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spinach sunflower how long?? rant also

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Posted 1/5/2009 9:10 PM (GMT 0)
I am on day 4 of the spinach and sunflower seed diet and the first 2 days were good--3 BM's total and less urgency. However on day 3 --some uncomfortable but not worse than ever cramping and then this morning (day 4)--it was one of the worst since being diagnosed I had to go 7 times before I left for work and 2 more times when I got there. Could not eat lunch as guts were flip flopping. I know some people in this forum have it way worse than I do but I cannot live like this all my life. Is this normal for the early start of the spinach and sun flower seed? I do a can a day and about 5-6 handfuls of seeds.m How many weeks should I give this diet to work?

Also--with regards to surgery (and I know this may be a long way off but it is on my radar)--

How bad does UC have to be before surgery.?  I know its  a relationship between the doctor and patient but I DO NOT want to go for years while experimenting with different drugs that may be hurting my body. I will try some and the enemas is hopefully one I will get soon. (have a appt. with GI this wed.)I guess what I am trying to say is--wouldn't it be easier to have surgery (Jpouch seems so successful from what I read here) than to constantly worry where the next bathroom is? Quality of life is tops on my list and this UC garbage is serioulsy hurting it. My mind cannot focus at work or on any of my hobbies. I would much rather have a bag(if needed) I had to empty than to live in the unknown.  I know I am failry new to this disease (well, I have had symptoms long before official diagnosis) and I have had no remission in about 5 months and see no light YET at the end of the tunnel. Do doctors not want to operate until all attempts at remission have been attempted. ??

Sorry for the rant but other opionions are appreciated. Thanks

 

Posted 1/6/2009 1:19 AM (GMT 0)
I know nothing about the diet, though I guess it is the magnesium that helps. Also, look at the many pages of links here, there is much to learn.
Surgery has to be an option of "later" resort. It doesn't mean you have to get to the edge of sanity, but you should exhaust prescription options first. You never know what combo might put you in remission....and some go for many HAPPY YEARS without considering such a thing.
Check with a good doc at a teaching hospital. and read this site often. It will help you to focus on the facts and the science.
Posted 1/6/2009 3:31 AM (GMT 0)
Reason for edit: Your comment was neither supportive nor helpful. 

Post Edited By Moderator (Red_34) : 1/6/2009 8:38:19 AM (GMT-7)

Posted 1/6/2009 4:07 AM (GMT 0)
You're sick dude...

If someone has to have a surgery to better their life, who are you to comment.

I'd have some choice words for you if I saw you in person, but don't want to offend anyone on this forum.

Get a life.

Posted 1/6/2009 11:03 AM (GMT 0)
Chuck-(pushing forward)

I mean to offend no one and I appreciate  your opionion. You tell me to "get a life" and that is precisely what I am trying to get back. I realize this disease is different for everyone and how everyone deals with it is different. I see, according to your profile, that you are on prednisone, is that helping you? It seems to help many on this forum but the side effects seem harsh. As far as surgery, it seems like a lot of people on this site are very happy with the results and regret they did not do it sooner. I am simply having all options open to me for discussion at this point. I like your quote in your profile--gives a nice perspective.

shane

Posted 1/6/2009 1:26 PM (GMT 0)
Shaneles, welcome to Healingwell if I haven't already done so! :) I do believe that many doctors want to avoid doing surgery unless it becomes absolutely necessary. It IS a major surgery and there are no guarantees. As my GI put it, you could be trading one set of problems for another such as serious case of pouchitis. But I know exactly what you are going thru. I want surgery myself but my GI won't do it and won't even consider it yet. It may come to a point that I will require either Remicade or surgery and I specifically told my GI that I will NOT do Remicade because to me that is just putting off the inevitable. To me it doesn't matter how long you've had this but the quality of life. But surgery is such a personal opinion and it is totally up to you. So it depends on how severe is too severe if you know what I'm saying?

Oh and to be peacemaker, Chuck wasn't talking to you. He was referring to Pant Pooper.
Posted 1/6/2009 1:32 PM (GMT 0)

Shaneles,

I'm sorry. In no way was my comment directed at you. I should have been more specific. It was meant for "pant pooper" which I'm sure others here have had a problem with before.

I don't like the idea of the way he refferred to surgery and "harvesting your colon" like an auto mechanic. How low can he really go. I'm truly sorry if you thought it was directed at you. I hope you do everything you can to feel better...and make the right choice for your life turn

Posted 1/6/2009 3:22 PM (GMT 0)
I cant comment on the surgery because I havent looked into it yet, but as far as the spinach/seed thing goes heres how it helped me.  I found I couldnt eat spinach every day.  For me it did cause looser stools after a couple of days.  I did it about every other day or every 3 days.  And in between ate other foods high in mag and/or beta carotene.  Like carrots, sweet potatos, halibut, nuts and seeds.  I saw results very quickly, but I believe it was also in part due starting to use rowasa also.  I started to see improvements and was so impressed that I really began to get interested in nutrition and also started cutting out processed foods.  I became more interested in getting more vitamins and nutrients in my body through food.  There are many foods which have anti-imflammmatory properties (spinach being one of them). Heres a great nutrition website if you are interested.  I hope you find some relief soon.  Best wishes...

http://www.whfoods.com/genpage.php?tname=foodspice&dbid=43

Posted 1/6/2009 3:45 PM (GMT 0)
One of the primary reasons for having surgery is to improve quality of life. If you feel you have little or no quality of life then it is your decision to move forward. This decision is not your GIs. Frankly I am so grateful that I opted for surgery before the advent of Remicade and Humira. I know I would have taken one or both of those drugs, hell I would have done anything to get better. But in hindsight I feel I put my liver through enough with the 22+ pills I was taking per day. Today I am med-free and live a very predictable life.

Sue
Posted 1/6/2009 3:45 PM (GMT 0)

Hi Shaneles

I was begining to think seriously about surgery during my last flare which lasted over a year.  However now I have been in remission for just 2 years and thriving.  So much so that I rarely log in anymore.

My theory is that if I can hold on to my colon for as long as possible scientists may discover some cause or cure for our problems.  I havn't investigated like other people but I feel that there are often medical breakthroughs for different diseases and maybe as UC becomes more prevalent there will be more research into the area.  So I am going to hold on for as long as I can.

Posted 1/6/2009 3:54 PM (GMT 0)
today will be day 16 on spinach/sunflower diet for me. I started with in a couple days to see improvement. I am now down to two BM's a day most days. My stools are loose but regular. I am going to wait till i have went a solid week I think with only two BM's a day, before I cut back on the spinach. Unless some one on here has a better idea? Keep in mind my doctor is trying to taper me off the Pred so I expect a few bad days each time he drops me a little. Here's hopin this keeps working. I would not say I am remission yet, but I am a WHOLE lot better and I can fundtion easily again. Now I just have to battle my mind. I still get urgency when I know I have a long car drive or am not going to be around a bathroom. But I'm pretty sure this is all in my mind cause on the days I am home all day I have no problems at all.
Posted 1/7/2009 12:42 PM (GMT 0)
thanks to all!!! It so great to hear from people who are in the same boat as me. I am continuing the sunflowere seed/spinach diet and after Monday being a bad day, I am slowly getting better but also took 2 pills of Immodium yesterday which slowed things down and help ALOT with the urgency feeling. I also am now understanding how comments are listed here and will make sure I am writing back to the appropriate person. lol....
I meet with with GI doc in a few hours so I am sure we will be discussing many options. (different meds. I would guess)
Posted 1/7/2009 1:55 PM (GMT 0)
Good luck !!
Posted 1/7/2009 2:54 PM (GMT 0)
shaneles I have been on the diet about a month now. I too had days where I had numerous visits to the bathroom - probably as  any as a dozen times. Currently I have dropped my consumption of colozal to only two a day. My other meds such as Lialda, Colocort, Anucort, and Canasa have been eliminated completely; I haven't taken these in over  a month now. The last three days I have only gone to the restroom once a day. Normally, I would also be squirting my pants thinking it was gas and not mucuous, The blood, gas and mucous have almost disappeared, only slight traces now. Right now I am am in disbelief - I am afraid that perhaps this is just a "fluke". I cherish these days and hope the improvement will continue. Another great benefit is that I have erased my prescript ion bills from around $700 or $800 (for UC) to only perhaps $50.00. I have been in the "Doughnut  Hole" since early July. Having 100% out of the prescript ion bills coming out of my pocket stinks. I plan on getting back on Lialda just to be on the safe side. I am so thankful that I found this sight. I hope you all the best. I too thought this would not work. But for now it seems to be a miracle for me. Jim  
Posted 1/8/2009 12:13 AM (GMT 0)
Well, saw my GI (NP really)today and she put me on the Rowesa enemas while staying on the Pentasa. From what I read here, this seems to be effective and am looking forward to the relief. I also mentioned the sunflower seed and spinach diet and she had never heard of it. She kind of poo pooed it and told me not to read too much online.(with a smile) She was supportive and told me to keep doing it if I think it helps.
If the rowesa does not work--then humira is next. Anyone have experience with this?
Posted 1/8/2009 1:41 AM (GMT 0)

shaneles - Like you and unclebubba, I'm also doing the sunflower/spinach diet.  The first two weeks I actually felt worse, and then week three wasn't quite so bad.  After week three, my symptoms steadily improved to the point where I no longer take any medication (and I was taking A LOT).  I started the diet on 9/31/08. 

No one in your doctor's office will have heard of this diet, because its really only been discussed on this website (thanks to Cfromutah).  I told my gastro doc about it when I started to see improvement, and he (surprisingly) did not laugh at me.  I expected him to, but he just said that people often can find their own way of helping themselves. 

If you don't see improvement soon, talk to Cfromutah.  He is helping me get through the last few steps to remission by giving my some very helpful advice.  The diet is not an exact science, and sometimes it takes a little tweaking.  For example I was eating lots of cheese with my spinach, but the calcium was cancelling out the magnesium (it does that - I don't know why).  So, based on Cfromutah's advice, I stopped eating the cheese and my symptoms are improving.  Don't give up on it yet - it was the only thing that worked for me after lots of meds and different diets.  I hope you respond to it as well as I have and that surgery isn't necessary.  Good luck and keep posting your progress.  :-)

Posted 1/8/2009 2:45 AM (GMT 0)
I agree.. Cfromutah's adive on this diet has been invaluable. I am not quite there... but keep getting lcoser day by day.
Posted 1/8/2009 4:39 AM (GMT 0)
I have noticed that the spinach / sunflower seed diet I am working with has started "bulking" my stools....seems to be mainly the seeds.... I eat a lot of them.....maybe too many...but they tase really good so its tough to stop! Anyway - I have had less bleeding, less mucous, and more bulked stool... I am going to stick with it as well as keep sugars out (pop, donuts, etc)... I remember when Cfromutah first posted this I thought it was going to be a BS post and just go away....very wrong....this has been very valuable information and hopefully many more people can benefit from it - because as we all have just read - our GI's know nothing about it and blow it of....so we cant count on them to introduce it to us. These forums are very valuable!
Posted 1/8/2009 5:04 AM (GMT 0)
shaneles, As some of the others have talked about. Since discovering that spinach and sunflower seeds are of big help with UC I have not talked to anyone about this except for friends and family and people on this forum so GI's do not know about it. And the first time I shared the info on this forum was only 8 months ago.
Posted 1/8/2009 11:34 AM (GMT 0)
thanks to all of you for your comments. I am sticking to the seed/spinach diet for at least a month (since I went out and bought several cans of spinach--I might as well eat them) I am finding that eating it with dinner as a side dish rather than straight seems to help. I do notice the seeds in my stool since starting it. Now with the Rowesa (sp?) enemas -I expect some improvement as well. I will keep you all posted and again thank you all.
Posted 1/8/2009 12:21 PM (GMT 0)
forgot to mention - i get the seeds in my stool too...at first it irritated my bowel a little, but now not at all.....dont get mixed up with the actual seed shells....dont eat those - kernels only....hopefully that is what you mean by seeing seeds in stool.....shells would tare you up....
Posted 1/8/2009 1:08 PM (GMT 0)
If the seeds aren't breaking down enough for you, you should try sunflower seed butter. It tastes and looks very similar to peanut butter and its delicious! Also, make sure you're eating cooked spinach - not fresh. Fresh is too rough when you're first getting started.
Posted 1/8/2009 6:44 PM (GMT 0)
I am so glad you guys are having success with this diet. I think it is just wonderful to find some healthy, natural means to relieve some of the horrible symptoms of this disease.

My next flare I will be trying this diet (maybe add spinach to my cesar salad, haha, and switch my daily peanut butter fix to sunbutter) but for now, I am in complete remission and loving it.
Posted 1/8/2009 6:50 PM (GMT 0)
yes, I have been eating just the kernals and may try some of that  sunflower seed butter. I am eating canned spinach (popeye brand) Surprised to hear garlic worked for love4cats. I am willing to try anything!! I will continue to keep info posted and always looking for more
Posted 1/9/2009 2:29 PM (GMT 0)

shaneles said...
yes, I have been eating just the kernals and may try some of that  sunflower seed butter. I am eating canned spinach (popeye brand) Surprised to hear garlic worked for love4cats. I am willing to try anything!! I will continue to keep info posted and always looking for more

I am not sure if it is the garlic or the huge amounts of romaine lettuce I eat.  I assumed it was the garlic with it's great antibiotic, antiflungal properties, but now I am not so sure.  All I know if I eat a huge ceasar salad with dressing that I add fresh crushed garlic in it, it eases my flares.  My last flare I was very impatient and used salofalk, but other than that, I have been med free and have been able to get my flares under control.
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