Ulcerative Colitis Tips


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New to UC and Want Remission Soon!

Meet Mariel:

Hello everyone! My name is Mariel and I am 22 years old. I live in San Diego and graduated a year ago with a Finance degree. I am a very loving person and love to be surrounded by family and friends.

Some more about me:

I grew up in Mexico City and moved here when I was 12 years old. I am very lucky to be trilingual! (English, Spanish, and Hebrew)

Symptoms I’m Dealing with:

diarrhea, blood, mucus, nausea, fatigue, cramping

New to UC and Want Remission Soon!

After over a month of complaining to my general doc about diarrhea, blood and mucus, I had my colonoscopy in February 2013 and doc couldn’t determine if it was either Cronh’s or UC. Anyway he put me on Asacol HD and Canasa. After a couple of weeks I was feeling much better, I wasn’t going as often to the bathroom, and the blood had decrease. I had improved a lot, but not reached remission, that the doc considered decreasing the dose on the Asacol. A week before I reduced the dosage, all my symptoms came back full on. Diarrhea, mucus, blood, urgency, nausea, it is HELL!

My GI wanted to put me on steroids and I refused so i decided to try alternative medice.

Anyway I am now seeing a Chinese doc who put me on a strict diet and gave me some teas. It has been two weeks ever since i started taking teas, and stop taking my meds (i felt like they just weren’t doing a difference) and i still feel the same. I cant sleep at night since I wake up with A LOT of urgency to go to the bathroom at least 4 times a night. I feel very weak, emotional, and hopeless.

Even though I have not seen a big improvement with the Chinese doc I trust in him very much for him to not only cure me, but end this disease!!! I just need to be patient! I talked to 2 girls who had same symptoms and they are all cured after this doc helped them! One of them even celebrated her bday with champagne!

does any body have some insight on alternative medicine? or even on reducing amount of mucus? It’s ridiculous the amount of mucus i release! it scares me! oh and I also have tried Acupuncture and feel like it has made a huge difference with the cramping.

Medications:

Asacol HD worked for the first 4 months, afterwords it made no difference whatsoever
Canasa suppositories worked wonders although with the urgency it was hard to keep them in :S

written by Mariel




62 Responses to New to UC and Want Remission Soon!

  1. Sharon June 3, 2013 at 5:44 am #

    I can’t really help with the Chinese herbal method but my GI told me that he has 2 or 3 patients who have had great success with it after traditional drugs failed them. Unfortunately, with the name he gave I was unable to track down the source. I will say that it won’t take long on this site to find a lot of other options other than meds. Asacol worked for me for many many years but I can no longer take it. I highly recommend a good prescription level probiotic. I use VSL#3 DS but there are others.

    • Mariel June 3, 2013 at 5:33 pm #

      Sharon thank you so much on your tip! I actually asked my chinese doc about taking probiotics and he surprisingly did not recommend them due to my situation. I also asked about taking a multi vitamin and he said it is not necessary yet (which i do not understand what he means by “not necessary yet” when im going over 20 times to the bathroom and have lost over 30 lbs!!) I will continue to give this method a try and hope for the best! Any results I will let you guys know!
      Best wishes!!!

  2. Caroline
    Caroline June 3, 2013 at 5:48 am #

    Hi Mariel,

    Welcome to this exclusive club! :) Sorry to hear about your diagnosis and all of your problems – I know that is tough. I have been seeing an acupuncture/TCM specialist for years for general health stuff – I have considered her my primary care doc. I first started having traditional UC symptoms back in late summer 2012, and talked to her about it. The acupuncture definitely helped with the cramping, as did the herbs, but I think something huge had been set into motion by diet/food choices I was making as well as STRESS. I have always treated everything with alternative medicine and herbs, and was very reluctant to see a western doc. I didn’t even have one at the time…haha. My nights were terrible too – who can sleep when they are living in the bathroom? So sorry you are dealing with this too.

    By Christmas I was so ill I knew I needed to see someone else as well, and my acupuncturist agreed. She would try to needle my abdomen and the needles were actually bending and breaking – that was a little alarming to both of us. In her way of explaining it, acupuncture is fantastic for prevention of disease and managing it when it happens, but for crisis situations like where I ended up I needed more aggressive treatment. Traditional Chinese medicine is very powerful but typically doesn’t work overnight! I was finally diagnosed with pancolitis in January and am glad I finally went when I did. I did not want to take prednisone but honestly it was the best thing for me at the time and I wouldn’t change it for the world. It jump started my remission and calmed the situation down to where my diet changes, herbs, supplements, and acupuncture could help. Going forward my acupuncturist is still a vital part of my health but I have a fantastic western doctor too that respects my desire to treat this more natually – I am taking a small dose of Apriso and will wean off of that in a year if all continues to go well. I am also taking VSL#3 DS.

    As for the mucus, that has been the one symptom that has continued, although it has gotten much better. I don’t worry too much about it now – ironically, according to my acupuncturist, excess mucus is caused by too much WORRY and also dairy. The more I lighten up and try to enjoy my life the less it bothers me.

    Good luck and hang in there!

    • Mariel June 3, 2013 at 7:44 pm #

      Caroline!!! thank you so much on your response and for sharing your story with me!

      Great job on being in remission! and OMG that’s crazzyyy about the needles bending and breaking on you, i have never heard of that happening!!!

      I try to stay calm to avoid symptoms getting worse, but to be honest i cannot do it! every time i go to the bathroom and see blood my stomach hurts, i get racing thoughts, and my heart panics! I’ve missed so much work and hanging out with my friends just because I am too scared or leaving the house, just the thought of it makes me race to the bathroom even more! I know i need to calm down but its hard when i am trying to get better and not seeing results!

      Hopefully it will all calm down soon so i can go back to enjoying life with my friends!
      All the best!

  3. bev June 3, 2013 at 4:03 pm #

    Hi Mariel,

    These two wonderful ladies, Sharon and Caroline up above, are spot on. Smart gals!

    The meds used to treat UC are usually harsh, expensive, and all eventually stop working, but doctors still prescribe them, one after another, until they each fail. The UC drug merry-go-round, as I affectionately refer to it. I can’t believe it’s still the protocol, but it is. Every new patient still gets the same spiel…I had that exact same medication spiel from my GI 15 years ago…

    A probiotic (a good one) is essential. You must take probiotics on an empty stomach with water, and then don’t eat for at least half an hour. Somehow, we UCers’ flora has been depleted and we need to build it back up.

    Then, we need to HEAL the colon…not band-aid it with medications. Fermented L-glutamine powder heals the mucosa of the colon. Other natural things can as well, like extra virgin olive oil, and various others. I have been taking L-glutamine for over a year now, along with a GOOD probiotic (50 billion strong) and I am in complete remission! No more nausea (I think that was from asacol, even though my doc said it was from the UC…funny how it disappeared when I stopped taking asacol…), no more urgency, frequency, cramping, bleeding…I am normal again…and I eat whatever I want to eat!

    The L-glutamine also works best on an empty stomach.

    Cheers, and welcome to this site! This site saved me!!

    Bev
    :)

    • Mariel June 10, 2013 at 6:21 pm #

      Hi Bev!!!

      I will def as my chinese doctor about taking probiotics again, because at first he said I did not need them. But after reading so much it seems to be an essential pill for all of us. Thats great that you are in complete remission and can eat whatever you want!! I envy you so much right now, but hopefully will be able to do that soon! I actually tried the extra virgin olive oil but felt that since i was already having very loose stools it was making them worse! Was taking kefir (like other people have cured themselves with) but now my chinese doctor doesnt let me have any dairy, and eventhough its 99% dairy free, he said no. Thank you so much for your recommendations and hopefully I can put an end to this 6 month flare up.

      Take care!!!

      Mariel

      • bev June 10, 2013 at 9:55 pm #

        :)

        You are a sweetie pie Mariel! We all deserve to get better…and you will, too!! It can take time but it WILL happen. Believe it.

        Cheers,
        Bev

  4. shelly in maine June 3, 2013 at 4:32 pm #

    Hi Mariel,
    I have been using herbal meds for quite sometime. Not teas, but herbs. I can all tell you that the herbs have not remained the same. I think it is key to communicate 100% your symptoms and diet and to know your own body inside out and upside down. In the process of this disease you will do that. It is a must for you to keep a journal of everything you from foods, to herbs to bm’s. Welcome to your new jobs as nutritionist, naturalist, scientist, nurse, doctor, etc, etc! :-) The probiotics are a must. Any improvement is improvement none the less and not getting any worse, as well. The other important thing to know is thatUC is not a one size fits all disease. My doctors have claimed to learn a lot from me and work with me and trust me as much as i have to trust them.
    Take a deep breath, you’ve come to the right place, research, research, and research some more! Go slowly and carefully when adding new things and ironically, trust your gut-instinct! :-) :-)
    Feel free to ask questions any time!
    Best, Shelly

    • Mariel June 10, 2013 at 6:35 pm #

      Hi Shelly!!!

      It seams like I really need to get on probiotics ASAP since everyone is recommending them! I have tried the herbs and i could not even drink them, they tasted discosting to me!!! Are you still taking herbs? Do you take any meds? and are you in remission?

      Its been a hard journey for me, as i said I started with Asacol HD and canasa but when they stopped working after 5 months GI wanted me to go steroids and thats when i went to alternative medicine. The tea he gave me are ind of a hassle because I need to make everyday (it’s a 35 min process) and drink 3 times a day. At first I actually liked the taste a lot, but after 2 weeks I could NOT even smell them without gaging. I would just get nausea thinking about them. He explained to me that my colon is too swollen and that is what is causing the nausea. He gave me some herbal pills instead and told me that one in like a steroid (without the side effects to stop the bleeding) and another like a an antibiotic (to kill bacteria). Its been almost a week with those pills and on the first day I had a semi-formed bm and was very excited. urgency has decreased, but blood started again today. I am also in a very strict diet where i can only ear cooked veggies, fish, rice, pasta, and beans, and follow it religiostly. Any other recommendations on what to do?

      i feel like im giving up on alternative medicine and might even try prednisone, my body is so tiered, ive lost so much blood and weight, and dont know how much longer i can wait.

      best wishes!
      Mariel

      • shelly in maine June 11, 2013 at 3:40 pm #

        Hi Mariel,
        First…yes for 100%+ sure about probiotics. I also take VSl3 DS which is a prescription strength. Your Dr. needs a code for that. If not you can order the capsule or try the Ultimate Flora or any good quality refrigerated probiotic. I actually alternate mine around.
        As far as the herbs, I found cranberry juice, about a small juice size cup, was the secret to tolerating the ones not in capsules.
        I do not take meds any more, and have been Med free for going on 2 yrs and dealing with UC all my life, I’m 45 and diagnosed around 15 and on meds 2 years prior. I am out of meds and allergic or intolerant so that is why. I have worked very hard with all my Dr.s and like I said, have changed herbs based on my flare. I am basically out of it, but not quite ready to say I am, but it has taken about 8 months.

        Look into SCD and other similar diets. I did the scd for many months, but found i had to add a few things back in. You may need to taper your diet back further. Also, vit D, omega 3’s and other inflammatories.

        Be sure to have blood work done and have you been checked for c diff? Sometimes we can have sensitivities to foods we don’t even know( not necessarily be allergic).
        I hope this helps…hang in there and do what you need to do to get out of your flare.
        Best, Shelly

        • shelly in maine June 12, 2013 at 3:15 am #

          sorry…just reread to check my spellcheck that doesn’t work…anyway…ANTI-inflammatories!! :-)

          • Mariel June 16, 2013 at 1:41 pm #

            Hi Shelly!

            So 4 days ago I went into the hospital for excessive blood loss. I ended up being in there 3 whole days, which in a way was kind of the right thing to do. I had lost a lot of blood and liquids so the IV defenetly helped lift my spirits up. Being there I had a bunch of tests done, catscans, blood work, stool test, etc… and actually got tested for C diff and it was negative. It was basically my colitis acting up. I feel that I am in the right track now that i had a more detailed study of what i have and the treatment I am taking. I also learned a lot about UC itself and that low fiber foods are better for all of us. I am on 30 mg of prednisone and in two weeks going on 20 mg and then after another 2 in 10 mg. Other than that I am also taking Asacol HD one pill 3 times a day, probiotics, folic acid, multivitamins, and potassium. To be honest, when I was in the hospital i felt that the steroids they put in me were stronger since i would only go to the bathroom at most 4 times a day. Now that I am taking them in a pill form, im still going over 10 times. do you know if it takes time for them to work into my system? anyways my new plan in to get this under control, stop taking steroids in a month, go into remission, and eventually be med free! Cant wait for that day to come!!!

            Hope all is well!
            Mariel

      • Sharon June 25, 2013 at 6:28 am #

        I cannot tolerate beans in a flare. Make sure you are peeling the veggies before cooking since the skins often don’t break down enough to be easily digested.

        • Ana June 25, 2013 at 11:43 am #

          Right. I think it’s the case with our daughter too. And yes, we peel some veggies. Mostly it’s soups with peeled asparagus, zucchini, lettuce, peeled carrots, butternut squash, spinach, baked yams, occasional potato, some onion and garlic. I used to put peas but didn’t put them the last time (didn’t seem to make any difference).

          I was thinking of giving her some adzuki beans this week (soaked for over 48 hours, and I peel the skin off every one been, so the literally just dissolve in your mouth). What do you think?

          • Sharon June 25, 2013 at 1:23 pm #

            I think I want you to come to my house and cook for me!!!! I’ve never even heard of adzuki beans but a

          • Sharon June 25, 2013 at 1:25 pm #

            (oops)
            if you are willing to peel them, knock yourself out. It sounds to me like she’s getting a great variety as is but as a mom, I understand that you want to do as much as possible.

  5. Polly
    Polly June 5, 2013 at 3:18 pm #

    Hi Mariel,

    Welcome! And so sorry to hear about your current troubles!
    The others above have already given you some great advice. One thing that we’ve all learned (I think) is that everyone’s body reacts to UC treatments differently. Some people might be OK by just changing their diet or just taking probiotics, but some people need both treatments and more.
    For me, treating my UC was a total lifestyle change as far as diet. (I also refused to take all pharmeceutical medications.) I used to eat very healthy, and I still do now, but it’s different. I eat no gluten, no corn, no soy, no procssed food, no non-organic dairy, no sugar, no fructose, no peanuts, no legumes and pretty much almost 100% organic everything (you can google “anti-inflammatory diet). I also take probiotics everyday, Vitamin D and fish oil (Omega 3!!!) everyday, glutamine and turmeric every other day or so… and some other things sometimes.
    As far as being in the most terrible part of the flare, I’m sorry to hear that, but it will get better.
    If you are able to take a medical leave (FMLA) from your job… I would totally recommend doing it. The stress of the flare is enough on its own while trying to deal with your job on top of that…
    It is SO hard, but just try to stay positive and be patient. You can’t force or will yourself into remission (although we’ve all tried, I’m sure… ;)

    As far as other alternative medicines… I know that some people take Boswellia, slippery elm bark and marshmallow root, but I don’t have any personal experiences with those…

    Sending you a BIG HUG from Minnesota!
    It will get better, hang in there!
    Polly

    • Mariel June 10, 2013 at 6:49 pm #

      Hi Polly!!!

      Than you for the support! As I read you reply with my mom we both stared at eachother and said “OMG what does this girl eat?!?!” hahaha both amazed on how many things you have taken out of your diet! But hey! if its working out for you and you feel great with the change, than props to you!!!

      My current chinese doctor gave me a very specific diet it consist of: only cooked veggies, rice, beans, bread/pasta, fish, and very little fruit without the peel. Other than being restricted in food I am also restricted in taste as I can only put salt and only salt. Could you please send me an idea of what you eat on a daily basis? Also, what do you eat when you go out to a restaurant?

      I usually go out to restaurants a lot with friends, well I used to, and i have avoid doing so just because I never know what to order and also because I feel very tiered and weak. Im trying to think positively but it has just been very hard a 22 year old to keep a social life when my body is always tiered and weak. Also, I have been thinking of just taking prednisone to give my body a rest from the bleeding, because Hey! its exhausting! Any words of wisdom?

      Thank you and best regards!

      Mariel

      • Polly
        Polly June 11, 2013 at 11:54 am #

        Hi Mariel,

        Thanks for your note back… your “OMG what does this girl eat?!?!?!” made my husband and I laugh out loud! :) It IS tough, especially at first, figuring out what in the world is OK to eat.

        What do I eat… (it’s a good thing I like to cook!) a LOT of spinach (steamed usually), a lot of wild salmon, quinoa (white), almond butter on gluten free toast (Rudi’s gluten free multi grain), sweet potatoes (white), brown rice pasta (from Trader Joe’s), Coconut Bliss (when I need a little treat), bananas, cashews, almonds, roasted plaintain chips (also a treat from Trader Joe’s), white fish (polluck or cod) cooked with turmeric usually, organic eggs (occasionally)… my grocery bill is pretty expensive, but we got used to it very quickly. I always buy organic if it’s available. I drink a lot of tea and coconut water. I also like to invent curries… usually coconut milk based with sweet potatoes and lots of garlic and onions… I only use extra virgin olive oil and coconut oil for cooking…
        My diet is somewhat of the Mediterranean diet mixed with the Paleo diet and the Anti-Inflammatory diet.

        Eating at a restaurant is REALLY tricky… I only eat at places that serve organic and local food… where they have all the ingredients listed and items specifically labeled “gluten free”… if my friends are wanting to go somewhere else, then I just eat before going and not order anything at the restaurant. It really sucks sometimes, I’m pretty much used to it now, though.

        Yes, it IS exhausting! I take a vitamin B12 & folic acid combo for the fatigue and I also apply iodine topically… it helps A LOT!!! You need to get some anti-inflammatory action going… I would recommend a Turmeric pill twice a day (the brand was Source Naturals) until the bleeding stops and also lots and lots of Vitamin D. The U.S. finally raised the recommeneded dosage to 8,000 IU per day per person. But many people (myself included) need more than that… I take 20,000 IU per day. Also, when I was flaaaaaaaaaaaaaaaaring, my Doc (per a study in the BMJ – British Medical Journal) had me on 100,000 IU for a week, then down to 50,000 IU the next week, 40,000 IU the week after that, then down to 30,000 IU for a week, then down to 20,000. It is a LOT of Vitamin D, but it worked for me! I would recommend finding a holistic Doc to help you out with your Vitamin D dosages and everything else.

        I would also recommend getting a stool test done (it’s gross, but it’s worth it!) I found out from mine that my early digestion “sucks”, so I take digestive enzymes with every meal (it really helps) I also found out that I do not have Celiac disease, but I tested as high as someone with Celiac disease when it comes to gluten sensitivity.

        Fyi-
        I take Garden of Life Primal Defense probiotic and Garden of Life OmegaZyme digestive enzymes.
        I buy them online at Swansonvitamins.com because the mark-up in stores is ridiculous.

        Hope this helps. Hugs! Hang in there!
        Polly

        • Mariel June 16, 2013 at 1:57 pm #

          Hi Polly!

          Thats so great how you found a diet that works perfectly for you and makes you feel healthy and amazing! I just came out of the hospital, I was there for 3 days and I learned a lot about UC itself and about the foods that make us feel better. A dietician came to talk to me and basically told me that low fiber anything is better as well as organic, just like you do!
          I feel like going into the hospital was the right thing to do since I was feeling very weak and was about to break. I am 5’8 and weigh just a little under 120 lbs! that is just crazzy for my height! I had lost so much weight and liquids that the IV and ALL the tests definetly helped lift my spirits up! Being there I had a bunch of tests done, catscans, blood work, stool test, etc… and actually got tested for C diff and it was negative. It was basically my colitis acting up. I feel that I am in the right track now that i had a more detailed study of what i have and the treatment I am taking. I also learned a lot about UC itself and that low fiber foods are better for all of us. I am on 30 mg of prednisone and in two weeks going on 20 mg and then after another 2 in 10 mg. Other than that I am also taking Asacol HD one pill 3 times a day, probiotics, folic acid, multivitamins, and potassium. To be honest, when I was in the hospital i felt that the steroids they put in me were stronger since i would only go to the bathroom at most 4 times a day. Now that I am taking them in a pill form, im still going over 10 times. do you know if it takes time for them to work into my system? anyways my new plan in to get this under control, stop taking steroids in a month, go into remission, and eventually be med free! Cant wait for that day to come!!!

          kind regards from San Diego!!

          Mariel

        • Mariel June 24, 2013 at 10:19 am #

          Ohhhh and I forgot to say my vitamins D were at a perfect level!!

  6. Ana June 24, 2013 at 1:15 pm #

    Hi Mariel,
    I’m with you. Our daughter has been battling the flare for almost 4 months now. Following Bev’s, Graham’s, and Lane’s advice we started doing L-glut, prebiotin, astaxanthin, and olive oil, as well as usual supplement of fish oil, vit.D, multi, calcium (very important), b12. She’s been on 6 Asacol HD and Rowasa. She stopped bleeding but continued with soft mucosy bm, 3-5 times a day. So we discontinued the enema (didn’t notice any adverse impact) and were thinking of reducing her Asacol at least back to 4 or less, when she started bleeding again… Could it be that Asacol is just making it worse? Also just a day before bleeding we added a teaspoon of soluble fiber (psyllium husks, finely ground), since I read that this helps in absorbing the liquid and firming up the stool. She also tried two raw baby carrots. So we just dont know again what made it worse. We have to travel to Italy next week, so it seems we need to get this inflamation under control, it’s been so exhausting for her (she now weighs 98) and also we are determined to do FMT either this week or when we’re back in August, and it works best when the inflammation is at its lowest. So just today she started taking Uceris — it’s a new steroid drug, out for about 4 months only, based on an old drug for Crohns disease (budesonide). The difference is that it dissolves only in your large intestine, so you don’t get a systemic steroid side effects (only 10% is metabolized by the body), only local. So even when you discontinue it, you don’t need to taper it off at all. Perhaps, that can be an option for you? The plan for us for now is to take this Uceris, taper off Asacol (I totally agree with Bev and Shelly, and Adam that if they don’t work, why take them!!!!!!!!), figure out the diet conundrum, and do an FMT in August. The diet really drives me crazy, because before we used to do Lmost vegan diet ( with little egg and fish additions), beans, etc, and it worked great. Now, it hasn’t worked… We tried switching to SCD, but after the chicken broth I gave her, her bleeding increased 5- fold… Was it a coincidence? If you have any insight on the diet, please let me know! And good luck!

    • bev June 24, 2013 at 5:02 pm #

      Oh yes, Ana, the asacol definitely made my UC symptoms worse! I never thought it was the asacol, because my doctor said it couldn’t be, but when I stopped it, my BMs got firmer, and I bled less.

      Your daughter will most likely be better OFF the asacol…you wonder why you didn’t stop it sooner…oh I know why…because we listen to our doctors! Why wouldn’t we listen to them? We assume that they are supposed to know the score. We aren’t the ‘experts’…or are we?

      Bev

      • Ana June 24, 2013 at 5:10 pm #

        I know. We were just afraid because Asacol HD did help her at first. And then you just think you’ll increase the dose and everything will be good again. Bit it’s not. Thanks again, Bev, for you being there! I’ll keep you posted because the more we know about various cases, the better are our decisions.

        • bev June 24, 2013 at 10:06 pm #

          Please read my response to Mariel, Ana.

          I do tend to ‘spout off’ and sincerely hope that everything will go well should one choose to discontinue the meds…however, that is not always the case.

          That Asacol HD does tend to exacerbate UC symptoms, though. That’s the last thing I was on before I just stopped it. It made me incredibly ill. The regular asacol never did make me AS sick as the HD. I believe they differ in the way they are absorbed, even though they are the very same drug (mesalamine).

          Bev

    • Mariel June 24, 2013 at 5:49 pm #

      Hi Ana and Bev! haha

      In my experience, stopping the Asacol HD was a very bad idea. I was in the same situation as your daughter 2 months ago. I too was taking 6 asacol HD 800 mg each a day and 2 Canasa suppositories daily. I was 4 months into a flare going about 4-6 times to the bathroom, and I felt like it was getting worse, BM were getting looser and blood was almost always present. After talking it over with my dad, he belives in Chinese medicine, we came to the conclusion to STOP the asacol HD cold turkey one day. Our theory was same as yours, it was making me have more diarreah. Booyyyy were we wrong! Honestly first 2 days without the asacol i felt like i had more energy and was able to function better during the day. little under a week after stopping the asacol, my BM increased to 12-15 times a day and towards 3 weeks later over 24 times a day!!!!! It was seriously hell, i was going to the bathroom at least once every hour! Not only that but i was very emotional, tiered, and kept loosing weight like crazy ( I am 117 lbs and im 5’7 its not a good weight for a tall girl!). Anyways long story short, 3 weeks after stoping asacol hd and crying all day for no reason, i decided to call my GI and he couldnt understand why on earth I stopped taking my meds without consulting it with him; he told me to start taking 3 pills 2 times a day again. Next morning I was admitted into the hospital and was there for 4 days.

      Thinking back about it, i believe the best solution is to talk to your GI, i know mine is always willing to work with me, increasing or reducing my medication. I would suggest to give it more time for your daughter to go into remmission for at least a month, and then maybe reducing to 4 pills, and then 2 after that; but in my opinion going 4-5 times a day is still not normal, and you wouldnt want your daughter to end up in the hospital like me.

      Now I am taking Prednisone to get symptoms back to control 30 g a day, 3 Asacol HD pills a day, 1 g of folic acid, probiotics, and a multivitamin. I also use Rowasa every night but its hard for me to keep it in longer than 30 min. This plan was developed while i was in the hospital, and I feel a huge difference already! i am able to be back at work and somehow regain my strength and social life back! Believe me I hate taking all this pills, since i have always believed in a natural way of healing, but i feel that it is necessary for right now to get my life back. My plan is to reach remmission and slowly go off all meds under my GIs supervision.

      and as far as diet, i would say that that is the hardest part of having UC because every body reacts differently. But I can share with you what i learned in the hospital by my dietician: when we are flaring up we cant digest fiber well so we need a low fiber diet! Right now i eat ONLY cooked veggies, very little fruit (without seeds and peels), lots of carbs (rice, bread, pasta, etc), protein (fish, chicken, and a little meat), and eggs. I do not eat any sugar ( if i need a sweetner i use honey) and i also do not eat or drink any dairy products. as far as the SCD it sounds like a GREAT option but not when we are flaring up ( at least not for me) I plan on defenitly doing the SCD once I get into remission and to get off meds.

      Any questions or anything I am ALWAYS happy to help, and most importantly stay possitive Ana! I know this is very hard on my mom as she has been my number one supported throughout all of this, always making sure she comes with me to my docs apps and that i have food at all times and putting up with my mood swings! haha she is my number one hero and I appreciate her so much, same way im sure ur daughter sees you!!! Your daughter and I will be in remission before we know it!!!

      Take care!!!

      • bev June 24, 2013 at 10:02 pm #

        Wow…you know this is why I don’t like to spout off (like I tend to do) about just stopping meds. Yes, it worked for me. You are so right, though…it is not the same for everyone!

        I would feel just terrible if someone were to take my perhaps ill advised advice and end up gravely ill. I don’t think that I could live with myself!

        I agree, Mariel….we should consult with our respective doctors as to what may be the best course of action for each one of us. I wonder if I had asked my GI first before I discontinued the asacol on my own…I’m sure that she probably would have advised me not to stop the meds. She was not at all pleased that I did, but I must have been becoming allergic to it maybe?

        It worked for me…but in your case, and in others as well, it does not.

        Thank you for your post. Very important to tell both sides.

        Cheers,
        Bev

        • Ana June 24, 2013 at 11:52 pm #

          Hi Bev,
          I wonder if you get notified when I submit replies to other people. I just wrote my responses to Mariel, I hope you can read them. As to the doctor, our GI is flexible and is all for supplements and alternative stuff as long as you don’t bleed but was really concerned that we were letting it go for too long with our daughter. However, he never mentioned any supplements, including multivitamin, calcium, vit D, etc., which I think are key to long time remission. Neither did he mention l-glutamine or astaxanthin… Or FMT,which he agreed made perfect sense. Another thing I thought is worth mentioning is that we did Fatty Acid profile blood test for our daughter which showed that she had the wrong ratio of Omega 3 to Omega 6 ( although she didn’t have any red or white meat), typical of many of us and especially UC patients. Unfortunately, when she was in remission, we kind of ignored it but we’ll try to be more aware of it now. What I definitely learned is that the well being and diet (and it was always very good but perhaps not mindful enough for a UC girl) can’t be taken for granted, for my daughter it changed overnight…. Keep healthy!
          Ana

          • bev June 25, 2013 at 6:53 am #

            Yes, I subscribe to almost every post! I get notified.

            I love reading your posts to everyone!

            Thank you
            :)

      • Ana June 24, 2013 at 11:36 pm #

        Hi Mariel,
        Sorry, I hit submit accidentally. What makes sense to me is to try to create the best flora in the intestine but it’s not easy to do when you’re having a flare. Another difficulty is to know what foods do this job…. I would love her to be able to eat everything (or almost everything like Bev does or Polly. If it is SCD diet, that will be great too. For now, we don’t know. I will let you know about the progress with this new drug Uceris, since from its description it sounds like a good compromise of a steroid without major side effects to bring down the inflammation.
        And keep getting better! I love your spirit!

    • Ana June 24, 2013 at 11:30 pm #

      Hi Mariel,
      I really don’t know what to think. I’m with you and I’m with Bev. And you might be right. In all truth, we didn’t stop asacol for now, just went from 6 to 5 but and eliminated the enema. We didn’t see things getting worse with eliminating the enema which she could hold for 2-5 hours but it was disrupting her sleep. If it were me I might have tapered the meds more quickly, however I don’t want to take any chances with my daughter. So today she started on one pill, Uceris (9 mg steroid that dissolves in the large intestine), and so far so good. Her frequency went down to just 3. So we’ll do the course and perhaps go down to 4-3 asacol before we do FMT, hopefully in August. For now what’s important is to control the inflammation. The diet with less fiber totally makes sense at the healing stage, it’s just we had bad luck with chicken broth. we’ll continue with all the supplements we’ve been doing and maybe add folate supplement. I do believe, however, that meanwhile its important to create the right flora in your gut. So we’ll keep incorporating those cooked veggies, fish, and egg for protein. From her past experience, her protein and albumin levels were good even on almost vegan diet. From what I read in UC diet books, fish and occasional eggs are easier to digest than red meat. We’ll be also keeping our fish and flax seed oils. She tested positive for lactose, so no milk products for her. She was negative for celiac, however from the medical studies I read, UC people who tested negative for gluten, still do better with no gluten in their diet. So although it didn’t seem to give her any problem while she was in remission, we’ll exclude gluten for now (I don’t know how we’ll be able to do it since well be traveling to Italy). Pimmstill trying to figure out what caused that flare: she was great one day and then miserable the next day with blood in her stool. The only difference was two protein meals (fish and shell fish soup + chicken soup) and fewer cooked vegetables in one day. Also, perhaps, we lowered our dose of VSL to just one pill a day, which was most likely a mistake. We also didn’t do Omega 3 when she was in remission, probably another mistake. So, I’m hoping sheathe Uceris will help take of the inflammation and we’ll keep the rest of the supplements

      • Sharon June 25, 2013 at 6:44 am #

        One VSL pill a day is not enough to truly help with remission. The studies that were done used 4 pills/day (I think that’s right). When I used it to go into remission, I was using 4 VSL#3DS packets a day which is equal to 8 pills a day. BTW, I switched to Almond milk in place of cows milk. Since it is non dairy, you can use it to make smoothies which can give your gut a break while adding protein powder.

        • shelly in maine June 25, 2013 at 8:26 am #

          i’m with you on the vsl…and the only real probiotics studied.
          I do caution all on almond, coconut, etc milk, which I use in my smoothies as well, about the extras that go in especially carrageenan which is known to cause many intestinal inflammation/irritation…just fyi…so I rotate or omit, but am cautious about all the additives! Our food supply is certainly not what our previous generations ate!
          Shelly

        • Ana June 25, 2013 at 11:37 am #

          Totally agree, one pill VSL is not enough (you just get fooled by those billions). So just checked, regular VSL has 112 billion bacteria per capsule, while one sachet VSL DS has 900 billion. So the difference is HUGE. So now we re doing one Ultimate flora and one VSL DS sachet a day (split in wo doses). On the box it says take up to 4 sachets a day. In fact, I reread the recommendations of the GI to whom we took our daughter (San Fran school of medicine, children gastroenterology) who recommended taking two VSL DS sachets a day. Somehow, it escaped me that there was a difference between a regular VSL and a DS one (our local GI seemed not to have know it either and even thought that taking 4 regular caps of VSL for our daughter was excessive, that’s why we switched to just one for maintenance). In fact I learnt about the DS form from you guys. So thank you!!!! And besides, our insurance is paying for it (we had to have it preauthorizefirst).

      • bev June 25, 2013 at 6:56 am #

        Hi Ana,

        Apparently there is a lot less gluten used in foods in Italy! Isn’t that great news? Even in their pasta, the ones that are packaged as well (because there is a lot of homemade pasta there, too).

        • Ana June 25, 2013 at 11:23 am #

          That’s good news! I will let you know how it goes.

    • shelly in maine June 25, 2013 at 3:43 am #

      Hi Ana and all,
      Great thread and posts…just goes to show you we are all different and some may need the booster meds. I believe tapering is key to give the body a chance to adapt to the changes…the slower the better. Like Adam has said in the past even he had to go on pred o couple of times with a very, very slow taper. So you never know.

      Ana…NO MISTAKES…it is all learning and trial and error. There is a learning curve for each and every one of us. UC is not a one size fits all as we know. I know I spout some of the same things, but a reminder that a person can test out OK to something, but the body may disagree and be intolerant. Another reminder is to read the….SCD lifestyle four dark horseman…I don’t want to include the link since it will slow this down.

      Bev, keep spouting. That’s what makes the dialogue continue and why I spout that for some it is more involved and disease like or at least a higher gene/faulty wiring so to speak.

      My 2 cents…good health all…stay positive..Best, Shelly

      • bev June 25, 2013 at 6:58 am #

        Shelly!! LOL…I do spout, don’t I??

        I just don’t want to ever harm anyone…it’s my worst nightmare…

        I have to remember that we are not all alike.

        Love ‘ya girl!

        :)

        • shelly in maine June 25, 2013 at 7:50 am #

          haha…you used spout above..I personally like to call it soapbox rants! :-) Guess that’s part of what I do is to keep reminding about the variability of UC and how much we don’t know about it and about the human body. Guess that’s my soapboxrant…and patience and how we learn from UC.
          So keep on…… because we know that probiotics and anti inflammatories and colon healing are a must!
          :-) Shelly

          • bev June 25, 2013 at 8:36 am #

            Cheers
            :)

    • Mariel July 5, 2013 at 7:50 am #

      Hi Ana!!

      Hope your daughter is doing better!! Just wanted to check up on u guys and hope u r ready to enjoy ur vacation in Italy!!

      Wish all the best,

      Mariel

  7. Graham from England
    Graham lee June 25, 2013 at 3:14 am #

    Hi everyone,

    Just to add my 2 cents as I believe you might say.. I tried the Asacol pills some years ago and they made me feel terrible, headaches and just not myself. The suppositories are a different story for me at least, slightly unpleasant to take at night but they just give me the helping hand now and again. I sometimes wonder if it is worth stressing to get every gain possible with diet and supplements only for the worry to nullify it maybe. Drug free is a great destination but take time maybe?

    • bev June 25, 2013 at 7:00 am #

      Hello Graham, my man!!

      Fab to hear your two cents!! The asacol did the same things to me. Ugh. The suppositories are probably better tolerated by you due to them not passing through the digestive tract and being placed right where they should be…lol.

      Feeling good these days?

  8. Sharon June 25, 2013 at 6:57 am #

    Graham, I agree. I have 4 kids and I simply don’t want to stress out about everything I eat. I make good choices most of the time and try to constantly tweak my diet as I get older but I refuse to stress about it.

    As for the enemas, I think it’s important to know where your disease is located. For me, the enemas don’t reach the part of my colon that is diseased. After years of the discomfort of using these during every flare, my current GI asked me if I thought the enemas helped. I said I didn’t know but I had always used them in a flare. He noted the length of the enemas + the distance it would likely travel meant that at best it may hit less than an inch of my 6-8 inches of disease. HMMMM…never thought of that before. So, no more enemas for me. I successfully used Asacol with no side effects, only during flare ups and never as a maintenance drug for 20 years (in the beginning I actually used sulfasalizine-Azulfidine but at some point switched over). I can no longer take ASA drugs because of Lialda. I do not have the enzyme to break down the time release modifier which we discovered after a near death experience. Because of the severe reaction, I am now labelled allergic to the whole class of drugs.

    So…all that to say, I believe there is a time for medicine (Prednisone has saved me several times). The goal is remission. If you can get there naturally, great. If you need drugs, take them.

    • bev June 25, 2013 at 7:01 am #

      Great post Sharon!

      :)

    • Ana June 25, 2013 at 11:22 am #

      Hi Sharon,
      Yu are absolutely right. The length of the affected colon is important. For our daughter it was 18 inches a year and a half ago. What I understood was that the enema reaches to about 12 inches. So we we were not hitting all the length but it definitely helped. On the days during her first and second flare, the longer she was able to hold it, the better she was the next day. Our daughter would also try to use gravity to make it go up the colon further. However, I think we made a mistake of not discontinuing it when she was in remission and also when the flare started, she stopped trying to get it up her colon (since naturally, it felt uncomfortable). So that’s why we discontinued it. However, it still might be a good resource for a flare.

      BTW, sorry for the typos–I’m typing on an iPad and sometimes I hit a wrong letter or don’t notice autocorrections….

      Ana

  9. Graham from England
    graham lee June 25, 2013 at 8:13 am #

    Sounds like you have the right balance Sharon.. I mention stress because (and thanks for asking Bev)
    I have recently had a minor stroke. I don’t know if this caused mine yet or if I ever will but it didn’t help for sure. I am alright BTW and consultants have been shocked how good my tests results have been so far “keep doing whatever it is you are doing”. Thanks to Evoo no doubt and the supplement/diet advice I have learned here….

    • Ann June 25, 2013 at 8:31 am #

      Hi Graham, Bev and I were just talking about you. We were wondering if you were taking the probiotic that Bev recommends. I am still taking evoo and just started the probiotics. I am really seeing better results. I am so sorry to hear you had a minor stroke OMG! I pray you are okay.

    • bev June 25, 2013 at 8:34 am #

      What??? Oh, Graham…

      Boy, you never know what’s around the corner, huh? I’m so g;lad to hear the docs are saying you are actually doing better than expected…but, geez Graham.

      It’s always the good ones, and you are a good one, Graham. You life is stressful, you say. I suppose you HAVE to get that down somehow. Easy to say, right?

      What are you going to do to make yourself the priority? I think you are going to have to, no matter how averse men feel to doing so. You are the most important person in your life, Graham. You really are. If you aren’t here…them you aren’t here, you know what I mean? You can’t be here for anyone else (wife, children…us), if you aren’t here.

      We ALL need you here…YOU ARE NUMBER ONE. You come first…you are THE priority. Believe it…live it…

      Fondly,
      Bev

    • Sharon June 25, 2013 at 8:55 am #

      Graham, hope you are doing better. Have you ever tried yoga for stress? For me prayer works great too but I get that not everyone feels the same. Either way, you need to de-stress (using Bev’s methods of making up cool words). I for one can get all tied up about the dumbest things and I swear I forget to breathe. So have a shot (of EVOO) and breathe. This too shall pass (hopefully in a well formed, un-bloody kind of way).

    • shelly in maine June 25, 2013 at 9:22 am #

      Graham.
      So sorry to hear the news. You are a trooper and on your way to healing your body from bottom up! :-)
      Hang in there…there is only 1 you so take of you.
      Health and healing your way.
      Best, Shelly

    • Ana June 25, 2013 at 11:13 am #

      Hi Graham,
      I was missing your comments this past month… I’m so sorry to hear you had a stroke and happy that it was a minor one and that you are recovering! EVOO and fish oil are good for inflammation in general, as well eliminating stress (it would have been the most difficult part for me), and trying to establish a good fatty acid balance in your diet and eventually in your body (1 omega 6 : 3 omega 3). When my daughter was diagnosed with UC we all started an almost vegan diet with tons more veggies, green joucing, no dairy, no red meets or chicken, and much more exercise. I was curious about how it might affect all of us. So among other things, I did a few tests for myself. I was,always in a pretty good shape and thin, however my cholesterol levels were borderline between normal and elevated, although our diet had been quite healthy always (I just took it as a given, considering my mother’s higher levels of cholesterol and blood pressure for which she’s taking medication). My blood pressure used to be about 120-125 over 80. After 4 months or so on a new diet for us, I did the tests. I was very surprised to find out that my cholesterol went way down, together with my blood pressure which is now between 100-110. The only marker that was off was vit D levels (I should be supplementing, which I do but only occasionally). Hard to say what caused such changes but I can’t help but attribute them to our lifestyle and diet changes (and daily green smoothies). Another thing that happened was that after about a year my husband’s autoimmune inflammation affecting the retina (for which he had been taking prednisone for years and could never go below 15 mg without it coming back) has been able to taper it down to just 1 mg (hoping to discontinue) and still doing good!
      Sorry for this deviation from our UC topic, but this site feels like a community of friends.

      All the best to you Graham!

      Ana
      Anna

  10. bev June 25, 2013 at 8:35 am #

    sorry for the typo…THEN you aren’t here…I was emotionally typing…

  11. Graham from England
    Graham lee June 26, 2013 at 3:47 am #

    Ladies,

    Thank you all for the support, everyone needs it. Whatever the cause turns out to be, as long as the recovery is good I am going to limit myself to a 5 day week and no double shifts. It is good that the tests have been great so far but this also means I can’t improve my health by diet or smoking cessation as I have already done this, my blood pressure is also excellent so WTF!?

    Sharon, the Lord and I parted company a few years back. Though I have many Christian values I realised I didn’t need to believe etc to still be a good person. I have the highest respect for those who do though but no longer constantly wrangle with the issue. I may well go with the yoga suggestion, could be just the solution.

    Ann, I am a bit of a fluzzi when it comes to probiotics, can’t stick with one as they all seem to cause me issues (except the yoghurt drinks). I had just tried the VSL3 then all this started so now I just don’t know. On 300mg of Aspirin, 40mg statin and Omeprazole, Bev will have kittens, lol!

    Hey Mariel, sorry for slightly hijacking your thread and here’s wishing you good health!

    • shelly in maine June 26, 2013 at 4:04 am #

      haha kittens!! Great attitude Graham…you know we are here for you. You still have holiday??
      Is this something that runs in your family? I’m sure you are researching all angles and the effects of those meds on your UC.
      I have a friend who has Tia’s and no known cause. Hopefully you will get answers so you will be able to fight effectively.
      Stay positive. Best, Shelly

    • shelly in maine June 26, 2013 at 8:13 am #

      See you just never know. It is so important to value every minute. I think that UC is one of the things that teaches us that.

      It is important to be the best person you can be…spirituality is NOT (organized) religion…and that is as far as i will go political!

      Kittens and nuns…haha :-) what a great community we are!
      Best all…Shelly

      • bev June 26, 2013 at 8:18 am #

        Spirituality!!

        Great word Shelly!!

        Kittens and nuns…who would have ever thunk you would see those two words in the same ‘post’???

        Thank you:)

  12. Ann June 26, 2013 at 6:17 am #

    I know what you mean. Sometimes I feel like the sickest most healthy person alive! Love that kitten thing…made me LOL!

    • shelly in maine June 26, 2013 at 8:15 am #

      yeah, my Dad and i used to joke about how good we looked for being so sick! He had Crohn’s.
      And my blood work always comes back pretty good except for anemia even when i was sick before having my gallbladder out…which by the way took 3 months for us to figure out. Our bodies are sooo complex!
      :-) Shelly

  13. Sharon June 26, 2013 at 6:25 pm #

    Hey all. Just checked in and didn’t want my lack of comment to seem off
    putting. Just like with diet, meds, alternative methods of treating UC, I
    also think of my relationship with God as part of my treatment. Just as I
    do not expect everyones experience with UC, doctors, insurance, etc to be
    the same as mine, I also don’t expect your spiritual experiences to be the
    same. For example, if we decided Bev shouldn’t express her love for L-glut
    because it might be offensive to someone who chose Remicade, that would be
    crazy. It might also cause Bev to use words stronger than kittens, nuns,
    and awful-er. I do not judge an atheist’s decision to “not believe” any
    more than I would criticize a person’s decision on medical treatment
    choices. So, do not be surprised if I mention my prayer life or faith again
    because that is as much of who I am as anything else. I won’t judge your
    lack of belief if you won’t judge my belief:) Definitely changed the theme
    of this thread but all good conversation.

    Sharon

    • bev June 26, 2013 at 9:53 pm #

      You are so sweet, Sharon.

      I hate the word ‘atheist’ anyway…it sounds, well, I don’t know…I don’t even know why there has to be a word for it at all.

      You go ahead and just be you! That’s what makes you so wonderful my friend. We are al in this together and we all want the very same thing…to get better!

      Bev
      :)

    • shelly in maine June 27, 2013 at 2:59 am #

      well said Sharon…to each his own…if more people had your attitude about religion/beliefs perhaps there would be less war!
      :-) Shelly

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