Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I had a bone density scan done the other day, and the results just came back. I have osteoporosis. Boy was that a blow to find out. I was super bummed, and still am, that I haven't been able to control this with diet, but now I'm okay with having to be on meds for a while. I just hope they work! I guess that's the part that scares me the most. Taking meds is one thing, if you need them and they work, but it seems like the meds for UC don't always work very well, and only for a limited amount of time. At least I won't be on them forever. For now, we're starting out with Rowasa enemas, which will hopefully take away some of the inflammation so I can actually start absorbing my food, which apparently wasn't/isn't happening. Luckily, so far, I get to stay on SCD. I have a feeling I definitely won't be allowed to do it 'right,' by starting at intro and slowly adding in foods, but at least I'll be able to stay legal. (Other than the chinese herbs I have to take now, which have corn starch in them, even though the doc SAID there was nothing added. Apparently corn starch = nothing. Grrrr. Sorry for the long parentheses rant.) Anyways, that's sort of what's going on with me. Still flaring, and pretty bummed about having osteoporosis, but hanging in there =) Peace =) Alyssa 15 yo UC April 2008, dx Sept 2008 SCD June 2009 (restarted) Rowasa enema 1x daily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 A friend of mine who has Crohns (I know you have UC) developed osteroperosis about a year after being diagnosed. A doctor told him it was because of the disease. Then another told him it had nothing to do with it. However, once he got on the right meds,(which took a while to figure out what worked for him) they took care of the crohns AND the osteoperosis... killed 2 birds with one stone. I have a feeling it will be the same with you It's hard going through regimen after egimen of different meds till you find what works, but you're EXTREMELY resilient especially for your age. I'm constantly impressed. When I get down about something that's going on I turn to the people that make me feel better. It might be this board, maybe parents, friends, boyfriend.. whatever. Think of it as every failure brings you closer to success. Just don't give up. How did you feel just a month ago? better or worse? I bet there was a time not very long ago you felt much better about things. When things are going great time flies, but when things are just bad time seems to stand still. I bet in a couple months you'll be posting about how great you feel Hope you feel better!!-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayTo: BTVC-SCD From: luckycharms@...Date: Sat, 2 Jan 2010 14:46:33 -0500Subject: I need encouragement =( I had a bone density scan done the other day, and the results just came back. I have osteoporosis. Boy was that a blow to find out. I was super bummed, and still am, that I haven't been able to control this with diet, but now I'm okay with having to be on meds for a while. I just hope they work! I guess that's the part that scares me the most. Taking meds is one thing, if you need them and they work, but it seems like the meds for UC don't always work very well, and only for a limited amount of time. At least I won't be on them forever. For now, we're starting out with Rowasa enemas, which will hopefully take away some of the inflammation so I can actually start absorbing my food, which apparently wasn't/isn't happening. Luckily, so far, I get to stay on SCD. I have a feeling I definitely won't be allowed to do it 'right,' by starting at intro and slowly adding in foods, but at least I'll be able to stay legal. (Other than the chinese herbs I have to take now, which have corn starch in them, even though the doc SAID there was nothing added. Apparently corn starch = nothing. Grrrr. Sorry for the long parentheses rant.) Anyways, that's sort of what's going on with me. Still flaring, and pretty bummed about having osteoporosis, but hanging in there =) Peace =) Alyssa 15 yo UC April 2008, dx Sept 2008 SCD June 2009 (restarted) Rowasa enema 1x daily Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I had a bone density scan done the other day, and the results just came back. I have osteoporosis. Boy was that a blow to find out.Hi Alyssa,Hang in there! I found a few e-mails from Elaine that address bone density. Will look for others.Question:Just back from getting a bone scan, which shows (no surprise) some bone loss in my spine and a borderline condition in my hips. I am arecently-diagnosed celiac who spent several years trying to find out what was wrong with me. I have been on a gluten-free diet for one month and switched to SCD in the past two weeks because I just felt it was "right" for me. I have been doing very well on the SCD; I am beginning to feel and look better after only a couple weeks on this diet. I have been living almost exclusively for the past week on a beef/carrot puree stew (think I'm allergic to chicken, so no chicken soup, but I've substituted beef which is working well). Interestingly, the yogurt is a problem now, but last night I ate 4-year old aged Canadian cheddar, and it went well! Also, the almond flour from Lucy's which caused a problem only a week ago seems to be OK now!My doctor said that eating anchovies is a very good source of calcium. As my dairy is still limited and I cannot digest even cooked gre ens very well at the moment, I would like to eat anchovies. I bought a bottle which lists "flat fillets of anchovies in pure olive oil,"and another one which says the same thing, except for salt. Can I get an "OK" to eat them? I have looked in BTVC, but see no listing for anchovies. I've been making such progress, I don't want to blow it! Elaine writes:Go to it! - Eat the anchovies and enjoy. Your bone scan will improve in about 2-3 months.Elaine writes:I am so worried about people taking only calcium. In Tuscon, you get plenty ultra violet light providing you get away from the computer 2 hours per day. You know that you need Vitamin D in order to absorb calcium and build bones and since we do not drink scads of Vitamin D supplemented milk, we should consider this. But I do not think all of this hype about stuffing oneself with calcium is the answer. It is like putting bricks on rotten two by fours.Elaine adds:I cannot tell you what drugs to take or not to take but if it is any consolation, I have had many celiacs who had very low bone density, went on the SCD and lo and behold their bone density increased little by little.Elaine writes:Yes indeedy - the only change is that the lactose is gone and the pro tein is more digestible and less allergenic.__________________________________Question: Interesting... what does the culturing process do to the protein?Elaine writes:I just love this kind of question, As the protein is exposed to increasing formation of lactic acid, it loses most of its three dimensional structure and becomes "neutralized". That would be of importance in the way the immune system recognizes it. We were taught in immunology that the gelatine molecule (collagen) is the least antigenic of all proteins because it has only a 2-dimensional structure and not a 3-dimensional structure. The changing of the alkilinity and acidity changes the structural shape of protein from 3 dimensional to 2 dimensional which the immune system does not recognize as readily as being antigenicElaine Writes:We are continually discussing the treatment of bone loss. We don't allnecessarily want to run to the drugstore for another drug and that is why weare saying, let's get the gut healed. With the gut healed, we can thenabsorb nutrients including vitamins and minerals. We have also said thatbone is not only minerals; it has an organic matrix (minerals are part ofthe inorganic part) which requires Vitamin C and the B vitamins.So, with a good nutritious diet healing the gut and absorbing all theminerals and vitamins in our food and taking a moderate supplement as mybook suggests, we have had many, many woman and men regain bone density.We want to try this road before adding another bottle to the medicine chest.Take care,Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Alyssa, I am so sorry! The osteoporosis is reversible once you are healthier and absorbing your foods. Eat the calcium rich foods that you can and get 15 minutes of sunshine a day (to make vitamin D). As far as inflammation goes, have you ever researched bromelain? You are an impressively level-headed person! You say you are bummed, but end your email on a completely positive note. I volunteer to be your cheerleader, but I suspect you don't really need one! ; ) Keep us posted on your progress. Amelia Husband UC 9 years, SCD 18 months LDN 3mg, prednisone 5mg > > I had a bone density scan done the other day, and the results just > came back. I have osteoporosis. Boy was that a blow to find out. > > I was super bummed, and still am, that I haven't been able to control > this with diet, but now I'm okay with having to be on meds for a > while. I just hope they work! I guess that's the part that scares me > the most. Taking meds is one thing, if you need them and they work, > but it seems like the meds for UC don't always work very well, and > only for a limited amount of time. At least I won't be on them forever. > > For now, we're starting out with Rowasa enemas, which will hopefully > take away some of the inflammation so I can actually start absorbing > my food, which apparently wasn't/isn't happening. > > Luckily, so far, I get to stay on SCD. I have a feeling I definitely > won't be allowed to do it 'right,' by starting at intro and slowly > adding in foods, but at least I'll be able to stay legal. (Other than > the chinese herbs I have to take now, which have corn starch in them, > even though the doc SAID there was nothing added. Apparently corn > starch = nothing. Grrrr. Sorry for the long parentheses rant.) > > Anyways, that's sort of what's going on with me. Still flaring, and > pretty bummed about having osteoporosis, but hanging in there =) > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Rowasa enema 1x daily > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Alyssa,I am so sorry! The osteoporosis is reversible once you are healthier and absorbing your foods. Eat the calcium rich foods that you can and get 15 minutes of sunshine a day (to make vitamin D). As far as inflammation goes, have you ever researched bromelain? No, I haven't. What is it? You are an impressively level-headed person! You say you are bummed, but end your email on a completely positive note. I volunteer to be your cheerleader, but I suspect you don't really need one! ; )Lol! You should've seen me at the doctor's office when they told me. I used up all her tissues. Heh =) Keep us posted on your progress.Will do! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Rowasa enema 1x daily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 For now, we're starting out with Rowasa enemas, which will hopefully take away some of the inflammation so I can actually start absorbing my food, which apparently wasn't/isn't happening.Luckily, so far, I get to stay on SCD. I have a feeling I definitely won't be allowed to do it 'right,' by starting at intro and slowly adding in foods, but at least I'll be able to stay legal. (Other than the chinese herbs I have to take now, which have corn starch in them, even though the doc SAID there was nothing added. Apparently corn starch = nothing. Grrrr. Sorry for the long parentheses rant.)Anyways, that's sort of what's going on with me. Still flaring, and pretty bummed about having osteoporosis, but hanging in there =)Hey Alyssa, sorry to hear your bad news. But others have given you goodinfo about that, which is hopefully just temporary.As for rowasa, the first time I used it, right after I was diagnosed andhad raging UC, it helped get me about half way towards recovery. Thatis, it made me a lot better, but did not cure me. After that, just as a cautionary note, whenever my doc used it to try to help lower no. of BMs daily, it didn't help and actually caused bleeding I wasn't having at that point - so keep in mind that it can cause B (or more . My doctor suggested I halve the enema - can't remember if I tried that or not, I really hated it and at that point, it didn't seem to work, so I may not have done so. What happened to the Vitamin E enema protocol? I thought that soundedpretty hopeful - in fact, maybe do it at the same time as the rowasa - but for longer than just until the symptoms go away this time, if youhaven't been doing it lately. Or that steroidal enema - entocort or whatever? That soundedlike it might have an effect as well. Good luck with the treatment and I hope it works better for you than itdid for me. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Alyssa, Bromelain is an enzyme extract from the core of the pineapple. Just eating pineapple won't help, though. It is a great natural anti-inflammatory. The German's use it post surgery for inflammation and studies show that it is AT LEAST AS EFFECTIVE as NSAIDs (non-steroidal anti-inflammatory drugs) like ibuprofin. http://en.wikipedia.org/wiki/Bromelain I had a similar situation when I was 19. I was diagnosed with mitral valve prolapse. My mom was going nuts, but I was too naive to understand what the fuss was about. Now, at age 45, I discover that I don't really have it, but my mitral valve is slightly 'sloppy.' The good news is that now I don't have to take antibiotics every time I get my teeth cleaned or have a baby! ; ) Amelia Husband UC 9 years, SCD 18 months LDN 3mg, prednisone 5mg > > > Alyssa, > > > > I am so sorry! The osteoporosis is reversible once you are healthier > > and absorbing your foods. Eat the calcium rich foods that you can > > and get 15 minutes of sunshine a day (to make vitamin D). As far as > > inflammation goes, have you ever researched bromelain? > > No, I haven't. What is it? > > > > > You are an impressively level-headed person! You say you are bummed, > > but end your email on a completely positive note. I volunteer to be > > your cheerleader, but I suspect you don't really need one! ; ) > > Lol! You should've seen me at the doctor's office when they told me. > I used up all her tissues. Heh =) > > > Keep us posted on your progress. > > Will do! > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Rowasa enema 1x daily > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 oh so sorry to hear - good news is your young and i believe it will reverse itself - hang in there!! :-) > > I had a bone density scan done the other day, and the results just > came back. I have osteoporosis. Boy was that a blow to find out. > > I was super bummed, and still am, that I haven't been able to control > this with diet, but now I'm okay with having to be on meds for a > while. I just hope they work! I guess that's the part that scares me > the most. Taking meds is one thing, if you need them and they work, > but it seems like the meds for UC don't always work very well, and > only for a limited amount of time. At least I won't be on them forever. > > For now, we're starting out with Rowasa enemas, which will hopefully > take away some of the inflammation so I can actually start absorbing > my food, which apparently wasn't/isn't happening. > > Luckily, so far, I get to stay on SCD. I have a feeling I definitely > won't be allowed to do it 'right,' by starting at intro and slowly > adding in foods, but at least I'll be able to stay legal. (Other than > the chinese herbs I have to take now, which have corn starch in them, > even though the doc SAID there was nothing added. Apparently corn > starch = nothing. Grrrr. Sorry for the long parentheses rant.) > > Anyways, that's sort of what's going on with me. Still flaring, and > pretty bummed about having osteoporosis, but hanging in there =) > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Rowasa enema 1x daily > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Hey Alyssa, I think this happened because you are probably not absorbing calcium and vitamin D- so your body is pulling it from your bones. The good news? You are a long ways away from menopause. Lack of estrogen is a major risk for osteoporosis. Hopefully you are not so thin that your cycles have stopped- because you need the estrogen, so if you need to put on weight it will help if you do. It is in adolescence that you actually build up your bone reserves- while you still have plenty of estrogen. Did you check your vitamin D level? Make sure you get enough of that and calcium. It is important to do weight bearing exercises to build up your bones. At your age, you can reverse this. PJ > > I had a bone density scan done the other day, and the results just > came back. I have osteoporosis. Boy was that a blow to find out. > > I was super bummed, and still am, that I haven't been able to control > this with diet, but now I'm okay with having to be on meds for a > while. I just hope they work! I guess that's the part that scares me > the most. Taking meds is one thing, if you need them and they work, > but it seems like the meds for UC don't always work very well, and > only for a limited amount of time. At least I won't be on them forever. > > For now, we're starting out with Rowasa enemas, which will hopefully > take away some of the inflammation so I can actually start absorbing > my food, which apparently wasn't/isn't happening. > > Luckily, so far, I get to stay on SCD. I have a feeling I definitely > won't be allowed to do it 'right,' by starting at intro and slowly > adding in foods, but at least I'll be able to stay legal. (Other than > the chinese herbs I have to take now, which have corn starch in them, > even though the doc SAID there was nothing added. Apparently corn > starch = nothing. Grrrr. Sorry for the long parentheses rant.) > > Anyways, that's sort of what's going on with me. Still flaring, and > pretty bummed about having osteoporosis, but hanging in there =) > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > Rowasa enema 1x daily > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Hey Alyssa, sorry to hear your bad news. But others have given you goodinfo about that, which is hopefully just temporary.As for rowasa, the first time I used it, right after I was diagnosed andhad raging UC, it helped get me about half way towards recovery. Thatis, it made me a lot better, but did not cure me. After that, just as a cautionary note, whenever my doc used it to try to help lower no. of BMs daily, it didn't help and actually caused bleeding I wasn't having at that point - so keep in mind that it can cause B (or more . My doctor suggested I halve the enema - can't remember if I tried that or not, I really hated it and at that point, it didn't seem to work, so I may not have done so. What happened to the Vitamin E enema protocol? I thought that soundedpretty hopefulIt wasn't getting rid of the blood like it did last time, so we had to bring out the big guns. Heh =) - in fact, maybe do it at the same time as the rowasa - but for longer than just until the symptoms go away this time, if youhaven't been doing it lately. Maybe that's a good idea. I'll just do the rowasa for now, since I think I can only squirt so much into my colon before it rejects it, but maybe the Vit E would be good to help wean off the rowasa when the time comes.Or that steroidal enema - entocort or whatever? That soundedlike it might have an effect as well. None of the pharmacies knew of entocort. It doesn't seem to be very run-of-the-mill.Good luck with the treatment and I hope it works better for you than itdid for me. That makes two of us... Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Rowasa enema 1x daily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Alyssa, None of the pharmacies knew of entocort. It doesn't seem to be very > run-of-the-mill. Did anyone bother to ask either the pharmacist (not just the clerk) or the doctor if it could be ordered? The doctor especially will receive 'samples' from the drug companies. If he can prescribe it, he (or his staff) could very easily ask about a sample for you and find out who carries it. Something I have learned while living in Europe where they have tiny shops and not enough shelf space to stock everything. If you don't see it, ask for it to be ordered or if they have it in a store room. We used to frequent a toy shop in Holland that was so tiny you could barely turn around, but they had it all -- usually stashed somewhere--or they could order it from another store and have it in a couple of days. American's are known for customer service and they usually want your business--especially the small local pharmacies. If the clerk doesn't give you the answer you want/like, try the next higher level. Don't be shy! Amelia Husband UC 9 years, SCD 18 months LDN 3mg, prednisone 5mg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 I think they are called Predsol enemas. There is an oral steroid called Enterocort. Try Predsol. PJ > > Alyssa, > > None of the pharmacies knew of entocort. It doesn't seem to be very > > run-of-the-mill. > > Did anyone bother to ask either the pharmacist (not just the clerk) or the doctor if it could be ordered? The doctor especially will receive 'samples' from the drug companies. If he can prescribe it, he (or his staff) could very easily ask about a sample for you and find out who carries it. Something I have learned while living in Europe where they have tiny shops and not enough shelf space to stock everything. If you don't see it, ask for it to be ordered or if they have it in a store room. We used to frequent a toy shop in Holland that was so tiny you could barely turn around, but they had it all -- usually stashed somewhere--or they could order it from another store and have it in a couple of days. American's are known for customer service and they usually want your business--especially the small local pharmacies. If the clerk doesn't give you the answer you want/like, try the next higher level. Don't be shy! > > Amelia > Husband UC 9 years, SCD 18 months > LDN 3mg, prednisone 5mg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 I don't feel that I have too much to add since every one has been so great about supporting you :)However, if you need someone to commiserate with, you can email me any time! Thanks so much to everyone who has emailed me. This group is great =) Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Rowasa enema 1x daily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Hi Alyssa, I am sorry to hear about your flare. You don't have to take chinese herbs in the pill form (to avoid starch that is), you can ask for the ingredients of the formula, and get raw herbs from chinese herbal pharmacy (if you have them where you live), or you can even order them online from a very reputable sources, that test for lead, aluminum and other contaminants. Once you get the raw herbs, you can make your own tea. Another thought on the pills you are taking. For IBDers most formulas have one very popular ingredient called (ban xia = pinellia in Latin). While it is OK to take a formula with that ingredient while in remission, if you are bleeding, pinellia will make your bleeding worse. Most of chinese doctors simply forget that, who knows why. So I would check the ingredients of the formula you are taking. If you only have the name and the ingredients are listed in chinese, you can give me the name, and I will tell you. P.S. There are herbs in chinese pharmacopea, that reverse bone-loss, and mend broken bones. so don't worry about that. Whatever prompted your doctor to send you for a bone-density test? Lucy Nerus, LAc (doctor of chinese medicine) UC 7 years, SCD - 6 years Quote Link to comment Share on other sites More sharing options...
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