Ulcerative Colitis Tips


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Your Doctor Might Not Know Crap About Nutrition

Meet Robert:

51 year old male diagnosed with U.C. Married, two kids. I am not a medical doctor but have studied much over the years about health and nutrition. I am frustrated in general about how most doctors do not spend time connecting sickness and poor nutrition. Instead they see medicine as the answer. I have worked in Central Asia for almost 10 yrs. with Small Ngo s trying to help people improve their own health and finances by improving the agricultural techniques.

Some more background:

I like to garden, live in Switzerland, love chocolate and cheese, and Colitis is changing the way I think about feed. Aaaaaaggggghhhhhhh……………

Robert’s Symptoms Right Now:

Pain, bloating, inability to eat certain foods, weight loss, weakness, anger, frustration etc.

Robert’s Story Colitis Venting Story:

Most doctors don`t know crap about nutrition. Or at least they choose not to tell you what they know for some reasoning that I don’t understand. Yesterday, at age 51, I had my second colonoscopy. This came after 48 days of abdominal pain, bloating etc. The Doctor confirmed Ulcerative Colitis and showed me on a diagram where he took the 19 biopsies from my colon. 19? Excuse me? To make sure we looked everywhere, since you have a family history of cancer, he said to me.. And then I did it; I brought up the D word. I asked him if there was a specific diet, or at least a good reference list to get me going in the right direction as a new U.C. patient. Diet? He looked at me, showing very little emotion; Well, up until now no one has come up with a standard diet that will consistently help U.C. patients. And when I asked if I could be referred to a nutritionists when my biopsy reports came back, he said yes, of course.

The next morning as I sat on the toilette, producing blood clots from my bottom which woke me up immediately, I began to wonder……..

Why does it seem like only the tree huggers, naturopaths, and esoterics seem the get the real connection between nutrition and total body health?

In the end, he gave me a new prescription for a slightly different form of Salofalk. Take it every morning till you die, he said in so many words. If you have a flare up, just double it. It`s fairly safe. The risks of getting cancer far outweigh the risk of the medication, he told me. I did not like the options he was giving me. Do you like your medical options? Do you? I think the doctors are doing their job. They are well qualified, most of them, to treat patients as they have been taught. Sorry to get so philosophical. So to finalise……I just want to say that we have to research this stuff on our own, not accept all of it as true, and find what works best for us. And for some of you, welcome to middle age. lol

Previous Treatments:

The BRAT diet till I lost 20 pounds.

written by Robert

submitted in the colitis venting area




BRAT

18 Responses to Your Doctor Might Not Know Crap About Nutrition

  1. Tom
    Tom January 28, 2015 at 3:38 am #

    Robert

    Why does it seem like only the tree huggers, naturopaths, and esoterics seem the get the real connection between nutrition and total body health?

    The question to ask is who shouts the loudest. If you took alot of the things at face value you read on the internet about success with diet for UC, you’d end up thinking that as there are so many people who have “success” with diet changes, why don’t doctors look into it more and consider it as a viable treatment option. People who don’t have success with diet don’t shout about it so while you may get 50 people saying how great diet changes have been, you can easily find 500 more who tried and got no improvement whatsoever.

    There’s an underlying conspiracy going round about how it is not in Drs interest to stop giving meds and utilising free options in the form of nutritional treatments due to the pressure on Drs from drugs companies.

    Take my case for example. I told my gastroenterologist the meds weren’t working for me anymore and i wanted surgery. I then had surgery. 3 of them, at a total cost of well over £100,000. If diet and nutrition was the answer, the NHS in the UK would not be spending millions they don’t have, performing operations on people that could be treated with the SCD or whatever other “diet” is out there.

    During my research, and yours i imagine, i found no positive independent double blind research, pointing to diet and nutrition as a feasible treatment for the majority of cases of UC.

    80% of all people with a UC diagnosis only have proctitis, meaning only the very last part of the colon is affected. I don’t doubt some of those do have success with diet, but I think it’s a misconception that this option is a viable treatment for all of us

  2. Robert January 28, 2015 at 10:57 am #

    Thanks for sharing Tom. I do not long for the day when I may need surgery. But I know it happens. I was surprised after my colonoscopy that the nurse offered me a ham and cheese sandwich. I had not eaten in almost 2 days so I foolishly agreed. And then the Dr. gave me Salofalk granules, which I later found out contains Aspertame. I did not use Aspertame before my diagnosis, and now I have an alcohol based, synthetic sugar in my meds. Does this make sense to you?

    • UC Family Boy
      UC family boy February 6, 2015 at 4:53 pm #

      Tom,

      Our nhs is a management platform, not a solution based business. Although it is isn’t in there interest to solve the issues in hand, it is there provocative to get you to come back. And that doesn’t start at the doctors on the front line, that starts at the men and woman in white jackets in the labs.

      If food/nutrition is seen like a medical drug…we can mostly say we have all seen benefits from food…even if for some or most it’s short lived. Just like drugs can be short lived.

      Whilst most believe drugs to shield the problem, nutrition looks to offer deep rooted solutions.

      I once saw dealing with UC as a one angle approach, it’s true to say equal input of encouragement of good bacteria, healthy fuel driven diet and supplements goes a long way, some argue further than medical drugs.

      Drugs is man made, nature is made by nature…and nature has a way of living forever.

      • Bev February 6, 2015 at 5:04 pm #

        :)

        Love this.

  3. Bev January 28, 2015 at 5:44 pm #

    ONE OF THE VERY BEST POSTS THAT I HAVE EVER SEEN ON THIS SITE!!

    This should be given to all of the doctors to peruse. It just may help some of them to pull their heads out of their ass…that was a bit harsh…pull their heads out of the sand.

    Well said Robert!!

    Thanks for the great read…

    • Joan H
      Joan February 14, 2015 at 3:56 pm #

      Bev! It’s been a long time since I’ve been on this site, but you helped me so much when I was dealing with some of the worst aspects of my UC and inability to get it under control! I’m back to the site and looking at diet more in depth as a healing method. I have drastically cut down meds and have been on primarily only chicken and rice for over two years because anything else made the UC flare (I mean, forest fire!). Now I have severe osteoporosis from malabsorption caused by the UC, and from not being able to eat anything without issues. The dr wants me to have Reclast IV therapy for the osteoporosis because I have lost almost 30% of my bone density in the last 2 years! I’m holding out on the Reclast for now, can’t imagine t really, and looking again into advancing my diet – clueless because there are – believe it or not – NO NUTRITIONISTS connected to my GI doctors office or my primary’s office, and neither MD has been able to recommend one to me that is specific to the ulcerative colitis or the osteoporosis and the multiple food allergies I have! So I found your comment very expressive of how I feel!!! Also LOVE the comments by Robert and Tom – very true – we have to research and share what we know with each other and try and see what works for us!

      • Bev February 14, 2015 at 4:11 pm #

        Joan! Hello again to you.

        Can you tell me what the symptoms of your osteo were and how you were diagnosed? I suppose because of our diminished ability to absorb, that also goes for calcium into our bones. I never thought of that.

        We do not absorb nutrients and vitamins as well as so called ‘normal’ people. Not a good thing.

        I know that I will take iron for the rest of my life and I am probably low on a lot of other vital things, like most of us are. I take vitamin D, but I could probably use more of every vitamin under the sun as well. I wonder if we even absorb any extra that we take…

        Nice to hear from you again:)

        • Joan H
          Joan February 14, 2015 at 9:20 pm #

          Hi Bev! It was so good to see you on line again! You’re always so honest and such a help to people, and you throw a lot of humor in the mix that helps us all get through! The symptoms I’ve been having over the past 3 years, really, are progressive pain in my joints with aching and now limited motion in my shoulders, elbow pain, wrist thinness/weakness and foot, knee and hip pain. I asked for the DEXA scan because my mother had osteoporosis and I knew I was having bone pain. I went to my primary and an orthopedic MD as well as my GI dr but they all said osteoporosis doesn’t cause pain – it’s a silent disease. But when the DEXA results came back my density (which two years earlier showed some bone loss) had gone down another 30%! That’s a LOT! I have multiple food allergies, some life threatening (like nuts and peanuts), and when my UC flared badly two years ago I had to cut my intake down to only rice and then add chicken once a day. I think most of us do not absorb nutrients well, even when we take supplements. I have become a HUGE believer in probiotics, because they help with healing the lining of the intestine, and I’ve read studies that having the correct gut flora has been shown to decrease your risk of colon cancer and anal cancer, and also promotes absorption of nutrients. I’m trying to take 1200mg of calcium a day and 800IU of Vitamin D – BUT the Caltrate supplement that I could tolerate just added Xylitol (a sweetener substitute found in plant fiber) but this additive exacerbated my UC within hours and I can’t find a vit D and calcium supplement yet that doesn’t make my UC go crazy :( So, any suggestions would be appreciated. I am trying broths – did not do well with home made beef broth,trying chicken broth tomorrow….

          • Bev February 15, 2015 at 7:50 am #

            Thank you for all that info Joan.

            I’m getting a bit long in the tooth and am creaking, snapping, and aching lately. Just want to know what might be heading my way! It never ends….until it does!!

            I wish I could help you with a calcium supplement that doesn’t aggravate your UC. There must be something out there…anyone??

            Cheers:)

          • Tom
            Tom February 15, 2015 at 9:44 am #

            I think it’s important to point out that Ulcerative Colitis is not responsible for malabsorption. Other than water and salts, nothing else is absorbed in the colon so it’s not the UC causing your osteoporosis. I haven’t had a colon in 2 years and I don’t have Osteoporosis or Arthiritis. People with UC are only at a higher risk of developing Osteoporosis if they are treated with steroids. Having UC does not increase your risk of Osteoporosis over your neighbor or friends.

            As far as other autoimmune conditions associated with UC,It was explained to me like this. The strands of DNA that have been identified as being faulty in UC patients, increase your likelihood of developing other Autoimmune disorders. UC is not the cause it’s just one of the conditions we are likely to develop. The other conditions are PSC, Rheumatoid Arthiritis and many other fun things.

          • Bev February 15, 2015 at 10:41 am #

            Thanks Tom. That makes sense.

            I always thought that we do not absorb vitamins and nutrients like other people.

            Another thing is that I don’t seem to absorb fats like others either…I seemingly am able to eat a lot of fat and not ‘get fat’. People are always commenting on that fact. Especially when I used to be in a flare. I would lose weight like crazy as everything seemed to go right through me.

            I am trying to figure all of this out. I think that figuring it all out may lead to something that we haven’t discovered about this condition yet, and ultimately, to a REAL CURE wherein we never have to worry about or deal with it again. That’s all I’m trying to figure out!

  4. Kristin T
    Kristin Toussaint January 29, 2015 at 10:11 am #

    Agree Bev! Thank you for stating this so we’ll Robert. Indeed, diet may not be the absolute path to remission for all cases of UC, but it certainly is for many.
    I had my 4th colonoscopy on 12/24/14,the day after my 50th birthday. Crappy way to spend it I know, but I had met my deductible and wanted to get past it. Once again, when my doctor met with me and reported “a little inflammation and some very mild diverticulitis, but otherwise looking good”, he wrote me a prescrip for Colazal and told me he strongly recommended that I start taking it. I have been in complete remission for close to 2 years and have always reported to him that the SCD Diet keeps me there. Granted, I developed a blood clot last summer, however it came sans a flare of any kind. He dismissed my research findings that the Cortisone shot I received after a bicycling accident last summer could have been a factor in the formation of a clot and said “you don’t need to be on any special diet, just take the meds.” WHY???
    Frankly, I think doctors who make fun of those patients who do their own research are frightened and insecure about what they don’t know. Pharmaceuticals to them are a panacea until the next drug comes along and when one is proven to be dangerous, they claim innocence and harken to days when many perished without modern meds. I understand that doctors may not have the time to know all, but for gosh sakes, gastroenterologists deal with digestive issues! They should be required to have knowledge about how diet affects inflammation in the body! It’s not like this is revolutionary information; modern medical experts have been discussing this for well over 10 years. People with every disease from UC to Autiscm, to arthritis to MS are reporting success with improved diets that eliminate or minimize inflammation causing foods.
    It’s plain and simple. Improving your diet does not line the pockets of doctors. Dr. Alejandro Junger is an exception and a true healer. Check his books out.
    Good luck Robert. I love cheese and chocolate too! When my gut flora is healthy, I engulge!

    • Bev January 29, 2015 at 10:41 am #

      Another fabulous post Kristin.

      There are so many problems, which you very cleverly outlined…prescribe until the next drug comes along or until one works even a little bit as each one fails…when a drug is finally deemed dangerous (and many are and will be), shrug and say…well, we did the best with what we had and knew at the time…meanwhile irreparable damage has been done. Damage that we carry for the rest of our lives, which may, by the way, be shortened my taking these drugs…tragic, so tragic.

      This way of doctoring really IS like playing with peoples’ lives. I could NEVER become a doctor just for that reason alone. I think at times it almost takes a psychopath to be a doctor. One almost has to be unfeeling and devoid of human emotion to do what is ‘required’ as a doctor.

      Not such a glamorous profession…

  5. Mary Beth January 29, 2015 at 2:50 pm #

    I am reading this post as I wait in my 17 year old daughters physical therapy appointment 3 weeks after her colectomy. She was in the hospital for 2 weeks prior to that with a severe UC flare. She was diagnosed a year and a half ago. we had tried meds and also consulted a naturopath who did food allergy testing and put her on a diet based on the results. I’m not sure if that would have helped because she was only on it a few weeks. We spent Christmas Eve in ER where they gave her steroids and IV for her dehydration and sent her home. Four days later we were there again. That didn’t help so we took her to another hospital where they admitted her. After a week of steroids with no change, they gave her a dose of Remicade, 4 days later another. Still nothing. After basically refusing to talk to surgeons the three times they came to talk to us, we finally realized that surgery might be the only option. She went from a year and a half of minor symptoms to almost overnight having severe pain and so much blood loss that she needed 3 transfusions and it wouldn’t stop.

    So here we are. We were blessed in finding a wonderful physical therapist who is SO much more. He is trained in natual sciences and is unbeleivebly knowledgeable in the healing power of hens and good nutrition. He has taught us so much already. If only we had found him sooner. I know I can’t go there any more. This is the path she’s on now, no looking back but it’s going to be hard for me as a mom.

    On the wall here is a quote: which I thought would be a great response to this post…

    “The wise man should consider that health is the greatest of human blessings. Let food be your medicine.” -Hippocrates

  6. Mary Beth January 29, 2015 at 2:53 pm #

    I meant to say HERBS no hens lol!

    • Kristin T
      Kristin February 2, 2015 at 10:12 pm #

      Thank you Mary Beth for sharing such a great quote. Nothing could be more true. Hoping your daughter is on the path to enjoying a full life that includes good health and all the joy that comes with it! Also hoping she can be drug free and enjoy the adventure that comes with a diet rich in wholesome and tasty possibilities! Good for you for finding a health care provider who truly ants to heal!
      Agree again Bev! Conventional medicine is often wrought with doctors’ ego drama, not a true desire to heal. If they really care, they’ll ask about your lifestyle, diet, and family history. They are out there, but require a determination and steadfastness in search.

  7. Joanne March 8, 2015 at 11:52 am #

    At my GI appointments a specialty pharmacist comes in to the exam room if they are prescribing and I agree to a new medication (I have total access to her if I have any questions at any time) as well as a nutritionist. You have to find the right doctor/practice, no different than you need to find the right auto-mechanic, or naturopath (one wanted me on a high fiber diet- can you imagine that?). Not all professionals are great- some are just average and not big thinkers. Doctors saved my father’s life when he had a heart attack, and my son’s when he was hit by a car- so let’s not be prejudice and slam all Doctors and their profession. Modern medicine (both East and West) and modern sanitation ( all that poop has to go somewhere) have greatly improved the quality of our lives and extended our life span. People like us who ask questions, do some research and are willing to document our own trial and errors can push the envelope ( just look at what AIDS activist did!). It takes a great combination of thinkers, workers, activists and people willing to experiment with their own bodies. I give thanks to all the people before me who did this because with the severity of my UC I would have been dead without them.

    I drive 2.5 hours through miles of corn fields to get to the right health care people- it is worth the drive. I am really good at pooping on the side of the road – but ya gotta have a 4 door vehicle to do it well : )

    I too have had 2 Dexas and great bone loss from prednisone. I have been taking 1000 mg of calcium citrate with 800 IU of vitamin D3. At my last appointment I was encouraged to take 2000 IU of vitamin D3 and change to a Calcium Citrate with “elemental calcium”- I was told this this is essential. I have spoken with the pharmacist and she is trying to find out what level of that I will need and what products will give me enough. I have also started taking Fosomax to try to preserve what bone I have left.

    One of my GI’s and my brother ( no colon for 17 years due to colon cancer- married, happy, healthy) both warned me to stop the meds and just ” take it out” (lots of digestive illness on one side of my family). I have severe UC and have been hospitalized multiple times. I am still hoping to save my colon though a combo of SCD (thank you Adam for this site that has helped so much), meds, vitamins, probiotics- but it may cost my overall health. It is a crap shoot and my choice to continue this path for now.

    Things that I did – I insisted on both of the Dexas (2 years apart), and then more frequent blood tests to determine the levels of “stuff” in my blood ( vitamin/minerals) so we could figure out what I was missing and what I needed to supplement. I also asked for and was sent to a physical therapist to get help with strength training, etc.

    Our bodies are different and different things work for each of us. What I have learned from this site is humor, support, determination, smarts, and that assertiveness pays off for UC’ers.
    So, thank you to everyone for continuing to post your journey!
    Joanne

    AKA Princess Poops-A-Lot and her Poop-Few Crew (my very loved support team)

    • Bev March 8, 2015 at 12:38 pm #

      I know that not all doctors are useless…I have not yet had the privilege of ever finding a good one…but the life is young…perhaps I still will:)

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