Loossing the will to live.

I have researched the spinach and sunbutter diet and I am going to give it a go. I love spinach especially the canned and frozen stuff. Call me weird but yum lol. I also read about someone taking magnesium and calcium supplements with the diet and that really helped so I am considering doing that as well. Dura-Ace how much of the sunbutter and spinach did you eat a day? Did you take any supplements with it? What supplements should someone like me take. Right now I am taking vit D supps, b complex, probiotic and kombucha home brewed, and echinacea which I started all this two days ago. Should I be adding something? I have read a lot of success stories with the spinach and sunbutter diet. It seems like it would be worth a try. Madpotter it does sound like a lot and I too and attached to my colon. I have read lots of peoples success with surgery but I don't know if it would be for me or not. I guess as bootstrap was saying it has to be the right time. Thank you everyone for responding and for all the support. I am truly glad I came here I don't feel so alone and am feeling hopeful.

Mommie in my opinion this is how UC treatment should go in your case: Steriods/immunosuppresants to get better then trying other stuff. When on a flare as badly as you described its improtant to get it under control, then only can you try things like diet, etc. Were all here helping out (advertising our own methods :) and ready to answer any questions.

Im so glad your strong youre ready to fight not just for yourself but for your kids. Thats the fight that will get you through this!

PS. Please dont ever stop prednisone without taper ever again.

I hate to say it, but I have to agree with Madcat. With a flare as bad as yours sounds and as much weight as you've lost, it doesn't sound like you can afford to mess around with alternative, natrual treatments. Don't get me wrong - they are GREAT, and if/when people can use them to control symptoms, I love that because I'm a big proponent of natural, holistic health. However, just speaking from experience, I have been in your shoes and when things are that bad you really do need the big guns first in order to get things under control before you can transition to more complimentary, alternative methods. Although diet and supplements seem to work great for *some* cases of mild/moderate UC, I don't think diet alterations will do much for you at this point.

As awful of a drug as it is to be on, prednisone is your best bet for getting things under control as quickly as possible, if immediate relief of a nasty flare is what you are looking for. Biologics and other immunosuppressants can also be effective (they work for about 50% of severe cases, which is more than any other treatment out there, alternative or otherwise), but they generally don't kick in as fast. Prednisone on the other hand works for almost everyone, and it takes from a couple days (for some even hours) to a couple weeks to start working. Once your symptoms are gone you can try slowly tapering off the pred, but make sure you have some other sort of maintenance medication in place by then or your flare will certainly come back as it did before. Once you are *stable* and off prednisone, then you can try whatever other methods you want to keep yourself in good form.

Of course there are also all sorts of nasty side-effects we all get from it (see my post called "Dread of Pred" in the first month of my blog), so I understand the resistance, but there ARE things you can do to combat the side-effects, like taking lots of nutritional supplements... and also keep in mind it is short term. Obviously you should choose whatever method you think would fit your needs best. If you have time and energy to continue this trial-and-error process (which is what everyone with UC needs to do at some point to find a good combo that works), then go ahead, but just a fair warning that the methods you're trying are way less likely to work when you are in this bad of shape.

If there's one thing I've learned in my seventeen years of UC, it's that everyone responds differently to every type of treatment, including all the ones you have heard about and want to try..... meaning that there is probably only one or two methods out there that will work well for you and no way to know which one that is. So unless you want to risk more months of what you've already been going through, which is likely what will happen if you continue on your present course, prednisone is your best bet. And I HATE saying that because I HATE prednisone. (As do we all.)

And as was mentioned before, if nothing else works, or if you just want to be done with it all, there is always surgery.

Sorry to sound like bearer of bad news - I usually try to make my posts more positive. But I just want to spare you all the continued pain of what I went through doing the same thing that you are now. :-(

Whatever you choose to do, the strength that shows through in your post is beautiful, and it is what will get you through this.

I love prednisone bootstrap not everyone hates it :). It really depends which side effects you get I guess.

If you cannot afford your medicine, ask your Dr for samples, If he prescribes it, he should have some.
Sign up with the drug companies for low/no cost prescription cards.

Remember, It didnt take overnight to get this sick, It will take a while to feel better. and lastly, Love
yourself, there is no one on earth like you.

Carlie

I forgot to add along with all of the other changes I have been making I have also been using a lot of tumeric, ginger, and olive oil in my cooking. Not to mention a ton of berry and banana smoothies. I am just so excited this morning. Usually I wouldn't get my hopes up because I know that the end of one flare is the begging of another but this time I am not worried. I really think that I will be able to do things to better care for my body that will help me stay out of a flare in the future.

Yesterday I was at a loss because I have tried so many things that worked for others and they didn't work for me. I didn't want surgery and didn't want meds. Now today I am noticing a difference in my symptoms and overall mood and health. I don't feel depressed or anxious I feel calm and relaxed and overall pretty joyful.

I have an appt set up this week with her to see what my options are other then the prednisone. I told her this morning about my progress this morning as well as how I have been feeling the last week and she said that if I am continuing to see progress before my appt on Thursday then we may just continue what I am already doing and not put me on any meds because if I am seeing progress then meds are not necessary. I still have a colonoscopy in the next couple of weeks I was waiting for this flare to end first because I don't want to make it worse. I ate breakfast this morning and did not have to run to the bathroom afterward nor did I have any cramping while eating. It has been a while sense I ate and have not had to run to the bathroom. So this is good. I am feeling hopeful.

I'm glad you're starting to feel better - that's great news!

If you're doing Paleo, then you're probably staying away from gluten... who knows maybe that is one of your major triggers?

Now that you're feeling better and seem to be stabilizing, in addition to diet modification, you may also want to add certain supplements: L-Glutamine amino acid for colonic repair, and slippery elm powder as well, what about probiotics - which ones are you on and how much of them?

 

InSoFla I am drinking Kombucha which is loaded with probiotics I am also going to be making some kraut too. I am also taking Naturalist brand with Lactobacillus Acidophilus that contains 1 million that I take once a day in the morning with breakfast as well as Womens one food based multi that has lactobacillus and sporogenes 25,000,000 cfu in the morning before breakfast. I am also taking 2800 iu of vitamin D, b complex, c and echinacia (sp). The multi has a, c, d, e, k, b-1, b-2, niacin, b-6, folic acid, b-12, biotin, b-5, calcium, iron, magnesium, zinc, selenium, magnese, chromium, molybdenum, choline, inositol, boron, citrus biflavonoid, dong quai extract, spiriluna, red clover, kale, spinach, dandelion greens, beet, protese, amylase, betain and the probiotics. I have been taking these for about a week.

I have been gluten free for a while now and I have seen a huge difference but I was still flaring. I think maybe it was grains I was using a lot of rice flower and other grained flowers for baking. I was also eating a lot of processed gluten free items. I think the raw food diet and juicing was to harsh on my system and so the steaming of the veggies and greens has really helped with digestion. I chew things a lot better now too. Another change we made is why buy mostly organic produce, frozen veggies, grass fed meats, organic eggs and butter. Mostly organic everything. The past couple of weeks. We have made a total overhaul on our health sense I went raw. But we are really enjoying the paleo diet. I cook a lot of SCD and GAPS recipes. I am going to be making SCD mayo, Dejonaise, and ketchup. As well as jams and other dressings. I truly believe that nutrition plays a huge role in our over all health. I truly believe that system started attacking itself from years and years of abuse that was done to it. I grew up on hamburger helper and mostly microwave cooked foods including meat and cake. Yes my mom cooked steak in the microwave and yes to me it tasted good probably because I didn't know any different. The cake did too. I even cooked eggs in the micro until we got a griddle. We rarely at fruits or veggies unless they came from a can. I rarely ate fresh fruit. After I moved out I continued my awful diet of fast food, fried food, tv dinners, boxed meals, frozen meals. Rarely eating fruit and veggies. I am so glad that I have provided those items for my children. My five year olds favorite snack is date sauce which consists of dates and coconut milk blended together on celery. I have always provided them with fruits and veggies and offered them at dinner which they usually ate them. But we still bought a lot of processed snacks and foods and a lot of canned fruit. Now we are off anything canned and only eat fresh or frozen items. Mac and cheese is gluten free and made with real cheese. I just found a recipe for almond flour chicken fingers that I will make for them soon. We are in the process of going completely paleo. I have been able to eat spinach just fine I actually had some with fish the other day. It was steamed frozen spinach. With no issues other then what I was already experiencing. It did not make anything worse. I also put fresh spinach in my smoothies from time to time with no worse effects. I have also been able to eat sunflower seeds one of the few nuts and seeds that I can eat without it causing more irritation. I do eat almond butter and drink almond milk which I do fine with. I can eat chedder cheese fine but cows milk I can't eat. I can also do coconut milk. I cook and bake a lot of coconut oil. So I figured I can already stomach spinach and sunflower seeds without being triggered into a worse state so why not give the spinach and sunflower thing a go. I was thinking of starting very slowly and working my way up. I am going to give it more thought and time though before I start it. Gonna feel it out a bit and listen to my body as I have been doing the last week. I know that healing can be painful and sometimes things get much worse right before they get better. I had this experience with my psoriasis. Which was healed during my juice fast and raw food diet experience as well as my baby toe never had a toe nail now I have a toe nail. I also need to go back in for new glasses because my vision got better. My finger nails used to have this thick stuff under neath them and used to be brittle and had white lines on them now they are soft, and that thick layer is now gone. My skin is softer too. So I have experience a lot of benefit from juicing and the raw foods I ate mostly fruit and salad and juiced the veggies or put them in smoothies. But my colon did not like this. I thought maybe it was the detox symptoms which yes I did experience those but the pain in my colon and blood was just to much so I started eating paleo. I was doing the juicing and raw foods for a couple of months. When I reach full remission I will began to juice again in the mornings but right now my colon can't take the juice. But apparently it loves my kombucha and this is my first batch and it turned out awesome. I have noticed today that whenever my stomach starts cramping if I take a drink of kombucha the cramping stops. Don't know what the relation is. Maybe I am giving the bacteria some other bacteria to fight so they aren't attacking my colon. I don't but that is just a thought. I am still very excited about the way I feel today.

I'm glad you're feeling so much better. I'm not very hopeful that it will continue, sorry to say. Women have a lot of changes day to day due to our hormonal cycles - it is possible this break in your condition will reverse itself in a week when your hormone profile changes. Sorry to be such a downer, I'm glad you had a good day.

It sounds like you have found something that works for you, I hope it keeps working. I'm gonna throw this in though, I had surgery when my son was almost 2 because I was tired of being an absentee mom, tired of my kid playing in the bathroom for hours at a time. So, kind of like bootstrap, I said, get this *(^*&%&( thing out of me! And i really was at the point where i would have just done it myself! I opted for a permanent ileo (the bag) because I wanted it over and done with. I'm probably the most vain person in the world, and I have had no self image problems. I occasionally get annoyed with it, and I look at all the crayon on the shower wall where my son drew while i sat in the bathroom for hours, and I'm perfectly happy again! Its not an inconvience to me, only takes a few minutes to empty, and about 10 minutes once a week to change. It sure doesn't run my life like UC did.
But it's something you have to be totally ready for. I hope you can stay better!

Mommie, I'm glad things are working out for you. I responded to the Spinach/Sunbutter diet thread, but i will spare you the time of having to go through it. Here is what I do. I use raw Spinach that I buy at Whole Foods. It's called Baby Spinach. I throw it in with my smoothie in my Vitamix Blender. I throw a heaping tablespoon of Sunbutter along with my Barleans Greens and Hemp Protein powder. I also add 3 tbsp of Braggs Extra Virgin Olive Oil, Flaxseed. I will also occasionally add cucumbers. I also use Raw Meal from garden of Life or True Vitality from Green Food in with my smoothie. I also add extra scoop of Barley Grass and Alfalfa from Amazing Grass. Ofcourse, I take my supplements. Krill Oil, Vitamin D (5,000 I.U in the summer, 10,000 in the winter). Vitamin E, Vitamin C, Oregano, Garlic, Chlorella, Curcumin, and Liver Force. Plus, my multi on top of all of it. IMO, eating Spinach raw is the way to go. Anytime you cook anything you lose the nutrients thats in the food. Hope my method is helpful.