Ulcerative Colitis Tips


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Natural, Meds, or Both?

Introduction:

My name is Miesha and I am a 35 year old educator and counselor who lives in the S.F. Bay area. Diagnosed with UC in 2011. Currently in remission by using SCD diet and lots of supplements! No meds right now ! :)

Some more about me:

I love to travel and volunteer in my community! My passion is helping students prepare and get into college. Yoga and hiking give me sanity!

Symptoms:

Occasional bloating currently.

In my first flare up from 2011 – 2013 had bloody bm 10 x a day, low energy, low libido, bloating with all meals which led to hospital stay in feb 2013 for blood transfusion.

Natural, Meds, or Both?

Hi everyone

In need of some major uc community assstance!

My UC journey began in 2011 when saw blood after wiping and was topd by my pcp that I probably had hemoroids and was promptly prescribed stool softener and told the blood would probably go away on its own. Well because I was in relatively good shape and in my early 30’s I followed this advice. Though I did have bloating nd had put on about 10 pounds, but chalked this up to not working out as much due to my busy schedule,

Well needless to say about 6 months later the blood turned into bloody bowel movements and diarrhea from 4 to 7 times a day along with stomach cramps every morning before work. I was quickly referred to my GI specialist who scheduled my first colonoscopy in Nov 2011 I was diagnosed with UC proctitis on my left side and prescribed mesalmine enemas . Well that changed my life! As a newlywed,lets just say there wasnt a lot of bedroom action happening with my new hubby! On top of that, i was so exhausted and had no desire for my poor husband (side effects of mesamine) , plus I always had the urge to expel the medicine and the blood and diarrhea increased (another side effect)

After 1 solid year of powering through, my GI switched me to oral mesalmine Lialda and VSL probiotis. Well more convenient but would need to use the bathroom within 10 minutes of taking. 3 months later, my body was tired, i wasnt eating because all food repused me. I caught the flu, the really bad one a lot of people got last winter which proved too much for my immune system. In Feb 2013 , I ended up in the hospital with anemia and required a 4 day stay and blood transfusion. After i got out, I was prescribed prednisone, and promptly found a natropath. Though I credit my 6 week predisone with helping my colon recover, the swelling, moon face, and subsequent hair loss from tapering off left me wondering about holistic methods.

Since March 2013, I’m currently in remission, thank god, all because of the SCD diet, my great natropath, THIS WEBSITE, and , supplements such as slippery elm, pro biotic VSL, L glutamine, and fish oil. Not to mention acupuncture and yoga helping me maintain my hectic life as a student and full time employee. Thanks to these methods, i have been able to obtain and sustain remission for the past 9 months! Yay!

Yesterday my enthusiasm was given a kick in the shins” becauae after my follow up colonoscopy, I have less inflammation, but pseudopolyps, which seem to be scar tissue developed from the years of inflammation? They are not cancerous after a biopsy, but of course GI now wants me to back on meds! : ( I am so disappointed because I feel great with no symptoms and most importantly, I have my life back!

I need advice from the UC brothers and sisters! I can understand the need to treat this disease, but will meds (azathioprine) and steroids treat the polyps found. Do I want to risk the side effects which basically mimic UC symptoms, plus possible organ damage? I would love to continue my natural treatment and live a normal life!

Any suggestions welcomed!

My Current Supplements/Treatments:

Suppleents saved me and gave me the gift of remission!
L glutamine
slippery elm
Fish oil
Vitex
Gentle iron
vitamin d
ginger/tumeric tea
Maca root
VSL probiaics
liquid multivitamin
Weekly juicing of veg and fruit
no gluten and limited dairy, only greek yogurt or 1 week cheese

written by Miesha

submitted in the colitis venting area




21 Responses to Natural, Meds, or Both?

  1. Angela December 3, 2013 at 1:56 pm #

    Hi Miesha

    If diet is working for you I’d say keep just with that. You had your first colonoscopy before going on mesalamine and suffered through that for a LONG time! Those polyps could have bee caused by the damage mesalamine was doing to your intestine and your doc couldn’t tell until this colonoscopy. My recommendation would be stick to your diet, schedule another colonoscopy in a year and see if there’s any change. No change then you’re fine, if it’s worse then you should seriously consider the meds to help. I too got sick off of mesalamine. Three weeks in I was passing blood (odd considering that despite originally being diagnosed with severe pan colitis 12 years ago I had never passed blood). My doc and I agreed to stop it and voila! I got way better.

    That being said, I do believe in some instances meds can do wonders (remicade has been my life saver for 10 years) but if what you’re doing is working why mess with it?

    Good luck!

    • Miesha December 3, 2013 at 3:25 pm #

      Angela,

      Thank you for your response. I agree with waiting this out 1 more year and seeing what the colonoscopy result is. I’m not opposed to meds; but rather wait until i HAVE to take them before going down that road; especially after my mesalamine experience.

      So glad remicade has worked for you!

  2. bev December 3, 2013 at 6:06 pm #

    I always worry about this, Meisha! I just know, in my heart, that even though I feel like I am in remission, that if I had a colonoscopy, I would be told that there is still inflammation and that I should use some sort of medication.

    As everyone knows, I have been off meds for over two years now, and will never go on them again. My body does not like medications of any sort. If there is a side effect, I will get it. I get side effects that aren’t even mentioned in the med literature! Of course, then the doctors just think I’m nuts…

    I think your doctor (or any GI) will definitely recommend the meds because that is their job. That is how they are trained to treat patients. It is what it is. HOWEVER, and that’s a big HOWEVER, You are in control. You do not have to take them. If you are going merrily along, why ruin things? The meds don’t work anyway. That is proven by so many of us!

    Just my two cents my friend…

  3. Fred S
    Fred S December 4, 2013 at 11:59 am #

    I second Bev. My doctor wanted me on humira and I said no way. No drugs whatsoever. The benefits for many of us are often negligible and side affects can be downright nasty. I have been able to control my UC with diet and a few well chosen supplements. Some folks cab;t get by without meds. at least at first. It hasn’t been easy finding what works but I have learned a lot along the way about diet, the medical industry and the food industry. Keep reading and learn as much as you can.

    The best advice and I can’t stress enough…Gluten is the enemy..avoid it at all costs!

    Whatever you decide, good luck and I hope you feel better soon!

    Take care,
    Fred

  4. bev December 4, 2013 at 12:42 pm #

    I can’t believe that more people haven’t commented on this posting. This is SO important!

    We are told that as UCers, we have a higher incidence rate of cancer, due to inflammation. I always wonder just how much evidence there is to support this theory. The meds that are used to supposedly reduce inflammation are dangerous in and of themselves, not to mention the side effects that also come with. Why then, if the meds are making us even more ill, should we take them to ‘knock down’ the inflammation? Perhaps they, too, can raise a cancer risk?

    It’s all very difficult. I, for one, like Fred, will never put another medication in my poor old body. All of the 13 or so years that I took asacol, steroid enemas, and whatever else the doctor prescribed…suppositories, I think…did nothing but make things worse for me. Terrible side effects and those are the more benign drugs! I cannot imagine taking the immune suppressing biologics like humira, Imuran, remicade, etc.

    How can taking meds for UC be the right way to go? Ever since I’ve been on the probiotic that works for me and the L-glutamine, I have felt more ‘normal’; than I have in years. I can actually live a life again instead of being so sick and tired that it was an effort just to get through the day. I take the vitamin D and the astaxanthin for inflammation…the natural way to do it…a way with no adverse side effects.

    I’d rather live feeling good right now and if I ever find out that I do have colon cancer, I will deal with it then. I am still not convinced that my risk is any higher than anyone else’s due to UC.

  5. Allison-3
    Allison December 5, 2013 at 12:48 am #

    Bev- You are right- this is so important!
    Colon cancer is the #3 cancer, the risk for the general population over a lifetime is 1 in 20. That is 5% chance and it is important for EVERYONE to get a colonoscopy at some point in their life.
    With that said, the CDC statistics state that 95 in 100,000 people with UC may get colorectal cancer. So, that is basically 1 in 1,000. I think it is important to note that the research shows that if you have UC and get cancer then your odds of dying are higher (probably from all the damn meds anyway!).
    By GI standards everyone should be on meds preventatively, RIGHT? It is a very good scare tactic. I see this same tactic used for the genital warts vaccine and an increased rick of uterine cancer (albeit is an increase in only ONE type of uterine cancer caused by only one particular strain). Don’t even get me started on my soapbox!
    Continued health to you Bev- I love how strident you are. A true crusader for the UC army. Hah!
    Allison

    • bev December 5, 2013 at 7:21 am #

      Oooh…I love those odds!!

      Right back at you, Allison! Get on that soap box too! I find you the very same.

      :)

  6. Allison-3
    Allison December 5, 2013 at 12:54 am #

    Meisha-
    Follow your gut instincts! If what you are doing is working, then just stay on that path. From my own experience, it is taking my guts a lot LONGER to heal then I would like- so I think PATIENCE & Faith in your healthy decisions are the best remedy. You know this diet is not hurting you- can you say that about meds???

    I know doctors mean well, but GEEZ it totally sucks when they freak us out like that! I was supposed to get a scope this month but have decided to wait because I feel the best I have in 4 years and I don’t want anyone bringing me down!
    All the best,
    Allison

    • bev December 5, 2013 at 7:19 am #

      I hear that Allison!

      Same here. I am overdue for a colonoscopy, and I know all about the cancer risk/screening associated with UC, but for the love of pete, I am feeling so good that I do not want to upset the apple cart, you know?

      The prep always seems to irritate the UC, and then there is the ‘bad’ news of active disease…blah blah blah. Not quite the ‘party’ I want…

      • Miesha December 7, 2013 at 6:55 pm #

        Thank you Fred, Bev, and Allison!

        your support.and experience is much appreciated! ive felt the best I have in 2 yrs and med free. Yes it is hard work monitoring diet but thank God I dont have to worry about all of the med side effects. Plus my hubby and I will be trying for a bambino soon and with 1 year of med free remission is where Id feel the most confident!

        Following up with my gi in jan and onc .again will have to “negotiate” for my health and body and to self advocate not starting meds. I will take all of your experience and positive healing energy into this appointment! Allison thank you for these stats ! will keep everyone posted!

        peace and continued healing through the holiday sseason :-)

        • bev December 8, 2013 at 8:41 am #

          The very best to you. Miesha!

          Congrats on thinking about a bambino!!

          :)

  7. shelly in maine December 14, 2013 at 7:31 pm #

    Hey all…just read this post…my 2 ยข….if it ain’t broke don’t fix it, huh Bev?! :-) And i agree with all the above! I feel we owe it to our bodies to try every natural thing we can first. We need to listen to our bodies the best we can. It is a lot of trial and error and patience for most as UC is not a new size fits all adventure!
    One other thing, Miesha, is to make sure you are healthy as possible before any pregnancy and perhaps read some stories from others who were pregnant/had babies and had flares and to have a back up plan just in case.
    I really just don’t know, even after a lifetime of this…it is still a crap shoot :-) in finding what works and then it seems to change. But on a promising note of sorts..despite still flaring for 6 months, bleeding, 10-15 bm’s, etc, etc…my blood work actually came back okay! :-)
    So there it is…my mini soap box!
    Best of health all, Shelly

    • shelly in maine December 14, 2013 at 7:33 pm #

      That was supposed be that UC is not a one size fits all rollercoaster ride!! ;)

      • Miesha December 16, 2013 at 6:03 pm #

        Thank you Shelly!

        I appreciate your comment and your 2 centavos! :)

        Yes, definitely trying to wait out the pregnancy for at least another 9mos to a year to make sure the remission is strong and I don’t have too many bumps before trying. I never even thought of a back up plan in case a flare occurs; so will be creating one now, so thank you!

        Also, want to get another colonoscopy done, post meds, to see what I’m working with.

        Congrats on the blood work! I say embrace that victory! Are you currently taking meds or supplements? If so, which ones?

        • shelly in maine December 17, 2013 at 4:39 pm #

          Hi Miesha,
          Thanks and you’re welcome! There is a wealth of info on this site from us that will be very helpful.
          My story is a long one, I am a UC lifer, symptoms forever…diagnosed by 15, I’m 45, been through all the meds and allergic and intolerant to pretty much all. I have been Med free for
          2 1/2 years and counting. I use probiotics…Rx VSL#3, SCD-not 100%, vitamin d, fish oil, some Chinese herbs and mess around with
          Lglut, aloe, and some others. My body seems to constantly change or I get sick and it sends me. I have had many flares, but hopefully will continue my survival mode. It sounds like you have a pretty good list going.
          Another thing you may want to do is keep a journal of bm’s, meds, natural meds, foods-ESP. Intolerances or things that just bother you. That will probably be even more important in your future plans. Remember that you need to keep that list with you so you can tell your Dr.s. Natural meds have side effects, too and interactions and sometimes we forget that.
          Hope this helps…best, Shelly. :-)

          • Adam
            Adam December 21, 2013 at 6:06 am #

            Miesha,

            Shelly’s got a great idea on keeping a journal. IT’s super easy to think this or that is causing symptoms to get worse, but its also super hard sometimes to pinpoint it. So journalizing is super helpful to many. Best of luck, -Adam

  8. bev December 14, 2013 at 7:58 pm #

    You said it Shelly!

  9. Miesha February 6, 2014 at 10:00 am #

    Happy new year everyone and thank you shelly for the journal suggestion. It has really helped me monitor all food and supplements! So far, so good with my symptoms. Just started a new job, which may be more stressful, so will be more aware of my stress reduction and exercise in next few months!

    btw, my natropath suggested take curacumin, a tumeric supplement to help decrease inflammation, has anyone had any luck with this?

    Be well!

    Miesha

    hope everyone is well!

  10. shelly in maine February 6, 2014 at 5:43 pm #

    :-) Miesha!
    I have played around with those a little and the other stuff I mentioned and the astaxanthin….not really sure? Dede That wrote the book uses those and a few other people. They are definitely more natural. Try and add 1 at a time in case you have any good or bad results you’ll now which thing it is.
    Also, lots of people do yoga and definitely lots of stress reduction…sounds like you’re working on a great formula. Slow and steady and be patient and careful!

    Congrats on progress and continued better health, Shelly

  11. Miesha February 7, 2014 at 11:27 am #

    Shelly,

    Thank you! Hmm. I’ve also heard of astaxanthin as well. Will definitely be gentle when adding new supplements. Just started the turmeric yesterday, so making sure I’m taking with food. will track in my journal over next 2 weeks! Stay tuned! :)

  12. shelly in maine February 7, 2014 at 5:14 pm #

    Miesha,
    Good luck. Bev takes the astaxanthin regularly with good luck. I tried it and not so much, I think…but I will try it again sometime. You know it is trial and error.
    Positive thoughts, Shelly:-)

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