Interstitial Cystitis?

[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.

 

[Tink rules]

Awwwww.. Bendy....

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

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. I haven't had any canned tomatoes since.

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. 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.


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.

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.

 

[ICNAnnie2]

Brenda,

I am so happy for you 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. 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!!!!!!!!!!!!!!!!!

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!!!

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! I mean, do they really expect a woman to not each chocolate?

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! 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 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!