Ulcerative Colitis Tips


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Cheer Up Everyone and Let’s Figure This Out

Introduction:

Hello dear band of brothers in this UC/CD war, I am a 24 female from China, got my statistics master degree in U of Minnesota, MN and worked at Tampa, FL.

My Symptoms:

If you have UC, what symptoms do you have currently?
cramping and urgency before BM
Can not gain weight
fatigue, especially after lunch to night
low platelet,muscle cramping
random abdominal pain here and there after meals
loose stool or really bulky constipation-like stool

My Story:

To begin with, I am not a very healthy person persee. I was sick a lot when I was young and had a lot of stomach problems. But I began to suffer from these extremely bad health conditions ever since I came to America… I do not mean to offend you at all, but I think lacking of knowledge about the food industry here in the U.S. made me really test the bitterness of bad diet.

I have endometriosis (another autoimmune diseas) and a very sensitive stomach, both problems greatly agrreavated ever since I came to the U.S. and eat with my American host families… I started to have frequent bowl movements and loose stools late last year, and my weight began to really drop a lot! I weigh about 88 pounds now and I’m 5’1”. My BMI can not even be found on a normal reference graph… The weight I lost due to constant cramping and BM and occasional bleeding made me lose 15% of my weight! I can’t believe it.

I have seen so many doctors ever since I had endometriosis, both Chinese and American. I have to say American doctors are so difficult to communicate with when you are a patient. I don’t understand why I wait over 1 hour for them while they seem me for less than 10 mins. Anyway, all my experience with them are endless blood tests and medicine prescription: rounds of rounds of antibiotics, anti-acid drugs, birth-control pills…. I had enough to a point I do NOT dare to see them, and I do NOT want to see them anymore. It’s like they treat all side effects as NOTHING, which is the most annoying part. That’s generally the same when we help them to analyze the drug effect during clinical trials: they care a lot more about drug effect than toxicity. The toxicities data are usually much less followed-up and recorded. Of course I learned from the aspect of public health, sacrificing some people’s benefits by ignoring their toxicities meet the government and industry’s needs, because the drugs do help to some extent, for some people.

Since I had enough with all the drugs and surgery with my first “autoimmune” disease–endometriosis, I determined not to use drugs for my UC/CD from the doctors unless I know they are really good with minor effects or unless I am going to die. So I have been arrogantly, like the doctors, not using any drugs, despite of my very bad crampings/loose stool/diarrhea/constipation with diarrhea/significant weight loss…

I had a very hard time with my husband (the only family member in U.S.) and friends, since they could never understand my feelings and kept saying “go to the doctors and you will be better”. Sometime I had this mental problem that I doubt I will develop serious psychological problems by being so distant to others and depressed. I prayed a lot to Lord, and my sisters kept praying for me. But I do not behave well. I got so easily disappointed and depressed, cried a lot when alone, complaint even more about my valuable full-time job which supports me and my husband. I think Lord made this journey long enough for me to realize how many problems I have with myself beside my disease. Frankly, I almost never found someone who became this sick without being overly under pressure. I think Lord is really using this to change me and not to be a very extreme person in anything, and try to accept everyone’s idea and love, even if they are not the kind that I am expecting or needing. I wrote this just to let everyone who suffered enough (We know better what each one has gone through than our families) know that Lord never discards us once when we have faith. I have not been behaving well but he faithfully lead me to people who overcame their UC problems with their faith. I think we all need a very good attitude, a victorious attitude for this disease mentally before we beat it physically.

Now to my current situations:
I use probiotics, tried 3 different brand, and they helped a bit, and I experimented with my diet several times (with endometriosis, I can’t have any diary, red meat according to endo-diet), and it’s very difficult. I lost a couple of pounds very quickly everytime I tried one new diet. So far, I have been doing OK on ‘soft’ veges+non-red meat+yogurt+fruits+ RICE! I have to eat rice to keep my weight. But I try to soak the rice before cooking them since there are people saying something in the grains has the effect of deprive your body minerals… I cook rice porridge with a high pressure cooker. I hardly grill my veges/meat. I almost always try to steam them or boil them.

At the time of seeing a good sign on my diet, I really want to discuss with your folks about the long-term problems we might have for SCD or whatever diet and the health products:
1. Don’t you think the SCD diet has something needs to be improved? For some reason, I don’t totally agree with the theory Elain proposed, since I know from my biotech degree that fat and protein essentially break down or transform into carbohydrate when you don’t have enough carbs, and fat does have long chain carbs in their structure.. I also doubt why I seem to have problems with bananas and grapes. Could this actually be a fungi infection? Because carbohydrate feed the yeast so well and especially bread?

2. Do American health products like probiotics/herb supplement/vitamins and so on get tested for chemical (e.g.heavy metal )poisoning? I started to realize this problem when I chat with a doctor (not as a patient but a statistician) today. I think it could be a long term problem once we just see someone has a good effect on aloe vera juice or fish oil or turmeric and start to buy them from health store. In the long term, it may be very bad if they have chemical contaminants.

3. For those who have success with SCD, do you still do bad once you introduce rice/fruits/other carbs?

4.For me, I have never do well on eating porks/beef when I have GI problems, and this strict SCD diet make me feel so limited in the food. I also have a lot of problems when I have pumpkins and some other SCD legal food. I remember Adam says it takes not long for our gut to heal once we find out a way not to irrigate it, but why the SCD takes so long?

I wish everyone the best in their life and let’s learn to enjoy the valuable part of life even when we are very sick. I heard someone saying life is like taking photos, you skip the bad part and focus on the valuable moments.

God bless you all,

Ann

Where I’d like to be in 1 year:

Gain 10 more pounds in a healthy and natural way(although that’s still underweight for me I feel satisfied enough to have more weight)

energy level goes to normal and I can exercise, not just walk!

Become a really optimistic person without so much fear for life, and would be able to help others and enjoy other’s love

Colitis Medications:

probiotics: garden of life
candida clear
vitamin B complex
fish oil

written by Ann

submitted in the colitis venting area




18 Responses to Cheer Up Everyone and Let’s Figure This Out

  1. :) July 31, 2012 at 5:23 pm #

    wow, nice to read all about your journey. Hope you are keeping well:)

  2. uma July 31, 2012 at 6:14 pm #

    Hi Ann, Do you have UC or CD. Did you under go colonoscopy. You did not mention about loosing blood in your stool. Most UCer’s loose blood during a flare. Anyway different things work for different people. I am a rice eater, I am from south india and rice is our staple food. I know for a fact that it does not harm me.I dont follow SCD. Never did. I have UC for almost 22years now. But right now in total remission after starting the probiotic garden of life. My UC started after a visit to The United States. So there you are. You must figure out what works for you. good luck.

    • ann August 1, 2012 at 8:16 am #

      Hey Uma,

      Thanks a lot for your advice. I did have some occasions that I lost blood but that’s not a lot as I see for most people. But my diarrhea and excrucinating pain from my belly is solid evidence that I am at some stage of UC just not wait until tons of blood coming out. I learned from my first autoimmune disease that don’t wait until you see full symtoms. I kept losing weight which is another huge concern: I look like someone flee from concentation camp, I guess.

      But have you been on any medications for UC? Do you only take Garden of life? It’s funny I just found out my garden of life bottle says it contains yeast as well, although it’s said to be a good strain of yeast…

      Keep in touch and best luck,

      Ann

  3. Jennifer July 31, 2012 at 8:57 pm #

    Hi Ann, good questions. I am in my first flare and while I’m having good success with meds (I found a very good doctor) I know I wouldn’t be making any progress without diet. Here’s what I’m finding:

    Meat (fish, chicken, pork), cooked vegetables and white rice are my staples. I eat a lot of avocado and coconut milk to keep weight on. Bananas and sweet potatoes as well. I couldn’t do eggs early on, but they seem to be ok now.

    I’ve been reading a lot about lectins, which is a natural pesticide coating on all whole grains. I can’t do any whole grains anyway (brown rice, oats, etc.) but if you can tolerate them, that’s when you need to soak them overnight to remove the lectins. No need to soak white rice.

    I’ve had to cut out: caffeine, alcohol, gluten, dairy, whole grains, raw vegetables. I’m trying to cut carbs but I’m an athlete so it’s really hard. I’m starting to make gluten free muffins with 50% almond flour to cut back a bit.

    Supplements include probiotics, plus I just started on two natural anti-inflammatories: boswellia and astaxanthin (both seem to have the most science behind them) plus 4000 mg of vitamin D. If you haven’t gotten your D levels checked, you really should. Mine were very low, and low D is linked to UC.

    Meds: this first flare is fortunately mild but dang, it’s persistent. Lialda has kept it from spreading (my symptoms are definitely worse when I don’t take it) and I finally crumbled to getting on prednisone. Finally starting to taper from 40 mg and so far so good.

    I understand your concern about doctors, but if you get a good one it could really help you. The meds can help get it under control and then you can use diet to manage it. My 2 cents :-) Good luck!

    • ann August 1, 2012 at 8:12 am #

      Jennifer,

      Thank you so much for taking your time and the good advice! It’s great to hear your are an athelete. I am mostly bothered by my chronic fatigue and pains from random places like my ankle, lower back, and of course my colon.. How do you keep your energy levels or they are just fine once you control your diet?

      Thanks again and best wishes,

      Ann

      • Jennifer August 1, 2012 at 12:06 pm #

        Hi Ann,
        Regarding your energy level question, I was dealing with a LOT of fatigue and low energy until I cut out gluten and dairy, and increased my vitamin D levels. These changes made an enormous difference. But I’m also on the mend thanks to the medications. I was quite worried about the side effects of prednisone but I haven’t had any so far, thank goodness, and I think between the meds and diet I’m very close to getting this into remission. I’m all for trying alternate approaches like diet and supplements and totally believe they’re necessary, but I also think that sometimes western medicine can really help get things under control.

        • Jennifer August 1, 2012 at 12:09 pm #

          another note on fruits… be sure to choose low fiber fruits and don’t eat the skins. Apples bother me for some reason. Good ones for me are peaches, apricots, mangos, pineapple. Agree with Steve’s comment that you don’t want fruits getting slowed down in your system, so I’d eat them first in a meal so they’ll clear out before the heavier stuff.

          • Steve August 1, 2012 at 12:21 pm #

            Depends on the fruit and person but yes, certain skins can be a problem for some. Sometimes, it is a actual skin issue. Sometimes, it is the fruit itself and how it was treated with pesticides. I said it in another post—man this place is so cool—but certain fruits do not do so well when combined together. Melons alone and as the first meal of the day. Sweet fruits a little while after that—bananas and dates. Sub-acid after that—apple, mango, grape. Then lastly, acid fruits like oranges and pineapples. Again, going out of order may not affect you…but if you are experiencing issues when eating fruits, usually it is because whatever you ate before or after the fruit did not combine well with it. I suspect this is why Elaine suggested cooked fruit at the start of SCD and being careful about raw fruit.

          • ann August 1, 2012 at 1:50 pm #

            It’s interesting you didn’t mention bananas. Do you have any concern for that? Sometimes I eat banana and have this bad gas feeling. I always cook apple before I eat them.. Peach and pineapple seems to be a little harsh somehow… I am going to try in future, thanks a lot!

            Ann

        • ann August 1, 2012 at 1:48 pm #

          Jennifer,

          Thanks again for your input. I am having an appoitment at the end of the month. I actually has always doubted my colitis comes from the birth control pills the doctor prescribed for endometriosis and the laparoscopy I had for endometriosis too. I start to have serious GI issues every time I had some treatment for endometriosis… That’s how I develped this bad impression of hormone treatment. The other thing is probably because I do too much toxicity analysis during clinical trials and get all these symptoms and grades from medicines are just horrible… I believe I had some paper on predinose, but that one didn’t give us toxicity data since it’s not a clinical trial. But researchers were looking into the possiblity of reducing the dose..

          • Steve August 1, 2012 at 2:16 pm #

            Ann…about bananas? That is how I learned what I shared with you the hard way. Every time I ate one, I would get bloated or have pains—one particular time it was so bad I contemplated leaving my work without asking because the cramps were so severe. It all came from having heavy foods in my stomach while and eating the bananas before I was “empty”. See…I knew this but I didn’t put two and two together until recently. I would also surmise that the sugar content in the individual fruit will matter. Unlike bananas, many fruits have high water content thus less sugar. The higher the sugar content, the more likely the food will ferment in a stomach that has other foods in it. Once I stopped making this silly mistake, eating became a breeze and no longer a guessing game…which it truly was prior even though I knew everything I know now.

            One thing I didn’t mention is to always smell your food, particularly raw produce. If it smells pleasing to you, your body would not mind having some. If it doesn’t have a smell, then it would be best to not eat it at that time. I know it sounds a bit silly but it works. lol. Smelling food also aids in digestion by releasing the necessary chemicals into the digestive tract.

  4. Steve August 1, 2012 at 11:32 am #

    Hi Ann. I posted a lot today so I am sorry if I miss a little bit here.

    About doctors…much like yourself, I have had bad luck with doctors. My first specialist nearly ripped my head off because I insisted diet affects UC suffers and I told him my plans to heal naturally. This was after he told me we would try any treatment plan I wanted. I have had other experiences where a doctor insisted a try a medication despite my beliefs that the medicines do more harm than good. He had me up the dose three times before I finally said I had to stop—I was bleeding more than I ever had and as soon as I stopped the medicine, everything calmed down. My advice about them is find one that will work with you…but be firm with whatever your beliefs are. Sadly, my current one is leaving his practice so I am looking again…but there are doctors will take a more natural approach first. Even then, they still will get things wrong. And all I mean by that is many of them only take one or two classes on nutrition in order to become a doctor. Their primary training is centered around diagnosis and using medicines or surgery to treat patients…rather than using prevention first or as you said…looking at side effects. Antibiotics will wreck the body of a person with UC for example.

    On to your problems…I don’t want to go into a long explanation here so I will try to keep it simple. While the SCD has some great principles, one problem lots of people seem to have, at least when their gut is still sick, is that they cannot tolerate fruits and vegetables very well. I think I know why this is happening and it is because meats, eggs, nuts, etc…are digested much slower than fruits. When fruits are thrown into the mix, they are not digested properly and left to ferment in the gut, causing issues. So at best, we have food fermenting creating gas and bloating and discomfort. At worst, that undigested food is continuing the cycle of bad bacteria in the gut. Either way, it creates issues for us. My suggestions? Go back to the beginning and introduce foods more slowly or at the very least—you gut may need to heal more before you introduce certain things—or avoid mixing fruits with meat and heavier foods. Again, without the proper digestion, it is just creating more trouble.

    Keep in mind two things that sort of go along with the above and your energy levels. Digestion requires energy to be accomplished. The harder your body works in completing digestion, the more tired you will be(and the more you will have to eat) so try eating simple foods like fruit and vegetables with less rice/meat. The fruit and vegetables are easier to digest. Also, ever try a juicer? Making your own fresh juice is a great energy boost. Do it cautiously if you are experiencing symptoms as juicing can accelerate your body’s elimination process—it is a good thing but as a UC suffer, going more doesn’t seem good. It will also help in the digestion process as juicing will give you all the nutrients and minerals while your body does not have to break any of it down.

    I can tell you I juice from time to time and am trying to do so every morning. I feel great and have starting working out again. Contrary to popular belief, when I juice properly—without eating a bunch of other junk—I don’t need to use the bathroom for sometimes hours afterward. Just the other day I walked so far on a mid day walk I had to carry my 60lb pit bull part of the way home!

    I could rant all day…sigh. Keep in touch and let us know how things are going? Steve

    • ann August 1, 2012 at 2:05 pm #

      Hey Steve,

      I appreciate your suggestions and thinking here for UC and my symptoms. I surely will think about your words. As for the vege and fruits dominant diet, this is the one I mostly agreed with once, after reading a book called ‘healing UC and Crohn’s…’ by a doctor who himself has this disease. However, I lost 5 pounds in a row in a very very short time.. I didn’t even notice it. I got scared and swore to myself I will never just eat fruits and veges mainly even though they gave me perfect poops.. As you know, my BMI is under 17. With 88 pounds in hand, I don’t want to spare a pound. I then switched to this meat and rice mainly diet with lots of veges, and began to find out I don’t tolerate fruits well. For two reasons: 1, the tough skin and water content, which takes up my stomach space, leaving less room for higher energy food, and this is especially difficult for breakfast. Fruits are once my favourite, and I googled all this wonderful smoothie recipes, but after one bottle, I can’t eat anything more. I have a very heavy work load for my work, and fruits are not enough to sustain me for energy. I also don’t have enough time to eat during work hours…(no choice)
      2. The fruits are generally too sweet and I find I have more gas with them.

      What are your suggestions? I love the antioxidant property and rich minerals in fruits, just don’t know how to incorporate them. I also found grapes are triggering my inflammation every time I eat them… Sad.

      Ann

      • Steve August 1, 2012 at 2:55 pm #

        Well, as I think I suggested, your problems with the fruits are likely coming from the meats and rice first. Not necessarily the fruit…because the when digested, all the foods breakdown at different rates. The heavier foods are fermenting the fruits creating the pain/gas/bloating. Remove them, you can tolerate fruits unless allergic. Yes, meats and rice have a higher energy output per say, but only if the body can break it down to use it—and that is a common misconception. A lot of the time, we cannot use it to its full potential. In a compromised gut, that is a hard feat, with often food rarely staying in place to be digested long enough. You have read Dave Klein’s book so you know this…but you will lose weight eating raw. However, once your body cleanses itself of toxins, it will come back stronger and healthier. For some people, the nastiness they have in their bodies is a great bit of weight. So yes, you will initially lose weight…but you will settle out at a perfect weight, often gaining a lot of healthy weight back. If I were you, I would forget my weight and focus on my energy levels and well my gut feels. If you have energy and your UC subsides, is your weight anything important? Most health professionals would say no. If you are afraid or feel you do not have the time, I would suggest finding a natural health nutritionist who can help you develop an eating plan for someone your size with your activity levels in mind. Also, check out thegardendiet.com for pictures of those who follow the diet. You will see that people end up at normal weights from stories and the site is about a family who eats raw.

        I know how that feels…to feel great eating the fruit…but also scared that I am not getting enough or concerned because that diet goes against everything everyone says. But like I said above…the more you eat raw, the less your body will have to eat—lower calories needed for less work. Lastly, one other thing you may want to do is this. If you are tolerating everything well when cooked, or you tolerate everything but raw produce, try eating fruits for your first two meals or more(I assume you eat at least 3 a day)—if not, there might be your issue. Cramming too much food at once will make a UCer pretty miserable. We can’t run ourselves like everyone else can and eat that way without consequences—following the fruit guidelines I suggested from Dave’s book…then for last meal—eaten at least 3 hours before bedtime—have steamed vegetables and a small portion of meat prepared so that it agrees with you or anything else you like that might be heavy like a muffin. That will offer you the least chances of stomach discomfort. Likely, I’ll be following a similar plan…juice or smoothies in the AM, more fruit with some non-starchy greens for lunch—maybe a salad with lemon juice for dressing and a homemade yogurt, followed by some steamed vegetables with spices I know my body tolerates, maybe a small piece of chicken with a honey glaze, and maybe a muffin or something for desert. I truly believe a meshing of those two worlds, raw and SCD, is probably the ultimate way to eat as a UCer…but I’ll know more soon. Good day!

      • Steve August 1, 2012 at 3:12 pm #

        I am sorry for my double post there…my mouse fudges sometimes and clicks twice when I only click once. A few things I missed with Ann.

        If you have trouble with smoothies in the morning, if you can at all wait a few hours or at least until you are up and moving around. Movement aids in digestion. I find often I am not hungry in the morning right away and part of Dave’s book talks about eating only when you are truly hungry. Also…if fruits are awfully sweet to you, there are ways to get around that. You can eat them with any non-starchy green veggies—like cucumber, lettuce, spinach, zucchini, etc. Adding a small amount of vegetables to a sugary meal may help offset the feeling of having so much sugar—and with green non-starchy vegetables, there should not be any digestion issues. Oh and last, grapes…are you buying organic grapes? If not, you should. Being a fruit that absorbs water as they do, the pesticides can bother UCers. If you do get organic, it could be that they are not triggering inflammation as much as they are causing you to go—after all, they are a lot of water. When eaten with foods they do not digest well with, they will make you go a lot. Certainly do it to me…but it was because I was working when eating and not eating when mentally relaxed. That makes a huge difference too! Dave advised me to leave work to get better and he was right. Only then did I see results. Like you, I pushed myself despite being sick because i didn’t have a choice. Well, I finally decided my health was more important and made the changes. Okay. Until next time. :)

  5. Marco August 8, 2012 at 7:20 am #

    Hi, Ann, I am so glad to see you that you met several so helpful friends here in the forum. Hope you all will find help and strength from each other, all my best wishes

  6. Jon August 26, 2012 at 11:31 pm #

    Ann – did you end up getting that consult / colonoscopy? As Uma mentioned towards the beginning of this thread it sounds like the UC diagnosis is still in question – crohns, IBS, coeliac and even the combination of your other abdominopelvic problems could account for a lot of your symptoms. Not to mention the culture shock of moving to an American diet! I’m sure the gringo portions and greasy fair on offer could cause those symptoms in many unaccustomed to it! Please keep us posted as your diagnosis becomes clear.

    Steve – great to hear your insight. I hadn’t thought about the fermentation processes that were occurring in my GI tract, but will be conscious henceforth. Have you tried cabbage in your juicer? Can’t give you any solid scientific references on it, bit I got some relief from hitting it pretty intensively for a while. Palatable if youcut it with some green apple, lemon and ginger. As you know I’m a 7 year sufferer, emergency doctor, currently in a nasty flare, on pred and looking back into more intensive lifestyle modifications (thus me scouring this site!) what’s your background? As a newbie, didn’t know if there was a profile section / private messaging, etc?

    • Steve August 27, 2012 at 1:19 am #

      Nice to hear from you Jon. Yeppers. Eating the wrong foods together will cause distress in the digestive tract…something I imagine many people are unaware of because living here in the States, we never slow down enough to eat in peace let alone pay attention to what our bodies are saying and even slowing down would be greatly positive. No, I have not tried cabbage with my juicer, although I imagine it would bring positive results. My story was actually just posted recently(A Long Road It Has Been—you can pop the name in the search function at the top and it should be right there if you want to check it out)…I am guessing you have yet to post being new? I’m relatively new as well but it doesn’t feel that way. My background? I’m just someone who knew things were askew as soon as my first GI said more or less, “Your life will never be the same”. After that and me giving him questions he couldn’t answer while being on medications that were making me bleed more on them than without them…you get the idea. I’ve made it my mission since—the seriously difficult path it was at times—to study all I can about UC. I’m curious to see what you think about this.

      UC and diseases like it are essentially inflammation of the digestive tract, no? Inflammation is a natural reaction when the body is not well. All the medications for UC do is stop that reaction from happening, there by never attacking the root of the problem. Sure, the medicines might work for some…but at what cost to the rest of the person—kidneys/liver/immune system? And keep in mind, UC patients suffer a great deal so when medicine is offered, they may feel the medicines give them part of a life back when they had none before or are the lesser of two evils and par for the course. It never means they are healed. They still experience symptoms—as proven by this site. In the end, their meds fail and they get put on stronger meds, all to stop that same reaction…without killing said patients.

      My long winded point is this…is it not possible that UC is a natural reaction of the body trying to cleanse itself? One where it is toxic and sick and it puts itself into a UC state to try and get better? Some people think that is a crock of horse manure but think about it. When a person eats horribly and ends up with nearly clogged arteries is it the end of them? No. If they eat right and exercise, they can become a brand new person barring any serious damage from a heart attack. What if someone smokes? If they stop, are their lungs doomed forever? No. Over time, the lungs can comeback from all the tar and what not. The same is true for the digestive tract with a small caveat…the digestive system, unlike any other part of our bodies, is susceptible to all the stresses we feel in life, be them emotional, physically, or otherwise. In other words, there are lots of variables that can affect one’s guts so it is not so easy to look at like the heart or lungs…very few people know that the digestive tract shuts down when a person is under stress(part of the flight or fight reaction)but if whatever is causing the inflammation is removed, the body can heal provided health is a priority.

      Just sharing my thoughts. And even if I am wrong, on what planet should our medical field be treating people by putting “band-aids” over their inflammation, rather than find the reason for the inflammation to begin with? I mean, I know UC is not well understood because the doctors are trained to look at medicine and surgery as treatment. But what about the natural powers of ourselves? The human body is an amazing machine that modern medicine aptly ignores. If anyone made it this far, thanks for reading another late night post of mine. And good morning! Steve

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