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Posted 10/19/2016 12:54 PM (GMT 0)
"So it seems everyone thinks I should be going back on my medications? Should I do both the Asacol Pills and the Rowasa enema?"

Yes, I would do both, especially since you've been off everything for a while. Latent inflammation is nothing to be trifled with (can simmer and spread until you flare). The medications will help in that regard, and also help reduce our colorectal cancer odds. Over the longterm, probably just the pills are fine, enemas as needed.

Certainly continue with your diet, as you believe it's helped. Everything that helps should be used.
Posted 10/19/2016 1:08 PM (GMT 0)
yes
Posted 10/19/2016 2:58 PM (GMT 0)

David1991 said...

brucen36 said...

David1991 said...

Are you still med free or have you had to start taking them again. If so, what are you taking?

I was only using the dextrose for a few weeks.....it's just glucose so by SCD standards it should be completely legal. I felt the same on dextrose as I did on honey, which was about the same as I did on fruit. So I'm not sure if any one was better than the other for me unfortunately.

No, I do take Mesalamine pills and occasional enemas now (for some reason my signature does not show up here).

Dextrose is glucose in theory yes, but what you buy is almost never pure and the contaminants are usually large starch molecules.

Fruits are quite different from one one another with respect to glucose - fructose ratio, some will work better for you than others, especially if you also have fructose malabsorption.

http://www.bodybuilding.com/store/now/dex.html?PLASKU=NOW751&MCid=CM_PLA_US this is what I buy which claims to be "100% pure dextrose (non-GMO)" but who knows. Like I said I felt the same using it at 100-200g per day compared to honey.

So you took nothing for 10 years then all of a sudden had a flare or something that required you to go back to mesalamine?

I guess in theory it would be better to just add one type of fruit at a time. This stuff gets quite tedious huh...

Yeah, I'm not so sure about the purity of that product. For example, look at the break down in the nutritional label. For 20 g of dextrose, only 18 g are sugar, why?

Honey I believe is one of the more advanced foods you should probably add in later since it also has a fairly significant sucrose content. Additionally, different types of honey will have different effects.

I never took mesalamine when I first started SCD. It just worked and kept me in remission for around 10 years except for when I occasionally cheated on the diet. No meds whatsoever. Then the diet itself was not enough and I did have to add in mesalamine.

SCD is the worst, for me it has side effects like dehydration and other issues, but those are the lesser of two evils since it helps keep me in remission. I'll be looking to do FMT at some point soon. My UC is heavily dependent on my diet so I'm hoping it might help.
Posted 10/19/2016 4:31 PM (GMT 0)
OK I'll get back on them today at the lower dose (4x800 Asacol HD per day, and 1 Rowasa enema every 3rd day).

brucen36 said...


Yeah, I'm not so sure about the purity of that product. For example, look at the break down in the nutritional label. For 20 g of dextrose, only 18 g are sugar, why?

Honey I believe is one of the more advanced foods you should probably add in later since it also has a fairly significant sucrose content. Additionally, different types of honey will have different effects.

I never took mesalamine when I first started SCD. It just worked and kept me in remission for around 10 years except for when I occasionally cheated on the diet. No meds whatsoever. Then the diet itself was not enough and I did have to add in mesalamine.

SCD is the worst, for me it has side effects like dehydration and other issues, but those are the lesser of two evils since it helps keep me in remission. I'll be looking to do FMT at some point soon. My UC is heavily dependent on my diet so I'm hoping it might help.

Hm, not sure where you're seeing the 18g sugar per 20g dextrose....I see on the side 4g serving has 4g sugar and the one I have at home says 20g serving has 20g sugar.

I agree on the honey, since it has sucrose in it, which is why I switched to the dextrose. But I guess that didn't help. Maybe I should just limit myself to fruits. Honestly all 3 seem to give me a similar reaction though. I really haven't found many foods that are 100% fine.
Posted 10/19/2016 5:38 PM (GMT 0)
Dextrose is glucose.
Sugar is glucose and sucrose.

Dextrose anhydrate has no water, and is what is used in the hospital drips.

Dextrose sold commercially is mostly sold as D-glucose, meaning it is Dextrose Monohydrate. That means it has a tiny part of a water molecule attached.


Some manufacturers use a small amount of anti-caking agents in their Dextrose.
Posted 10/19/2016 10:33 PM (GMT 0)

David1991 said...
OK I'll get back on them today at the lower dose (4x800 Asacol HD per day, and 1 Rowasa enema every 3rd day).

brucen36 said...


Yeah, I'm not so sure about the purity of that product. For example, look at the break down in the nutritional label. For 20 g of dextrose, only 18 g are sugar, why?

Honey I believe is one of the more advanced foods you should probably add in later since it also has a fairly significant sucrose content. Additionally, different types of honey will have different effects.

I never took mesalamine when I first started SCD. It just worked and kept me in remission for around 10 years except for when I occasionally cheated on the diet. No meds whatsoever. Then the diet itself was not enough and I did have to add in mesalamine.

SCD is the worst, for me it has side effects like dehydration and other issues, but those are the lesser of two evils since it helps keep me in remission. I'll be looking to do FMT at some point soon. My UC is heavily dependent on my diet so I'm hoping it might help.

Hm, not sure where you're seeing the 18g sugar per 20g dextrose....I see on the side 4g serving has 4g sugar and the one I have at home says 20g serving has 20g sugar.

I agree on the honey, since it has sucrose in it, which is why I switched to the dextrose. But I guess that didn't help. Maybe I should just limit myself to fruits. Honestly all 3 seem to give me a similar reaction though. I really haven't found many foods that are 100% fine.

Oh that's interesting then. On the link you provided: http://www.bodybuilding.com/store/now/dex.html?PLASKU=NOW751&MCid=CM_PLA_US

If you choose US as your country (first time it automatically went to the US site for me) the nutrition label says 18/20 g dextrose is sugar. Maybe just a misprint. If you choose say Canada as the country, then yes it does say 4g sugar and 4 g total carbs.

But I would bet that even if they say 100%, it's not absolutely 100% since it is made for consumers and is food grade, else it would be a lot more expensive.
Posted 10/20/2016 9:37 PM (GMT 0)
David1991, it genuinely looks like SCD helps you. I'd say avoid dextrose and honey for three more months to give yourself time to heal.
Posted 10/21/2016 3:55 AM (GMT 0)

FSLondon said...
David1991, it genuinely looks like SCD helps you. I'd say avoid dextrose and honey for three more months to give yourself time to heal.

How do you feel about fruit? Seems more people are in favor of fruit but to me it seems like it would be just as bad.
Posted 10/21/2016 3:26 PM (GMT 0)
I am on SCD and tolerate fruit well. I'd advise you to start with raspberries, strawberries and blueberries and see how that goes before adding in pears and then melon. If that all seems ok, go ahead and add more. I will say when I started SCD I did best with meat, fish, eggs, vegetables, SCD yogurt and hard cheese (especially unpasteurized). I added in nuts and honey later. Now I can eat lentils and beans (if I soak them at home myself).

I have stayed on my balsalazide and aziothioprine the entire time, but diet took me from a low simmer to a more solid remission (pun intended). For me diet isn't a panacea but it's another tool for symptom management. So I use it along with medication and tumeric.

Post Edited (FSLondon) : 10/21/2016 9:29:10 AM (GMT-6)

Posted 10/21/2016 4:37 PM (GMT 0)

FSLondon said...
I am on SCD and tolerate fruit well. I'd advise you to start with raspberries, strawberries and blueberries and see how that goes before adding in pears and then melon. If that all seems ok, go ahead and add more. I will say when I started SCD I did best with meat, fish, eggs, vegetables, SCD yogurt and hard cheese (especially unpasteurized). I added in nuts and honey later. Now I can eat lentils and beans (if I soak them at home myself).

I have stayed on my balsalazide and aziothioprine the entire time, but diet took me from a low simmer to a more solid remission (pun intended). For me diet isn't a panacea but it's another tool for symptom management. So I use it along with medication and tumeric.

I'll try sticking with berries for a while. Meat and fish works well for me, some vegetables, and oil is good. I took out hard cheeses as I thought it was causing me issues but honestly at that point I was still having honey, lots of fruit, and lots of peanut butter, so I really can't know for sure. I'll be taking peanut butter out soon so maybe I can add hard cheeses back in. I should try to make SCD yogurt at some point too.

Ah so you're on Imuran.....how has that affected you, both in terms of Crohn's and side effects? My GI doctor has brought 6-MP up to me a few times but it really concerns me, the side effects seem awful in some cases. I know some tolerate it well but I remember a while back reading about a low risk of some cancer that had a 2% 5-year survival rate.
Posted 10/21/2016 5:54 PM (GMT 0)
With azathioprine/imuran and 6MP, you're likely talking about non-Hodgkin lymphoma. The odds of getting it are 0.04 percent with a survival rate of 66 percent.

The most concerning side effect of these medications is lymphoma which has odds of 4 in 10,000 (or 0.04 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 10/21/2016 9:28 PM (GMT 0)
Imuran and azathioprine combined have kept me mostly in remission for 8 years now, with one flare in that time. What hey couldn't do was get bme back to normal bowel function and instead I often felt on the verge of a flare. What drove me to try SCD was that I developed secondary arthritis likely related to my UC and didn't want to start taking biologics.

I've had no side effects with Imuran at all. I am diligent about my regular blood tests and for a while they showed quite low WBC but that has stabilized. Ipoop has set out the risks of non-hodgkins lymphoma for you. There's also a possible increased risk a melanoma. I guess I'll take that over the greater increased risk of colorectal cancer that poorly managed UC presents.
Posted 10/21/2016 10:16 PM (GMT 0)

iPoop said...
With azathioprine/imuran and 6MP, you're likely talking about non-Hodgkin lymphoma. The odds of getting it are 0.04 percent with a survival rate of 66 percent.

The most concerning side effect of these medications is lymphoma which has odds of 4 in 10,000 (or 0.04 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Hm, I remember reading something far more concerning about it years ago on Wikipedia, but cannot seem to find it, so I'm not sure what specifically I was thinking about.

FSLondon said...
Imuran and azathioprine combined have kept me mostly in remission for 8 years now, with one flare in that time. What hey couldn't do was get bme back to normal bowel function and instead I often felt on the verge of a flare. What drove me to try SCD was that I developed secondary arthritis likely related to my UC and didn't want to start taking biologics.

I've had no side effects with Imuran at all. I am diligent about my regular blood tests and for a while they showed quite low WBC but that has stabilized. Ipoop has set out the risks of non-hodgkins lymphoma for you. There's also a possible increased risk a melanoma. I guess I'll take that over the greater increased risk of colorectal cancer that poorly managed UC presents.

How old were you when you developed arthritis? SCD stopped the arthritis?

I am very pale, and my similarly pale mother developed melanoma when she was 18, so that is certainly a concern for me, as is colon cancer.
Posted 10/21/2016 10:22 PM (GMT 0)
I started back on the Asacol and Rowasa on Wednesday. Can't say I feel any better yet unfortunately. I'm dropping the peanut butter today too.

Edit: I actually feel more bloated and crampy tonight (sensation of having to go without being able to go) than I have in weeks :\
Posted 10/23/2016 9:58 PM (GMT 0)
Been about 6 days since I dropped the peanut butter and honey, 4-5 days since adding back the Rowasa and Asacol. Can't say I feel any better (whereas in the past just coming off asacol for a day or two had a negative effect).
Posted 11/7/2016 1:09 AM (GMT 0)
So I've been back on the medication for weeks now and I feel literally no different. My bowel movements are still the same (4-5 on the Bristol Stool Scale if I don't eat much honey or fruit, 4.5-6 if I eat a lot) and everything else feels the same too.

The only benefit I feel is not having any blood in my stool BUT I only got that when I reincorporated peanut butter and was eating 10+ tablespoons per day. When I took out the peanut butter is when I added the medication. So I suspect that's the reason, taking out the peanut butter.

I have a colonoscopy Friday and now I kind of wish I didn't add the medications back in because I could have seen how just the SCD alone would have helped. I don't notice any benefit from the Asacol and Rowasa.
Posted 11/7/2016 3:53 AM (GMT 0)
At least you know that peanut butter, honey, and fruit causes problems, knowledge is power.
I have always gotten better results from diet modification than all the oral RX taken in 16+ years but I still take it because hopefully it suppresses inflammation which can lead to cancer.

You could try a different oral RX med. Research it and be ready when you talk to your GI with what you think is the next thing to do/try.

If you are not gluten-free past 30 days you could request that be checked during your c-scope, it's the highest-quality test for celiac. If you have been gluten-free for SCD then the test will be pointless because no gluten intake=no markers for celiac.
Posted 11/7/2016 3:43 PM (GMT 0)

imagardener2 said...
At least you know that peanut butter, honey, and fruit causes problems, knowledge is power.
I have always gotten better results from diet modification than all the oral RX taken in 16+ years but I still take it because hopefully it suppresses inflammation which can lead to cancer.

You could try a different oral RX med. Research it and be ready when you talk to your GI with what you think is the next thing to do/try.

If you are not gluten-free past 30 days you could request that be checked during your c-scope, it's the highest-quality test for celiac. If you have been gluten-free for SCD then the test will be pointless because no gluten intake=no markers for celiac.

Yea I guess, it's unfortunate because before with these medications I could eat tons of whatever I wanted and still have completely normal bowel movements (until the occasional flare once a year or so). Now even with a very strict diet things are not good.

I can't continue a diet of just meat, vegetables, and oils. I'm literally eating 10-15 tablespoons per day of oil just to keep my weight up, extremely unappetizing.

I guess we will see what the colonoscopy Friday shows. My other issue with the medication long term is potential long term risks like my liver enzymes always being a bit elevated and any other long term potential problems it could have, especially if it's not even giving me a noticeable benefit. I just had a 6 this morning (basically diarrhea) even having used the mesalamine enema yesterday. My stools actually were better with the "only peanut butter" compared to the "only honey" (in terms of additional items to the meat, veggies, oil) but then I had the blood.

I kind of want to work with a new doctor too. Mine is this older woman who just goes 100% based on the medical reviews for Rx and doesn't talk to me at all about diet or any other factors.
Posted 11/7/2016 4:31 PM (GMT 0)
Here's a suggestion: add fiber your gut can handle into your daily routine (not PB). I also had poor results from psyllium (both husk and seeds tried) and my gut dislikes many natural vegetable sources like broccoli, etc. It's OK with spinach and carrots. Add resistant starch to your list, it's helped many people here.

Try adding Citrucel tablets, unflavored. There is a generic version but to start off use the name brand. This is the only fiber tolerated by my gut and it is well known as the "gentlest" fiber. This could firm up your BM's. At one point I was taking about 4+ a day but that was years ago and now I only take 1 or sometimes 2 a day.

I understand what you are saying about your boring food list, been there and worked through it.
But your choices seem to be: switch to a different RX, tinker with your diet or think about surgery.

You might have to shop around to find a GI who works with diet for IBD, not many support it. My GI listens but makes no comments about how my diet mod. works for me, at least he is not negative about it.

Good luck.
Posted 11/7/2016 5:13 PM (GMT 0)
" My GI doctor has brought 6-MP up to me a few times", time to reconsider?
Posted 11/7/2016 6:48 PM (GMT 0)
If you're 100% convinced you were doing better without medication, I personally wouldn't take the medication. I have a very difficult time understanding that, barring the chance that you have an intolerance... but some people are intolerant to mesalamine, so it's possible. If you do in fact have an intolerance, you could consider another drug entirely. There is really no way to know, except to see how these medications impact you and your symptoms. Some people get nausea, headaches or worsening symptoms if they have an intolerance... you should also get stool tests. Drug resistant inflammation can sometimes indicate a pathogen. Have you ever taken oral steroids? Just curious.
Posted 11/7/2016 8:48 PM (GMT 0)

iPoop said...
" My GI doctor has brought 6-MP up to me a few times", time to reconsider?

Maybe :( it scares me

notsosicklygirl said...
If you're 100% convinced you were doing better without medication, I personally wouldn't take the medication. I have a very difficult time understanding that, barring the chance that you have an intolerance... but some people are intolerant to mesalamine, so it's possible. If you do in fact have an intolerance, you could consider another drug entirely. There is really no way to know, except to see how these medications impact you and your symptoms. Some people get nausea, headaches or worsening symptoms if they have an intolerance... you should also get stool tests. Drug resistant inflammation can sometimes indicate a pathogen. Have you ever taken oral steroids? Just curious.

I'm not saying I was doing better without medication....I just don't notice any benefit from it. And when I came off of it about 2 months ago I noticed no difference either.

I have tried oral hydrocortisone and uceris. There worked like a miracle last time, but did not seem to help as much this time. I don't want to take them again, ideally.

imagardener2 said...
Here's a suggestion: add fiber your gut can handle into your daily routine (not PB). I also had poor results from psyllium (both husk and seeds tried) and my gut dislikes many natural vegetable sources like broccoli, etc. It's OK with spinach and carrots. Add resistant starch to your list, it's helped many people here.

Try adding Citrucel tablets, unflavored. There is a generic version but to start off use the name brand. This is the only fiber tolerated by my gut and it is well known as the "gentlest" fiber. This could firm up your BM's. At one point I was taking about 4+ a day but that was years ago and now I only take 1 or sometimes 2 a day.

I understand what you are saying about your boring food list, been there and worked through it.
But your choices seem to be: switch to a different RX, tinker with your diet or think about surgery.

You might have to shop around to find a GI who works with diet for IBD, not many support it. My GI listens but makes no comments about how my diet mod. works for me, at least he is not negative about it.

Good luck.

Spinach seems to cause me more issues than broccoli actually. But yea Psyllium didn't work well for me, I felt worse and had worse stools. What is the idea behind Resistant Starch...is there a particular product you recommend?

OK I will look into citrucel

Thanks, it is tough. I have an appointment with someone a little further away who works in integrative functional medicine https://www.functionalmedicine.org/practitioner_detail.aspx?practitioner_id=5208&ref_page_id=117 she is not a GI doctor but I have some heart issues too (I'm only 25) so I do wonder if maybe a more holistic approach from her could help.
Posted 11/7/2016 9:05 PM (GMT 0)
Google "resistant starch" for scientific information about it and a whole lot of sources. It's not a product, it's real food.
There are many food sources for it but the friendliest to my gut is potatoes. Best to cook and then cool (potato salad an example) but I've read that cooling may not be necessary. Cold rice (sushi) is another source, I eat Udi's rice flour based bread.

I also bought potato starch (not potato flour) and sometimes dissolve a tsp. in water and drink but potatoes are a lot more fun to eat and nutritious. Sooooo many ways to cook and enjoy.
Posted 11/7/2016 9:47 PM (GMT 0)

imagardener2 said...
Google "resistant starch" for scientific information about it and a whole lot of sources. It's not a product, it's real food.
There are many food sources for it but the friendliest to my gut is potatoes. Best to cook and then cool (potato salad an example) but I've read that cooling may not be necessary. Cold rice (sushi) is another source, I eat Udi's rice flour based bread.

I also bought potato starch (not potato flour) and sometimes dissolve a tsp. in water and drink but potatoes are a lot more fun to eat and nutritious. Sooooo many ways to cook and enjoy.

OK so in that case you'd really be branching away from the SCD. And I looked at this
https://www.amazon.com/Citrucel-041976-Caplets-180-Count/dp/B004RFF630/ref=sr_1_1?ie=UTF8&qid=1478551835&sr=8-1-spons&keywords=citrucel&th=1
it's got maltodextrin in it

Having said that, I've been doing the SCD for 4 months now and have felt more or less the same for the majority of that time, so maybe it's time to try other things.
Posted 11/7/2016 11:28 PM (GMT 0)
"Maybe :( it scares me".

I've gotten no serious side effects from 6mp over 3 years. I sunburn a little easier, that's all.
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