Mom's Panel for Disney. Isn't the bathroom one of the most major concerns all Moms have and just think, you will be an expert in that area.

Hope the meds work. Do you mind if I ask what they started you on? Diane

[oybolshoi]

After this last trip I feel especially qualified to give advice on many of the bathrooms in Epcot. Avoid Germany if possible ... their toilets are off-center of the stalls - makes it very difficult to use the facilities. :laughing:

As for the drug I'm starting, it's called amitriptyline - a very low dose pain reliver / anti-depressant. My doctor was very careful to explain that he's not giving me this drug because I'm depressed (although I am always a little down after coming home from WDW ... ;) ) but because it apparaently has some beneficial side effects that really help with this condition. I haven't read up on it yet ... I was taking a nap.

The dose is only 10mg per day. But he said it could take about 4-6 before I notice any real improvement.

[JandJ]

Just checking in to see how your test went. I am SO happy it wasn't too bad!! I forgot to mention that my urologist gave me a list of foods that can cause UTI-like symptoms and I try to avoid them. Top of the list: cranberries! Also, strawberries, tomatoes, lemon juice/lemonade, onions, pineapple. Basically anything too acidic.

I was on amitriptyline years ago, after my IBS was diagnosed. But, happily with diet changes, regular exercise, and therapy for my anxiety, I've been off it for almost 4 years now and doing very well. It will make you a little sleepy and can cause you to wake up with a very dry mouth. I took it for years and every so often they had to increase my dosage as my body just sort of got used to it. When I stopped I weaned off from 30mg to 20 to 10 to 5 to nothing over a few weeks.

I was actually thinking about you when I saw a commercial for that new stuff, Detrol. Did your doctor say anything about that?

Sounds like you have a good doctor who is on the right track. I was so happy to read that they gave you something before the test - I wish mine had! Good luck in your treatment!

[ICNAnnie2]

Hi. I am so sorry you have been diagnosed with IC. :grouphug: I have had interstitial cystitis for 6 years now. Additionally, I have ulcerative colitis and pelvic floor dysfunction. I hope the amitriptyline (elavil) helps you. There are MANY other meds and treatments available for IC patients. Has your doctor started you on Elmiron (the only FDA approved oral medication specifically for IC)??? Atarax? Prosed, pyridium, urelle or any bladder analgesic?...........the list of possible helpful meds goes on and on.

Dealing with IC is difficult and requires a great deal of trial and error to get under control. I highly recommend you learn as much as possible about IC so you can better communicate with your doctor and make more informed decisions regarding your treatment plan. There is a wonderful website devoted to support and information for people with IC. You can find it by searching for the Interstitial Cystitis Network. There you will find a wealth of information on IC, diet, medications frequently used and other treatment options. There is also a support forum on the website that is comprised of thousands of other ICers who can support and help you.

Diet is absolutely crucial for getting IC under control. That cup of coffee (even decaf) can cause increased inflammation, increased frequency and urgency as well as more pain. There are far more foods besides coffee which can irritate a bladder damaged by IC. You can find detailed information about the IC diet on the website mentioned above.

I hope you will seek out the help of other ICers. They can really help you get on a good track for recovery. Hope you will be feeling better very quickly!

[oybolshoi]

Just checking in to see how your test went. I am SO happy it wasn't too bad!! I forgot to mention that my urologist gave me a list of foods that can cause UTI-like symptoms and I try to avoid them. Top of the list: cranberries! Also, strawberries, tomatoes, lemon juice/lemonade, onions, pineapple. Basically anything too acidic.

Thanks so much for checking in - I appreciate it. :hug:

You know what kills me about that list? The cranberries. For years I've been drinking cranberry juice because it's supposed to help with UTIs ... joke's on me I guess. :headache:

The only other thing on that list that I really like is tomatoes ... I could eat fresh tomatoes every day of my life and never grow tired of them!


I was on amitriptyline years ago, after my IBS was diagnosed. But, happily with diet changes, regular exercise, and therapy for my anxiety, I've been off it for almost 4 years now and doing very well. It will make you a little sleepy and can cause you to wake up with a very dry mouth. I took it for years and every so often they had to increase my dosage as my body just sort of got used to it. When I stopped I weaned off from 30mg to 20 to 10 to 5 to nothing over a few weeks.

I was actually thinking about you when I saw a commercial for that new stuff, Detrol. Did your doctor say anything about that?

Sounds like you have a good doctor who is on the right track. I was so happy to read that they gave you something before the test - I wish mine had! Good luck in your treatment!

The amitriptyline does make me sleepy - I take it about an hour before going to bed. I'm definitely sleeping a little better so that's nice.

We didn't talk about Detrol at all. So much of my problem has been tied in with pelvic pain and overall discomfort along with the urgency / frequency issue that I think he wanted to try to alleviate the pain first. And I was getting up two - three times in the middle of the night so I wasn't getting a lot of sleep either.

Wacky wacky how these inflammatory issues affect people. And I do like this doctor - he seems pretty sharp and is easy to talk with.

Hope you're doing well! :goodvibes

[oybolshoi]

Hi. I am so sorry you have been diagnosed with IC. :grouphug: I have had interstitial cystitis for 6 years now. Additionally, I have ulcerative colitis and pelvic floor dysfunction. I hope the amitriptyline (elavil) helps you. There are MANY other meds and treatments available for IC patients. Has your doctor started you on Elmiron (the only FDA approved oral medication specifically for IC)??? Atarax? Prosed, pyridium, urelle or any bladder analgesic?...........the list of possible helpful meds goes on and on.

Dealing with IC is difficult and requires a great deal of trial and error to get under control. I highly recommend you learn as much as possible about IC so you can better communicate with your doctor and make more informed decisions regarding your treatment plan. There is a wonderful website devoted to support and information for people with IC. You can find it by searching for the Interstitial Cystitis Network. There you will find a wealth of information on IC, diet, medications frequently used and other treatment options. There is also a support forum on the website that is comprised of thousands of other ICers who can support and help you.

Diet is absolutely crucial for getting IC under control. That cup of coffee (even decaf) can cause increased inflammation, increased frequency and urgency as well as more pain. There are far more foods besides coffee which can irritate a bladder damaged by IC. You can find detailed information about the IC diet on the website mentioned above.

I hope you will seek out the help of other ICers. They can really help you get on a good track for recovery. Hope you will be feeling better very quickly!

Hello there and thanks so much for your post. The stuff I'm on right now is our first try - I go back in about five weeks for a progress report. My doc was pretty upfront about the possibility of having to switch things up. I'm used to that to a certain extent thanks to dealing with Crohns disease.

I have been reading a lot on the IC website - my doctor gave me a lot of great information and even before I'd seen him I was already reading about it because I suspected something more than a chronic UTI was at work.

It sounds like you're dealing with a lot of the same things I am - I hope you're feeling good these days yourself. :hug:

Thanks again for the great advice and information - I sure appreciate it!

[Tinker'n'Fun]

Oybolshoi you are in my thoughts... Hoping you are getting some relief from the new meds..

[ICNAnnie2]

It sounds like you have an informed doctor with whom you communicate well. That's GREAT!!! It is tremendously important to work with a physician who is up-to-date in their knowledge of IC and all the treatment options now available. Unfortunately, there are still a lot of uninformed doctors out there who know nothing about IC (including some urologists). There are even some doctors out there who don't believe IC is real and that it is a psychosomatic syndrome. IC has been recognized for over 200 years, but not much research was done until the last 15 years or so. Why? One reason is 90% of those suffering from IC are women (though many now believe chronic non-bacterial prostatitis in men is actually IC). It was considered an "hysterical" condition of women and not worth researching. Recent research has given us lots of scientific proof of IC and people who have suffered because they were told "it's all in your head" are now winning malpractice lawsuits. Still, there are many doctors out there who were not educated about IC and it is going to take time for those doctors to get up to speed.

Researchers are beginning to make progress. We still do not understand the cause of IC, but we are beginning to discover some clues. There is a great deal of reason for hope that the elusive cause will be found and will lead to a cure or better treatment options.

I'm glad you found the Interstitial Cystitis Network on the web. The information and support there will be of tremendous value to you. Another source of information is the Interstitial Cystitis Association.

It often takes a combination of meds and or treatments to bring a measure of relief for IC patients. Some doctors, apparently like yours, like to begin IC patients on one med at a time to see how that med works for that individual. Other doctors use a "shotgun" approach.....throw all the big meds known to help at once to try and bring relief as quickly as possible and then go back and evaluate what is helping and what isn't later. It's a matter of each doctor's preference. One thing you might want to ask your doctor about is Elmiron and whether it might be right for you. It's the only FDA-approved med specifically for IC. It works wonders for some and not for others and only by trying it will you know if it works for you. Especially considering you are also dealing with Crohn's, only a medical professional can tell you whether or not it is right for you to try. You might want to ask about it at your next appointment, however. The reason to ask about this now is it takes anywhere from 3-12 months before patients see the full benefits of it (it helps me a great deal, but took 9 mos before it really kicked in for me).

Since you have found the ICN, you surely have seen the detailed IC diet. It is far more than just cutting out a few fruits (all fruits are no-nos in the beginning except pears, blueberries and some can tolerate a little honeydew melon, banana or mild Gala apples) and acidic foods. No tomato also means no tomato products at all---no sauces, no juice, no salsa...not even ketchup. No acidic drinks means no coffee, no tea (including green tea and most herbal teas), no fruit juices except citric acid-free pure pear juice or blueberry juice, no soda & absolutely no alcohol. Especially when first diagnosed and trying to figure out your personal dietary triggers, the only thing you should be drinking (other than the 2 juices mentioned above) is bottled spring water (city tap water contains chlorine which can really irritate an IC bladder) and milk (IF you can tolerate dairy with IBD). Also, Dasani and a couple of other brands of bottled water add mineral paks to improve the taste. Those added minerals have the potential to irritate a wounded bladder and it is best to avoid these and stick with natural (nothing added) spring water. Following the diet also means no strong spices, no artificial sweeteners, no aged cheeses, no preservatives, no artificial colors, no artificial flavors, no nitrites/nitrates, no chocolate, no MSG, no caffeine, no soy or soy products like soy sauce, soy flour or tofu (very acidic), no fermented or smoked foods, no marinated foods, no mayonnaise (has vinegar), no salad dressings with vinegar or tomato, no mustard and nothing containing, ascorbic acid, sulfites, autolyzed yeast, meat tenderizer, vinegar, worcestershire sauce.........etc, etc, etc. You really have to read food labels carefully and cook most things from scratch to be sure no problem ingredients are included. It's difficult to give up so many favorites foods and drinks, but I assure you it is worth it to reduce your pain! You start out eating only foods from the usually ok column of the diet list. That gives your bladder a very soothing environment which will help the inflammation decrease. After a couple of months and once you start to feel better, you can add in new foods from the "may be ok" column. You need to do it one thing at a time so you can tell if your bladder tolerates the new food or not. If you don't see an increase in symptoms with a new food, you can add that food back into your diet. It takes awhile to go through the whole process, but only by doing so can you determine what foods your bladder will tolerate and what foods trigger bladder symptoms. Everyone is a little different in their reactions to foods, so everyone has to go through this process. It sounds hard, but I assure you it does get easier. Your diet is limited in the beginning, but will expand as you learn what is safe for you and what you must avoid. For the vast majority of ICers, what we eat has a huge impact on our symptoms and following the diet (and learning our own personal triggers) is well worth the effort. I understand how difficult it is to accept these diet limitations. I,too, was into fine dining and fine wines. It took me quite awhile to come to terms with it and accept the fact I had to follow this if I wanted to reduce my pain and other symptoms and reduce the risk of doing further damage to my bladder lining. It is an entire change of lifestyle, a pretty bitter pill to swallow. Try to think of it as temporary, not permanent. As you go through the discovery process you will surely find there are more foods you can tolerate than in the beginning and it gets quite a bit easier to handle.

In other tips, have you tried using heat? My heating pad is my best friend when I am flaring. Other people find cold helps them and use ice packs when the pain is bad. You might want to try both and see if either one helps you. If heat helps, you can use stick-on heating pads while working, riding in a car or traveling. Is sitting painful for you? Try sitting on a pillow. Special seat cushions designed for the needs of people with IC are also available. Does riding in a car with all that vibration from the road and the engine bother you? If so, try sitting on a memory foam pillow. It can help to absorb some of those irritating vibrations.

Hope I have given you a few helpful hints. I understand what you are going through right now. Please do remember that, though it may take some time, the vast majority of people with IC do find meds and treatments that help them and they can go on to live fairly normal and happy lives. And also remember.......remission CAN happen. I haven't reached it yet, but I am still working on it and maintain hope I will get there. Even though I am not in remission, I have found a combination of meds that helps me and, other than having to follow the diet and rest when flaring, I lead a pretty normal life. I travel and enjoy life. I've learned what foods I can tolerate and can now usually find something on a menu my bladder will tolerate so eating out is not impossible.

I sincerely hope you will quickly find relief........and then a very LONG (forever would be good) remission!!!

[ICNAnnie2]

I've been reading your recent dining review and am really enjoying it. However, I must admit even the mention of some of the foods you consumed made my damaged-by-IC bladder cringe!

Are you doing what I did? Are you denying that diet affects how you feel? Are you thinking that you are in so much discomfort/pain it doesn't seem to matter what you eat or drink? I did that when IC first struck me and lots of others do it, too. Diet denial is common. What you MUST realize is that right now your bladder is so very inflammed and irritated you can't distinguish between foods that are ok and those that hurt you. The only way to get your bladder to calm down is to CAREFULLY follow the diet and eat only foods in the "usually ok" column (follow the IC Diet you can find on the IC Network). Some people say they begin feeling better after a week or so on the diet. For many of us, it takes 8-12 weeks of following it before the bladder begins to calm. When that finally happens you can then begin adding in new foods and you WILL be able to tell if a food is bothering your bladder or not.

You stated yesterday on another board you consumed tomato soup, grilled cheese and smoked porter. OUCH, OUCH, OUCH!!!!!!!!!!!!!!!!!!!!!!! Ok, the grilled cheese would be alright as long as you used mild American or mozzarella cheese and white bread with no soy flour or preservatives in it. The other items are real bladder burners!!! Also, since you have a cold, watch out for decongestants as they can really irritate the bladder. Many of us with IC are ok with using Mucinex and antihistamines are usually ok (in fact antihistamines are often used, in combination with other meds, to treat IC).

PLEASE, PLEASE, PLEASE........begin taking care of yourself and start the diet today. IC is a serious disease. It can be one of the most painful diseases known to humankind. Did you know that severe IC pain has been evaluated as being as painful as end-stage cancer? Also, please involve your DH and make him a part of your health care team. He needs to accompany you to some of your appointments and learn as much as he can about your condition so he can better understand what you are going through, give you the support you need and better cope with living with IC. You two are a team. IC will impact every aspect of your life. You are in this journey together.

With IC, the protective inner layer of the bladder is damaged allowing all the toxic substances passing through to come into direct contact with nerve cells and with the delicate bladder tissue. Now, if you had a wound like that on the surface of your skin and you poured lemon juice, vinegar or alcohol or paprika or chili powder (or any other acid or strong spice) on it every single day, what would that do to the wound? Obviously, it would irritate it and make it more difficult for that wound to heal. Well, the same applies to your bladder. It is wounded and, when you continue to consume bladder-irritating substances, those irritants pour over that injured tissue and make matters worse.

IC is a monster of a disease. I know how very, VERY difficult it is to give up all that is required. You have to count on your doctors to help you, but you also have to do all you can to help yourself. There is life with IC and it can be a good one. It will be different from what you have known, but it still can be good. The IC Network support forum is there with wonderful experienced ICers who can offer tons of helpful tips to cope with all aspects of this disease.

I'm sure your dear friends here will also offer invaluable support to you as you travel this difficult road. Good luck.........and PLEASE take care of yourself.:hug:

[Tink rules]

Awwwww.. Bendy....

Why are we such sisters in all of this semi misery??? :hug:

I keep getting kidney stones and I'm afraid that it's more...

I can tell you that the bathrooms by the Grand Floridian Cafe do have double ply TP... (I was quite impressed with that...)

Hugs for feeling better!!!

[LilyLake]

Hi Brenda. I thought I'd pop in here and give some support, and commiserate. We've chatted briefly in the past. I'm a fellow figure skating fan. I love your dining reviews. Today I read your Halloween sushi review and really enjoyed it. I also read some of the Boca Ratan (sp?) trip report. That's quite an anniversary gift. I just had my 25th anniversary at my job, and I got to select from a list of gifts which were in the $200-300 range. (Yes, I looked some of them up on the internet to see how much they cost.) I have a very nice globe now. I'm sorry I'm such a lurker and rarely say anything. I guess my name should be LilyLurk.

While I don't have a bladder problem, I am having a health problem that I'm trying to clear up with some medication and a very limited diet. I'm fighting yeast, which thrive on sugar, so I'm eating a very low-carb diet, in order to keep sugar out of my digestive system. I also have to avoid all yeasts and molds. So I can't have anything with vinegar in it, or any cheese. I'm also avoiding the lactose in dairy products, which also means no cheese - even the not-so-moldy ones. I've been doing this for 2-1/2 weeks. So essentially what I'm eating are meat and vegetables, but I can't have smoked or cured meats. So no bacon, ham, or smoked salmon. I also eat nuts, which I know you don't eat.

I started with a garden-variety low-carb diet for a week before I started the meds. and really limited diet. In 3-1/2 weeks I've lost about 8 pounds. Okay - I can stand to lose a little weight, but now I'm within 5 pounds of what I consider to be my ideal weight. And I'm not trying to lose weight, or just allow myself to go hungry. I'm eating a lot. I'm watching my ketosis levels with ketostix, and I'm definitely in ketosis. This means I'm burning fat, and is the reason low-carb diets work. So I have a question for some of you on this thread who have done this diet for awhile: do you have a problem with losing too much weight? I haven't looked at the IC website to see what the approved foods are, but I'm wondering what's on there that you can use to keep your weight where you want it. I need to go another 1-1/2 weeks before I start trying to add things back in.

I've been enjoying reading your latest dining review over the last 2-1/2 weeks, while I try to figure out which meat I'm going to eat next. It does get tiresome. I did make some spaghetti last week. It was essentially ground turkey, onions, garlic, some herbs and canned crushed tomatoes. I just didn't eat it with any noodles or cheese. Boy, did my body not appreciate that dinner! And I had to be up at the high school that evening for a boys hockey meeting. :headache: I haven't had any canned tomatoes since. :rotfl2:

Some of the meals I eat are really good, and afterwards I think "this isn't so bad." This lasts until the next time I start to get hungry and have to have some other plain meat and vegetable meal and I want to commit hara-kiri. I have to remind myself that it's for the greater good, and I'm going to stick with it.

So Brenda, this is new to me, too. Feel free to PM me, if you'd like. I'm depressed for you. I know how much you love food and drinks. Of course, since I'm avoiding yeast, I can't have alcohol, either. I'm not a big drinker, but I do enjoy a nice glass of wine.

Oh, something else. Apparently my bladder got thrown-off by the anti-yeast medication I'm taking. I guess my bladder is used to having yeast in there and didn't appreciate the change. So I developed a mild bladder infection. Now, antibiotics are probably how I got into this mess, so I wasn't about to try to get an antibiotic for this. What to do? Cranberries! But cranberry juice cocktail is loaded with sugar and I'm not using artificial sweeteners, either. So on Halloween night as you were getting ready to enjoy your sushi dinner, I had the Mr. stop at the grocery store so I could pick up a bag of cranberries from the produce section. That's right - I chomped on plain, raw cranberries. They really weren't as bad as I was expecting. And they did help. I had to eat them for the first couple of weeks, but this week I haven't needed them.

[oybolshoi]

Have been absent from the thread for a bit - didn't have much IC related stuff to discuss so I just concentrated on working on my food porn updates (a great way to re-live a WDW trip) and trying to get this very painful and annoying sciatica under control.

I must admit ... I have felt like I was falling apart physically during the last few weeks. :laughing: I had a few bad days where I really was feeling sorry for myself but my sense of humor and perspective came back before long. I'm sure the pain medication didn't hurt!

Anyway, I just wanted to thank you all for your posts, kind words, advice, admonitions, and good thoughts. :grouphug:


I had my follow up appointment with my urologist on Tuesday and we're both pleased with the progress I've made. Just with the single daily dose of amitryptaline I sleep through the night and have drastically reduced the number of times I visit the restroom per day. Nearly all the cramping and discomfort and downright pain are gone. :yay:

He wrote a prescription for Prosed for me to carry as a precautionary measure should I feel like a flare is rearing its ugly head. He also told me if I suspect a UTI to call his office and tell them - I can then show up at my convenience to leave a sample (during office hours) and there will be no charge for the test.

That's great!

So, all in all I'm feeling pretty darn good in the bladder department ... from a ridiculous high of more than 30 bathroom visits per day on a pre-medication day I've dropped back to a much more "normal" level of about 8-10 visits.

Now ... if I could just get my sciatic nerve to calm down I could dance a jig for Christmas and get back into my workout program to start dropping the pounds. :thumbsup2

[ICNAnnie2]

Brenda,

I am so happy for you :cheer2: To make that much progress in a short time is absolutely phenominal! What a relief, huh?!

I know it sounds incomprehensible to someone who hasn't experienced it, but voiding 30-60 times a day (as often happens to a person with IC - the protective lining of the bladder is damaged and the delicate bladder tissue sends constant signals to void, which cannot be ignored or delayed, because that unprotected tissue cannot tolerate coming in direct contact with any amount of waste) plus living with constant internal organ pain is nothing short of pure agony. The pain of IC, when chronic and severe, has been described as equal to that of end-stage cancer of an internal organ.

I know you understand this, Brenda, but I want to make sure others who read this don't misunderstand. Amitriptyline (aka Elavil) is NOT a pain medication. It is an older tricyclic antidressant which is sometimes used off-label in low doses (not high enough dose as is needed for use as an antidepressant) to help control chronic pain. We believe it works by helping to block pain signals from being sent from the pain source back to the brain or spinal cord.

The average starting dose of amitriptyline for IC patients is 25 mg per day. Sometimes ICers have to go to 50mg or a little more before they realize any benefit (still considered low dose). So your dose, Brenda, is extremely low. I know of very few who respond so dramatically to so little. We're all different in how we respond to meds and it sometimes pays to start as low as you can and see how you do. Obviously you did well with it. :yay: Amitriptyline is also often used to treat sciatica as it can help block the pain of that condition, too. Hopefully, it is contributing to your improvement in that area, too.

Considering the fact that you, other than avoiding cranberries, do not follow the IC diet that the vast majority of us find absolutely crucial (even with meds), are on a very low dose of Elavil, are not using any of the other meds or treatments commonly found useful for treating IC and are back to an almost normal (normal is around 7-8 voids in 24 hrs) voiding pattern, I can't help but wonder if you haven't gone into remission. That does happen. Sometimes people suddenly develop the symptoms of IC, suffer for a few weeks or months and then, just as suddenly, go into complete remission. No one know why it happens, but it is not uncommon, especially with the first IC flare. I'm not a doc and can't begin to diagnose diddly squat, but I can hope......and I am hoping and praying this is what is happening for you, Brenda!!! How WONDERFUL that would be!!! If it should turn out you are going into remission, I hope it lasts a very, VERY LOOOOOOOONG time!!!!!!!!!!!!!!!!! :jumping1:

I'm continuing to thoroughly enjoy your food porn! Hope you don't mind but, since my colitis and IC won't allow me to partake of many foods anymore, I am enjoying those culinary delights vicariously through you. Look out when the day comes that we find a cure for IC! They'll have to lock-up every bottle of wine, every morsel of chocolate, all coffee and tea, all tomatoes, all fruit, all cheese.........etc, etc, etc........to keep me out of it!!! I dream of that day! Well, until that day comes, I am counting on you, Brenda, and the other food addicts to help me see and enjoy all the delightful treats in the world.

Stay well!!! :flower3:

Annie

[MRussell]

Hi Brenda,
I'm a lurker and a fan of your reports. You always make me laugh and I enjoy reading your reports. I often think how you should be writing for a food magazine or something.

I am sorry you don't feel well. I noticed you have Endometriosis and I just wanted to write. I suffered with terrible pain before I saw my doctor who specialized in endometriosis. In 2000 I had laproscopic laser surgery to remove it and I have been pain free since. A year ago I had laproscopic surgery for a cyst and he said there was no trace of any endrometriosis. He was very proud of his work!:)

Also, my niece had 3 miscarriages and was told she had endrometriosis. I referred her to my doctor. 1 year ago November, she had laser surgery to remove it and now she is expecting a baby boy in 6 weeks.

Anyway.....I was just wondering if you had surgery for your endrometriosis and wondered if you still suffer with it.

Take care and prayers for your pain.

Martha

[The Orchid]

Ouch! IC sucks a lot. I've had it for years. The best thing you can do is follow the recommended diet. It really does help. Unfortunately, sometimes it feels that just about everything fun to eat is on the freaking list! :headache: I mean, do they really expect a woman to not each chocolate? :sad2:

I had a hydrodistension in December followed by six DMSO treatments. It was working really well for me actually. It eased the pain, but mostly, it helped me go to the bathroom FAR less. Then I found that I was feeling really tired (I have seveal autoimmune diseases and most of them can cause extreme fatigue) and I decided that a soda each morning might wake me up. Well, the caffeine did help, but drinking soda (high on the "bad food" list) made my bladder SCREAM! I've been in horrible pain for the last ten days and have finally given up the soda. Now I'm getting better but so darned tired. So.....obeying the "bad food" list helps. Not always easy, but it's good for you.

Sometimes when I have terrible bladder spasms, I find that valium helps. Also phenazopyridine helps it when there is a severe flare-up. I find DMSO to be effective. It stinks. No kidding, plan to smell like crap for several hours if you try that. You better have great self-esteem to deal with peoples reactions to being around you! :rotfl2: It's good stuff though.

[Tinker'n'Fun]

I just wanted to pop in and say that you are in my thoughts lately. (Actually you're the reason I am back here). I hope that you are doing better than in December. I enjoyed reading your dining report. I like you choose to suffer once in a while as a trade off for being normal....


PS. I like to live vicariously through you also, sorry it affects the IC though!

Diane

[j9psu]

So glad to have found you all! It's always nice to find friendly folks who know what you're going through:flower3: I've just started reading some of your posts, and I know we're all different, but I wonder if anyone has posted about specific IC-friendly snacks and meals at WDW. I'm a vegetarian, which complicates things further, but I'm always looking for food recommendations. IC has taken away a lot of food choices, but not my love of eating! :)