Ok, so I had every intention of writing this fabulous post about Cystoprotek (a supplement developed to treat IC) and the doctor from Tufts U. who has researched/written extensively about how inflammation in the body is linked to Fibro, IC, IBS, etc. However, to do the topic justice would have taken quite a bit of time, and with everything that's been keeping me busy, that task became quite daunting. So, I'm going to break it down a bit so that it's more manageable, meaning that I will delve into the topic over a few posts.
First though, an update: I saw my ob/gyn (Doc F) again on Thursday, feeling great because my IC had improved significantly since following the IC diet and taking the Cystoprotek. While I had good and bad days, I could reduce the number of flares I had by being consistent with my diet. He was quite impressed by the level of improvement I reported and was okay with my decision to not try Elmiron, a prescription med for IC; however, Doc F also had some disappointing news. He had done a little more research about Cystoprotek and the individual ingredients in the supplement. One of the ingredients it contains is quercetin, a bioflavonoid that has anti-inflammatory properties. While it's considered safe in recommended doses, it is not recommended for pregnant women because laboratory studies suggested it could cause chromosomal mutations in bacteria. While there isn't any evidence that happens in humans, it's prudent to avoid the supplement during pregnancy just in case. Doc F assured me that I could take it up until I find out I'm pregnant and then to stop it immediately. That's a little scary since a tremendous amount of cell division and growth occurs during those first days after conception. I went home pretty bummed, worried that the only supplement that seemed to be helping my condition could potentially (although the chances are slim) cause harm to my (future) pregnancy.
On the plus side, the soy lecithin that I'm taking for my brain fog (recommended by my rheumatologist) and Polycystic Ovarian Syndrome (PCOS) is perfectly safe, even during pregnancy. Info about supplements and PCOS will be in a future post, so to all my menstration-ly challenged sisters, be on the lookout for that post in the upcoming month. : ) As an aside, my doctor got a big chuckle when I mentioned I was taking the soy lecithin for brain fog. He smiled and said, "Claudia, out of all my patients, you are the last person I would ever think had brain fog. You are probably my most well-informed, intelligent patient. I even have trouble keeping up with you." I thought he was teasing me but he repeated his statement and added, "I meant that as a compliment. I mean it." I have to admit, getting that validation felt pretty great because I had feared that he just thought I was a big hypochondriac that spent too much time doing research on the Internet. Well, he probably still thinks that, but at least he values the effort I put into getting myself well again.
I guess I had spoken too soon when I told Doc F I felt much better because a couple of hours later I was in tears from IC pain. At first I attributed it to the disappointment I felt after my appointment, but a couple of days later I realized that the tortilla chips I had been eating were fried in sunflower seed oil. I had discovered earlier in the week that sunflower seeds trigger my IC. The day of my appointment, I had gone home and munched on a big bag of organic corn chips, but it was a brand I hadn't tried in the past and I hadn't looked at the ingredient list, except to make sure they were GFCF. Turns out they're fried in sunflower oil! As soon as I cut them out, my IC pain improved...well, that is until I went out to dinner the next night with a bunch of my school psychologist colleagues/friends. I was determined to prove to myself that with a few Prelief and my Cystoprotek that I could have a few IC forbidden foods and be ok. Well, I wasn't. I had tomatoes and vinegar on my salad and a glass of white wine with dinner- big mistake. That night and well into the next day, my IC pain reared its ugly head. Seems that my hour of pleasure would end up causing almost 24 hours of misery.
I know there are some people out there that may think that the improvements and setbacks I experience are due to the placebo effect. Maybe to some degree it's possible, but it doesn't mean that it's all in my head. Believe me, if it were, I'd will myself right this second to be able to eat a slice of pizza and a piece of chocolate layer cake without any pain or ill effects. Yummy!
Today I made the mistake of eating an organic hotdog with mustard. I don’t know if it was the dog, the mustard, or the combo that made me flare, but I’m paying for my food choices once again.
I’m pretty sick of feeling like a freak on this restricted diet. I know that it helps, but it’s not fun feeling as if every bit of food you put in your mouth could hurt you.
Let’s hope this doesn’t last for cento anni!
Showing posts with label Prelief. Show all posts
Showing posts with label Prelief. Show all posts
Monday, October 5, 2009
Thursday, September 10, 2009
GF/CF Doesn't Equal Calorie Free
Ok, I'm back. My IC and Fibro pain had become so unbearable that it left me little energy for blogging. The pain was a little better yesterday evening and this morning, but after I got frustrated/angry with an interpersonal issue I was dealing with this afternoon, I think I literally became "pissed off" and the IC pain returned. Bummer...
After doing more research on the affects of supplements and IC (supplements can often lead to "flares"), I realized what may have caused the BB to worsen my condition (if indeed it was the BB). The aloe in BB is preserved using citric acid. Not a big deal for most people, but for people with IC, it can exacerbate symptoms. I was also taking 800 mcg of folic acid twice a day at the advice of my rheumatologist, not knowing that folic acid can also trigger symptoms. Yesterday I didn't take my morning dose of folic acid; instead, I took only one capsule with two Prelief tabs and lots of water after dinner. It seemed to help. I might even switch to taking just 400 mcg once a day to be on the safe side. The only supplement I take close to bedtime is my calcium combo, as the calcium, magnesium, and Vit D in it are supposed to help calm the body and allow for improved sleep. Just don't take it right before bed with a big glass of water unless you like waking up to pee.
One other big trigger that I cut, especially because I shouldn't have been indulging in the first place, is chocolate- in the form of Trader Joe's scrumptious GF/CF brownies. What a find! I baked them twice in the past two weeks, once when a friend visited and the second time when I was going to my "girls' night in"; although, I didn't end up bringing the brownies because they are almost impossible to cut into nice, square pieces. They look more like blobs- gooey, moist, chocolatety blobs. I doctor them up with CF chocolate chips and pecans- delish! Sorry, I'm drooling as I write this. Every day, I would come home from work, eat a chunk, and then an hour later, I would have fire shooting through my UT. They also have quite a bit of sugar in them, another no-no with regards to my "diet." However, as far as brownies go (for those of you not sensitive to chocolate), I would highly recommend them. Even if you're not eating GF/CF, they are quite tasty and don't have any of the artificial additives you'll find in other brownie mixes. But sadly, no more for me for now.
Yes, I'm learning that even if products are GF/CF, they are not "freebies." I can't eat them with abandon because all those calories will eventually add up. Trader Joe's also sells ginger snap cookies that are GF. Those don't trigger flares for me and the ginger calms my stomach; still, cookies aren't exactly health food, so I've got to cut back. They are too tempting, especially when I'm starving and don't have any other quick and easy snack choices. I've put on a couple of the pounds that I lost, and it's likely because of all the empty calories I consumed in brownies and cookies. I'll have to save those treats for an occasional indulgence.
Belly troubles are back today. Not quite sure why except that maybe all the calcium in Prelief is slowing things down too much. I didn't even finish lunch because I felt so bloated.
One last comment: Did you know that the soy based "veggie slices" of cheese, sold as a substitute for American cheese, have casein in them? Yes, they do, and I was just as shocked as you are. LOL. Seriously though, I ate a slice yesterday morning on my oat bread toast and felt "bubbly" a couple of hours later. When I got home and checked the ingredients, I saw the dreaded words, "milk protein." They are lactose-free but not dairy free. WOA: Read the ingredients list carefully if you want to get results. Little slip ups here and there will have an impact, even if you don't want to believe it. Do your homework. Your bowels will thank you for it. : )
After doing more research on the affects of supplements and IC (supplements can often lead to "flares"), I realized what may have caused the BB to worsen my condition (if indeed it was the BB). The aloe in BB is preserved using citric acid. Not a big deal for most people, but for people with IC, it can exacerbate symptoms. I was also taking 800 mcg of folic acid twice a day at the advice of my rheumatologist, not knowing that folic acid can also trigger symptoms. Yesterday I didn't take my morning dose of folic acid; instead, I took only one capsule with two Prelief tabs and lots of water after dinner. It seemed to help. I might even switch to taking just 400 mcg once a day to be on the safe side. The only supplement I take close to bedtime is my calcium combo, as the calcium, magnesium, and Vit D in it are supposed to help calm the body and allow for improved sleep. Just don't take it right before bed with a big glass of water unless you like waking up to pee.
One other big trigger that I cut, especially because I shouldn't have been indulging in the first place, is chocolate- in the form of Trader Joe's scrumptious GF/CF brownies. What a find! I baked them twice in the past two weeks, once when a friend visited and the second time when I was going to my "girls' night in"; although, I didn't end up bringing the brownies because they are almost impossible to cut into nice, square pieces. They look more like blobs- gooey, moist, chocolatety blobs. I doctor them up with CF chocolate chips and pecans- delish! Sorry, I'm drooling as I write this. Every day, I would come home from work, eat a chunk, and then an hour later, I would have fire shooting through my UT. They also have quite a bit of sugar in them, another no-no with regards to my "diet." However, as far as brownies go (for those of you not sensitive to chocolate), I would highly recommend them. Even if you're not eating GF/CF, they are quite tasty and don't have any of the artificial additives you'll find in other brownie mixes. But sadly, no more for me for now.
Yes, I'm learning that even if products are GF/CF, they are not "freebies." I can't eat them with abandon because all those calories will eventually add up. Trader Joe's also sells ginger snap cookies that are GF. Those don't trigger flares for me and the ginger calms my stomach; still, cookies aren't exactly health food, so I've got to cut back. They are too tempting, especially when I'm starving and don't have any other quick and easy snack choices. I've put on a couple of the pounds that I lost, and it's likely because of all the empty calories I consumed in brownies and cookies. I'll have to save those treats for an occasional indulgence.
Belly troubles are back today. Not quite sure why except that maybe all the calcium in Prelief is slowing things down too much. I didn't even finish lunch because I felt so bloated.
One last comment: Did you know that the soy based "veggie slices" of cheese, sold as a substitute for American cheese, have casein in them? Yes, they do, and I was just as shocked as you are. LOL. Seriously though, I ate a slice yesterday morning on my oat bread toast and felt "bubbly" a couple of hours later. When I got home and checked the ingredients, I saw the dreaded words, "milk protein." They are lactose-free but not dairy free. WOA: Read the ingredients list carefully if you want to get results. Little slip ups here and there will have an impact, even if you don't want to believe it. Do your homework. Your bowels will thank you for it. : )
Monday, September 7, 2009
Hanging In There
Well, since my last post, I've had good and bad days regarding the IC. I'm still eating GF/CF, although I've stopped the Body Balance. Since supplements can sometimes contribute to IC pain, my doctor thought it would be best if I stopped taking the BB to see if that helps to calm things down. I should say that lots of people have had great results with BB, but I've made so many dietary, drug, and supplement changes in the past month that it's hard to tweeze out what's been helping and what hasn't. I'm still taking the Fisol Omega-3 supplement, New Chapter Take Care Bone Strength calcium/magnesium/Vit K/Vit D supplement, Folic Acid, and Culterelle (probiotics). I also take Prelief prior to eating, although I've had mixed results. I can't tell if that's been helpful or not for my IC, but it really helps my acid reflux. Licorice I take on and off. Yesterday I had a good day with regards to my IC pain, but last night I made the mistake of having a glass of Chardonnay and a martini when I was at my friend's house. I took the Prelief and felt fine last night, but this morning my IC pain was a 7 out of 10. I may have also been slightly dehydrated, which doesn't help. I added a fiber supplement (Metamucil Clear and Natural) two nights ago because I think my fiber intake isn't as high as it used to be when I ate lots of wheat-based, whole grain foods. I'm only using it once a day though because twice a day starts to make me bloated. It seems to help.
WOA: It's really important to up one's water intake, especially when taking supplemental fiber. Drinking lots of clean, pure water is important to IC as well as diluted urine typically doesn't cause as much pain.
I would like to add a multi-vitamin back into the mix, especially because I don't think I'm eating a very balanced diet. I'm trying, but with all the foods that are forbidden now, I'm not getting a lot of variety. One of my best friends from back home is a registered dietician and has sent me some great links to companies that offer GF/CF foods. See email below:
Hi Claudia:
These are some companies that offer high-quality, nutritious foods that meet a variety of specific needs: This information can also be found at www.foodallergysurvivalguide.com - click the link under resources. This list is continually changing…. I noted some of their links are currently not working off their website and was not able to find exactly this list that is found in their book: Food Allergy Survival Guide
Hopefully this information is helpful for you – have fun browsing around ..
Alpsnack. Gluten-, wheat-, egg-, and dairy-free organic snack bar made with hemp nuts, almonds, dried fruits, and other natural ingredients. Phone: 760-743-2211. Web: http://www.alpsnack.com/
Aunt Candice Foods. Cookies, brownies, and mixes free of wheat, dairy, gluten, casein, corn, soy and additives. Web: http://www.auntcandicefoods.com/
Authentic Foods. Dedicated to glueten-free products, from milling to blending, to packaging. Baking mixes, flours, pasta, snacks, cereals. Phone: 310-366-7612. Web: http://www.authenticfoods.com/
Berket Millls. Buckwheat products. Web: http://www.thebirkettmills.com/
Bob’s Red Mill. Hypoallergenic baking products, flours, mixes, cereals, entrees, grains, beans, dried fruits, seeds, and spices. Many gluten-free poducts. Phone: 800-349-2173. Web: http://www.bobsredmill.com/
Dietary Specialties. Gluten-free frozen foods, baking mixes, breads, pastas, snacks, and sweets. Phone: 888-640-2800. Web: http://www.dietspec.com/
Eden Foods. Grains, 100 percent buckwheat noodles, beans, seasonings. Phone: 888-441-EDEN. Web: http://www.edenfoods.com/
Edward & Sons. Organic grocery items such as miso soup, rice snaps, sauces, and candies, many of which are free of gluten and other common allergens. Phone: 805-684-8500. Web: http://www.edwardandsons.com/
El Peto. Manufacturer and distributor of a huge line of gluten-, wheat-, yeast-, corn-, milk-, and egg-free products. Phone: 800-387-4064. Web: http://www.elpeto.com/
Ener-G Foods. Egg and milk substitutes, flours, baked goods, mixes, pasta, cereals, soups, gluten-free items. Phone: 800-331-5222. Web: http://www.ener-g.com/
Enjoy Life Foods. Baked goods, snack bars, and cereals free of gluten, wheat, dairy casein, eggs, soy, nuts, potoato, GMOs and hydrogentaed oil prepared in a gluten-free and peanut-free facility. Phone: 888-550-ENJOY. Web: http://www.enjoylifefoods.com/
Gluten Free Mixes. Baking and seasoning mixes, flours, and even cake decorating kits, all gluten free. Phone 866-225-3432. Web: http://www.glutenfreemixes.com/
Gold Mine Natural Food Company. Hard-to-find gluten-free grains, snacks, condiments, dried fruits and more, most of which are organic. Phone: 1-800-475-FOOD.
Web: http://www.goldminenaturalfood.com/
Grainworks. Quinoa and other organic grains. Phone: 800-563-3756. Web: http://www.grainworks.com/
Kinnikinnick Foods. (Canada) Gluten-, wheat-, and casein-free breads (some are yeast free), mixes, snacks, baking mixes, desserts, and more. Phone: 877-503-4466. Web: http://www.kinnikinnick.om/
Manitoba Harvest Hemp Food and Oils. (Canada) Organic and GMO-free sources of omega-3 fatty acids. Phone: 800-665-HEMP. Web: http://www.manitobaharvest.com/
Mail Order Catalog for Healthy Eating. Dairy substitutes, nutritional yeast, gluten-free grains and pastas, soynut butters. Phone: 800-695-2241. Web: http://www.healthy-eating.com/
Mrs. Leeperes. Rice and corn pasta. Phone: 816-502-6000. Web: http://www.mrsleeperspasta.com/
Natures Highlights. Gluten free, dedicated facitility producing wheat-, gluten-, and yeast-free, pizza crusts, fozen entrees, and snacks. Phone: 800-313-6454. Web: http://www.natures-highlights.com/
Natures Path Foods. Organic cereals, including gluten-free products. Phone: 888-808-9505. Web: http://www.naturespath.com/
Nu-World Amaranth. Amaranth-based snacks free of dairy, eggs, wheat, rice, corn, oats, soy, potato, and nuts. Phone: 630-369-6819. Web: www.nuworldfoods.com
Omega Nutrition. Organic flaxseed oil and related products. Phone: 800-661-FLAX (3529). Web: http://www.omeganutrition.com/
Pangea. Foods, sancks, mixes and sweets that are free of eggs and diary products. Phone: 800-340-1200. Web: http://www.pangeaveg.com/
Pamela’s. Wheat-free baked goods and baking mixes, many of which are also free of gluten, eggs, nuts, and soy. Phone: 707-462-6605. Web: http://www.pamelaproducts.com/
Tinkyada. (Canada) Amazing wheat-free, gluten-free rice pasta in a wide variety of shapes and sizes. Phone: 416-609-0016. Web: http://www.tinkyada.com/
The Soynut Butter Company. Peanut-free soynut butter produced in a 100 percent peanut- and treent-free facility. Also gluten-free toriilla crumbs and cornflake crumbs. Phone: 800-288-1012. Web: www.soynutbutter.com
Vegan Essentials. Better than Milk fortified rice beverage and a varity of egg- and dairy-free foods. Phone: 866-88-VEGAN. Web: http://www.veganessentials.com/
Vermont Nut-Free Chocolates. Chocolate confections, absolutely free of nuts. The dark chocolate has no dairy ingredients, although it is produced on the same equipment as the milk chocolate. Phone: 888-468-8373. Web: http://www.vermontnutfree.com/
WholeSoy. Drinks and cultured soy yogurt with probiotics (live active cultures). Phone: 415-495-2870. Web: http://www.wholesoycom.com/
___________________
Thanks, Sheila, for this great info!
No funny stories for today's post. I'm too beat and a little discouraged right now. I'm hoping to muster up some energy for my next post. What I do want to say is that I think is critically important, especially when dealing with chronic health issues (or even when one is healthy), to cherish those moments when one is feeling good, healthly, and/or happy. Last night, after spending an enjoyable night hanging out with my girlfriends, I came home and admired a couple of home improvements projects my husband and I had just completed earlier in the day. I savored the satisfaction I felt and was also grateful for the pain-free evening I had experienced. In that moment, life was good. It's easy to forget those moments during the bad times and to think that one's doomed to a lifetime of pain and suffering. It's crucial to carve out time for rest and relaxation. Creating a space in ones home that is free of clutter and distractions, while being visually appealing, can also aid in bolstering one's spirits. There is always hope. On days like today when I'm feeling tortured by my body, it's hard to remember that things can and will get better... but they will. Happy Labor Day.
WOA: It's really important to up one's water intake, especially when taking supplemental fiber. Drinking lots of clean, pure water is important to IC as well as diluted urine typically doesn't cause as much pain.
I would like to add a multi-vitamin back into the mix, especially because I don't think I'm eating a very balanced diet. I'm trying, but with all the foods that are forbidden now, I'm not getting a lot of variety. One of my best friends from back home is a registered dietician and has sent me some great links to companies that offer GF/CF foods. See email below:
Hi Claudia:
These are some companies that offer high-quality, nutritious foods that meet a variety of specific needs: This information can also be found at www.foodallergysurvivalguide.com - click the link under resources. This list is continually changing…. I noted some of their links are currently not working off their website and was not able to find exactly this list that is found in their book: Food Allergy Survival Guide
Hopefully this information is helpful for you – have fun browsing around ..
Alpsnack. Gluten-, wheat-, egg-, and dairy-free organic snack bar made with hemp nuts, almonds, dried fruits, and other natural ingredients. Phone: 760-743-2211. Web: http://www.alpsnack.com/
Aunt Candice Foods. Cookies, brownies, and mixes free of wheat, dairy, gluten, casein, corn, soy and additives. Web: http://www.auntcandicefoods.com/
Authentic Foods. Dedicated to glueten-free products, from milling to blending, to packaging. Baking mixes, flours, pasta, snacks, cereals. Phone: 310-366-7612. Web: http://www.authenticfoods.com/
Berket Millls. Buckwheat products. Web: http://www.thebirkettmills.com/
Bob’s Red Mill. Hypoallergenic baking products, flours, mixes, cereals, entrees, grains, beans, dried fruits, seeds, and spices. Many gluten-free poducts. Phone: 800-349-2173. Web: http://www.bobsredmill.com/
Dietary Specialties. Gluten-free frozen foods, baking mixes, breads, pastas, snacks, and sweets. Phone: 888-640-2800. Web: http://www.dietspec.com/
Eden Foods. Grains, 100 percent buckwheat noodles, beans, seasonings. Phone: 888-441-EDEN. Web: http://www.edenfoods.com/
Edward & Sons. Organic grocery items such as miso soup, rice snaps, sauces, and candies, many of which are free of gluten and other common allergens. Phone: 805-684-8500. Web: http://www.edwardandsons.com/
El Peto. Manufacturer and distributor of a huge line of gluten-, wheat-, yeast-, corn-, milk-, and egg-free products. Phone: 800-387-4064. Web: http://www.elpeto.com/
Ener-G Foods. Egg and milk substitutes, flours, baked goods, mixes, pasta, cereals, soups, gluten-free items. Phone: 800-331-5222. Web: http://www.ener-g.com/
Enjoy Life Foods. Baked goods, snack bars, and cereals free of gluten, wheat, dairy casein, eggs, soy, nuts, potoato, GMOs and hydrogentaed oil prepared in a gluten-free and peanut-free facility. Phone: 888-550-ENJOY. Web: http://www.enjoylifefoods.com/
Gluten Free Mixes. Baking and seasoning mixes, flours, and even cake decorating kits, all gluten free. Phone 866-225-3432. Web: http://www.glutenfreemixes.com/
Gold Mine Natural Food Company. Hard-to-find gluten-free grains, snacks, condiments, dried fruits and more, most of which are organic. Phone: 1-800-475-FOOD.
Web: http://www.goldminenaturalfood.com/
Grainworks. Quinoa and other organic grains. Phone: 800-563-3756. Web: http://www.grainworks.com/
Kinnikinnick Foods. (Canada) Gluten-, wheat-, and casein-free breads (some are yeast free), mixes, snacks, baking mixes, desserts, and more. Phone: 877-503-4466. Web: http://www.kinnikinnick.om/
Manitoba Harvest Hemp Food and Oils. (Canada) Organic and GMO-free sources of omega-3 fatty acids. Phone: 800-665-HEMP. Web: http://www.manitobaharvest.com/
Mail Order Catalog for Healthy Eating. Dairy substitutes, nutritional yeast, gluten-free grains and pastas, soynut butters. Phone: 800-695-2241. Web: http://www.healthy-eating.com/
Mrs. Leeperes. Rice and corn pasta. Phone: 816-502-6000. Web: http://www.mrsleeperspasta.com/
Natures Highlights. Gluten free, dedicated facitility producing wheat-, gluten-, and yeast-free, pizza crusts, fozen entrees, and snacks. Phone: 800-313-6454. Web: http://www.natures-highlights.com/
Natures Path Foods. Organic cereals, including gluten-free products. Phone: 888-808-9505. Web: http://www.naturespath.com/
Nu-World Amaranth. Amaranth-based snacks free of dairy, eggs, wheat, rice, corn, oats, soy, potato, and nuts. Phone: 630-369-6819. Web: www.nuworldfoods.com
Omega Nutrition. Organic flaxseed oil and related products. Phone: 800-661-FLAX (3529). Web: http://www.omeganutrition.com/
Pangea. Foods, sancks, mixes and sweets that are free of eggs and diary products. Phone: 800-340-1200. Web: http://www.pangeaveg.com/
Pamela’s. Wheat-free baked goods and baking mixes, many of which are also free of gluten, eggs, nuts, and soy. Phone: 707-462-6605. Web: http://www.pamelaproducts.com/
Tinkyada. (Canada) Amazing wheat-free, gluten-free rice pasta in a wide variety of shapes and sizes. Phone: 416-609-0016. Web: http://www.tinkyada.com/
The Soynut Butter Company. Peanut-free soynut butter produced in a 100 percent peanut- and treent-free facility. Also gluten-free toriilla crumbs and cornflake crumbs. Phone: 800-288-1012. Web: www.soynutbutter.com
Vegan Essentials. Better than Milk fortified rice beverage and a varity of egg- and dairy-free foods. Phone: 866-88-VEGAN. Web: http://www.veganessentials.com/
Vermont Nut-Free Chocolates. Chocolate confections, absolutely free of nuts. The dark chocolate has no dairy ingredients, although it is produced on the same equipment as the milk chocolate. Phone: 888-468-8373. Web: http://www.vermontnutfree.com/
WholeSoy. Drinks and cultured soy yogurt with probiotics (live active cultures). Phone: 415-495-2870. Web: http://www.wholesoycom.com/
___________________
Thanks, Sheila, for this great info!
No funny stories for today's post. I'm too beat and a little discouraged right now. I'm hoping to muster up some energy for my next post. What I do want to say is that I think is critically important, especially when dealing with chronic health issues (or even when one is healthy), to cherish those moments when one is feeling good, healthly, and/or happy. Last night, after spending an enjoyable night hanging out with my girlfriends, I came home and admired a couple of home improvements projects my husband and I had just completed earlier in the day. I savored the satisfaction I felt and was also grateful for the pain-free evening I had experienced. In that moment, life was good. It's easy to forget those moments during the bad times and to think that one's doomed to a lifetime of pain and suffering. It's crucial to carve out time for rest and relaxation. Creating a space in ones home that is free of clutter and distractions, while being visually appealing, can also aid in bolstering one's spirits. There is always hope. On days like today when I'm feeling tortured by my body, it's hard to remember that things can and will get better... but they will. Happy Labor Day.
Friday, September 4, 2009
Prelief...a relief?
Well, it seems that I just keep putting out fires and haven't really been able to enjoy the fact that my IBS symptoms have improved. Also, my husband continues to remind me that thus far, I have not entered any real data into my posts (although I have been keeping notes in my day planner). I will begin including data at some point; however, now is not the time. There are much more pressing (and burning) issues to address.
Ok, so if things haven't gotten personal enough talking about my tummy troubles, I'm taking it to a whole new level. This is also where the focus of my blog takes a turn and starts really delving into fibromyalgia (and all the fun symptoms that come with it). Last week, I felt as if I had a horrible UTI. The pain was excruciating. I went to the ob/gyn and saw the only doctor available, a kind, older doctor who resembled the assistant coach from the 90's sitcom "Coach," but less bumbling. Doc said that it wasn't a UTI but an overgrowth of bacteria in another area of my anatomy close in proximity, likely caused by something trivial, like the summer heat or a change in bath soap. He wrote me a script for an antibiotic and assured me it would take care of my problem. I asked if it could be cystitis but he dismissed my concerns and sent me on my way. After one day on the oral antibiotic, my GERD was back, lump in my throat and all. Two phone calls to the ob/gyn later, I was switched to another medication that wasn't oral. Let's just leave it at that.
A week later (this past Tuesday), the pain was still there. It felt like my bladder was filled with a corrosive acid that was slowly burning through my plumbing. I made a follow up appointment. My doctor was again unavailable, so I saw yet another male doctor in the same practice. This guy looked like the runner up from the most recent season of "The Next Food Network Star." I think his name was Jeffery- the chef, not the doctor. Anyway, after waiting twenty minutes in the reception area and another fifteen minutes in waiting room number two, I was finally led into the examination room and asked to change. The nurse took my blood pressure and told me the doctor would be in to see me shortly. Twenty-five minutes later, I was still in a state of undress, waiting for the doctor. I peeked my head out the door, sheet draped around my waist, but there was no one in sight. Already late for an appointment with the HVAC guy (who was coming to fix the A/C back at my house), I grew increasingly impatient and decided I would use my cell phone to call the front desk. The shocked receptionist quickly paged the doctor, who casually strolled in a couple of minutes later. After a brief examination, he determined that my problem was not a bacterial infection. His diagnosis was Interstitial Cystitis. Hello?! Wasn't that what I told the last doc? Ok, so I had left out the first word that I couldn't pronounce, but he should have known what I was getting at. However, this wasn't the diagnosis I wanted to hear, since IC can be extremely painful and difficult to treat. My heart sank. Doc Next Food Network Star told me that IC often is associated with Fibro and Endometriosis (I have both). The birth control that I was taking previously likely halted the progression of my endometriosis, which in turn kept the IC at bay (his theory). Now that I was off the Pill, I didn't have the same protection. Stopping the acid blocker didn't help either, since acidic urine burns more. There is a medication that can be prescribed for the pain, but the doctor said it usually takes about six months to see improvement and it only helps about 30% of those who take it. Nice odds. The other two things he has seen help IC are hysterectomy (for those who have endometriosis) and pregnancy. Ok, pregnancy was a treatment option I could get behind.
The next day the pain was better and I was hopeful that these symptoms would soon pass; however, yesterday it was back. The pain was so bad I wanted to cut my bladder out, so I called the ob/gyn again. I'm still not sure where my doctor is because the nurse consulted with Doc NFNS instead of my guy. The nurse told me that I could take Tylenol for the pain and she recommended a supplement called "Prelief" that one of her family members with IC takes. It is a food grade mineral chemically known as calcium glycerophosphate that reduces the amount of acid in foods. Since acidic foods can trigger IC symptoms, many women with IC get significant relief when taking the supplement. I bought it last night and took it this morning. I still have symptoms, so I'm not sure if I took an inadequate dose or if it takes several doses before one sees relief. The testimonials are fantastic http://www.ic-network.com/handbook/prelieftestimonials.html so I'm really hoping that it will work. It's also supposed to help with IBS. Does anyone out there know how long it takes before one starts to feel relief?
This is my question. There are all these doctors who specialize in just part of the human anatomy; as a result, they treat diseases related to their "part" as if the part is not connected to the rest of the body. Do they not get that a lot of these separate diseases/syndromes (IBS, IC, Fibro, etc.) seem to occur together and may be caused by the same thing? Why are doctors just treating part of the patient and not working together with other specialists and the PCP as a team to treat underlying causes of disease? The more research I read, the more I am convinced that Dr. Hyman is on to something. Inflammation seems to do a lot of damage to the body. Why aren't more doctors looking at what contributes to inflammation in their patients instead of just passing out drugs like candy? Only treating symptoms is like putting a band-aid on a gunshot wound. Sorry, I use a lot of clichés. Yeah, I want my pain to go away, but more importantly, I want to eliminate the cause of my pain. I'm not anti conventional medicine but there are alternatives to drugs. Let's open our eyes and see the kind of damage we're doing to ourselves with all the chemicals we're surrounded by, the pollutants we're breathing, the processed food we ingest, the chemically laced water we drink, our hectic lifestyles, lack of sleep, etc. etc. We're a mess. No wonder so many people are sick. There needs to be a paradigm shift, and it needs to happen immediately.
Ok, I'm going to get off my soap box for now. Just wait until my diatribe about bad parenting. Yeah, as a school psychologist and former counselor at a group home for pregnant and parenting teens, I've got enough fodder to last through at least 100 posts. LOL.
Ok, so if things haven't gotten personal enough talking about my tummy troubles, I'm taking it to a whole new level. This is also where the focus of my blog takes a turn and starts really delving into fibromyalgia (and all the fun symptoms that come with it). Last week, I felt as if I had a horrible UTI. The pain was excruciating. I went to the ob/gyn and saw the only doctor available, a kind, older doctor who resembled the assistant coach from the 90's sitcom "Coach," but less bumbling. Doc said that it wasn't a UTI but an overgrowth of bacteria in another area of my anatomy close in proximity, likely caused by something trivial, like the summer heat or a change in bath soap. He wrote me a script for an antibiotic and assured me it would take care of my problem. I asked if it could be cystitis but he dismissed my concerns and sent me on my way. After one day on the oral antibiotic, my GERD was back, lump in my throat and all. Two phone calls to the ob/gyn later, I was switched to another medication that wasn't oral. Let's just leave it at that.
A week later (this past Tuesday), the pain was still there. It felt like my bladder was filled with a corrosive acid that was slowly burning through my plumbing. I made a follow up appointment. My doctor was again unavailable, so I saw yet another male doctor in the same practice. This guy looked like the runner up from the most recent season of "The Next Food Network Star." I think his name was Jeffery- the chef, not the doctor. Anyway, after waiting twenty minutes in the reception area and another fifteen minutes in waiting room number two, I was finally led into the examination room and asked to change. The nurse took my blood pressure and told me the doctor would be in to see me shortly. Twenty-five minutes later, I was still in a state of undress, waiting for the doctor. I peeked my head out the door, sheet draped around my waist, but there was no one in sight. Already late for an appointment with the HVAC guy (who was coming to fix the A/C back at my house), I grew increasingly impatient and decided I would use my cell phone to call the front desk. The shocked receptionist quickly paged the doctor, who casually strolled in a couple of minutes later. After a brief examination, he determined that my problem was not a bacterial infection. His diagnosis was Interstitial Cystitis. Hello?! Wasn't that what I told the last doc? Ok, so I had left out the first word that I couldn't pronounce, but he should have known what I was getting at. However, this wasn't the diagnosis I wanted to hear, since IC can be extremely painful and difficult to treat. My heart sank. Doc Next Food Network Star told me that IC often is associated with Fibro and Endometriosis (I have both). The birth control that I was taking previously likely halted the progression of my endometriosis, which in turn kept the IC at bay (his theory). Now that I was off the Pill, I didn't have the same protection. Stopping the acid blocker didn't help either, since acidic urine burns more. There is a medication that can be prescribed for the pain, but the doctor said it usually takes about six months to see improvement and it only helps about 30% of those who take it. Nice odds. The other two things he has seen help IC are hysterectomy (for those who have endometriosis) and pregnancy. Ok, pregnancy was a treatment option I could get behind.
The next day the pain was better and I was hopeful that these symptoms would soon pass; however, yesterday it was back. The pain was so bad I wanted to cut my bladder out, so I called the ob/gyn again. I'm still not sure where my doctor is because the nurse consulted with Doc NFNS instead of my guy. The nurse told me that I could take Tylenol for the pain and she recommended a supplement called "Prelief" that one of her family members with IC takes. It is a food grade mineral chemically known as calcium glycerophosphate that reduces the amount of acid in foods. Since acidic foods can trigger IC symptoms, many women with IC get significant relief when taking the supplement. I bought it last night and took it this morning. I still have symptoms, so I'm not sure if I took an inadequate dose or if it takes several doses before one sees relief. The testimonials are fantastic http://www.ic-network.com/handbook/prelieftestimonials.html so I'm really hoping that it will work. It's also supposed to help with IBS. Does anyone out there know how long it takes before one starts to feel relief?
This is my question. There are all these doctors who specialize in just part of the human anatomy; as a result, they treat diseases related to their "part" as if the part is not connected to the rest of the body. Do they not get that a lot of these separate diseases/syndromes (IBS, IC, Fibro, etc.) seem to occur together and may be caused by the same thing? Why are doctors just treating part of the patient and not working together with other specialists and the PCP as a team to treat underlying causes of disease? The more research I read, the more I am convinced that Dr. Hyman is on to something. Inflammation seems to do a lot of damage to the body. Why aren't more doctors looking at what contributes to inflammation in their patients instead of just passing out drugs like candy? Only treating symptoms is like putting a band-aid on a gunshot wound. Sorry, I use a lot of clichés. Yeah, I want my pain to go away, but more importantly, I want to eliminate the cause of my pain. I'm not anti conventional medicine but there are alternatives to drugs. Let's open our eyes and see the kind of damage we're doing to ourselves with all the chemicals we're surrounded by, the pollutants we're breathing, the processed food we ingest, the chemically laced water we drink, our hectic lifestyles, lack of sleep, etc. etc. We're a mess. No wonder so many people are sick. There needs to be a paradigm shift, and it needs to happen immediately.
Ok, I'm going to get off my soap box for now. Just wait until my diatribe about bad parenting. Yeah, as a school psychologist and former counselor at a group home for pregnant and parenting teens, I've got enough fodder to last through at least 100 posts. LOL.
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