(Posts from the LI Listserv)
The people on this list who have IBD may have no choice when it comes to using immune suppressants, until the diet has time to do it's work, or if they have concomitant conditions that do not respond to the diet. In many of our cases, suppressing our immune systems is exactly what we want to do, and boosting it could leave us permanently physically impaired, or dead.
None of us want to use these powerful medications.. I certainly am not happy about injecting myself with toxins, and with drugs for which there is no long-term feedback. To have to make that choice is a decision fraught with emotion - at least it was for me, and I found it very difficult to get my head around *needing* to use a cancer drug. So, given how difficult a decision it is for many of us to go on these drugs, being told that what we're doing is wrong, and that it's not what we WANT to do only makes it more difficult for us.. of course it's not what we WANT to do.. but then, I don't WANT Crohn's or rheumatoid arthritis or reflex sympathetic dystrophy or fibromyalgia. This is a listserv for people with IBD, among other things, and IBD is an autoimmune condition. For most IBDers, at one point or another, immunosuppressants are a necessity.
Aspirin and Ibuprofen (all NSAIDs actually) are contraindicated for IBD, as they can increase bleeding. Tylenol (acetaminophen/paracetamol) is IBD safe as long as you're not allergic to it. As for other cold meds.... depends on the ingredients.. I went to Vicks' webpage.. makers of Nyquil in all it's forms, and checked ingredients lists... All have illegals... either high fructose corn syrup or sorbitol or some other crud...
It's easy to check ingredients in meds... just go to www.google.com. And type in the name of the med and the word 'ingredients' and hit search... make sure you look at both medicinal and non-medicinal ingredients...
I was diagnosed with CD at 16, and am almost 32, so I have a good 16 years of experience I thought I would share. I have tried sulfasalazine, every 5 ASA that is out there, Prednisone, 6 MP, and Remicade. Accupuncture, homeopathy, chi gong, meditation, physic healing, a psychic nutritionist, herbs, and positive visualization. Molo-cure, Primal Defense (along with other Garden of LIfe products), juicing, raw foods diet, and traveled to Cambridge, England to work with the Doctor Elaine quotes who does food elimination. (Did I leave anything out?)
L-Glutamine is an amino acid that soothes the intestinal wall when d is present. as far as i know it is legal. it is usually meant for weight lifters because it cuts down the recovery time for their muscles and helps prevent them from breaking down due to strenuous excersize. Just make sure it’s not from a grain source.
Also, the idea that supplemental glutamine is all metabolized to glutamate is simply not the case. Have you ever seen a patient with MSG sensitivity? The symptoms these patients have are the symptoms of excess glutamate: headaches, nausea, dizziness, and this is something I have never seen nor seen reported with high dose glutamine. The body is very good at controlling the Glutamine-Glutamate pathway, which requires B6.
In addition, the L-glutamine is necessary to completely heal your gut. The glutagenics was a good source of L-glutamine, if you can't tolerate it, Thorne also puts out glutamine in capsule form. TAke the AO encap 1 capsule 3 x per day for 6 weeks then break for 3 weeks and continue for approximately 3 - 4 months. The glutamine should be continued for about 6 months at 500 mg 3 x per day.
I only had the dry mouth symptom when i didn't consume enough water with it. I neglected to recomend drinking a great amount of water with the glutamine but not the tap water in London(!) At least you can buy the good spring water in glass bottles. We have phased out glass so everything is in plastic here-yuck!
I was taking 1000 MG tablets from Jarrow-1 Per meal. I found the caplets full of powder weren't as effective. I think there is quite a potency difference between brands. I also used powder from Champion nutrition- this was the best price and greatest quality(http://www.dpsnutrition.com/) Glutamine can be quite expensive... I used about 5 grams in water or shakes once or twice a day. It is important to note that I did not verify these are from grain free sources. Hulda clark recomends glutamic acid, I belive because it is less prone to form glutamates (MSG). I tried glutamine peptides but not early as effective. Watch out for a chemical urine smell, it means you risk the possibility to overload you kidneys just back off on the glutamine if this happens. Also it can be quite constipating so figure out what works for you. There are claims that glutamine doesn't help digestive problems. EVERYONE IS different. It may work well for you. Coconut oil and many other "beneficial" aids for digestion don't jive with me so it's just a testing and obsevation game we all have to play. I don't take it much anymore, just a tab a day when i'm feeling weak.
Subject: Re: L-Glutamine
I don't think it would hurt to try it. It was an absolute godsend for me! I know I did lasting intestinal repair with the consistent use of it with meals for a month. The item number is 407. Also, about l-glutamine. Some people get more D from l-glutamine, instead of less. I know that it is a chemical trigger for the bacteria that I have as an overgrowth in my gut and it might cause a flare, so I never use it or take any supplements with it as an ingredient. Also, people with a history of Proteus mirabilis urinary tract infections should also never touch l-glutamine.
IBS/dairy/celiac?/P. mirabilis 5 yrs SCD 22 mos
You can take the lyo-san acidophilus yogurt pills from Lucy for good bugs. As far as reintroducing foods it may take some time. If your stool looks like coffee grinds (I'm only saying this cause you said it looked like dirt) then you need to get checked. That's a bad sign but if you are seeing improvement however minimal keep going. As far as L-glutamine, I think it is a personal thing. It made me sick but I am highly sensitive to all that kind of stuff. I can't even take fish oils. L-glutamine is not mentioned in BTVC and is beyond the scope of us oldies to know whether it is ok or not. If you decide to use it, use it with caution.
One of the side effects of the Pentasa (5ASA) is diarrhea. I flipped out when I read this on the patient information sheet. Now, your weight has stabilized , this is a great sign. When my system was improving, I would have the D., two of them in the morning, and then none the rest of the day. I gradually improved from here, with ups and downs along the way. The L-glutamine should help you with the D., I did take it but don't have to now. I'm on Pentasa and Entocort. Without the Entocort, I needed the L-glutamine.
I'd like to thank everyone for responding to my questions and for the suggestions.
My weight is 165lbs and isn't moving either way so maybe that is just what I am supposed to weigh. I am starting to suspect that maybe the d is not related to what food I eat, but maybe to what medication I take. A few days ago I ate only spinach and meat and my next movement was compete liquid d. Doesn't seem to make much sense. Over the last few days I've added back bananas, a little apple sauce, a little yogurt with no real change. I still have d 1-2 times a day.
I have seen it discussed many times on this list that Asacol, Pentasa or Dipentum (my drug) are all 5-ASA and aren't as effective as the older drugs (Alzufidine). I am going to discuss switching to Alzufidine with my doctor, but I already know he will not be too receptive about the idea. It is my understanding that these older drugs have many more side affects and you need to build up a tolerance to them. We'll see how it goes. My appointment is Tuesday Nov. 18.
I have also been quite suspicious of having some bad bacteria, parasites or yeast in my system that may be very hard to get rid of. So I found an SCD friendly naturopath named Dr. Heli McPhie is my area (Vancouver). There is a list of doctors on http://www.scdiet.org/8resources/doctors.html in case any wants to do the same. My appointment was Tuesday and it went as I had hoped. She has arranged a stool test through Great Smokies lab to check for Clostridium Difficile, Candida, Proteus mirabilis, parasites and other stuff I am sure. I have a kit and have to collect samples over three days this weekend. Should be lots of fun. It is also very expensive ($500 CAN + taxes), but at least I will know whats going in my guts.
Again I want to thank everyone on this list. It is very helpful. I am going to look into getting some fattening legal coconut milk to see if I can add that and I forgot to ask the naturopath about L-Glutamine, but I will ask her when I discuss the results of my stool analysis.
If anyone is going to try L-Glutamine, may I suggest buying it in the pharmaceutical grade. There is no chance of any anything added to it.
I got the L-Glutamine at Whole Foods Market. Now, buy the powder form. I got the capsules first and had to return them -- rice powder filler. The brand I bought is SCD legal. It is made by Jarrow Formulas, L-Glutamine (Free Form Amino Acid); 100% L-Glutamine and contains no other substance. It is a white powder that the clerk told me I could drink in any liquid. So, water would probably be best. Start slow. Only one scoop, and see what happens. Everyone's system is different. And, the other foods were are eating / drinking are different.
Make sure you are drinking enough water :). Otherwise, dehydration can make you feel even worse. There is an electrolyte drink home-brew recipe if you need one.
I threw the L-glutamine in with the goat's milk yogurt and didn't know it was there. I've given up both, but I think I'm going back to the L-glutamine.
I found out by "accident" that honey is a major laxative for me. I caught a cold and was sipping peppermint tea with honey--and yikes! It was a bad scene. So, no more honey for me. When you are struggling with D., I would put all fruit and fruit juices on hold. With my cold, I was also trying to sip very diluted fruit juice--made me very sick. I have stopped both my applesauce and the juices for now. My first flare was done by "almond flour" overload.
In the beginning, when I started doing well before this last flare, I needed a probiotic supplement to help with my D.. The diet did not seem to do it by itself. This makes sense if you can't eat the yogurt, you need the good bacteria from somewhere. The other supplement that I stumbled upon that did help was L-glutamine. Its an amino acid, muscle enhancer. I got started on it because my muscles are withering away along with my weight, too. L-glutamine in most people is constipating, but go very slowly so you don't tip the scales in the other direction.
I think part of my flare now is that I haven't been consistent with either my probiotic or my L-glutamine. Because I started back at square one with the intro diet, and just my meds from the doctor....
I know that the food restrictions are tough, but even so, I'm much better than when I just came out of the hospital so, something is working.
I'm going to try homemade 1/2 and 1/2 yogurt mixed with whipping cream dripped to see if I can handle the cow's milk yogurt. Hard boil some eggs, and eat some white cheddar cheese. These are some of my staples.
My symptoms prior to SCD consisted of gas, bloating, and abdominal pain in the low end of the ileum, also an inflamed rectum. Repeated waves of these symptoms would end in D, then subside. Over a period of years, the waves came closer and closer together, until there was no subsidence, just D. Interstitial cystitis (IC) always coincided with the flares and followed just after the start of a flare by a week or so. By the time the waves converged to one long flare, I also had symptoms of pelvic inflammatory disease (PID), with inflammation from anus to pubic bone. I have read posts by one other person on this list who has symptoms similar to mine, so this is a rare condition on this list. Also, l-glutamine is a chemical trigger for P. mirabilis to go into the virulent, swarming form (the swarm cells caused the wave like symptoms I described). So I avoid taking supplements with either l-glutamine or glutamate (which can convert to glutamine in the gut, and is in the food additive MSG) in them. That means I don't take the Freeda B vitamins, which contain l-glutamine. I suspect l-glutamine would cause D in me, instead of stopping D, as it does in most people.
IBS/dairy/celiac?/P. mirabilis 5 yrs SCD 22 mos
My understanding of Chinese herbs (and I admit to minimal knowledge) is that they are a very powerful medicine, often under-estimated in potency and often misused as a blanket cure-all, when in fact they can cause a great deal of damage, in the hands of someone not completely schooled in their use, dosage, and the problem they are trying to correct. We *must* be so careful when using these herbs, as well as trendy, multi-purpose, supplements. I remember trying Echinacea, because it was considered the new miracle for warding off a cold that was in the beginning stages. It started a bleed so intense, I wasn't sure I'd ever pull out of it. Through this list, I later discovered that others with IBD had similar reactions to this supplement (?). Please be careful. The SCD is nutritionally sound, and Elaine adds vitamin recommendations for those that think they may not be getting enough from their foods. Before adding anything else, why don't you see if these (+ your meds) are enough?
Please do not eat whole nuts no matter how well you chew them when you are having a relapse with D….
Are you sure the vitamins, etc. do not have starch, lactose, etc. in them? You are better off eating liver a few times per week - the liver pate in them book is great - since oral iron can cause some irritation as well as encourage the growth of intestinal bacteria.
Iron should never be taken unless you have been tested to be low on it.
Please go to a search engine and read up on Fosamax. The Wall Street Journal ran an article a few years ago which made it a questionable drug since there were many side effects. I know you are taking it because prednisone can make bones fragile but I really don't know if a drug like Fosamax is an answer.
They found C Diff when I was in the hospital three months ago, but I was tested a month and a half ago and they didn't find any C Diff.
Elaine: Well, for goodness sakes! When they found it in the hospital, did they treat it with Flagyl or vancomysin. If they didn't, I would be very suspicious and even if they did not find it the second time, I would be tested a third and fourth time. After all, it is your body and you deserve to have a few tests to try to get at the bottom of this.
For anyone who has CD and particularly those who have had blockages or have strictures, be careful with carrots. Some people may need to always avoid raw and grated carrots, whether they are in remission or not.
Processed cellulose as an ingredient is not legal. It's food for the bad bugs.
To Deb from Elaine:
Caffeine is a stimulant and could stimulate the nervous system of the gut thereby increasing peristalsis (hypermotility and diarrhea). Making it with half the amount of coffee (about 1 tsp per cup for drip) would be an improvement. We don't know of any gum that would be SCD compliant. Glucosamine is counterindicated since it is reported to affect adversely the effect of insulin. I don't know how true it is but I really don't think it helps IBD. Some people have reported that L-glutamine is helpful and it very well may be.
Dear Doug from Elaine:
The L-glutamine seems to be helpful for those who need extra help with SCD. As for the glucosamine, I have heard only one report on it by Dr. Zimmerman at Freeda and he was very upset that people are taking it and called me to tell me it is not advisable.
If you had problems with the yogurt, you may also have problems with the Lyosan probiotic pills, because they contain dairy also. I suggest you try Milk Free Acidophilus made by the Nature's Life company. This is an SCD legal probiotic, recommended for people who cannot take dairy. You can order it at this web site:
I have also experienced what it is like to battle IBD when you're pregnant. Like you I was diagnosed with IBD (I have UC) while pregnant. I began following the SCD while I was pregnant. My baby is now 9-months old, happy and healthy, and still nursing.
I was on cortenema last time I was in flare. It worked well for me . I was taking it twice a day for 3 weeks and than once a day for about a month. You are right it is less invasive than taking steroids in a pill. With the SCD I hope I won’t have to take any more.
Has anyone tried colocort...a cortisone enema...it only works if you have left sided colitis.....whenever I get bad this is what my GI prescribes...it pretty much stays localized in the colon....depending on the length of use....and it is less invasive than prednisone...when I first developed uc I was on 60mg for a short while then tapered....
No steroids are great...but I felt a little safer with this than a pill...I might also mention that after the first enema the symptoms really subsided in me....
Regarding my meds situation, I took Salazopyrin (sulfasalazine) as prescribed for about 4 or 5 years. During that time I had a couple of periods of remission, the first and longest one directly after a colonoscopy. Apparently this happens with many people - the gastric lavage seems to clean out a lot of the bad bugs and these people go into remission for a while. But whilst I was flaring, I really didn't feel that the drugs were making any difference at all. This was borne out after I gave them up - the same pattern continued of flares and remissions, but actually more remissions than flares. So I definitely didn't get any worse. My gastro treated the flares with the hydrocortisone foam and was happy enough for me to go off the maintenance meds.
US) as a maintenance drug. I copy below two posts from Elaine that I saved when she was on the list.
www.healingcrow.com and click on elaineswisdom and search for these drugs. By the way I just got thru writing the 1000th time about the difference between the two. Here is my email: "James "I went into a big spiel two days ago about this drug but I will repeat it. I said that it sounds to me very much like azulfidine in that it has two parts to the molecule. As usual, and I know they are incorrect, the medical experts claim that the para-amino benzoic part is inert. That is all wrong! That is the part that keeps bacterial growth to a minimum. "Here is what the literature says <<<Balsalazide disodium is delivered intact to the colon where it is cleaved by bacterial azoreduction to release equimolar quantities of mesalamine, which is the therapeutically active portion of the molecule, and 4-aminobenzoyl-B-alanine. The recommended dose of 6.75 grams/day, for the treatment of active disease, provides 2.4 grams of free 5-aminosalicyclic acid to the colon.>>> "Since the great minds into gastrointestinal practice say they don't know what causes IBD, they treat inflammation with the aspirin like part (the salicylate) which, I believe, is the PRODUCT of the bacterial infection. I would appreciate it if you would give my email to your doctor and let him laugh and denigrate me but I know that Para-amino-benzoic acid (PABA) which is found in azulfidine and which appears to be alanine portion of colazol is the active part of this drug and can help a bit."
Sydney) UC 92, SCD 04/02 no meds
Congratulations on your progress! Having a trophy is always a big event in my life too! I was just wondering how long you have had UC UP? Although I have Crohn's colitis, the diet has helped eliminate the disease from most of my colon. About 7 years ago when I started the diet it was my ENTIRE colon that was affected, but now it is just the very end of the descending colon, sigmoid and rectum, so since I had this last flare up, (BTW brought on by antibiotics because before that I was in remision) my symptoms are a lot like UP and I find it very frustrating at times. For me it is like dealing with an etirely different type of IBD, not at all like when I would flare with Crohn's before. Did you get tenesmus with UP? Thank goodness that is subsiding for me - it is such a frustrating symptom. Also my doctor has me using a rectal hydrocortisone foam. I found after a couple weeks on that the urgency got a lot better. Anyway, bottom line is that the diet is what made me well before and I can see that it is already helping me again. I have to admit when I did go into remission (thanks of course to the SCD) I introduced illegals. I never went crazy and never did start eating refined foods, but I would have the occasional potatoe, rice and spelt or kamut product. Sometimes I think maybe that just compounded the problem when I took the antibiotics. Anyway, I have been back on the SCD strict for 3.5 months and do notice a marked improvement, but just to have a few of my questions answered regarding UP would be great.
My son at one time had pain around the descending colon and sigmoid. He then used hydeocortisone enema twice a day (in the morning and at the bedtime). He lay on the left side while injecting the enema, and then lifted up the bottom with a pillow underneath to flow the enema up to the descending colon for an hour. After a week, his pain had gone. Hope it works for you too.
You should be getting the blanched ground almonds from one of the people listed in my book as the almonds look fine and gentle. Of course, if Nicole is still having a lot of diarrhea, you must not give her a lot of muffins, cookies. You should bake a batch of whatever and put it in the freezer. Then start her out on a small amount (1/4 muffin the first day) and skip a day and then increase to 1/2 the third day. Keep a diary.
Pepto Bismol is ok to take for an intestinal virus.
Goat's milk has a different kind of protein which is easier to digest for some babies and people with bowel problems.
Primal defense is not SCD compliant. Here's some infor listed on Elaine's site; http://www.breakingtheviciouscycle.info/
I was diagnosed in Jan. 2000 with UC, with symptoms for years before that off and on but what prompted me to go to the GI was that I couldn't stop bleeding and D on my own that time. Since then I have been on Asacol, Rowasa enemas, Cortisone enamas, Canasa suppositories - I tried Colazol and it made me so nauseous I had to stop. I started SCD Aug. 2002 and since then have had 6 months with no blood. In April I started a flare that I am having a doozie of a time getting over, blood again, cramping, D, etc. My entire family told me the diet wasn't working and to go off of it BUT here is the thing. Last summer I had a colonoscopy because I was so bad, had lost alot of weight and could barely function at all I was so weak. The results were that my UC had progressed 10 more cm than in Jan. 2000, I was a real mess. Then I started SCD and slowly got much better. Until April 2003 when a flare hit me hard and fast and although I felt "crappy" (pun intended) I could function, go to work, then interview (when I was looking for a better job/stressful) and start a new job. I went to see a great new GI (finally after 3 years of searching) got a sigmoid and found out that now my UC has progressed 15 more cm to a total of 35 cm (not a fun sigmoid, let me tell ya) MY POINT IS: the diet DOES work, I would never have been able to make it through (physically) this past 10 months with out it! My colon is much worse at the moment (lots of stress in my life that won't be getting better any time soon) AND I can still function and much better than last summer when my colon wasn't nearly as bad as it is now. So, hang in there, follow it fanatically and you WILL see results. It is a lot of work but so very well worth it to be able to be a part of life whether it is working (and bringing home a paycheck) or enjoying your children (outside of the bathroom) <--last summer my children and I would carry on conversations through the bathroom door because I was in the bathroom more than I wasn't.
You will make it! Read your book, read labels, bake/cook in large batches and enjoy the fact that (to some degree) YOU have control over your health - not relying soley on Doctors or medication (for me) is so liberating!
For people who's immune systems aren't totally messed up (sound's sorta strange to say on a list for people with immune diseases.. LOL.. diet must work), UNPASTEURIZED honey is okay - but it must be clear - i.e. well filtered. The pollen in unfiltered honey can cause no end of problems if you're immune system is already hair trigger.
I prefer well-filtered, unpasteurized honey, because pasteurized can sometimes be bulked up with corn syrup. Some list members pasteurize their own, and that might not be a bad idea for you, given your current symptoms and your history. Just make sure you heat your honey gently and slowly.
Corn, of any kind, is illegal. It is a grain, and therefore, not SCD compliant.
There is a handbook you could get to share with your physician. It's a reference book for doctors and it charts the nutrient depletion for every medication, it's called "Drug-Induced Nutrient Depletion Handbook" by Ross Pelton et al, published by as part of Lexi-Comp's Clinical reference Library; a lot of GI meds reduce such vital nutrients as B6 and maybe you could persuade him to take this on board and work out a kinder program of medication. Just as an example Pentasa depletes folic acid and Metranidozole kills off lactobacillus acidophilus and bifidus.
You asked: "I would like information about Pentasa"
Pentasa is a brand name for Mesalamine, same as Asacol, Mesasol et al. See 'Re: penicillin' at 16:39 today.
Yes, cramping is one of the known side effects of this class of drugs.
To discuss 'weaning' with your doctor(s), you need to know as much as they do about medications. Go to a bookstore and get yourself a copy of the fat (2" thick) drug handbook - best investment you may ever make.
I don't know how anyone these days can make good judgments without such information. You will always hear the upside from your medicos, but too often the downside is glossed over.
I apologize to those of you who are or have found truly wonderful doctors, but I am convinced that MOST Docs are brainwashed. For any of you who are concerned about GAINING weight or the effects of otc medications ....you must read Dr. Schwarzbein's book the Schwarzbein principle. I can't say it enough because it will explain to you the physiology behind your concerns. You have to be careful about her diet recommendations because they do not take into consideration an ill intestinal tract or lactose intolerance, but it is important to understand the way we process food. You cannot reach your ideal body composition on a low fat, high carb diet...even of legal carbs. EAT FAT. You CAN"T overeat fat or protein, so if you are still hungry after eating three eggs, you are probably protein or fat deficient. And over the counter drugs will artificially raise your insulin levels, without the carbs there for it to digest. Unused insulin is harmful to your body and may be responsible for flares, so ANYTHING that can stimulate the release of unnecesary insulin is unhealthy. This book explains so much, it is such an excellent supplement to the SCD and Elaine's book. For people who have trouble sticking to the SCD at first because they crave illegal carbs, you will find that your cravings subside when you are getting enough fat and protein, something else explained physiologically in this book. I am so grateful to have this info I just want to share it with everyone, since there is apparently some conspiracy to keep all of this a secret from the general population. :)
When I have muscle cramps -- I take potassium and it always helps.
It sounds to me like what you have is a sign of very low or rectal disease. I know most of us don't want to add more medication, but you have a relatively new diagnosis and have not been on the diet all that long so maybe you need something rectally. What we take orally in terms of medications is essentially burned out by the time it gets that low in the colon. I had the exact same symptoms as you this past fall and started the SCD strict in September and my doctor added something called Proctofoam. It helped reduce the frequent little bits of mucous and I also had a problem with urgency; it seemed to help with this too. I know it only worked because I was following the diet in conjuction with some meds. The diet is definetely the key. Hang in there!
cramping and D are both listed side effects for asacol, but they are listed as uncommon. i urge folks to look up side effects of new meds on line before they decide if they are going to take them or not. most doctors either don't know or won't tell you what ALL of them are, it seems particularly true of long term side effects. early on i was in a local support group and some of those folks had devastating, irreversible side effects from years of using some of the harsher meds. a decision like that should be an informed one.
I had pretty bad headaches and severe back pain. You could see big knots of muscle on my back even with my shirt on. I also always had a funny taste in my mouth, but the GI swore that that couldn't possibly be from the meds. What ever the reason it went away after I quit taking the asacol. I just generally felt bad. I'm pretty sensitive to medications in general, and it was explained to me that the backache was pretty uncommon, so you wouldn't be likely to have that. I didn't find asacol very helpful either, it was an improvement, but the diet alone gave me greater improvements. I was never on the diet and meds at the same time.
My husband was on prescription immodium, which is asacol. You might want to look that up on Elaine's website www.breakingtheviciouscycle.info so that you can be informed about your medications. Glutamine is not really a diarrhea medication.
My apologies, It wasn't my intention to play doctor. I do tend to favor no meds, but it is only because of my personal experience with meds, and what I have seen happen to people after years of use of medications like prednisone. I have had doctors tell me I had no other option but to take harsh meds and/or get surgery, and for me, it simply wasn't true. It was my intention to point out to others that there may be another option for them too. It's great if you have a doctor you can have faith in, but you need to ask questions, and you need to have faith in your self, and what your body tells you as well.
The blood work is needed for anyone who is on any of these medications in order to monitor the white blood cell counts and check the Iron and different levels of nutrients in the Blood. They also check your Thyroids because some of these drugs contain hormones. Hope that helps.
I hear you about the withdrawal symptoms! My main one is fatigue to the point where I feel like all I want to do is sleep for a year. And let's not forget the joint pain! Oh well. It is still preferable to bloody diarrhea
25-30 times a day/night. When I flare, I flare royally!! So I'll take the pred for now and worry about the withdrawal later :)
But I would DEFINITELY give the diet a try before going on the prednisone, if I were you. Unfortunately, the diet alone doesn't seem to do it for me, but I know it works for a lot of people, and it is certainly much healthier than taking medications.
Tylenol or any generic brand of acetaminophen is alright. NSAIDS like ibuprofen or motrin are not legal neither is aspirin.
I started Remicade before I began the SCD, and the first and second infusions worked remarkably (it neutralizes part of the inflammatory process, and then is out of your body in 6-8 weeks). But the good effects only lasted 10 days. They give you 3 infusions close together (the first, then the second two weeks later, then the third one month after that.) And then you get them every 8 weeks. I started the diet two weeks after the second infusion, since my symptoms had come back, and the SCD stopped my fever and night sweats in 24 hours!
I plan to ultimately stretch out my infusions as far apart as possible, and I can even lower the dosage from 5mg/kg to 3. Part of me just wishes I could stop and go solely on the SCD (I am also on Colozol), but it has been such a rocky road the last 8 weeks, since my family has been sick these last 2 weeks I am SO tired, and I will know how much of my exhaustion has to do with inflammation. The problem with Remicade is that if you go too long between infusions, you build antibodies to it, and run the risk of suffering greater reactions to it (or it just doesn't work.) I welcome the day I don't need any medications, but it is so early days yet.
You wrote: I was such a carb junkie before- i could have lived on bread alone. I was also wondering about staying on the diet. I read in BTVC that after 2 years most people are cured. Is this the case?
Hi Serry, I am not a doctor, but I just want to give you a little advice, Don't medicate yourself to your daughter, it will be a good idea if you take her to a specialist, sometimes the SCD diet doesn't work alone, or the sometimes the medications doesn't work alone, for some people a good diet (scdiet) and medication works wonderful for them, little by little when she progresses in healing with the advice of her Dr. she can lower the doses and who knows maybe one day she will be out of medication.
Relapse with diarrhea: I’m thinking that this might be the dreaded 3-month relapse. No one knows why, but it does happen to some people. Patience will get you through, if that’s what it is. However, I always get uncomfortable when someone says that they “quit all medication” and replaced it with the SCD. Elaine has never suggested that this be done. Based on tons of feedback, she does believe that some meds work better than others. But the SCD, along with appropriate meds, will work until the colon can manage on its own. That’s how it worked for me and I’ve been well for 8 years. Also when you say that he was diagnosed with “aggressive bacterial overgrowth”, could it be that he has Clostridium Difficile? Please look for information regarding this on http://www.breakingtheviciouscycle.info/
After my last hospital bout (over a year ago now) they put me on Pentasa. I never noticed any difference to my symptoms at all with it. It did give me a dull headache though. After I had stopped the Pentasa for 12 hours the headaches dissappeared. When I started taking the Pentasa again the headaches came back. I stopped it completely and about the same time I started SCD and never looked back. It might help some people though and I am not suggesting that anyone should stop taking the medications prescribed to them.
The way it was explained to us is that Imuran is the IV form, it essentially turns into 6 mp in your system. My daughter received this through her PICC line. We have now transitioned to the oral form which is 6-mp. I like this site for explanations of the GI drugs http://www.gihealth.com/html/education/medications.html
The diet has worked for me, along with 5ASA - Salofalk, in my case. I was able to come completely off Prednisone and Imuran 6 (the latter was not effective at all). There is no question that it is the combination of both diet and meds that has improved my condition greatly. I can't speak to becoming pregnant at this time of my life, but I encourage you to speak to your GI about weaning you off Prednisone and starting you on one of the more benign medications. Hope this helps.
The asacol might be the problem. Remember, Elaine herself doesn't advocate getting off medicines completely and just following the diet. In time being med free is the goal, but until you get to that point, meds can help. Your mother should try switching medications. Asacol stopped working for me after three yars and now I am on azulfadine to a much better effect. But your doctor would be the best person to ask about switching to something else. Keep in mind, the wrong mediine can and will hold back your progress.
Interestingly leg cramps are also a fact of pregnancy and malabsorption and said to be possibly either as a result of too little calcium or magnesium.
You might want to read all the info at www.cdiffsupport.com, a patient-support site with lots of info and message boards for asking questions for cdiff folks who can't seem to get rid of it. After doing the log-in process, go to Discuss and then Topics and browse around under the various headings. Lots of really good info on treatments, medications, peoples' experiences with various tx, etc. Many folks on that list do take S. boulardii and I don't think it has illegals in it for SCD but I'll leave that to Elaine or others on this list. Also, the website recommends Culturelle, an acidopholus product, but it's illegal cuz it has inulin in it. You may get similar benefit from Lyosan, the acidoph. product you can get thru www.lucyskitchenshop.com which is legal. Some of the docs that have posted info on the cdiff site are convinced you cannot get rid of cdiff, especially if you're relapsing, without antibiotics, and some believe you have to follow that with a complete "gut bug" infusion of good bugs to be able to finally overcome the cdiff. So go have a read and see what you think.
Sounds like you may be having the dreaded 3 month relapse, a bit early. For some unknown reason, this does happen to some. Azulphadine, based on feedback, is the best medicine you could be using. It's what I used for years prior to the SCD, and gave up 1 year after I was symptom-free on the SCD (even then against Dr.'s advice). What dose are you on, high or maintanence? You might talk to your doc about upping it, if you're just on maintanence. As for preds, we all hate using it, but sometimes it's what you need to get the inflamation back under control. Rowasa did little for me, probably because I could never keep it in long enough to do any good. But if it helps you, use it. It is not anti-SCD. I wouldn't however, use the "Colon Comfort". I've looked it up and it has a bunch of SCD-illegals in it. Many have pulled out of the flare, so there's no reason to think otherwise, especially in light of your progress.
My reflux cleared up quickly with SCD. I think the yogurt did the trick. Sorry it hasn't worked for you yet. If you can find a willing doctor, you can get your parasites treated. I'm surprised you were diagnosed but not treated. Even the bacteria if necessary, I think, though the yogurt is quite effective for restoring bacterial balance. Treating for parasites (and maybe bad bacteria) would let the diet work better for you and maybe give you some relief. They can treat the parasites with medications or with herbs - there are some options. I've never read that SCD will clean up parasites by itself. I don't know for sure if your off-diet meals directly caused six weeks of problems. I do know that the gut is a dynamic system, always in motion, always processing. When its equilibrium is upset, it can take a long time to regain it.
IBS can be exacerbated by stress but also causes stress. I basically have developed IBS as a result of medications I have (and maybe the one I currently am) taken for bipolar disorder. Depakote most notably caused problems for me.
After IBS developed, I began to get scared whenever there was any pain in my abdominal region. A year later, I get this fear just from eating something that I thought didn't agree with me in the past. For instance, when I had a slice of cheddar yesterday, I didn't get cramping or gas, but I felt this kind of stomach-panic that I usually associate with both of those things.
So is that a basically needless psychological response (that can make things worse), or is it indicative of something actually happening in the abdomen? It'll take more time to tell, I think. When I really concentrate on eliminating these kinds of fear, I seem to be able to handle more food without problems.
Question: I have heard some people need to take immunosuppressant for Crohn's, what does your experience and knowledge say?
The Crohn's disease process is characterized by inflammation and ulceration of the digestive tract (anything from your mouth to your anus). Inflammation is an immune response. So - Crohn's treatment should, intuitively, be directed at controlling the inflammation and removing the cause of the inflammation and ulceration. SCD is the "removing the cause of the inflammation and ulceration" part of the treatment. For many, however, it is also necessary to control the inflammation for a time, in order to facilitate maximum absorption of nutrients... which is what the diet is about (for a further explanation of the reasoning behind this.. read the book)... and allow for healing.
- Aminosalicylates (sulfasalazine and 5-ASA) are anti-inflammatories. - Prednisone and budesonide are immunosuppresants/immunomodulators... and therefore anti-inflammatories. - Methotrexate/Amethopterin and Leflunomide (Arava) are immunosuppresants/immunomodulators... and therefore anti-inflammatories. - Azathioprine (Imuran), 6-mercaptopurine (6-MP and Purinethol), and Cyclosporine A (Sandimmune and Neoral) are immunosuppresants/immunomodulators... and therefore anti-inflammatories. - Infliximab (Remicade) is a biologic... a chimera containing a targeted mouse antibody that works by blocking the immune system's production of tumor necrosis factor-alpha (TNF-alpha), a cytokine that intensifies inflammation... and is therefore an anti-inflammatory...
There's lots of information here which should give you a good place to start researching online.. go to www.google.com and type in the various drugs for more information on them... Elaine has always said that the diet is not a replacement for medications when they are necessary.... and when symptoms are acute and inflammation is rampant, the diet can only do so much until that inflammation subsides to the point where digested nutrients can be absorbed... that's what the book is about, so explanation of the processes involved can be found there.. for the Cliff Notes, go to the Getting Started section of www.breakingtheviciouscycle.org and look at the Science Behind the Diet page. It's all in the book.
From Elaine: Note: 1 mg of folic acid per day <<<Over a million people in the United States have IBD and even more have polyps in the colon. Therefore, it is not surprising that these two problems can occur in the same person. In a person without IBD, colon polyps can be removed by colonoscopy and snare cautery. A snare is a device placed through a colonoscope that cuts and burns away the polyp so that it will not grow into a colon cancer. Until recently, IBD patients were not advised to have just their colon polyps removed. Because of the high risk of cancer in IBD patients with pancolitis (inflammation of the whole colon), most physicians recommended the entire colon be removed rather than just the polyp itself.
Of course, most patients and doctors were not happy with this recommendation. It seemed silly to remove the entire colon for just a single polyp. Two recent studies showed that in IBD patients, it is safe to remove the polyp and not the whole colon. Engelsgjerd  et al. reported on 34 patients with chronic UC, all of whom had a colon polyp removed. None of these patients had other precancerous lesions in the colon. After an average of 3.5 years of follow-up, about 50% of patients developed further polyps and none developed colon cancer. Eight patients had their colons removed and no cancer was found.
Rubin et al.  found similar results in 48 patients with Crohn's and ulcerative colitis. Seventy polyps were removed in 48 patients. Subsequent colonoscopies (average follow-up 4.1 years including 17 patients observed for more than 5 years) revealed additional polyps in 48 patients but none showed cancer. These two studies showed that polyps can safely be removed in IBD patients.
In addition to polyp removal, regular colon cancer surveillance must still be done. For patients with 8 years of ulcerative or Crohn's colitis, colonoscopy and 4 biopsies at 10-cm intervals throughout the colon should be performed. Biopsies should be taken around polyps, strictures or from masses if present. Surveillance colonoscopy should be performed at least every two years and more frequently if polyps are found. If a precancerous lesion is found that is not a polyp, it is usually recommended that the colon be removed.
In the future, there will likely be stool tests that can determine if there are precancerous changes in the colon without actually doing a colonoscopy. This will help determine which patients need colonoscopy the most. To prevent colon cancer in IBD, the most helpful medications are folic acid (1 mg/day) and medicines such as 5-ASA agents that keep the inflammation under control.
1. Engelsgjerd M, Farraye FA, Odze R. Polypectomy may be adequate treatment for adenoma-like dysplastic lesions in chronic ulcerative colitis. Gastroenterology 1999;117:1288-1294.
2. Rubin PH, Friedman S, Harpaz et al. Colonoscopic polypectomy in chronic colitis: conservative management after endoscopic resection of dysplastic polyps. Gastroenterology 1999;117:1295-1300.
From Elaine: I can't help you very much. All I know is that amoeba feed on carbs, especially undigested, unabsorbed starch. A bacterium such as Clostridium (we are taught) feed on protein. When it comes to parasites like amoeba, I think SCD should help. However, there are specific medications that are used for parasites and your medical doctor should know what they are. If he does not, it is very sad and you will have to go to a search engine. Just type in the name of the parasite and see what comes up. I have not read Hulga Clark's book on parasites. I have a faint recollection, however, that her protocol is quite complicated and expensive. But anything to get rid of pain.
From Elaine: Slow peristalsis is not why overgrowth is occurring. If you have my book, I tell you that overwhelming the digestive system with starch and certain sugars (not natural to the human being to be eating all that) you are causing overgrowth. The medication which is given to slow down peristalsis has proved to be dangerous; in fact, there have been some deaths from it. Breaking the Vicious Cycle explains that the bacteria migrate from the lower intestine to the upper. Vivonex has been perverted and is illegal; it contains starchlike molecules.
My doctor said that he has nothing against restriction for lactose, wheat, and sugar, but to eat other grains is healthy because of B vitamins and folic acid. He also said that this kind of diet is for people whose symptoms cannot be controlled by medications and I am not one of them. (All together my symptoms like bloating, gas and watery diarrhea.)
From Elaine: As a biochemist, I can tell you that the added B vitamins in bread are a joke. Firstly the addition is Dark Ages in that the B vitamins work as a team to convert calories to cellular energy and the 3 that are added to grain products are just not going to do it. You need the whole team to score a touchdown (as listed in BTVC). Secondly when you subject B vitamins to heat, you destroy them so, again, all he told you about these vitamins is mythology. Furthermore, the fact that the drugs are not controlling the disease very well (side effects, lack of efficacy) has generated the need of this diet. But I do understand that it is good to have faith in your doctor and if he can give you what you need, why use the diet?
I had several young patients who were on Accutane for acne and who experienced severe side effects and depression!!
At long last the truth about certain medications is coming to the surface! Please share around. -Veronica Griffin, Ph.D
If a person following SCD doesn’t improve, it’s highly suspect the person may be infected with Clostridium Difficile. Read about C. Difficile at http://www.breakingtheviciouscycle.org/faq/cdiff.html
The Nurse Practitioner July 1998
BY KAREN DEVEREAUX MELILLO, PhD, RN, CS
Department of Nursing and Coordinator
Graduate Gerontological NursePractitionerSpecialty
University of Massachusetts
Welcome to the list. Pentasa is a pretty common Crohn's med. We can't give you advice on medications as we're not doctors, but we'll give you all the help we can with the diet.
I was diagnosed with Crohn's in December 2000, but have been lactose intolerant since around the age of 11. I have no trouble eating SCD yogurt, hard cheese, or DCCC. You may want to start Rachel slowly if she hasn't been eating dairy. If she has leaky gut she may be sensitive to casein and if she reacts, that can be confused with lactose intolerance. This will often clear up as someone heals. Try DCCC or a little bit of hard cheese like Swiss to start out. Give her a little, wait a couple days to see how she handles it, and if she does okay, try again with a little more. If she does okay with that, then try her on a spoon of the SCD yogurt, using the same 'tactic'. The trick to the diet is adding things slowly, so that you can suss out the things that she tolerates and the things she has problems with. If you add too much at once, those connections can be hard to see. Last but not least, a food journal is invaluable, and it can be a way that Rachel participates by keeping track of what she eats and how she feels, herself. It will allow you to see reactions that can take a week or two to show up, that you might not otherwise recognize.
Last but not least, although as I said, we can't give you advice on meds, we can make you aware of things to watch for. The side effects of Pentasa can mimic the IBD disease process, and that's something to be aware and to discuss with your doctor if Rachel doesn't show consistent improvement over time on the diet. I can't tell you what's causing your pain, but gut inflammation can lead to some weird referred pain - Crohn's patients often experience shoulder pain - go figure.
Questions about these two drugs, 5-ASA (asacol, Pentasa, rowasa, and mesalamine) and salazopyrene (azulfidine)? There is lengthy discussion on the www.healingcrow.com site under scdwisdom. The question asked is about PABA and is absolutely the key to understanding the difference between these two drugs.
From Elaine: You know we do not want to give advice on medication as we are put in a precarious legal position as well as the fact that the answer is not a cut and dry one. For example, take the example of the person who has been on medication for 3 years and is still very sick. This would tell the person that the medication is not doing the trick. Ok, so the person continues the medication because he/she is too scared not to continue but starts the SCD. Well, bingo, in 2-3 weeks, the person is practically symptomfree. Well, if the medication had been prednisone, we really don't have a problem as to what to do as the physican knows it is wrong to keep a person on prednisone too long so the physician gets you off of it and since it wasn't working in the first place, all is OK. Well, the person gets to the third month on SCD and has a flare. What to do. Elaine and the list cannot tell you when the flare will subside but we do offer helpful hints like taking salt water enemas and going back on introductory for a few days to see if that helps.
If it does not, then the person must use their intuition (we cannot give drug advice) and with the doctor's approval, perhaps go back on a bit of prednisone. Often with SCD, this time around the prednisone gets them over the hump and all is well. I could continue to write a book on the various scenarios, but I don't have time nor do I know enough about each individual case nor do I want to give drug advice since I am fairly ignorant about drugs.
As you know medication is a decision we cannot make for you. However, it DOES NOT TAKE more than a few days, if that, for azulfidine (salazopyrene) to kick in.
Also, after a couple of months on SCD for some reason I have been able to reduce my thyroid dose down from 137 micrograms to 112 micrograms. I haven't been on this low a thyroid dose for years. The doctor says there could be a lot of reasons, but the absorption of the medication is probably better being on this diet.
Good luck! I take a lot of supplements too, but space them out through the day with my meals and it seems to work for me. Good luck!
From Elaine: …. it is very important for those on thyroid medication who go on SCD to make sure that you check after about 2-3 months on the diet as to whether or not you can decrease the thryoid medication. Otherwise, you will begin feeling sweating, having heart palpitations, etc. You know, we hear from people who are having some the later symptoms and we scratch our heads because we know that so many symptoms like that clear up with SCD. These very people DO NOT tell us that they are on other medications which may be superfluous when on SCD. Don't stop the medication, but surely check to see if it may be reduced. Eventually, many will be able to get off the medication, but don't do it suddenly.
It is not merely the fact that you are absorbing the medication better; it is because the intestinal problem caused malfunctioning of the thryoid in the first place.
I do think that some people get off their meds too quickly. I waited until I had a full symptom-free year behind me, and then I decreased my Azulphadine slowly. Even at that point, it was against my doctor's advice, but my body was more than ready and I had no negative reaction.
I also have UP. Have been on SCD for 11 months. I am about 95% better that I was a year ago. I really didn't start any major healing until 6 months in, and really didn't start feeling like things were going to turn around completely until month 9 or 10. I have followed the SCD 100%. Also I have tried to minimize meat (mostly fish and chicken, very little red meat, no pork, too much fat is attributed to many diseases) and have tried to eat as many veggies as possible (many salads – with olive oil only as dressing). Eat very few fruits, just bananas, apples, blueberries (nothing acidic). I quit all supplements and vitamins don’t trust any of them and anything that makes my system more acidic (Vitamin C) caused a flare. I eat Yogurt almost daily, and Lyo-san yogurt pills after meals. Only each cheese on special occasions (too much fat). No alcohol. No caffeine. I try to meditate / relax when I have time as well as have started yoga to rebuild my strength, and walk when weather nice. My gut still needs to heal more; I get worn out too easily, but it gets better each month (sick for too long). I took many baths to soak my butt when at my worst. UP and many of the diseases we all have can cause many additional complications below the waste – pain from intrapelvic muscles (pain in the genitals, perineum, bladder, urethra, lower back, anus, tailbone, high thighs – they can cause IC, prostrate problems, hemorroids, inflammation of the penis / vagina, etc). Often you may be 100% convinced you have a urinary or bladder infection of some kind, but it is really a trigger point in the muscles screwing with your head (you think you need drugs to stop the disease, but you don’t, because it is a muscle problem – contraction or spasm). If intrapelvic pain is present, hot baths and continual massage of everywhere under the waste is what helps, and yes even intrapelvic massage (intra vagina and intra anal massage). Your entire anal area many hurt bad, but massage can really help. I had terrible hemorroids which I massaged for months until they got better. I would recommend “The Trigger Point Therapy Workbook” by Clair Davies to each and everyone ($20 on Amazon). He talks only a little bit about this subject, but the entire book is helpful for all aches and pains people face. All I know is that you have to take charge of this disease and keep searching for the answers that solve your problems. Each one of us is different and must find what work for us. Just remember the more physical damage you have inside of you, the longer it will take to heal. That is why I personally will put nothing in my body that isn’t a 100% whole food (except yogurt pills). May God bless you. Tim
You can see about getting the mesalamine (active drug in Asacol) compounded with no illegals. That's what I do with my sulfasalazine and Rowasa enemas. Check your yellow pages to see if they have a compounding pharmacy in your area, and call and talk to them. I think mine mails prescriptions. customdrugs.com.
Our son was on 6-MP. I thought that was the same thing as Imuran. Sorry, if I misled you. He was also on a antibiotic. He was supposed to be on two antibiotics, but the pharmacist refused to fill one of the antibiotic prescriptions because it is not supposed to be given to those under age 18. I think it had potential to damage large, weight-bearing joints. So he was only on 6-MP and an antibiotic when we started the diet. He had been on Pentasa since diagnosis (approx 4 years). But one day, several months before we started the diet, the dr. said, "let's quit taking Pentasa." He gave no reason. I thought it was weird. The dr. had previously called it a maintainance medicine that he would be on the rest of his life. Our son was 14, weighed about 110 lbs. when he started the diet. We started tapering off 6-MP within a couple of days of starting the diet.
Happy to discuss IC with you. I know a little about it and also Proteus mirabilis, which usually is known for causing recurrent bladder infections which don't respond to antibiotics. For background on IC there are excellent articles at this web site: www.emedicine.com. Go there and do a search on "interstitial cystitis". One article states that IC is actually a description of symptoms, not a defined disease, and these symptoms may have different diseases causing them. Specifically, IC can have an infection by microbes actually present in the urinary tract (UT) or it can be an inflammation without any pathogens present ( or it can be all in your head, but I'm sure neither of us fits that category). I am assuming that you have seen a doctor and had some urine samples examined under a microscope or cultured. So you know for a fact that you do not have a bladder infection? Have you! ever had a series of bladder infections which kept coming back even after antibiotics? Have you ever been told that your urine pH was above 7 or even 8? Have you ever been given a bladder catheter in a hospital? Please consider these questions, because they might indicate that you have Proteus mirabilis, and the doctor may have missed it (hard to believe but it happens). If you have blood in your urine that you can see, definitely get to a doctor fast.
OK, if you don't have infectious IC, then you have inflammatory IC, like I do. My symptoms are basically swelling of the entire pelvic area, from anus to pubic bone. I had very swollen hemmorhoids and rectal fissures for the first year on SCD, but that has gone away the past 8 months. I used to treat myself for recurrent yeast infections until I found out it was an inflamed vagina, not an infection. That went away early in the SCD. Finally, I get IC, but only when my lower gut (ileum) is inflamed from a flare. It's always a later consequence of a lower gut flare from eating the wrong food (canola oil in the most recent case), but not from stomach flu or prescriptions. And it's getting rarer in the second year on SCD. I didn't tolerate acidic food, like vinegar, at all early in the diet, not because it bothered my bladder but because it caused D. My gut reacts very violently to dairy, and that only seemed to get worse with time on the diet, until I stopped dairy 8 months ago. I now drink diluted cranberry juice every day and eat cooked cranberries or blueberries frequently. The cooked cranberries seem to go further down my gut than the juice and improve my digestion and regularity. P. mirabilis doesn't like acidity or strong antioxidants, so I try to load my diet with foods high in antioxidants (cranberries, blueberries, and beets). I also use 1 mg of melatonin every night as a sleep aid, and it is the strongest antioxidant there is. Some people have gotten complete relief from IC symptoms using melatonin, but don't go higher than 0.5 or 1.0 mg, as your native melatonin hormone production may drop off. Some people claim melatonin is an immune stimulant, but I have seen no evidence of that in myself, and my gut reacts very violently to immune stimulants/modulators. I practice hatha yoga regularly, with a concentration on the hips and pelvic area. Even during IC it is very helpful do yoga, massage my sitz bones (the bones you sit on), and then put my legs in the air on a wall for about 1/2 hour. Stretching and applying heat to the pelvic muscles allows them to relax from constant tensing with the pain. I follow a rigorous cleaning system to keep Proteus from traveling from my gut to my urinary tract. If you are interested, I will discuss that off the list, privately. Hope this helps,
Jan Dye [firstname.lastname@example.org]
IBS/dairy?/celiac?/P. mirabilis SCD 20 months
In the middle of asking my doctor about my stomach issues, the NP asked if I was interested in Depo shots. I had to take a deep breath. I mean shheesh, is there any drug they won't push at every opportunity? I never even mentioned birth control. Must have some kind of sales contest going. Free pens to the first one to sell 10 Depo prescriptions or something. I think I will check out the book you recommened to Claudine.
The best birth control information I ever heard was when I discovered the book "Take Charge of Your Fertility". I think the author is Toni Weschler. It was on this list that I learned of it. It's great both for preventing pregnancy without hormones or barriers, and it worked great for us. It also worked great for helping us get pregnant when we wanted to. It's such good information that I would recommend it even if you're not at a point where you'd want to use it for birth control. I learned far more from it than from any other book or high school class.
I'll tell you my husband's experience but I am, in NO way, suggesting that you do what he did.
When he started the diet he was taking Asacol and after only a couple of weeks I noticed he wasn't taking it and I asked him about it. He said that he wanted to see if this diet really worked, I tried explaining to him that that's not how it worked and he needed to keep taking his meds. Talking to him is like talking to a brick wall, he just wouldn't take them and since he was
feeling better, I gave up. He's been on the diet for over a year now and been symptom free for,
hmm...10 months or so.
stayed on the diet, and then when you see your GI, you can show him/her how well you are doing and discuss decreasing your meds with him/her and if he/she's totally against it, you can decide what to do from there.
From Elaine: Dear Lisa, dear, dear kind Lisa,
You said “I really do want to respect the medical profession. I do believe it takes a real talent to absorb the knowledge to be a nurse/doctor/dietician. I believe it is a gift.”
Believe what you want about the talent and the gift; I think the nurses are often Florence Nightingales and deserve lots of credit. But scientists they are not! Again, the doctor is superb at crisis medicine. He is not very good about chronic disease except to write prescriptions. As for the dietitians, I will not comment.
I understand you wanting to get off the meds but you've been on the diet for such a short time, I don't think that it would be the best idea. I think it would be better if you stayed on them,
Based on the experience of people (and myself) on the list, the diet is a healthy way to help heal your intestines. The medications that you are on--6-MP and Pentasa are very potent medications. They are symptomatic, and will mask the symptoms so, while on meds, you have a false sense of being well. Does that make sense? There have also been many discussions on how long a person can safely take all of the medication without suffering from side effects. Adjust to the new food, you'll be amazed at what your palate will crave or find satisfying. My taste buds have completely changed. Have your mother buy Lucy's Cookbook, and make some of the recipes in it. Having a disease is a part of the adjustment, but how you think about yourself is the major factor. You are still wonderful you. You have not changed. Best of luck. BTW your true friends will understand that your health is the most important issue right now. Many people get stable on the SCD diet, and can later add carbonated juices, some very dry wines, and more "normal" type foods to their diet. It all takes time.
Sorry this post is so long, but I thought Elaine's info might be useful for the newer members.
2. "Go to
1. "The Asacol which contains only an aspirinlike antiinflammatory is of little effectiveness in 98% of all people (l00's) I've talked to. The azulfidine, altho it has some 5-amino-salicyclic in it also contains a bacteria fighter called a counterfeit of para-amino-benzoic acid which the bacteria are fooled into picking up and then not being able to make babies as a result. For years, it was believed that the sulfa compound in the para-amino-benzoic acid caused sensitivities; now the newer research is saying it probably is the 5-amino-salicylic acid. I do wish there were some ways for you folks to read this so I do not have to write it every day. "
All I can say about Asacol is please read Elaine's thoughts on the matter, and maybe consider changing to sulfasalazine (I think the brand is Azulphidine in the
But please remember - that is just "my" body! I certainly would NEVER presume to recommend to anyone to give up their meds! This is something you must decide with your doctor. These diseases are serious and we definitely need our doctors until we get ourselves very well healed. Yesterday there were several stories of medical mismanagement in the front pages of the paper here - one lady with Crohn's and one with UC - they both died. That sure made me realise how serious these diseases can become if not treated properly.
As some have also mentioned, it's hard to predict exactly what the effect of pregnancy will be on IBD. Some women flare; some experience relief. Some experience changes in their symptoms post-partum. I did. My symptoms got much worse. But this story has a happy ending: Within days of going back to the intro diet, I had my symptoms under control again. And I've improved steadily since then; I've been completely 100% symptom free for several months now.
Before I found out about SCD, my doctor, a proctologist, prescribed cortisone enemas. I saw a decrease in blood initially, but reached a plateau pretty quickly. After I started following the SCD, my mucous cleared up within days. I told the proctologist about the SCD, and he reiterated, "food has nothing to do with ulcerative colitis" (he didn't even qualify that with "I think" or "in my opinion" -- he stated it as fact!). So I found another doctor, who didn't think I needed to continue with the cortisone, since I was doing so well. I was not on any meds for 2 months before I delivered. But as others have mentioned sometimes medicine is helpful.
I was diagnosed last April, and I started following the SCD in June. Incidentally, I was diagnosed with gestational diabetes not long after I started the SCD. I was able to keep my UC under control and manage the gestational diabetes without insulin by eating SCD-compliant meals.
It's great that you found out about the SCD so soon after your diagnosis. It took me a few months.
I have had many discussions with cell biologist PhDs about this idea that glutamine turns to glutamate at will, and they all say that this is a misstatement, and are particularly critical of Russell Blaylock for making this error in his book. My thoughts on vitamin replacement are as follows: As you are following a very strict reduced carbohydrate diet with no grains it is imperative that you fortify with B vitamins. Also, in order to incorporate some of the nutrients that were in Ultra Clear GI, I have found a product by Thorne called AO Encap. It contains the following ingredients: -Reduced glutathione, L-cysteine HCL, Glycine, l-glutamic acid, vitamins B5, B6, B3, vitamin C, and zinc. These ingredients are also important as they will continue to upregulate the detoxification pathways in your liver.
*I wonder whether this has any implications, or if it is just an added detail. If we have B6 available does that mean the glutamine-glutamate pathway will be used?
But I was spending $500 on alternative therapy when I began SCD, and after factoring in yogurt starter, Lyson probiotics, and the Freeda Vitamins, I am now spending $7. And am the healthiest I have been. Wonder which one I'm choosing?
So I would not discourage one in trying the alternative route, and I think they have many good support systems, but the root seems to be helped through diet. And maybe after 16 years of suffering, you might try this basic approach. I know I will never go off this diet, and will never turn back. I know so much about alternative medicine, and use it for my kids, and when I have flus and colds. So I am grateful I have that knowledge now.
My point is, yes, all of these things have merit. And perhaps they work magic on some. Every one of the practitioners I went to promised success, or had someone that had been healed on their protocol. But it is obviously gut bacteria that are being managed by the SCD that is the source of the problem, and I for one, after years of starving, have never eaten so good.
It is now 6 months on SCd, and I weigh 152 pounds. I have NEVER had sustaining wellness, except when I went on SCD 7 years ago, got pregnant by accident, got off all medications, and then went off of it and had problems again. (Was following homeopathy and the psychic nutritionist's advice.)
Everything worked somewhat, some not at all (Molo-cure). I was 150 pounds before I was diagnosed, and in the last 16 years (except when I was pregnant), I never got over 142.
Without immunosuppressants, I would be dead. I'm currently using a chemotherapy drug, and injections of recombinant human DNA to suppress my immune system so that I won't become crippled by RA. At one point I would have lost my colon and ileum without the use of immune suppressants.