iHaveUC.com's FREE email list, Join over 15,000 other subscribers

UC in the Golden Years

Meet Lani:

I was diagnosed with UC 18 months ago at the age of 65. I quit smoking in February of 2011 and started having problems in April of that year. Gastro Doctor feels due to history I have had UC since my late teens but nicotine in cigarettes kept it under control. It has been all down hill from there. I am retired now after 40 years as an Accountant, working the last 10 years in the non-profit sector. So far my golden years have seemed a little more grey/brown as I feel restricted by my UC in the things I can do and as always having been an active person this is frustrating. I would love to do volunteer work but I never know when and where the dreaded UC will strike.

I have been married for 47 years to my High School sweetheart.

Some more about me:

I am a crafter and love to quilt and knit. I am also an avid reader of both contemporary fiction and non-fiction. I love to garden in the summer and have a small greenhouse so I can enjoy my flowers all winter long. I have two dogs who I spoil rotten. My husband and I love to travel and camp (when I can get away from the bathroom long enough) and have a small motor-home so we can take the dogs with us when we travel.

Symptoms:

Frequent bloody loose stools. Stomach ache/heartburn. Don’t like being to far from home and a bathroom because when urgency hits I have to go NOW!

Colitis in the Golden Years

I have been on prednisone since June of 2011, as high as 60mgs. and as low as 30mgs. but never off of the stuff. Plus I am now on Remicade and Canasa 1000mgs., 40mgs of Prilosec and of course the dreaded Prednisone at 50mgs. My face and upper body are fat and I feel like a bloated toad. I am still having flare ups and stomach problems and just don’t know what to eat anymore. Too many conflicting opinions and diets. Does anyone out there have a diet that works?

My family has tried to be supportive and most of the time it is okay, but I do get frustrated and snappy sometimes which is not me. I think it is the Prednisone. The Prednisone side effects are something else. I have dry eye and since the Pred I can’t see out of my left eye and am on drops everyday, my taste buds are gone and I have acne at age 67. I have bouts of insomnia, where I am up every hour looking at the clock and have strange dreams. Then during the day I will be sitting and reading or knitting and just doze off for 10 minutes or so. If I would have known all the problems I was going to have I would have never quit smoking. My sister is always trying to find new things for me to try but sometimes I just don’t want to think or talk about it anymore. The internet is both a blessing and curse as it is so hard to try and figure out what is good info sometimes and what isn’t. This site is the absolute best one I have found so far and I have read the book Feeling Crappy to Feeling Happy three times when I get really down and depressed. It makes me laugh.

Colitis Medications I’ve Tried/Trying:

The predisone worked at first and gave me mega energy but now it just seems like I need more and more just to maintain. I don’t feel the Prilosec is working at all and the jury is still out on the Remicade. I think the Remicade helps for the first 3-4 weeks but then the loose stools and some blood starts to appear again along with the frequency of bathroom runs. I am also taking 2000 units of vitamin D3. I am not to sure what the Canasa does, I think it is for rectal bleeding.

I am now seeing my second Gastroenterologist group as the one I originally started with did not treat me aggressively enough and being all new to UC I was not pushy enough as to my treatment. I ended spending a week in the hospital in September of 2012 with frequent (up to 30 times a day) bloody stools, dehydrated and low potassium. I am currently on a low residue diet and miss salads, fresh fruits and raw vegetables. I feel my diet is very unhealthy but don’t what to eat and would love to find a Dietician that knows something about UC.

written by Lani

submitted in the colitis venting area




37 Responses to UC in the Golden Years

  1. bev February 8, 2013 at 3:13 pm #

    Hi Lani, Frst things first…you are correct…this is the BEST site out there!! Yey Adam!!

    Anyway, how shitty that you have to begin retirement with this awful albatross hanging around your neck. Once again, UC and quitting smoking comes into play in your story as well. If I had a freaking dime…

    This drug merry go round is the most common thing in having UC. Try this one, it stops working, then try that one until it stops working, then bring out the ‘real big guns’ like remicade and other immune suppressors. Unfortunately, it won’t be too long before they also cease to do anything tangible…except maybe create even worse and permanent health problems. Uc is a goldmine, trust me. A very expensive and tenacious condiyion, it is. Drugs do not work, or if they do, not for very long. Bottom line.

    I decided to discontinue meds about a year ago, after taking them for 15 years straight! They were doing NOTHING for me, except making me feel ill, and exacerbating the UC symptoms.

    Somehow, I managed to attain and retain remission by taking a GOOD probiotic (50 billion strain AT LEAST), first think in the am, with water, empty stomach. I couldn’t believe taht within literally days, the cramping, looseness, urgency, and everything bad, were disappearing. My body must have been crying for probiotics! I never believed in them before. After taking them diligently for over a month, some bleeding still remained, which is never gfood, so I want back to the vitamin/supplement store and was recomended fermented L-glutamine powder. I took it for two days, and the blood was gone!! I have never looked back. I never forget to take my ‘new’ natural stuff now! I have also added 4000 units of vitamin D and one 4mg capsule of astaxanthin, both of which I take right after I eat lunch, as they are absorbed better with fats. They arealso both natural anti inflammatories.

    You have NOTHING to lose to try this…I swear by what has worked for me. Also, it’s not dangerous, nor are there any harmful side effects at all! Music to my ears! Also on this site, a lovely man named Graham, from the UK, swears by extra virgin olive oil…three teaspoons per day!! It has been working for others who have tried it as well!

    You indeed have found the best UC site in the universe…read the stories…weed out the weird stuff…try the stuff that works for more than one person. You might be surprised…like I was!!

    Chhers and welcome!
    Bev
    :)

    • Barb February 18, 2013 at 9:32 am #

      Hey Bev,

      What does your diet consist of? Are you able to eat salads, fruits, red meat, chocolate and coffee?

      Barb

      • bev February 18, 2013 at 12:21 pm #

        Barb, I eat all of those things. I have my latte every morning with Starbucks espresso…dark chocolate…salad…fruit…red meat (altho not very often because I don’t really like red meat…just hamburger really).

        I realize that I am very lucky. I only seem to have a problem if I eat too much straight wheat. I will actually get some blood the following day if I eat like a bowl of shredded wheat ceral…so I don’t do that anymore. I can eat a whole wheat bagel, and my colon just rumbles…no blood. If I eat alot of carbs like bread or pizza dough, my colon rumbles as well, but there is no blood. I try to avoid eatinf alot of any sort of bready type thing because I don’t enjoy the rumbling…lol

        TMI?? I hope not…lol

        :)

        • Barb February 18, 2013 at 12:27 pm #

          Never TMI you can never get enough.

          Thank you for all your help.

          • bev February 18, 2013 at 12:41 pm #

            Isn’t that the truth when dealing with UC! We really have to ‘lose’ our shame, don’t we??

            :)

  2. shelly in maine February 8, 2013 at 5:47 pm #

    Lani, so sorry, but there is a light at the end of the tunnel.
    Bev, is right…and probiotics are a must especially for us UC’ers.

    Are you still on Prednisone?? Ugh…if you are…are good gastro/Dr. would be working hard to get you off of that somewhat
    Necessary evil of a drug. A lot of your complaints are directly related to it. You can read the survey on prednisone on the site and see all the feedback about it. Same for some of the other meds as well. They are generally temporary fixes.

    Research SCD, gaps diet…helps explain some of the foods that actually bother us. Knowledge is power and yes it is overwhelming, but the outcome will be worth it. Keep a journal of foods, bm’s, etc to help you pinpoint. A nutritionist can be good,but realize the UC is different for everyone and you’ll have to find what works/doesn’t for you.

    This site is amazing and offers lots of info and support. Hang in there.
    Best, Shelly

  3. Dede Cummings February 8, 2013 at 9:25 pm #

    Lani,
    When I saw Shelley and dad of commenting before me I had to smile, because there are really good people on the site! We are also grateful to Adam for being our fearless leader and founder. Adam’s book BTW, is really good. And his video will make you smile, Lani.

    When I first came to this site, I can’t remember, but I think it was six years ago, I watched a video of Adam chopping wood. This video made me laugh because Adam was so frustrated with having ulcerative colitis — he was out in his yard chopping a big pile of wood and cursing! That is how a lot of us feel. I, too, was on prednisone for a long time. When I had my surgery for a bowel resection, I think I was on 85 mg a day, for about three months. The important thing to remember is when you wean your self off prednisone, you have to taper very slowly, even going down to 20-15-10-5 mg and cutting the pills in half and then quarters so that you don’t flare up again.

    I also quit smoking before my first big flare up! Studies show that there is a direct link between nicotine and bowel disease and I wrote about it in my book. It is great that you quit smoking, let Lani, and that you are retired. It’s important for you to take control of your health, and really learn everything you can about this disease. Shelly and Bev are very experienced commentators on this website. Definitely get on a probiotic. I take probiotics every day. Also practice a holistic lifestyle! Hang in there, and don’t give up hope. You are in a good place, and the most important thing is that you reached out and you asked people to help you. Because it sounds like you’re not getting a lot of support at home. Perhaps if you get into a routine of daily exercise and supplements like glutamine and probiotics and omega-3 etc. your family will notice how you are trying really hard and they will also help you and support you more. Good luck!

    • bev February 8, 2013 at 10:58 pm #

      LOL!!! I’ve benn called ALOT of things in my day…but never ‘dad’!!!!

      You are a gem, Dede!

      Cheers,
      Dad…I mean, Bev
      :)

  4. Dede Cummings February 8, 2013 at 9:26 pm #

    Oops! Typing with thumbs!!! I meant Bev, not dad ;))

    • shelly in maine February 9, 2013 at 5:11 am #

      Hi Dede…that was funny! :-) I second Bev…you are a gem!
      Looking forward to your update! (Maybe even a new story on Adam’s site too??)
      Be well,Shelly…snowbound-big Nemo/nor’Easter!

      • bev February 9, 2013 at 8:27 am #

        You stay safe and warm, Shelly!!

        You’re all over the national news everywhere…I’m thinking about you….I can’t help it..it’s the top story!

        How are things now? Has the worst passed and is in mop up mode yet?

        • shelly in maine February 9, 2013 at 9:11 am #

          :-) Thanks…still snowing…supposed to snow till early afternoon! Soooooo much blowing and huge drifts. I have an automatic back up generator just in case…one of the best decisions I ever made…worth every penny!
          Thanks for your thoughts. :-)

          • bev February 9, 2013 at 9:15 am #

            :) Thank goodness Shelly! Great idea getting the jennie!!

            It’ll be over soon…hopefully:)

  5. dena February 9, 2013 at 12:02 am #

    Hello! I am new to this site and I have had UC for about 2 yrs now. Would love some recs on some good probiotics and natura things I can take to hel my flares. I’m currently in one now and need to get back healthy asap :). Your help I greatly appreciated :)
    Thanks!
    Dena

    • bev February 15, 2013 at 7:56 am #

      Hi Dena…

      I take an excellent probiotic called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. I am currently in remission on NO MEDS!

      I do also take fermented L-glutamine powder daily as well.

      Cheers,
      Bev
      :)

  6. shelly in maine February 9, 2013 at 5:39 am #

    Lani…a couple more things since I actually lost my first post…

    Have bathroom…will travel…the perfect antidote/emergency kit to UC! :-) oh yeah, a sense a humor.

    You mentioned rereading Adam’s book…encourage others to read it as well. Look how hard UC is for you to understand so imagine how hard it is for others. Be patient…even my own family members with ibd never understand what I go through. We make it look easy…we “look pretty good for a sick person”! That’s what my dad always said to me and me to him he had Crohn’s. Anyway, it is sort of invisible-not silent! Disease. People don’t realize all the other fun things we endure from fatigue to joint pain to the worry of where the next bathroom is…just in case! (Don’t we know where every clean, accessible bathroom is?!) Plus the 10-20+ trips to the bathroom-anemia, etc, etc. The list goes on. The point is that UC makes you stronger because you HAVE to!

    In addition to Adam’s book, Dede’s book (Living with Crohn’s & Colitis….Dede Cummings) is also at the top of the list.
    Be patient with yourself and others and Please, Please talk to your Doc about tapering off the prednisone.
    Best, Shelly

  7. Graham from England
    graham lee February 9, 2013 at 10:53 am #

    Lani…
    You have had the word from both the great and the good here (Bev/Shelly) and this is good advice. The UC journey is a long one that can lead to very different places. You have already made a huge step by doubting your medical advice to go in search of your own knowledge. As we know with illness, the diagnosis is often just the start followed by a sometimes long period of learning how best to manage it. It honestly frightens me how many people blindly follow medical advice without question and think the answers are all in some medication. Every medical problem I have experienced has only been significantly improved when it reached the point for me to start helping myself.

    Any how that’s my pre-ramble, I just wanted to thank Bev for the EVOO endorsement but it is 3 tablespoons per day and not tea spoons (unless you are a cat perhaps). If not a total solution it must be a good chunk of one and with only other health benefits to be gained from trying.

    The long post is http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/

    If you dont try it now please keep it in your armoury and read to the bottom as this could be the difference between reward and failure.

    I love EVOO, there I said it…

    • bev February 9, 2013 at 3:15 pm #

      So well said, Graham! I think alot of us were raised to think that we could ‘just take a pill’ and all would be alright? If only it were that simple…

      So sorry about the EVOO dosage!! What was I thinking?? No wonder my baking never turns out…lol…I’m using tsps instead of tbsps! Yikes:)

      At this point in my life, I don’t even ever want to see a doctor anymore or ever seek out a prescription from one! I have changed my attitude towards doctors AND meds greatly (like 360 degrees) since having UC…

      • shelly in maine February 9, 2013 at 4:49 pm #

        Maybe that’s the dose for us nongallbladder people?! :-) Can’t blame the metric conversion either…oh, that would be us from the U.S….we can’t seem to convert anything into the easy base 10! :-)

    • shelly in maine February 9, 2013 at 6:10 pm #

      Yeah Graham everything natural is worth a shot. In my lifelong UC journey of 30+ diagnosed years I am still perplexed by what works and what doesn’t. I’m all out of meds anyway so i really have nothing to lose except my colon! :-)
      Anyway…cheers!

  8. Dena February 9, 2013 at 12:03 pm #

    Hi everyone. I a, new to this site and looking for any great suggestions and help on helping my UC. I have had UC for about 2yrs now and I was wondering if you have any great suggestions for a probiotic to use on a daily basis? I am currently in a flare and really need to start getting back on track and I’m having a hard time. ESP w taking prednisone which I’m trying to get off of. I haven’t had a flare in over a year, but recently got sick after doing a 3day juice cleanse and I think it set off my UC. Big mistake in diing this cleanse! So now I’m in a bad flare. Anty great suggestions for probiotics is greatly appreciated and helpful :). Thanks so much for your help.
    Dena

    • bev February 11, 2013 at 9:00 am #

      Dena…take at least 50 billion strain probiotic…something with ‘colon’ or critical care’ in the name.

      I am currently in remission with NO MEDS at all, and I take a probiotic called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE, First thing in the morning, empty stomach, then I don’t eat for at least an hour. If you have to eat first thing in the am, get up at 3am, take the probiotic, and go back to bed! Easy!

      (I also take L- glutamine mid day to heal the mucosa of the colon, FYI).

      Cheers,
      Bev
      :)

      • Dena February 18, 2013 at 11:03 am #

        Bev….I also didn’t know that I needed to take it on an empty tummy! Good to know :). Thanks so much!
        Dena

        • bev February 18, 2013 at 12:12 pm #

          I know…I wasn’t aware of that either…it works so much better on an empty stomach!

  9. Peter February 9, 2013 at 4:34 pm #

    How about putting you salad, fruit, and vege into the juice machine? This would leave the goodies but remove the fibre would it not?
    I juice anything

  10. Dede February 16, 2013 at 2:08 pm #

    Dena, sorry it took me so long to get back to this thread… I am with Bev on this—take a really high strain of probiotic, but make sure it is a good brand. I like the New Chapter brand. The one I take is something you can only get from the naturopath. It is called Ultra Flora “Synergy.” As Bev says, tak first thing in the morning on an empty stomach. imbuy the powdered kind, which is easier to digest. I also take 1/4 teaspoon of the powder. Since I have been in an a drive flare since November, I am taking the probiotic 2-3 x a day. As Bev mentioned, I also take about 1,00 mg of Glutamine 2x a day, also on an empty stomach. Here is a good link about Glutamine: http://www.crohns.net/Miva/education/articles/Glutamine.shtml

    In addition t o the above, I am take hig potency turmeric (curcumin) …. Can’t hurt to try the natural remedies. I have also been on a drug, a very low dose (3mg) of naltrexone, daily. I am feeling great, but then when I had my colonoscopy, back in November, I was also feeling great….but, I have a sneaky suspicion that this naturopathic-medical-integrative medicine is actually working!!! It’s not very SEXY, but hey–worth a try! Also, don’t first sleep, drink water, exercise, yoga, meditation….. Take up singing, or dancing, and be more social. Join the ccfa.org Team Challenge, and run or walk a half marathon. Dena, make sure you follow a really basic diet, and NO sugar, no red meat, k? All the best. Shelly, Graham, and Bev—how are you all? I am cautiously optimistic about what my co-author, Jessica Black, has me doing, and more optimistic to hear that is what Bev has been doing!

    • bev February 16, 2013 at 2:55 pm #

      Hey Dede!

      All is absolutely FAB with me! Still in remission…still thrilled as can be!!

      I just LOVE my probiotic, L-glutamine, vitamin D and astaxanthin! Every day, without fail. I never miss one! That first thing in the morning, on an empty stomach for the probiotic, is key, I think. I don’t eat for an hour after either, because that’s when I exerciuse…first thing in the am. If a person HAS to eat right away in the am, I suggest getting up in the night (3 or 4am) and taking the probiotic, and then going back to bed!

      I do also take a very low dose of LDN (low dose naltrexone)…3.75 to be exact…and I never mention it on here, because I was already in remission before I started it. However, I do love what it does for my for sleep! 10 minutes after taking it, I’m out like a light all night! Then, I wake up feeling great…not like sleeping pills at all! No weird behavior in the night either, just good honest sleep, as it regulates your endorphins…in fact there are NO side effects with LDN at all (a far cry from all the nasty side effects from the UC meds)! I think good sleep means better remission, so yeah, I think it’s helping with the UC in that way.

      Stay well, my friend,
      Cheers,
      Bev
      :)

    • shelly in maine February 16, 2013 at 5:27 pm #

      Hi Dede,
      Sooo glad of your success and progress with all the naturals and LDN! :-) You made my day, week, month….

      I continue my UC battle(Oct.) with little progress, but progress just the same! I have 2 new herb mixes from my chiro(Chinese Med.), plus the vit d, omegas, and of course, probiotics-vsl3. I am doing about 90-95% SCD…I found I was still losing weight, leveled off with symptoms it did help reduce the bleeding, but still 10-15+ trips to b-room with blood and d. Oh and I was getting very tired and weak and Grumpy!! And I don’t really like almond flour(which I was very careful with) so that spoiled any “bread” pretending I tried! I do use it a little and some coconut flour. Anyway, I digress…I’ve been able to push my diet while I’m home, but still cannot eat at work without a problem so small sacrifice for now. Lucily I’m on vacation so i can continue to regain some strength and energy to be able to exercise. Much more joint pain this flare so working thru that. Thank goodness for a treadmill…exercise complete with bathroom! There is always an up side!

      I will also requote your Maya Angelou quote here too…”I can be changed by what happens to me. But I refuse to be reduced by it.”
      Thanks as always for your words of wisdom and your positive attitude…and Adam and Bev…and others…we have a great UC/Crohn’s community.
      Best and continued progress in your health, Shelly

    • Dena February 18, 2013 at 11:01 am #

      Hi Dede and Bev!! Thank you so much for your response! I really appreciate it :):) I ordered a probiotic online from Metagentica- ultra flora balance. Has anyone heard of this brand before? It is a 50-50 blend! So I think what you are talking about. Also, I am currently on Lialda- just started on 4 in the AM. I just started the medication.

      I am also on 40mg of pred! I just had to up it unfortunately :(. It has really blown me up too. It really is an awful drug.

      It makes me want to eat and eat and eat! It is like a catch 22. You try to eat healthy foods but you want bad food w this pred! I am hoping to taper off soon. I was almost down to 20 but then I flared again :(

      Thanks so much everyone for your answers to my question…..Bev and Dede :). I am very much looking forward to this site and all the info it has!! Glad to see I am not alone here. Def helps after being stuck in my house for over a month :(

      Have a great day :)
      Dena

      • shelly in maine February 19, 2013 at 7:57 am #

        Dena,
        I also took metagenics as recommended by my primary care he is a D.O., bit I had to keep upping my amounts so I now have Rx strength vsl#3 DS!

        So much info…so little time! :-)
        Best, Shelly

    • Dena February 18, 2013 at 11:05 am #

      Dede, thanks for the info on glutamine! Where do I get this at? Trader joes or whole foods? I will start this as well :)
      Dena

  11. Dede Cummings February 18, 2013 at 5:33 pm #

    Dena, hi. I hope you are feeling good, better today . . . I want to give you a lot of feedback, as follows:

    In our book, Jessica (my co-author) has a whole section on probiotics and glutamine..let me see if I can cut and paste….
    One aspect of gastrointestinal health that is important to understand when discussing treatment options for Crohn’s, UC, and other forms of IBD is microbial balance. Microbial balance is a term used to describe the ever-changing state of the beneficial microorganisms that live in our intestines. This mix of microorganisms such as probiotic bacteria and yeast make a significant contribution (and one which scientists are only just beginning to understand) to the health of the intestine and that of its host: the human body. One reason why the system of microorganisms is so hard to understand is that they are so huge in number; they outnumber our mammalian cells by at least ten fold.8 In other words, we are made up of significantly more bacteria than we are made up of our own cells.

    Appropriate and directed probiotic supplementation has shown to be beneficial in many studies and research also supports the idea that therapeutically manipulating microbial composition and function by antibiotics, probiotics, and/or prebiotics in an organized fashion could restore mucosal homeostasis in inflammatory bowel disease patients.

    Glutamine: Most health food stores carry this supplement, Dena . . . I recommend New Chapter b/c it is easy to find, and I bet Trader Joe’s carries it. Or Whole Foods. Same with Vitamin D.

    One helpful gastrointestinal amino acid is L-glutamine as it has a significant effect on colitis and other gastrointestinal symptoms. L-glutamine is known for its supply of nitrogen and help in restoring muscle mass in individuals who work out. Aside from this rebuilding of muscle, L-glutamine helps to repair the important and intricate functioning of the barrier lining of the gastrointestinal tract. It helps to keep the gap junctions tight, reducing the amount of larger particles entering the blood stream due to regular or consistent excessive mucosa inflammation. Gap junctions refer to the intimate encounter between two cells lining the gastrointestinal tract. This secure junction is what forms the virtually impenetrable passageway to the blood stream. L-glutamine also helps to increase the number of friendly or helpful probiotic bacteria within the GI lining.17 Because of its stimulation of growth hormone, L-glutamine may also be helpful in aging effects. L-glutamine can be used up to 4 grams daily.

    DENA: I take Glutamine on an empty stomach, too. 1,000 mg 2 x a day. First thing in the a.m. take probiotics, L-glutamine, and go do Yoga and Meditation for half an hour. :) Then walk 3 miles; then (!) come back and then make some weak black tea with honey, and have some pure wheat-free oatmeal, with cut up bananas, raisins, cranberries, chopped almonds …. with some rice milk or low-fat milk; for mid-morning, have a boiled egg; for lunch soup, or rice cake with turkey on it, some hard cheese like aged cheddar, for afternoon snake have humus and rice crackers; for dinner baked fish or chicken with herbs and some steamed veggies…. DIET is important—keep it lean.

    Decrease your caloric intake every day you are on the drug … food journal will help and use portion control.
    Avoid processed food—stick with the while grain for complex carbs like brown rice and steamed veggies
    Eat low-fat proteins: Eggs, fish, chicken…. NO red meat!
    eat avocados, seeds, nuts (as tolerated…everyone is different, and some of us can’t have seeds/nuts) … the idea is good fiber, healthy fats, no junk food (I love potato chips :(
    Also, since I am not a big fruit=eater, I take 2-3 big tablespoons of GROUND FLAXSEED EVERY NIGHT DILUTED IN WATER. THIS IS THE BEST THING I DO TO KEEP MY BMs REGULAR!!! If you are suffering from blockage or obstructions, don’t do this.

    Other basic supplements may be needed in the treatment of IBD due to poor nutrient absorption. Here is a list of a few supplements and dosages. Oftentimes, it is more important to support with herbal formulas to decrease inflammation and improve gastrointestinal function prior to supplementing. In addition, if the IBD is controlled, then most likely a very good multivitamin can be enough complexed with consistent herbal and supplemental support.

    • Folic acid: 800 mcg daily
    • B complex and/or B 12:
    • Beta carotene: 20,000 IU daily
    • Vitamin D: 2000–4000 IU daily — DENA, I use good-quality liquid drops
    • Buffered Vitamin C: 2 grams daily
    • Vitamin E: 800 IU daily

    DENA: You should get your blood tested . . . many of us on this site have had very low B-12, potassium, and iron. I never had any blood work done during the time when they were trying to figure out what was wrong with me :( They kept saying it was ovarian cysts…. When I went to a naturopath, they finally tested my blood AND my stool sample (oh, joy, that was not fun :!) and sure enough—I had problem with little or no B-12, and I had an overgrowth of a certain E-coli strain of bacteria in my gut. So, there you go!

    Keep us posted. Keep a daily journal: What you eat, how you feel, what you are taking. Gradually include exercise, yoga, meditation, therapy, massage, acupuncture (yes!!), into your integrative approach to dealing with your uc. Don’t try to do it all at once, but add gradually. The food journal helps—some people just blog all of their uc/Crohn’s stuff; as you taper off the Prednisone, make sure you are doing gradually. when you are ready, that it! Maybe boost your health first with the supplements and alternative therapies; then start tapering.

    Imp thing is DON’T DESPAIR! Keep a positive attitude.

    Prednisone basically changed my personality :( but the best quote that Shelly in Maine loves that I put on my books’ Facebook page is this:

    ”I can be changed by what happens to me. But I refuse to be reduced by it.” m—Maya Angelou, former poet laureate of the United States WE LOVE THIS QUOTE!!!

    Sorry this is SO long :))) THINK POSITIVE!

    • bev February 18, 2013 at 6:01 pm #

      Dede…This is one of the best posts I’ve read on this site! It says everything that we should ALL be doing, in a nutshell!

      Great advice on the bloodwork, too. I had no idea I was low in vitamin D and that I had inflammation until I was tested for both. Sure opens your eyes!

      Perfect post!! Thank you SO much.

      :)

      • shelly in maine February 18, 2013 at 6:48 pm #

        Yes! She is a fantastic resource. Her book is one of the best…Living with Crohn’s & Colitis. :-)
        Keep spreading your knowledge. Congrats on a year! :-)

  12. Dede Cummings February 18, 2013 at 5:40 pm #

    Hahaha, I typed “snake” instead of “snack” !!! Sorry! Also, I forgot to say, I was on CIPRO for a ten-day cycle to getting rid of the nasty gut bacteria they found; then, I went on the probiotic, food-health-integrative medicine HEALTHY PATH!! Combine the best of Eastern-Western medicine, and you will be fine, but it is the naturopaths (make sure you find a good one with a 4-year degree from an accredited college) who really know their stuff. Regular GIs are good for support (they are doing their best and many are overworked!), and many of us say our surgeons saved our lives (I know mine did!) … Good luck….

  13. Dede February 19, 2013 at 7:35 am #

    ¡Hola! My wonderful friends on this site! And Adam, of course…. Bev, Shelly—want to be my book marketers?! ;) Seriously, thank you all for your kind words. I worked hard on the book, so people would have a resource that wasn’t just DRUGS….

    Speaking of which, Dena, and everyone…I woke up this morning, and immediately realized I left out one of the most important things to do, diet-wise….NO SUGAR. Give it up! Perhaps a single chocolate on a very special occasion… But sugar is bad all around for us with IBD. You can use honey instead. Honey is a monosaccharide. In Breaking the Viscious Cycle, she talks about the biochemistry behind the reason for this…. As polysaccharides are hard to break down.

    The other thing I forgot to mention, is I am on high-potency TURMERIC (an herb, also called cur-cumin), to help lower my severe inflammation they found in November. 2 – 500mg caps, 2x daily…. Take with or without food. This is working with the combo of L-Glutamine, LDN, Flaxseed/fiber, Vitamin C, D, and Probiotics!!! Woohoooooo!

    Oh, and Dena, Metagenics is a great company! I did some research! I assume you are taking Omega 3 already and a good multi-vitamin. Goooooooddddddddd luck! You can do this.

  14. Dede February 19, 2013 at 7:38 am #

    And, Lani….How are YOU doing?! You started this wonderful dialog, after all, and it kind of took off.

Leave a Reply