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Still in Remission from Spinach/Sunflower Seeds 3 Years Later

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Ulcerative Colitis
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Posted 4/5/2013 11:39 PM (GMT 0)
protocolteck, I wonder if there is something in the particular bread you were eating that was causing a bad reaction.  Some additive or something.  Anyway sounds like you are still seeing improvement with the spinach and seeds - I really hope it continues to improve and you reach remission.  I think you can. 
Posted 4/6/2013 3:34 AM (GMT 0)
Saw this thread and decided to give spinach a try. (See earlier post in this thread). For couple days I thought it was helping. Got some sort of bug last week so I basically didn't eat for a few days. Last nite and tonight i ate my spinach. Within an hour both times, I was in the bathroom vomiting. Ate spinach raw last night and tonight I cooked it in olive oil. Find it very coincidental that I felt great both days until I ate that green stuff. I think I'm done with it now. Never really liked it in the first place!
Posted 4/6/2013 3:45 PM (GMT 0)

sore_guts said...
protocolteck, I wonder if there is something in the particular bread you were eating that was causing a bad reaction. Some additive or something. Anyway sounds like you are still seeing improvement with the spinach and seeds - I really hope it continues to improve and you reach remission. I think you can.

Thanks, Sore_Guts.

I have continued to see good results with Spinach and seeds. I think there is something in the GF bread I have been eating that causes inflammation, etc. I need to remember that, just because something is gluten free, does NOT mean it is the healthiest thing I could be putting in my body.
Posted 4/8/2013 7:09 PM (GMT 0)
Well, it seems like I have a good blood and mucus free day, then have a blood and mucus day(today). I don't understand it-The diet has remained the same and I have been on it for about a month.  Also, really dragging and lack energy the last several days.  Very odd for me and I have a feeling it may have something to do with my Thyroid.  I am going to have blood work this week.
Posted 4/8/2013 7:31 PM (GMT 0)
How do you prepare the spinach? And what do you put the Sunbutter on? Thanks!!!
Posted 4/8/2013 8:38 PM (GMT 0)
ILEDE,

I saute fresh spinach in olive oil in a WOK until completely cooked. I use SF butter on bread, banana's and basically anything you would use peanut butter for.
Posted 4/9/2013 6:00 PM (GMT 0)
Hi Everyone,

Just wanted to drop in with an update.  I started working a few months ago, and it has been extremely stressful (had been a stay-at-home mom for 6 years).  I'm not sure if that has anything to do with it or if the crazy schedule has made me forget to eat my spinach and sunflower seeds, but I'm bleeding a bit.  There has only been one other time that I briefly fell out of remission.  Shortly after I achieved remission for the first time with spinach/sunflower diet along and meds, I tried to play around with these foods to see if I could get the nutrients I needed from other sources like carrots, hazelnuts, etc.  It didn't work and I started bleeding.  Without being on medication, I couldn't get it to stop using diet alone.  My doctor gave me Lialda, and that WITH the diet got me back into remission.

So tomorrow I'm going to my doc for an RX of Lialda.  I've been eating lots of spinach and Sunbutter, so hopefully the addition of meds will get me back in remission. 

For those of you who are close to remission but not quite there, please remember that it's important to take your meds until you are completely in remission.  And once you're in remission, don't take the diet for granted and let things slide like I did.  I'm so bummed about this, and I hope it doesn't discourage you from going forward with the diet.  If I had been more conscientious about keeping up with it, I don't think this would have happened. 

Posted 4/9/2013 6:13 PM (GMT 0)
Protocolteck - I wanted to mention that if you are feeling very tired, you should definitely have your doctor check your B12 level.  It is not part of standard bloodwork - you need to request it.  When I was flaring severely years ago and losing a lot of blood, no one ever checked my levels.  I only recently found out that I was very low and need injection therapy to bring it back up.  It can be dangerous if left untreated, because it can cause permanent nerve damage. 

If it does turn out to be a problem, I can recommend a sublingual supplement to take instead of injection therapy (which is expensive and not necessary if you don't have absorption issues).

 

Posted 4/9/2013 6:17 PM (GMT 0)
Kiss520, it's very important that you remain on maintenance meds when in remission to prevent flaring again. Future flares are harder and harder to treat and will require tougher medicines. It's best to supplement the medicines with the diet you are doing.

Lialda is pretty much a harmless drug with no side effects, so if you get in remission with that, stay on it for life. You will need to be on 4.8g to knock out the flare.

Many people here, including myself, have made the mistake of going off the maintenance meds, only to flare back up.
Posted 4/9/2013 7:33 PM (GMT 0)
StealthGuardian - I appreciate the advice, but I had absolutely no problem relying solely on the diet once I got into remission.  I just haven't been paying enough attention to my diet lately and haven't been getting what I need.  The last time I used Lialda, my RX was for 1.2 g per day, and that was the little extra boost I needed to stop the bleeding entirely. 

If for some reason things don't go as planned, I'll consider maintenance meds; but it's not what I want to do and will avoid it at all costs. 

Posted 4/9/2013 8:37 PM (GMT 0)
Kiss... chronic illness = chronic use of medicine

I hope you get better and the spinach will help you too.

I'm doing both drugs and diet. So far so good.
Posted 4/9/2013 9:08 PM (GMT 0)
so Kiss -

WHAT IS WRONG WITH YOU ????

why are you so against meds ?

Posted 4/9/2013 9:21 PM (GMT 0)
Kiss520,

I don't mean to scare you but the reality is that UC is a lifelong thing. While you can maintain it with diet, it's best to take maintenance meds so you NEVER flare up again. I'm telling you this because I did the same thing you did and am facing surgery. Lialda caused no issues for me and I only went off because I thought I was "cured". My body is now experiencing many complications from prednisone. Many others here have done the same and they are going through hell because of it. Each flare has a chance to cause irreversible damage to the colon; once it's gone, it's gone with little to no chance of healing.

If I can prevent someone from making the same mistake I did, then I've done my job on this forum. I'm doing this because I don't want you to suffer like I did. Would you rather take harmless 2 pills a day or risk stronger meds and possibly surgery? The statistics don't lie here - most people who go off cost the healthcare system even more money.

Please watch this video: http://www.youtube.com/watch?v=h_bM0gKOQhY

Post Edited (StealthGuardian) : 4/9/2013 3:25:15 PM (GMT-6)

Posted 4/9/2013 9:26 PM (GMT 0)

Kiss520 said...
Protocolteck - I wanted to mention that if you are feeling very tired, you should definitely have your doctor check your B12 level. It is not part of standard bloodwork - you need to request it. When I was flaring severely years ago and losing a lot of blood, no one ever checked my levels. I only recently found out that I was very low and need injection therapy to bring it back up. It can be dangerous if left untreated, because it can cause permanent nerve damage.


If it does turn out to be a problem, I can recommend a sublingual supplement to take instead of injection therapy (which is expensive and not necessary if you don't have absorption issues).

Thanks, Kiss. I was going to check that out as I know many of us have had issues with low B12, however, What I found out in my case was this all started when I started taking Ribose. I didnt take any today and feel 100% better. If this gets bad again, I will have B12 checked.

I also saw the comments from others wondering why you dont like to take meds. I dont want to take them either and will do everything in my power to get toff all UC meds (which is why I am trying this diet, etc). Who actually wants to be on meds? Anyway, thanks for your commentary and hope you get back to full remission on the diet.
Posted 4/9/2013 9:38 PM (GMT 0)

StealthGuardian said...
Kiss520,

I don't mean to scare you but the reality is that UC is a lifelong thing. While you can maintain it with diet, it's best to take maintenance meds so you NEVER flare up again. I'm telling you this because I did the same thing you did and am facing surgery. Lialda caused no issues for me and I only went off because I thought I was "cured". My body is now experiencing many complications from prednisone. Many others here have done the same and they are going through hell because of it. Each flare has a chance to cause irreversible damage to the colon; once it's gone, it's gone with little to no chance of healing.

If I can prevent someone from making the same mistake I did, then I've done my job on this forum. I'm doing this because I don't want you to suffer like I did. Would you rather take harmless 2 pills a day or risk stronger meds and possibly surgery? The statistics don't lie here - most people who go off cost the healthcare system even more money.

Please watch this video: http://www.youtube.com/watch?v=h_bM0gKOQhY


I hear what your saying, Stealthguardian, however there is absolutely NO WAY to know if taking 2 Lialda a day for the rest of your life will keep you from flaring. My father has been in remission for almost 20 years with no maintenance drugs from a severe case of UC(he got rid of it with 60mg pred). Everyone is different, that is the only certainty with this disease. There are an exponential amount of factors that come in to play with each patients situation. I hope everything goes well with your recovery.
Posted 4/9/2013 9:50 PM (GMT 0)
Protocolteck, thanks for your comment.

Very few people have their UC go away without some kind of maintenance meds - just look up the statistics. I'm really happy that it went away for your uncle but he is one of those rare cases where it was temporary colitis. A stressful event could trigger it again in the future.

5asas give people the chance to maintain lifelong remissions at basically no cost thanks to modern medicine - the people you see on this forum represent a small subset of the UC population, some which are intolerant to 5asas. Most people with IBD are too busy living their lives to post on this forum and you can assume that they are in remission.

I exaggerated on the never part because there is always a chance of flaring, but it is very, very low when maintenance meds are part of the equation. I don't doubt the validity of the spinach and sunflower seed diet because it's helped so many, but her chance of flaring up is even lower if that diet is combined with lialda.
Posted 4/9/2013 10:05 PM (GMT 0)
We all agree that drugs are needed with diet, etc to get to remission-that is not the issue and never was.

Actually, it was my Father not uncle and he did not have temporary colitis, he had Chronic UC and had it for about 9 years prior to remission. Which is kind of my point, you are implying that you know my Fathers case. You said, "A stressful event could trigger it again". That is true with 100% of the people on this board. I am not trying to be a jerk but again, everyone is different and there are not guarantee's. Also, it cost me close to $700/month for Lialda so I would not say that is at "No cost"
Posted 4/9/2013 10:26 PM (GMT 0)
Sorry for the mix-up, I meant your father. 9 years of UC cured with 60 mg of prednisone? That's actually pretty amazing, if not miraculous. Sorry for assuming there. The ones who have it go away usually aren't the severe cases. I guess it gives me some hope.

Lialda offers a savings card where it's just $10 co-pay each month, at least in America. They accept all insurances. It's very affordable now. Many medicines have similar programs now, including remicade and humira. I was able to get uceris for $25 the other day with their savings card.

You are right there is no guarantee that a person will not flare up. Everyone is clearly different and is going through different circumstances. However, it's just such a tragedy seeing so many people suffering and not being able to live their lives when it could *possibly* have been prevented. I know mine could have. Others here will tell you the same thing if they adhered to their medicines. I'd be living a different life right now and I can tell you that I wouldn't be posting here.
Posted 4/9/2013 10:40 PM (GMT 0)
The reality for me is that Lialda and Asacol do not work for me-in fact, no oral drugs have helped (Have not been bad enough to go to Pred). The best results I am having is with Canasa and the sf/spinach diet. Bottom line is if Lialda kept everyone in remission if they took it daily, it wouldnt be called Lialda, it would be called "UC CURE"

Re: My father There is much I did not put in the post because it is not relevant. He was on varying amounts of pred before getting to 60 mg. It took a LONG time for him to taper off with many roadblocks and bumps.

You do realize that many people DO live the rest of their lives UC drug free, right? I see that may not have been the case with you but, again we are all different.

I wish you well in your recovery.
Posted 4/10/2013 12:22 AM (GMT 0)
I believe modern medicine has it's place; however, if a person is able to treat her condition with diet, I can't imagine why she would choose anything else. I was in a terrible flare for about 10 months after being diagnosed, and it cost me $4,000. Since I achieved remission, I have spent absolutely nothing other than the usual cost of food. I have not had to deal with the side effects of drugs or the fear of potential side effects after prolonged use of drugs.

If I can get back into remission with Lialda and diet, I plan to taper off the Lialda and strictly follow the diet. I truly believe that my bleeding is due to the fact that I got sloppy with the diet. It worked for three years and was the only thing that got me into remission - drugs alone did not help AT ALL. Of course, if the diet does not keep me in remission, I will need to rethink my approach. But this is where I'm at right now.

The reason I don't like drugs is because I truly believe that food can heal you. There have been numerous studies of people treating chronic illnesses like MS and a variety of others with food. I don't want to rely on drugs developed by questionable pharmaceutical companies who don't always know or accurately report potential side effects.
Posted 4/10/2013 12:24 AM (GMT 0)
Protocolteck - Thanks for your reply and for the well wishes. I really appreciate it and wish you success with the diet. :-)
Posted 4/10/2013 1:27 AM (GMT 0)
KISS, DID YOU GET DIFFERENT RESULTS IF THE SUNFLOWER SEEDS AND SPINACH WERE ORGANIC?
Posted 4/10/2013 1:41 AM (GMT 0)
hey kiss - can you explain the sloppiness as far what you think caused you to flare again - and why don't you unflare w/o the drugs ?
Posted 4/10/2013 1:44 AM (GMT 0)
Kiss... seriously why do you want to lay off the maintenance drugs?

Did you just forget to eat spinach lately?

I try to eat spinach every day or at least every second day. I also try to eat sunflower seeds every second day. I found a brand which sells them raw and without salt.

Every time I eat spinach, I get diarrhea. I know it's food induced and not from the flare. I haven't bled in days now.

I believe the combo of food/diet and meds are the key. You need both.
Posted 4/10/2013 2:21 AM (GMT 0)
protocolteck, my dad and your dad are so similar. my dad had very bad UC at my age and did 6 months of prednisone along with sulfa enemas. he's been in a med-free remission for almost 25 years now. certain foods irritate him but besides that, his UC is fine.
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