Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Can you expand further on your statement, 'if you are willing to be creative the diet isn't as limiting as it may seem'. I guess the way I find it extremely limiting is not being able to move up the levels, level 2 is my limit. I have been on it for one year so far. Will I ever progress??????? Naomi UC 4 years SCD 1 year Pentasa 2g Prednisone 2.5 mg > > > > I guess that's the problem, I don't really know what foods I can have. > > Can you explain this further? Are you expecting your symptoms to go > away once you start the diet? > > > The easiest way for me to find that out would be to go on the intro diet with only a couple of foods and then work my way up > > slowly, but both my parents are very opposed to that since " my diet is already so limited. " > > Well, technically, out of the 1000 or so things that are edible, the > SCD only forbids 8 or so. If you're willing to be creative the diet > isn't as limiting as it may seem. > > > I'm going to be getting results from a stool test soon so that might give us some answers, > > but if it doesn't, and my parents still refuse to let me go on intro, my next step at this point is LDN. > > What does the stool test entail? > > -- > Cheers, > DF in MA > UC June '07 > SCD Nov '08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 > Can you expand further on your statement, 'if you are willing to be > creative the diet isn't as limiting as it may seem'. I guess the way I > find it extremely limiting is not being able to move up the levels, > level 2 is my limit. I have been on it for one year so far. Will I > ever progress???????> Naomi> UC 4 years> SCD 1 year> Pentasa 2g Prednisone 2.5 mgBroken record once again: Take LDN with the diet! It'll make a huge difference. Here's part of a post from a woman on the LDN list who has UC. Maybe this will convince you.>I was diagnosed with UC in 1986 and was taking all sorts of meds which I have since found out weaken your bones ie prednisone, >and at the time was having regular blood tests to ensure my liver was >still functioning normal as I was taking sulfasalazine.>Sulfasalazine effects the liver. However, with the meds I was taking, I was being prescribed more ie increase the dose and >then the time came when I had to add steroids to give the meds I was on... >>I came across LDN through a newspaper article that my Dad raised my attention to.... [she then met with an LDN specialist who convinced her to try it.]>I have to say within a month I was feeling so much better, bleeding had stopped and the fact one of the side effects that LDN could cause constipation>was music to my ears. I know that’s not good news, but when you have no control over our BM, it really was. So the runs had stopped but I have to>admit it took about 4 weeks to have an effect. Within 3 months I no longer had bloatedness and pain and touch wood it’s been uphill all the way. >I haven’t since had a flare up (unusual for me to go 12 months without one) and I have at times been under quite a bit of stress this year so I can honestly >say with my hand on my heart that it really has worked for me. >I can’t recommend highly enough for anyone to try LDN with UC. I started on 3mg and within 2 weeks went up to 4.5mg, but lowered it back down to>3mg as I also suffer from osteo arthritis in the hip and knee and this was increasing the spasms in my legs on the higher dose.  Through discussions on these forums, it has become evident that the amount of LDN one can take depends on the functionality of their liver>and as the meds I was being prescribed must have had an effect on my liver it is my personal choice to remain at 3mg which I take each night. n  Now available. A fine  gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Hi Alyssa, As a parent myself, of children your age, I appreciate your parents' perspective on this. They love you, and are looking out for you We can share our opinions, but ultimately, it is their choice, and all of us adults here should respect this. PJ > > > Alyssa, I really think you need to start taking LDN, and ASAP, as > > you suggested recently you were considering. > > > That's actually not an option anymore. My doctor won't prescribe it, > and my parents are with my doctor. =( > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > No meds! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 As a parent myself, of children your age, I appreciate your parents' perspective on this. They love you, and are looking out for you :)I know =) They did consider LDN and discussed it at great length, so I know they have my best interests in mind. I'm not mad at them for their decision at all, just a little disappointed that LDN isn't FDA approved. If it was, things might've turned out differently. We can share our opinions, but ultimately, it is their choice, and all of us adults here should respect this. Thanks =) Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 Yes, and keep in mind that the medication someone may choose in middle age is different than for a teen who still has not finished growing both physically and mentally. The physical demands of adolescence are certainly different. It sounds like you are all staying informed of all your options. Feel better! PJ > > > As a parent myself, of children your age, I appreciate your parents' > > perspective on this. They love you, and are looking out for you > > I know =) They did consider LDN and discussed it at great length, so I > know they have my best interests in mind. I'm not mad at them for > their decision at all, just a little disappointed that LDN isn't FDA > approved. If it was, things might've turned out differently. > > > We can share our opinions, but ultimately, it is their choice, and > > all of us adults here should respect this. > > > Thanks =) > > Peace =) > Alyssa 15 yo > UC April 2008, dx Sept 2008 > SCD June 2009 (restarted) > No meds! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 >> As a parent myself, of children your age, I appreciate your parents'>> perspective on this. They love you, and are looking out for you >> I know =) They did consider LDN and discussed it at great length, so I> know they have my best interests in mind. I'm not mad at them for> their decision at all, just a little disappointed that LDN isn't FDA> approved. If it was, things might've turned out differently.>>> We can share our opinions, but ultimately, it is their choice, and>> all of us adults here should respect this.>>> Thanks =)>> Peace =)> Alyssa 15 yo> UC April 2008, dx Sept 2008> SCD June 2009 (restarted)> No meds!>I understand, Alyssa, that you must, and of course want to, abide by your parents wishes. You're an exemplary daughter!I don't want to beat a dead horse. However, I think it's important (for the whole list) to correct the assertion that LDN is not FDA approved. Naltrexone is an FDA approved drug. If it weren't it would illegal to obtain it. It's true that all legal drugs are originally approved by the FDA for specific uses. But after they're approved it's often discovered that they work for additional or totally other/different ailments. (Rogaine, e.g., originally had nothing to do with hair replacement.) Every day, many of those approved drugs are presecribed by doctors for additional and/or other ailments. (For example, my brother's gastroenterologist at the University of Chicago Medical Center prescribed thalidimide for his mesentery perniculitis (sp?) -- a rare IBD.) There's nothing unusual about a doctor prescribing a drug for a use not specified by the FDA. It's done by hundreds, probably thousands, of doctors every single day. Another example: I currently have a raging ear infection which is now far less "raging." The ear/nose/throat specialist I was sent to yesterday did something quite unconventional but perfectly legal: he created a cotton "wick" daubed in coal tar, inserted that into my very swollen ear canal, then applied acetic acid drops (essentially vinegar in an oil base), which I reinstill every three hours. Some ENT doctors would cringe because they always go "by the book," i.e., only for a drug's specified use and they ignore "old-fashioned" remedies, even if they still work. But it's perfectly legal for a doctor to prescribe drugs for so-called "off label" usage. (My ENT specialist's method is working beautfiully, BTW, and I'm no longer in the agonizing pain I was in for three days and nights. I'm very glad I was sent to him; I had my speech all rehearsed about why I wouldn't/couldn't take antibiotics by mouth because of my Crohn's, etc,, etc., but I didn't need it!)That said, I hope you find something that works well for you to start getting your disease under control, and that your parents concur with. n Quote Link to comment Share on other sites More sharing options...
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