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Posted 7/2/2011 6:03 PM (GMT 0)
I know i posted a while ago about having a colonoscopy done on the 5th of may. I was really worried about doing it but decided to do it. The thing is, that the colonoscopy got cancelled. Reason is a bit confusing.

I was booked on the 5th but unfortunatly i didnt have a ride to the hospital so i asked if i could move the date to the 9th of May. They said yes. I then forgot to ask them what time so i called them back about 2 days later. The NHS then said my date was on the 5th of may and it could not be changed.

So i then booked off work, got my mother-in-law to agree to drive me and thought everything was fine. I did ring them again just because i wanted the time confirmed again. They then said it was not on the 5th that it was on the 9th at 10.00am. Now, I already booked off work for the 5th and I was really annoyed. I was polite, and explained why I had put the dates back in the first place, as the original date was in January and I wanted to give my natual program more time.

So here it is. They refered me back to the GE doctor and i have to go see this doctor and im nervous. I do want the procedure but i dont know what he is going to say about this natural program. I dont know if he is going to like it or if he is going to want to book me for another date. I just dont know what he is going to say. I know they do not support natual programs. Even so i dont want to not have them treat me. I feel that it is so difficult to make the medical industry and the natual industry work together.

and im on no meds. I have made alot of improvemnts. although im still on a very strict diet.

i dont know, what would you guys say to him?

Posted 7/2/2011 6:18 PM (GMT 0)
How are you feeling? If you're doing well, I would tell them that you're only interested in doing the procedure and that you will consider medical treatment in the future if necessary but right now you feel like you're making improvements with diet and supplements. It's your choice. You don't have to do what a doctor recommends.
Posted 7/2/2011 8:15 PM (GMT 0)
Thanks notsosicklygirl. that is helpful. my husband gave me a letter which came in the post this morrning. They have put my appointment back, for some reason. they cancled it on me. They booked me one for the 26/09/2011 that is when they will see me. Well i guess it gives me a couple of months. I will see if I can get rid of any blips of mucus. I was shocked to see that they put it back so far but then its the british nhs so unless i have an emergecy i wont get to see him now till sep.

I think when i see him i will tell him im ready for the colonoscopy I really think by then they will see no sign of this illness. I really beleive that. (if i can still keep up this diet)

I am honestly sick of this strickt diet. i dont know how long i have been doing these natual things but i really want to include someting else in my diet. my diet has been like this for about a year and a half the diet goes like

4 eggs for breakfast
green smoothie made with spinanch

chicken salad for lunch

bolognaise with veg and its made with peppers not tomatoes

sometimes some nut muffins ( i also eat macadamia nuts) (scd diet muffins with no honey)

maybe 1 apple (no more fruit than this)

I do switch some of the meats sometimes ( i seem to not have any problems no matter which meat i eat)

i add some chillis and garlic sometimes.
Posted 7/2/2011 10:24 PM (GMT 0)
Hi hellokitty

Sounds like you started your "diet" about the same time as me since I am 1.5 years on mine. For a while I was bored with my allowable snack foods but when I was able to add 1 pear a day and a few other foods I got happy again. Oddly some apples are too strong for me although cooked is OK (I'm just a bit too lazy to cook them).

I've gotten very creative with meat and seafood (today made a seafood soup with clams, mussels, a few shrimp and a bit of fish. The broth is to die for).

Guacamole with garlic and a bit of lemon is sooo delicious. I don't even miss the chips part if I have some chicharones (bacon rind puffs). But it tastes good with veggies too.

I make biscotti with almond flour and whole walnuts once a week for my daily tea-time snack.

I just read something that I never knew before: garlic loses it's antibiotic/antimicrobial effect once it is cooked. And here I thought cooking with it was good for me. Now I make an effort to put some fresh garlic into whatever I can (guacamole, mayonnaise, etc).

My colonoscopy is due for scheduling September or October after we get home from a trip. I look forward to the results because I know how much better my UC is than before starting my version of SCD diet modification.

However I'm very intrigued by the fecal bacteriopathy that sas has done (earlier thread) and keep thinking about how to get to Rochester NY and combine my colonoscopy with that procedure since the c-scope is part of it. I'm going to talk to my GI at my July appointment and tell her what the NY doc is doing and see if she might be interested in it too. I mean it really is not rocket-science with the procedure, just takes a little guts on the part of the GI.

Unlike you I still take Rx meds and would like to be free from meds completely, be cured in other words and that is what the procedure could do. A cure is possible, I believe that in my heart. Or I could become as brave as you and quit meds (since they didn't do anything beneficial before starting SCD).

Good to hear from you. Keep up your good work.
Posted 7/3/2011 12:13 AM (GMT 0)
would like to be free from meds completely, be cured in other words and that is what the procedure could do

No, you cannot be cured! We need you here on this forum otherwise the newbies will only hear stories from their doctors and pro-med UCers here that diet modification has absolutely no effect on their UC. They could remain in horrendous flares for years before trying to see if diet works for them. devil

Just kidding, hope you find your cure. You deserve it.
Posted 7/3/2011 12:53 AM (GMT 0)
hahahahahaha.

You're still here.:-) You tell the story. Go tell it on the mountain, over the hills and every-wheeere.
And there are more like us, hellokitty for example.

There are likely thousands and thousands who've used diet modification to get better, it just isn't being publicized because absolutely no one makes any money when people get better through diet modification instead of a lifetime taking expensive Rx meds. (who me? cynical?)

It is so heartening to read that a US doctor is starting to do a simple procedure that could help so many. That, to me, is a real cause for celebration. Maybe I'll go shoot off some fireworks.
Posted 7/3/2011 10:44 AM (GMT 0)

Hellokitty said...
[clip]

I am honestly sick of this strickt diet. i dont know how long i have been doing these natual things but i really want to include someting else in my diet. my diet has been like this for about a year and a half the diet goes like

[clip] .

HelloKitty,

I'm sorry to hear about your problems. At times this disease of ours is difficult to deal with. Nothing works, and the worst part is the nonexistent communication between the patient and the doctor - especially if you want to go your way after long contemplation what is best for you (knowing your body better).

I really wanted to just support you and mention this fact: my diet is not strict: I'll eat anything, except meat. Like every person, I have my likes and dislikes, but in general, I eat everything sans meat. I'd go as far as claiming that my diet is more extensive than a 'normal' person's menu would consist of, because I've had to earn to eat with a plan to cover all the basis nutrition wise.

My family's nutritional facts have been testes two times by university, once in Switzerland and once in Norway, and both test came back showing that from our baby to all our children and us parents, we exceeded the nutritional norms; i.e. our diet was diverse enough to be healthy for all. Since then we have added a lot of new food to our diet.

So, when people ask me what is a vegetarian diet, my response is: everything you can imagine sans the meat. That is a lot.

To be fair, there are food I must avoid due to UC, from popcorn to alcohol, but I've learned to live with it.

I've tried many very strict diets during my life, and while they were beneficial, they weren't practical. I'm certain the diet has been the most important factor in that I'm still running around, doing what I do with long remissions.

Hopefully you'll find what suites you the best.

Yup, tell the doc that you are doing better and going to the right direction.

All the best.
Posted 7/3/2011 9:31 PM (GMT 0)

imagardener2 said...
However I'm very intrigued by the fecal bacteriopathy that sas has done (earlier thread) and keep thinking about how to get to Rochester NY and combine my colonoscopy with that procedure since the c-scope is part of it. I'm going to talk to my GI at my July appointment and tell her what the NY doc is doing and see if she might be interested in it too. I mean it really is not rocket-science with the procedure, just takes a little guts on the part of the GI.

Hey imagardener2 i have heard of this and have wondered why it works. I havent really read alot about it but im presuming they are just adding good bacteria back in to you which rebalances your own. I know i had a problem with bacteria and i have very little good bacteria. I had my poo tested by a lab and that is what it said. Im now doing a probiotic course to try to add it.

 

Also thanks for letting me know about the garlic i didnt know that. i do add a bit of garlic but i cook it as well.

 

Just also wanted to say that yea im making it with out meds but im not cured. if i stop doing what i am doing right now it will come back. Also by doing so many natual things i have learnt that diet alone will not work. i think you can do diet and meds or diet and a program of some sort. Im doing a pacific program. I dont really want to post too much about it yet as it does cost money and i want to see if it works. It has made me alot better and is a big part of why im not on meds, but im not cured and im still on a very strict diet. All this natual stuff alos has made me realize how different every one is. I still suprised to hear from people who have done a diet  and are able to add carbs with in 6 months. Well that is not me

 

Posted 7/3/2011 9:48 PM (GMT 0)

KiWi44 said...I've tried many very strict diets during my life, and while they were beneficial, they weren't practical. I'm certain the diet has been the most important factor in that I'm still running around, doing what I do with long remissions.

Hopefully you'll find what suites you the best.

Yup, tell the doc that you are doing better and going to the right direction.

All the best.

 

Hi Kiwi44 thanks for your responce. You are right that there are different things that work for every one. i dont know why that is but it is true. I was a vegetarian before i went on this diet, but i always had the bleeding and i had my worst flare even though i was not eating meat. it took me ages to find out about candida and other harmful micro-organisms. when i found that out i added meat into the diet and cut the sugars. it really helped (not cured) but made an amazing difference. the only thing im doing with my diet is starving the candida. then i will be adding probiotcs to try and rebalance the bacteria in my body. The program im doing doesnt beleive in crhons or colitis they beleive it is an imbalance in bacterias. We'll see. I also keep reading that the medical industry thinks that crohns and colitis means that your immunitiy attacks the bacteria in your colon as it does not know what to do with it. My question is that if that was true then woulden't the UC come back when you add probiotcs as it is a bacteria?

I'll see im not sure why they say that

by the way i know this is a dumb question but, how do you quote something and box it with out using several boxes like i did?

 

 

 

Posted 7/3/2011 10:40 PM (GMT 0)

Hellokitty said...
by the way i know this is a dumb question but, how do you quote something and box it with out using several boxes like i did?

This is one way. There is a small icon on the upper right of every message that is to the left of the red thumbs down icon. When you press that icon it starts with a left bracket [ and then the word quote and then closes with the right bracket ]

At the end of the quoted post it ends with the same left bracket but puts a slash / before the word quote and then right bracket ]. That tells the HTML gods that the quote is ended. you can take out any bits not needed inside the quote/end quote brackets (the way I edited your post down to one sentence.) that way you wont annoy people who don't like to see entire posts re-posted. we know who they are :-)

you can try it out as many times as you want by using the "Preview" button so you can see if you got it right.

p.s. not a dumb question at all.
Posted 7/4/2011 10:01 AM (GMT 0)
[quote]This is one way.[/quote]

Just a test!

Posted 7/4/2011 10:09 AM (GMT 0)
Strange, I typed as described (my husband has also used this method, but we couldn't get it to work the other day), and it did not convert to a proper quote.

ALSO, when I use the quote button, the quoted section appears as an HTML quote in my reply, and the cursor is stuck in the quote box. The only way to type outside the box is to press return, which adds a second box (as in my posts above).

It all seems to be working backwards!
Posted 7/4/2011 10:36 AM (GMT 0)

Hellokitty said...


Hi Kiwi44 thanks for your responce. You are right that there are different things that work for every one. i dont know why that is but it is true. I was a vegetarian before i went on this diet, but i always had the bleeding and i had my worst flare even though i was not eating meat. it took me ages to find out about candida and other harmful micro-organisms. when i found that out i added meat into the diet and cut the sugars. it really helped (not cured) but made an amazing difference. the only thing im doing with my diet is starving the candida. then i will be adding probiotcs to try and rebalance the bacteria in my body. The program im doing doesnt beleive in crhons or colitis they beleive it is an imbalance in bacterias. We'll see. I also keep reading that the medical industry thinks that crohns and colitis means that your immunitiy attacks the bacteria in your colon as it does not know what to do with it. My question is that if that was true then woulden't the UC come back when you add probiotcs as it is a bacteria?

I'll see im not sure why they say that

HelloKitty,

First off, probiotics are good bacteria. I think the reason I got remission in a few days after starting the probiotics years back was that my bowels were so dead, missing all good bacteria after years of flares and prednisone. I'm certain both my diet and probiotics assist keeping me in remission, because I've have had hard times - almost died - prior to finding the balance.

I'd be interested to know, whether your vegetarian diet consisted of raw food? That is a no-no for me. When in remission I can eat salads and stuff - just about anything, but I try my best to avoid anything raw.

I sincerely think that everybody ought to start a diet by sticking to their normal diet and trying to kick out the foods that may cause problems. The other approach is to go to the basics and start adding stuff. My reason for going for vegetarian was simply not liking meat ever.

The reason I mentioned vegetarian diet was to inform people that a diet don't have to be strict. As I mentioned, I can basically eat anything except the meat. We have a menu consisting hundreds of meals. Even the basic Indian dishes are made out of tens of different beans and lentils, not to mention numerous breads. Add to that Middle Eastern and Italian foods and you'll get the idea of how diverse our 'strict' diet is.

People ought to eat what best suites them. I've nothing against meat if that makes one happy. I'd suggest chicken and fish, though. The less the food aggravates your GI tract the better. The another factor is that one needs to get the proper nutrition out of the diet. Ours have been tested and found excellent.

I hope you find your balance soon.

Happy Fourth!
Posted 7/6/2011 6:44 PM (GMT 0)

KiWi44 said...

First off, probiotics are good bacteria. I think the reason I got remission in a few days after starting the probiotics years back was that my bowels were so dead, missing all good bacteria after years of flares and prednisone. I'm certain both my diet and probiotics assist keeping me in remission, because I've have had hard times - almost died - prior to finding the balance. - that is serious im sorry that that happened. i wondering though i beleive that probiotics are great and i am using them. Its just that i read somewhere and i cant remember where i read it, but it said that ulcerative colitis is an auto immune illness and your immunitiy doesnt know how to responed to bacteria. but that would not be true if you are taking probiotics becuase the probiotics would make it wrose. Its just a thing i read.

Ive also read it is caused by your T-cells attacking your body but now im doing the diet my T-cells are fine so im guessing they are not attacking me but something else.

I'd be interested to know, whether your vegetarian diet consisted of raw food? That is a no-no for me. When in remission I can eat salads and stuff - just about anything, but I try my best to avoid anything raw.

 

My vegi diet was not raw before. the reason why i gave up meat was because i thought my body did not like it that much. i was a vegi prior to being diagonosed with UC. it was just that i thought meat was a problem for me. i ate things like pasta with tomatoe sauce with veg. i would do vegi currys. potato and spinach, (that was nice) i ate cheese alot but only goats cheese, rice, bread and potoates were my main sorce of foods. i ate fruit but usually only 1 apple a day. and i did eat salads sometimes i would have chips (french fries) and salad. occausionly i would eat meat and i always felt worse but i know know it was not the meat it was the mixture of meat and breads and pastas which were making me bad. (any way as you said you have to do the right thing for you if vegi is working then go for it)

 

i went on the raw diet when i had a flare at the end of march 2009. i was desprate to try anything and i did notice improvements like better energy and my joints were better. i think though i felt better because i was gluten free and going gluten free did not stop everything for me but did make me feel better. i did the raw diet for 6 months but i never got rid of bleeding. it was not till i found the Green fellow that the bleeding stopped. He said the bleeding was caused by candida. and i needed to starve it from the sugar he was right.

Post Edited (Hellokitty) : 7/6/2011 2:01:00 PM (GMT-6)

Posted 7/6/2011 9:03 PM (GMT 0)
HelloKitty,

Thank you for your response.

Sometimes people get overly concerned about everything they read, especially when they're sick and panicking. That is exactly what happened to me.

The only thing that I feel I must bring up is the raw diet. I seriously doubt that anything raw is good for us UC'ers. When in remission, I can eat practically anything, but I've learned to avoid certain foods that later could bite me in the behind.

It's hard to find a diet that suites you perfectly, but it's worth it. I've lived with mine for over 30 years, and it has served me well.

Little by little.

Take care.
Posted 7/6/2011 9:20 PM (GMT 0)
Hi Kitty

I am in the UK so understand completley where you are coming from with the NHS. At the end of the day, you have to go with what works best for you and if you feel that this diet is really helping you then he has to support it.
I know what some doctors can be like though. Will you get to see the consultant or one of his team?? Are they going to reschedule the colonoscopy or not??
I hope that you continue to do well on the diet but I understand that it is very restrictive.
Keep us informed of your progress.
Posted 7/6/2011 10:05 PM (GMT 0)
I don't feel like I'm qualified to give advices like other veterans here in this forum, but I've learned that raw veggies have been my worse enemy during my time with UC.

I'm sorry to hear that you had a frustrating time with your doctor. It's hard to be flexible with your doctor when you do have your own life schedule. Things change around us, some helps you and some makes things worse, and then, there's only you to control only yourself. :)
Posted 7/8/2011 10:15 PM (GMT 0)
When i see this doc in september i will reschedule the colonoscopy. ( i hope they will reschedule it for me) It is frustrating they dont seem to really care but i will see what happens.

The raw vegie thing well. for me any way i do have a problem with too much fruit. but really i eat green veg cooked, for example i can not eat brocolie raw or runner beens, i have to cook those, also cauliflower i could not eat that raw.  

but lettus, cucumbers, spinach, stuff like that i do eat raw. i never cook spinach, i also grow my own herbs like parsley, im also growing my own lettus, that way i know what its been sprayed with or in my case i dont spray them, they are completly organic.

 I dont know really; you just have to find what works for you. If raw works go for it, if not then cook your veg. Ive realized its not about a certain thing like raw or cooked its about what works for your body. Also i have been doing a program as well im not just doing this with diet alone, thats the honest truth.

thanks for your responces they mean alot to me.

 

Post Edited (Hellokitty) : 7/8/2011 4:20:36 PM (GMT-6)

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