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Crohn's Disease Forum » Your Story » 20 years of UC


09-29-2014, 12:28 PM   #1
Kristina57
 
Join Date: Sep 2014
Location: Vancouver, British Columbia
20 years of UC

Hello,

I was diagnosed with Ulcerative Colitis 20 yrs ago, and was hospitalized 2x. After heavy prednisone and some rest, I seem to bounce back quite quickly, ate what I wanted, and was virtually symptom free for ~ 8yrs. Then all my symptons came back with a vengeance about 10 yrs ago, and since I had re-located, finding a g.i. was tough, the wait was long, and prednisone no longer worked, that scared me because it was always a go to when symptoms got bad.

I started experimenting with diet, and found some relief some of the time. It always flared up during stressful times, and I couldn't seem to manage my stress levels either. Talk about a vicious cycle, and then I found SCD! I didn't do the intro diet right away, but followed much of the advice, mostly no sugar, no carbs. I started cooking with almond flour and honey-what a difference! But then a few months later, my symptoms kicked up again, so I thought, I'm going to do this properly. I went back to the book and started the intro diet, learned how to make yogurt. I have been on SCD for 2 wks, but I feel worse then ever-tired, cranky, and lots of sporadic D-even more than b4. Is this still die-off? If it is, I'll relax and ride the wave.

I have to admit, that I am quite the caffeine consumer, watering down the coffee has been tough, and I am weaning myself off diet coke. I had one small handful of corn ships out of desperation, and a bit of cream in my coffee once, but didn't notice any unusual blips, but still I understand you have to be vigilant. I am enjoying the honey, but maybe too much? Also I am going to make goat's milk yogurt this week. The only violent reaction I had was to some cheddar cheese, so obviously dairy is a big one.

Thanks for listening to my story! And any suggestions will be appreciated!
K
09-29-2014, 03:50 PM   #2
Gail Jothen
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What is SCD. please?
09-29-2014, 05:28 PM   #3
Kristina57
 
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Hello Gail,

SCD is the Simple Carbohydrate Diet created by Elaine Gottschall for intestinal disorder. I found her book in the library, but you can purchase it on Amazon.com, called:"Breaking the Vicious Cycle". I am fairly new to it, so have been looking for some advice.
09-29-2014, 07:02 PM   #4
baistuff
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It is a radical diet without any peer reviewed published support of inducing or maintaining healing/remission in anyone, particularly adults. Since there is some evidence of certain diets helping in children, and Gottschall induced healing in a 5 year old, I will not comment about this diet and children.

It is also a diet which is ketogenic which could potentially be harmful in the short and long term, and also often causes weight loss, in a group of patients that certainly don't need weight loss.

Doctors, myself included firmly believe that diet is an integral part of the management of IBD, however it is highly individual, like any other treatment. A 5 year old with left sided UC, is not the same as 40 year old with small bowel disease, especially strictures/fistulas. The intestinal contents, bacterial flora, size of intestinal lumen, transit time is so variable at different points. To think that a one size fits all diet will fix everyone is scientifically naive, and actually dangerous. Also, the diet can be socially isolating to the patient, and make people fear food.


Some people may improve with the diet, most do not- especially where it really matters- on scope, under a microscope and on imaging. Some may report some symptom improvement which could be 1) the diet being somewhat effective 2) placebo effect 3) natural course of a disease which is up and down 4) other treatments

For anyone who tries this diet, labs, imaging, and maybe even endoscopy should be done prior to initiating it. You should be followed very closely by an MD and a nutritionist who have YOUR interests in mind, not some agenda, and you should have periodic follow up of objective criteria to measure progress. Like any other treatment plan, if after a a few months you have not improved, STOP the diet. The SCD fanatics will tell you everything you are doing wrong, when in reality, the simplest explanation is usually the correct one. It simply doesn't help most people.

Good luck, and either way, be careful
09-29-2014, 07:42 PM   #5
Gail Jothen
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Is SCD similar to FODMAP, please?
10-01-2014, 09:13 AM   #6
Kristina57
 
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I am not familiar with FODMAP, but to answer the doctor up there, there have been many cases in adults where SCD has helped, if not cured the individual. But it takes time, and I agree, it's different for everyone, you have to experiment. I am doing it because NO meds are working, not even the prednisone. The diet is strict, hard work, and yes in some ways socially limiting, but better than running the lou, bowling people over on the hour every lou, it's a matter of choice. I have been losing weight, but I needed to anyway. The other thing is supplements, lots of good vitamins will round out what you need to stay healthy. The other benefits I have experienced are a clearer mind, and increased energy-all good! I do agree that you must be supervised by a qualified MD, and certainly get your diagnosis there. If a pill works, then great! I will stay in touch with this site and keep anyone who's interested informed as to how the diet is working.
10-01-2014, 11:20 AM   #7
baistuff
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Anecdotes are not evidence. Simply stopping gluten may have been enough, or it could be just the natural course of those individual cases to go dormant. Please define "has helped." The treatment algorithm for IBD nowadays is all about mucosal healing. I do not recall seeing one study showing SCD in adults has induced or maintained mucosal healing.

All of the personal benefits you report can be placebo effect, or maybe the diet is indeed working for you, at least for now. But please don't throw words like cure around. For that, you would need to document 1) healing, 2) correction of the underlying host defect 3) ability to tolerate any and all insults to the gut- diet included- without re-triggering of IBD.
10-01-2014, 11:54 AM   #8
Kristina57
 
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I think if an individual has a remission, that is maintained, and flare ups are either nil or few, that person considers themselves cured, regardless of how they got there. I am not a doctor, nor do I claim to be an expert, I am simply exploring options. And yes, it can be placebo the mind is powerful, but I have heard of too many adult success stories with regards to the SCD diet to write it off. And if you read Elaine Gottschall's book, there is an in-depth scientific explanation coupled with documented cases that support the diet supports the natural healing, correction and after some time being able to return to a regular diet. IBD is still something of a mystery, and has emotional and stress factors attached. I don't think anyone heals from disease without changing some of their thought patterns as well as implementing medical help and medication.

Anywho, I say do what works!
10-01-2014, 12:12 PM   #9
2thFairy
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I think if an individual has a remission, that is maintained, and flare ups are either nil or few, that person considers themselves cured, regardless of how they got there.
remission, yes, but not cured.
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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
10-01-2014, 11:28 PM   #10
Lady Organic
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whether working or not, the top benefit of starting a diet is that it makes us stop eating all of that crap and junk processed food sold EVERYWHERE in restaurants and groceries. If only that is accomplished for any individual, its already a reason to celebrate. With groceries and processed food, we have become alienated from our human nature. We dont know how to cook and nourrish our body anymore. We put things in our mouth that look, smell and feel like plastic and we dont even realize its abnormal. Serious dieting brings us back to our true nature, when we were able to cook and prepare everything we needed.
Ive been dieting for 3 years, I am fallowed by a IBD nutritionnist, have testing to make sure Im not lacking anything; GI and nutritionnist always very happy with results. Eventhough I cant say my diets have helped me so far, I know I am making much more responsible choices than before. This will help me in the long run, not only for CD, but for my health in general. There is no way i am returning to what the average North American eats.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-02-2014, 10:32 AM   #11
UnXmas
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whether working or not, the top benefit of starting a diet is that it makes us stop eating all of that crap and junk processed food sold EVERYWHERE in restaurants and groceries. If only that is accomplished for any individual, its already a reason to celebrate. With groceries and processed food, we have become alienated from our human nature. We dont know how to cook and nourrish our body anymore. We put things in our mouth that look, smell and feel like plastic and we dont even realize its abnormal. Serious dieting brings us back to our true nature, when we were able to cook and prepare everything we needed.
Ive been dieting for 3 years, I am fallowed by a IBD nutritionnist, have testing to make sure Im not lacking anything; GI and nutritionnist always very happy with results. Eventhough I cant say my diets have helped me so far, I know I am making much more responsible choices than before. This will help me in the long run, not only for CD, but for my health in general. There is no way i am returning to what the average North American eats.
Stopping eating “junk” food is not necessarily a good idea. I experimented with diets that involved cutting out all processed food; they made me very ill, because the "healthy" stuff I was eating was full of fibre - raw fruit, lots of vegetables, nuts, seeds, etc. I also lost weight, which I really really didn't need to do.

My diet now relies a lot on processed foods, and it minimises my symptoms and prevents my stoma from blocking. I do eat fruit and veg, in certain forms that I can tolerate (fruit juice, pureed fruit, some very well cooked veg, etc.). I had surgery a few weeks ago, and when I've healed properly I plan to test out my new stoma with some more foods (I do miss fresh fruit sometimes!), but if it gives me problems, I'll carrying on as I'm doing now, having the supplements my doctor prescribes to make sure I get all the vitamins and other things I need.

I realise giving up "junk" food can have great benefits for some people, but for others - especially those of us with digestive problems - it simply is not the best thing to do. Diet is certainly very very important, but my current diet is equally as beneficial to me as a whole-food diet or the SCD is to others – perhaps even more so, as a low fibre diet is recognised by mainstream medicine as helpful in certain circumstances, and preventing stoma blockages is an objective result ; my previous stomas used to block very easily, so many fruits, vegetables, etc. would not just cause me symptoms, but risk actual harm as well. Natural does not always equal good or healthy.

Edit: I hope my post doesn't sound too critical. I just wanted to point out that in certain circumstances, processed food is necessary, and some traditionally healthy foods can have ill-effects, but I do recognise that a lot of people would benefit from eating less junk food.

Last edited by UnXmas; 10-03-2014 at 09:05 AM.
10-02-2014, 11:05 AM   #12
baistuff
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whether working or not, the top benefit of starting a diet is that it makes us stop eating all of that crap and junk processed food sold EVERYWHERE in restaurants and groceries. If only that is accomplished for any individual, its already a reason to celebrate. With groceries and processed food, we have become alienated from our human nature. We dont know how to cook and nourrish our body anymore. We put things in our mouth that look, smell and feel like plastic and we dont even realize its abnormal. Serious dieting brings us back to our true nature, when we were able to cook and prepare everything we needed.
Ive been dieting for 3 years, I am fallowed by a IBD nutritionnist, have testing to make sure Im not lacking anything; GI and nutritionnist always very happy with results. Eventhough I cant say my diets have helped me so far, I know I am making much more responsible choices than before. This will help me in the long run, not only for CD, but for my health in general. There is no way i am returning to what the average North American eats.



Let me see if I follow the logic here. Your diet choices have not improved your illness, but you are happy that your diet has made you healthier. Got it.

Do you use toothpaste? do you know what's in it? do you drink bottled water with all the BPAs in it?

Do you stand near a microwave ever? Do you ride in a car and stop behind another car where the exhaust is blowing right into yours?

Welcome to life. We are bombarded for foreign particles every minute of every day. You want to go back 200 hundred years and drink water from a well after the horses pissed in it, go right ahead.

We have a defect that caused us to get inflammation in our guts as a reaction to either food, medication, stress, or all or none of them or for another reason or for no reason. Stop blaming the farm in Iowa because it put the corn in a can with a preservative that 99.5% of the 6 billion people in the world can eat just fine.

I have a close vegan, organic, thin, friend who runs 2 miles a day, never touched a drink or cigarette who got breast cancer at 34. I've seen thin people have MI's. Nothing you are doing is a guarantee for any aspect of your health now or for the future. I just recently pre-op'd an 88 year old woman for a knee replacement with no meds, normal vitals and normal labs. She begged me not to tell her to quit her 2 packs per day she has done for the past 60 years.

I am glad your diet has made you feel better about yourself. But please don't tell others what is good for them and what to celebrate. I will celebrate that I am here, have an awesome family, part of the greatest profession in the history of the world, and I will celebrate that with my family and friends, in a fancy NYC steakhouse with a steak, some fries, a nice merlot and whatever else. You want to celebrate another way? Go right ahead.
10-02-2014, 04:07 PM   #13
Kristina57
 
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Doctor,

I think you have a very important voice in this forum, and the more I think about this "illness" UC, that is, the more I question a bunch of ideologies. I spoke to my mother who is a registered nurse, who thought the whole SCD sounded like a cult. She thought the idea of a two year detox was preposterous, the body can detox in 10 days, and the isolation of eating that way was really starting to depress me. She found the whole thinking anti-trustful.

There is a head set amongst us bowelly people, and maybe you have noticed this with other illnesses, but we are very self absorbed, and obsessed with our illness. It's been a few weeks that I have been on this stringent diet with no real change in symptoms, but I feel isolated, sorry for myself, sad, angry and deprived. I'm not sure there is just "one final answer/cure" to all this, but that's what I've been looking for. I thought SCD was it, because I had an initial good response, but that could have bee placebo, and wishful thinking.

I wonder if there isn't just a bit of hysteria in myself here, a bid for attention, a way to manipulate my environment....at any rate I've decided to drop SCD and enjoy life on life's terms. No meds are helping, and they are a fortune too, so have decided to not re-fill my prescription. We'll see if a calmer more grateful attitude helps things out a bit, as I have emptied my bag of tricks, and there is nothing more to do.

So thanks again for everyone's input.. all voices are important.
10-02-2014, 04:17 PM   #14
Lady Organic
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im in right to have my opinion and express it here. I am in right to celebrate any individual who wants to stop junk food. Some people celebrate people who are stopping smoking or drinking or using drugs,I am all in! . I am in my right to feel positive about my future and feeling 100% sure eating free of chemicals will have a better impact in my body than if i'd be using them and most of all I am in right to encourage the posters of this thread in this direction. Im in right to celebrate any individual who is stopping junk food.

Yes, there is a few % of population no matter what they will do, have perfect lifestyle, will still get sick, and a few % who'll smoke, eat bad, be overweight and live super long and healthy. Those are minority cases. For the vast majority of us, we all have little cancers slowly growing inside of us. Our lifestyle choices will orient the destiny of these tumors. The most deadly cancers in NA: colo-rectal, breasts, prostate, lung, etc are in the most part lifestyle related, epidemiologist doctors tell us.

I use glass for my food and drink, I dont use a microwave, I dont have a car. I dont use any commercial toothpaste (sensodyne recommended first by dentists is actually well known in ORL doctors to often cause issues in the mouth), creams, shampoos, I am aware about those chemicals. I even have my methotrexate injection magistral prepared every week in a special lab to avoid a part of the preservative inside. Everyday, I celebrate my new lifestyle au naturel. I have become so enthousiatically creative about learning food and cooking, coming from nowhere land, as all of my youth and yound adult life, I had never prepared any food and always relied on groceries and fasts food restaurants. Now my friends tell me I should become a chef, have a blog or open a restaurant. Maybe I can open a restaurant in time square some day so you can come and have a meal.
10-02-2014, 04:26 PM   #15
Lady Organic
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Whising you well Kristina, Ive been in deep search too, so many things I have tried. our journey in not over, as for any problem, there should always be a solution, a final piece to the puzzle, whether we or science find it. we must remain positive :-)
10-02-2014, 04:28 PM   #16
Kristina57
 
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Lady Organic,

I LOVE your post. You see, this is making you happy, and creative, and that's ALL that matters. You should open a restaurant, you'd make a killing, and have all the stars lining up. SCD was making me miserable, and lonely, that's why I'm giving it up. I really think the mind is the most powerful tool we have, and a positive attitude towards all of life good and bad, I think is what's right for me. That doesn't mean I'm going to be cavalier or irresponsible, but less resistant.

Thanks again! Diseases and obesity are on the increase, and the food we choose DOES play a roll. Enjoy!
10-02-2014, 04:35 PM   #17
Lady Organic
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I make sure you get VIP invitation to the opening
10-02-2014, 06:15 PM   #18
baistuff
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If being happy and creative are all that matters, then I agree, do what feels good. But to soapbox to others is wrong.

To call what others not only eat, but perhaps help them heal "crap" is insulting. Lady O- stop the preaching to others. You have no evidence of any benefit to your GI system. So you like what you see in mirror better on SCD, and smile more- Great. Continue on it. Don't pawn it off as a valid treatment for others and pray for others to follow your way as a way to celebrate.

I had a fecal transplant and recently had a 3 month follow up scope which was normal. No meds. Do you see me preaching to others to run and go do it? No. There is no evidence that it will work for others. I made a decision, based on my presentation, my history, a discussion with my GI and the PI of the study to enter the study. It was the right move for me at the time. I'll probably flare sometime soon no doubt, but it was an individual decision. I don't call other treatment plans "crap", I don't claim that everyone "is alienated from their human nature." Those comments are not only factually wrong, but offensive. My large extended family gets together at restaurants for celebrations and feasts. That is OUR human nature. We love them. We eat badly, but we laugh, toast, talk loudly and you know what? if i run to the can the next morning, so be it. I wouldn't trade those for the world. That's my human nature. If you prefer to measure out a teaspoon of oregano oil in nut flour and feast on that in a negative pressure aseptic room, then absolutely do it. 100% your right, and I really hope it brings you peace and joy. But please don't preach that to others that it will bring them true joy.

I wish you healing, control and happiness very soon, regardless how you attain it.
10-02-2014, 07:44 PM   #19
DustyKat
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Is SCD similar to FODMAP, please?
There are some similarities between the two but they are not the same and so are not interchangeable.

SCD = Specific Carbohydrate Diet

FODMAP = Fermentable Oligo Di Mono-saccharides And Polyols.

To all,

Please be mindful that this is primarily an adult personal experience and support forum, as such we are open to many treatments and ideas. Those ideas and experiences though need to be kept in the context of the individual and any advice given is purely that, personal.

If advice is portrayed as a form of treatment for IBD then it should be accompanied by supporting evidence via reputable links. If evidence cannot be supplied then the onus is on the poster to relay that what is being put forth as a successful treatment is their personal experience only. In cases such as this, as it is for all advice given here, posters should note for readers that others must do their own research and seek medical advice before making any changes to their current treatment plan.

Please refrain from using phrases such as this is:

For the vast majority of us, we all have little cancers slowly growing inside of us. Our lifestyle choices will orient the destiny of these tumors.
It is these sort of statements that cause angst, derision and division.

Lastly and by no means least, we welcome and encourage lively debate but in doing so ask that those partaking in the discussion remain respectful of each other and do not criticise the treatment plans of others. If someone chooses to go down the diet route then all well and good, it is not for those who don’t to criticise but it works both ways and criticism should not be levelled at those who choose not to include diet as a part of their treatment plan.

Dusty.
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10-02-2014, 08:34 PM   #20
Lady Organic
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Thank you Dusty and I agree.

however, I'd just like to clarify that this specific quote about cancer and lifestyle (nutrition, physical activity) was actually a quote from a conference of Dr Richard Beliveau. It was not intended to create division, or to pinpoint anyone, if someone felt offended, I apologize, but that was not my intention.

Dr Béliveau is Dr in epidemiology of cancer and cancer prevention. He is a sommity here in Canada. I wish the conference was available on youtube, I only have the recorded video in French. here are all his scientific articles which some very interesting including reviews that I shall post in the diet/research section of the forum eventually:

http://richardbeliveau.org/fr/richar...lications.html

Last edited by Lady Organic; 10-02-2014 at 10:44 PM.
10-03-2014, 05:02 AM   #21
tzvia
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"For the vast majority of us, we all have little cancers slowly growing inside of us. Our lifestyle choices will orient the destiny of these tumors"

Yes, even though a Dr. stated this, I can see how this is a one sided statement. It's true that we all do have cancer cells growing inside of us, but what normally happens is that immune system keeps those cells at bay, preventing them from spreading or forming tumors. And yes, lifestyle choices are definitely a piece of the puzzle when it comes to the formation of cancers (some more than others) We all know smoking increases cancer risk ....and avoiding exposure to chemicals in food and other products that are know carcinogens are smart choices that can make a difference in our health. But what the Dr is forgetting is another piece of the puzzle which is genetics. Some people who get cancer simply have the genetics for it, regardless of how healthy their lifestyle is. And some people eat crap and smoke and never excersize and they don't get cancer. So our "lifestyle choices" are not the only thing that orient the destiny of cancer cells in the body, and to say so would blaming every cancer patient for their disease. If I had cancer, I would feel offended by his statement because it would be like blaming me for my disease.

Lady Organic, I admire your drive and ability to stick with a healthy diet, free from chemicals and junk. While the diet might not prevent all IBD flares, cancers , and other illnesses, you are certainly making good choices about what you ingest and you are doing your very best to keep yourself healthy through diet. I'm glad you are feeling good, and may you continue feeling like that for a very very very long time.
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Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira


Last edited by tzvia; 10-03-2014 at 05:33 AM.
10-03-2014, 05:29 AM   #22
tzvia
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Kristina,

I do hope you feel better soon. I think SCD is a useful diet, but it doesn't work for everyone and not everyone can tolerate all of the foods included. For example, I have issues when i eat products made with nut flower. Also, SCD says psyllium is not allowed, but I find that to be helpful for my Crohns when I take it. So for me, SCD is a good starting place as far as making dietary changes, especially just cutting out foods that contain chemicals ,but you may have to make adjustments according to you own body. I find white rice to be soothing on my system, but it's an SCD no-no. Keeping a food journal can help. Working with a dietician can help. Also, for me, coffee and caffeinated sodas cause me huge discomfort, agony, and pain, so good luck as you cut those items out.

Last edited by tzvia; 10-03-2014 at 01:14 PM.
10-03-2014, 08:24 AM   #23
baistuff
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My training is not in psychiatry, but I will venture to say that the underlying theme of this thread comes down to one word. CONTROL. When it comes to our GI systems we have lost it. Truth be told (and this is not a religious statement) we really don't have any control over anything.

I think a lot of folks here want to feel like they can control what may happen to them. "if I eat/drink X I won't get cancer." When in reality, no of us can predict the future. However, if it makes you smile in the mirror thinking you have re-exerted control in your life, then by all means, go for it.

For me, "responsible" choices are ones that can be backed up with some sort of evidence. That doesn't mean I don't believe thinking or doing things outside the box, but those are individual choices, each with its own risk/benefit analysis. And though this is a great forum to present results from these choices, you will never hear me preach about anything that others MUST do that cannot be proven.

For others to get on a forum of sick and in some cases desperate people, and claim to have answers as how to prevent cancer, or that the only way to contentment is to cut out all non SCD food, well, as someone whose job it is to protect patients, I will ABSOLUTELY and passionately call out statements like that. They are dangerous, especially in this setting. Feel free to come to the big apple and tour one of countless hospitals with really sick people who did nothing "wrong" by Lady O's standards, and watch the number of drinking, smoking drug shooting folks running around with no health issues.

THERE ARE NO GUARANTEES IN LIFE. Yes, make smart choices, be repsonsible, but don't preach that you have all the answers. You don't. I don't. I think once we realize we don't have the control over things we once deluded ourselves into thinking we did, we can make peace and accept things that happen to us. It's a struggle, it's not easy.

Best wishes to all.
10-03-2014, 10:36 AM   #24
Tesscorm
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I agree that the discussion in this thread and many others do come down to the desire to exert some control, however, I do believe we can exert 'some' control. When my son was diagnosed, I was blindsided by the dx and, having no knowledge of crohns at all, I had no choice but put my son's health and future completely in the hands of strangers (albeit,, thankfully, knowledgeable and experienced strangers ). I'm sure many others have felt the same frustration and fears. While I can't control all aspects of his illness, I can, perhaps, have some control over the path it will take.

Diets, supplements, treatments, lifestyles, etc. will all have some impact. None will cure but, no question, they will have an impact and that can be controlled somewhat.

For various reasons, I don't agree that all I have read will help my son but believe some will and have incorporated some supplement and lifestyle changes. Of course, no guarantees but I believe the changes improve his 'odds' and, emotionally, which is also a factor in being healthy, it helps me deal with the illness (and, if it helps me, as a bystander/mom, I’m sure it also helps those dealing with the illness directly).

However, I do very much believe that using words such as cures or statements alluding to guaranteed remission are unfair. I've spent LOTS of time trying to learn, etc. and think I can now form semi-knowledgeable opinions about treatments, supplements, diets, etc., however, this is three years later and while not in a desperate state. Misleading statements can add risk, treatment delay and emotional distress to those who are only beginning to deal with their illness and, even if given with the best intent, may cause more harm than good. If something has worked for you, by all means share! Without everyone sharing their experiences, I wouldn't have the knowledge I now have! If it did work for you, it will likely work for someone else but, we all need to remember it won't work for EVERYone else and shouldn't be portrayed as a cure-all.

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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
10-03-2014, 11:50 AM   #25
Kristina57
 
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Location: Vancouver, British Columbia
Tesscom; Blessings and healing for your son.

I agree with the thread issue is CONTROL. I have not met ONE IBD sufferer who didn't have control issues, and I include myself in this. Whether it's a total lack of control (total abandon at a party, eating, drinking everything in sight), or a fanatical obsession with diet, and pure living....it's just the flip side of the same coin, in my uneducated opinion.

The other thing I've noticed is that there's a bit of hostility in the exchanges...also something I've noticed with IBD people. I would invite contributors to this forum to remember that we are all adults and we can take anything, anyone says with a grain of salt. No one needs to slap anyone on the hand for their opinion. I came to this forum for advice and support, knowing I may/may not agree with all that is said. This is public after all. It would be like going to the market place on a Saturday, and telling everyone to be quiet because it bothers me!

Anywho, back to SCD, I couldn't manage the level of restriction and work involved-I work full time, two jobs in fact, am a single Mom, it just wasn't realistic. BUT I would have made it a priority, if a remission occurred, but it didn't. I've introduced a few carbohydrates to my diet, and there has been no change. So I think I had a psychological response initially. However there are some SCD recipes that genuinely tasted good, and gave me lots of energy, something I will keep.and I learned how to make my own yogurt! So not all was a lost effort!

Thanks TSVIA for your warm wishes, I think that more than anything else is what really helps me here.

Thanks to all!
10-03-2014, 12:04 PM   #26
baistuff
Senior Member
 
Join Date: Sep 2014

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Tesscom; Blessings and healing for your son.

I agree with the thread issue is CONTROL. I have not met ONE IBD sufferer who didn't have control issues, and I include myself in this. Whether it's a total lack of control (total abandon at a party, eating, drinking everything in sight), or a fanatical obsession with diet, and pure living....it's just the flip side of the same coin, in my uneducated opinion.


The other thing I've noticed is that there's a bit of hostility in the exchanges...also something I've noticed with IBD people. I would invite contributors to this forum to remember that we are all adults and we can take anything, anyone says with a grain of salt. No one needs to slap anyone on the hand for their opinion. I came to this forum for advice and support, knowing I may/may not agree with all that is said. This is public after all. It would be like going to the market place on a Saturday, and telling everyone to be quiet because it bothers me!

Anywho, back to SCD, I couldn't manage the level of restriction and work involved-I work full time, two jobs in fact, am a single Mom, it just wasn't realistic. BUT I would have made it a priority, if a remission occurred, but it didn't. I've introduced a few carbohydrates to my diet, and there has been no change. So I think I had a psychological response initially. However there are some SCD recipes that genuinely tasted good, and gave me lots of energy, something I will keep.and I learned how to make my own yogurt! So not all was a lost effort!

Thanks TSVIA for your warm wishes, I think that more than anything else is what really helps me here.

Thanks to all!

Very well said. Again, the hostility is not about the opinion. It's about preaching to others, the judgemental tone with those who don't buy in to what one person does. Many here are vulnerable, desperate and it's irresponsible to preach they must do this and this to find happiness, health etc... Someone wants to go live in a bubble forgoing all technology and live in the wilderness. Great. I hope they find peace with doing it. But don't tell that's what I need to do to attain the same thing.

If I came on here and said "whoever doesn't get a fecal transplant is a blooming idiot" I hope I would get called out. It would be irresponsible.

This is CERTAINLY the forum to report on personal successes and failures with out of the box methods. Just avoid the preaching.
10-03-2014, 05:44 PM   #27
Kristina57
 
Join Date: Sep 2014
Location: Vancouver, British Columbia
I've heard of the fecal transplant having quite a good success rate, but don't quote me-I don't know the stats! But it makes sense, you are reintroducing healthy stool activity to an unhealthy environment saying " Hey, remember me? This is how we really do it!". I am glad you are experiencing better health at this time baistuff, and wishing you continued good health.

Thanks.
10-04-2014, 10:11 AM   #28
UnXmas
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Join Date: Oct 2012

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· Stoma

The other thing I've noticed is that there's a bit of hostility in the exchanges...also something I've noticed with IBD people. I would invite contributors to this forum to remember that we are all adults and we can take anything, anyone says with a grain of salt. No one needs to slap anyone on the hand for their opinion. I came to this forum for advice and support, knowing I may/may not agree with all that is said. This is public after all. It would be like going to the market place on a Saturday, and telling everyone to be quiet because it bothers me!

That's not quite true - there are plenty of kids reading and even participating on this forum. And even among the adults, there are probably people who for whatever reason will be persuaded to follow ideas they read on this forum. If someone voices an opinion that isn't based in fact, it needs to be clarified. Not all opinions are equal in that respect.

When I was a teenager, although I was very intelligent, I was still desperate enough and gullible enough to follow the advice of various alternative health practitioners and, yes, things I read online when it came to diet, supplements, alternative remedies, etc. Doing so not only didn't help me, but had significant negative effects, worsening my physical symptoms and making me horribly depressed.

Not everyone is capable of assessing advice and determining for themselves whether it is good or not, so I think when people on this forum express their opinions, they have a responsibility to try to make sure they state clearly on what basis their opinions have been formed.
10-04-2014, 01:37 PM   #29
Jennifer
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Join Date: Jan 2010
Location: California

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I think we've exhausted the fact that members should not preach that what works for them will work for everyone and to please be respectful of others, so I won't really get into that and will just bring this thread back on topic.

Kristina57 have you had any scopes done recently to assess your condition? Are you currently on any medication or do you only use Prednisone when you have symptoms?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-06-2014, 12:35 PM   #30
Kristina57
 
Join Date: Sep 2014
Location: Vancouver, British Columbia
Hi Jennifer,

No, no scopes done recently, and no meds. I wend to see a G.I. last year and had some bloodwork done. Everything looked good, but registered a low-grade inflammation, and was given a very expensive, lower GI anti-inflammatory, which didn't help. Meds a re not working, even prednisone, so have given up. I have tried multiple diets including SCD, and yes feel great as many attest, but no change in symptoms.

All this to say, is that now I am letting myself eat a healthy diet, with the odd treat. And you know, since my attitude has settled down, so have my symptoms. Not sure if it's coincidence or what. Like the good doctor said above, there are no guarantees in life. I feel I have been responsible in going to the doctor, and investigating diet, but in the end, what seems to be helping me most, is a change in attitude, but I would not advocate that for others.

Glad to see you enjoyed a 14 year remission!

Take Care, and continued good health!
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