Help, I Feel Lost, Big Decision Ahead

mylene zumba instructorIntroduction:

Hello my name is Mylène Savaria and I am 41 years old. I live in Canada and I am a social service worker and on the side I live my passion and teach zumba. I have 2 grown kids and a wonderful husband. I am a passionate person that loves life even when at times it is quite challenging but we live and we learn. I was diagnosed with UC in 2007. I had symptoms before that time but they went away. In 2007 it was a rough year. I got the news of my DX of UC while I was at the hospital for something else. I was at the restaurant with my best friend when I started convulsions. I ended up having a cerebral thrombosis blood clot to the brain caused by the pill (oral contraceptive) So double whammy ! I went from being healthy to having two major health issues. The blood clot is still there but at least all is stable in that department. As for the UC it gives me soooo much problems. Long flare ups and frustration in trying to get in remission.

My Symptoms:

Right now I would say that I am better than I have been in a long time. After being hospitalized for a couple of days on high dose of prednisone which I am now tapering off (went from 100mg to 45mg so far) I have now started the SCD Diet 2 weeks ago and I would believe that is what is making me better as I have been on prednisone before and it did not help as much as I am now. I now go mostly in the morning, hardly no more blood and still trying to clear the mucus. Normal pooh is starting to happen again Yeah ! Before I use to go 25 to 30 times a day and I still managed to work and teach zumba on a full time basis ! I am now on a short sick leave which gives me time to start this diet.The longest I have had peace was 6 months in the last 5 years. Its not easy and I am surprised at how we accept things and find that we tolerate more than we should.

My Story:

Right now I am faced with a big decision….I am still on the prednisone and respecting the SCD diet 100%. My Dr now wants me on Humira. Remicade failed to help me. It did for the first injection than nothing. According to the Dr its Humira or surgery. I am not feeling either one ! I want to give this diet a chance as I believe in it. My husband and some friends believe I should do both but how am I suppose to know what works if I am on prednisone, humira and a diet ????? I want to listen to my body and my body and soul but I do not have the approval of my own medical team. I want to do what is best for me but I am getting lost in too much info or opinions from every one. Will Humira help or just set me back ? Humira is in the same family as Remicade so why would it work more? And from what I see everything stops working eventually…I would wish to have the support of my Dr but he brushed me off when I had asked him at the beginning if what I ate could have an impact. So telling him now about the diet I know he wont be in agreement. Here in Canada I cant ‘fire’ my Dr we need referrals from a GP and it is very hard to get second opinions. I do not want to be completely on my own without a medical support. I am scared. I do have a great support system and people that love me and for that I am grateful but they look at me not knowing what to say or do as they can never know what it is like and I end up wanting to reassure them meanwhile I feel alone in the hard decisions.

Where I’d like to be in 1 year:

In 1 year I would like to be without medication while continuing my SCD lifestyle. I would like to be able to read my body and all the signs that it is giving me to prevent flare ups and manage a healthy way of living symptom free.

Colitis Medications:

I have tried all the possible drugs I think..Mezavant…salofalk…immunosupressants (which got me sooooo sick) Remicade that also did not work…and now faced with a new drug and dilemma…to take or not Humira while doing the SCD diet.

written by Mylene

submitted in the colitis venting area

29 thoughts on “Help, I Feel Lost, Big Decision Ahead”

  1. Hi there Mylene…

    Please read all of my posts, if you can. I’m not sure how you do that, but I have written over and over again what has worked for me. I am currently in remission (going on 8 months now) WITHOUT drugs, any more. I refuse to take drugs, as they all have either stopped working OR made me feel just awful. It seems that there are NO good choices when it comes to UC meds. I sure know what you mean about NOT having doctor’s approval! Mine will not listen to anything I have to say. Even with my remission stareing him and the gastro in the face, they think it is just coincidence. I feel that the medical profession is doing us a huge disservice and actually needlessly harming us with prescrition drugs and surgeries before we have tried to heal ourselves. What works for one person with UC does not necessarily work for another, either, which makes things even more difficult.

    I had the worst flare of my 13 years with UC, just last year. It was so bad and it went on and on. I was already on a ‘maintenance’ dose of asacol, which doctors INSIST that you have to remain on forever. I flared anyway, like we tend to do. So, up went the dosage of asacol, enemas were added…I felt so sick, like I was dying. Drugs do not agree with me at all, but the doctor didn’t care. Just take them and shut up…you know how it goes…doctor knows everything, we know nothing. All that wasn’t working, so the doctor said prednisone, imuran, remicade…and that’s when I held my ground! I’ve been reading posts fronm other UCers on this site for a long time, and I am very educated now. I stood my ground and said no way. I decided to try a good probiotic just for laughs (but they are no joke…lol) called CRITICAL CARE ULTIMATE FLORA by RENEWLIFE, and within weeks, I was feeling so much better. The pain, gas, and bloating went away…I could not believe it! My body must have really needed the probiotics. I was feeling SO good that I went off of the asacol. I thought, what the heck…it was actually making things worse, the higher the dose I took, so why not. Well, I felt 100% better off of the damned crap! Everyhing firmed right up and it felt ‘normal’ to go to the bathroom again! I had been on asacol for 13 years! I didn’t even realize that it was making things worse and making me feel so sick.

    Anyway, long story short, I still had a bit of bleeding, so back to the vitamin store I went and asked what I could take that might help sto it. They recommended L-glutamine, and within two days, the bleeding was gone! I could not be a happier camper. Because I haven’t called the doctor in almost 8 months, I got a call fron him last week! Apparently, the specialist is ‘following up’ on me and wanted to see me. I was incredulous. It usually takes at least 2 to 3 months to get an appointment with a specialist! I too live in Canada…B.C. to be exact. Anyway. I went in and told the specialist everything. Well, now they want me to have another colonoscopy next month, because it’s been more than 10 years that I’ve had UC, and they want to do a ‘flat biopsy’ just in case of cancer. I do not want a colonoscopy, because I don’t particularly want to upset the apple cart at this point. I am feeling normal for the first time in years. The specialist was asking me what strains were in the probiotic I was taking, and of course, I didn’t know. It’s like I am a guinea pig now and I think they want to see if I have any sign of UC. I was given an inflammation test and a vitamin D test (neither of which I have had in the whole 13 years that I’ve had UC!) I am wondering why all the tests all of a sudden. I dropped off the radar for 8 months, and now my two doctors come a calling? Strange…very strange.

    I guess what I am trying to tell you is that YOU are the boss of your body…not the doctors! You are probably like most of us, and want to do what they tell us to do. We are so afraid of saying NO to our doctors…almost like they are our parents! What’s up with that, right? I’m the same way, but since I went off on my own, and healed myself…I feel oddly strong now! It’s unreal how in charge I suddenly feel. Think about all of this. You have the power. I know it’s scary, but I am not scared any more. I used to worry about surgery. I will never take drugs again for sure, and I hope I will never have to have the surgery!! If I do flare badly and can’t manage it. I would most likely opt for the surgery. The drugs are only going to possibly harm us in the long run. I am way more afraid of that than surgery.


    1. Hi Bev !! First and foremost thank you sooo much for taking the time to write me your story ! Your experience and words of wisdom are greatly appreciated helpful and valuable to me ! So cool that you live in BC must be gorgeous over there ! I live near Montreal away from the big city near nature.

      I applaud you for all your hard work and perseverance in getting better and I will draw strength from that !I have a few questions if thats ok… Are you also on the SCD diet or are you just taking the probiotic and L-glutamine ? I looked up your probiotic there are different sites with different prices where do you order yours ? I make the scd yogurt ..will it be too much if I add a probiotic ?

      There is an update to my story my Dr now does not want me to start Himura and says he has another plan in mind another drug. I am just glad it is buying me some time to build the courage to tell him that my goal is to be without drugs (I never heard of asacol what is that one ?). I am afraid that he will ‘fire’ me if I dont comply. Might be silly but I know I give him way too much power but I also dont want to be without a Dr. I will get to my goal I just need patience.

      Keep going strong Bev ! You are amazing !! :)

      Have a great day and looking forward in chatting more !

      1. Hello Mylene!

        Aaah, beautiful Quebec! I was born and raised in the Toronto, Ontario area, and spent many a summer at a yoga camp in the mountains in Quebec! My grandmother was a yoga teacher (btw, she is 92 now, and still teaches…I know!!) and I went three summers in a row in my pre teens. It’s so gorgeous there.

        Actually, believe it or not, I am not on any diet, HOWEVER, some UCers really benefit from dietary changes and have certain trigger foods which aggravate their UC. I consider myself extremely lucky that I do not seem to have to watch what I eat or change anything in my diet! At last, I have something actually fortunate about this disease…yey me!!

        As for the probiotic that I am taking (and will forever!), I just buy it right at the vitamin store! I don’t have to order it online or anything like that. In Quebec, sometimes the same products are not available direct, but I’m sure your health/vitamin store could order it in for you. I’ll even bet a store there somewhere may even carry it already. You may just have to check around.

        I wonder what it is that your doctor has in mind. I am intrigued! I really think that doctors are starting to ‘believe’ in alternative treatments in bowel diseases for alot of reasons. Many patients do not tolerate the drugs, and they cut down the patients’ quality of life in some cases. The asacol that I took (it’s mesalamine tablets, which are slow release and do not dissolve until they reach the colon) made me very nauseated (for 13 years!) and as I had to increase the dosage, because I think that all of the drugs eventually cease to work, my UC got even worse! Instead of helping me, the asacol was actually exacerbating my symptoms! Of course, the doctor poo-pooed that, stating that it was the UC itself that was causing me to feel like death. Hah! After discontinuing it, I feel like I felt before I ever clapped eyes on the asacol! I think that once we are diagnosed, and are given a drug to ‘treat’ the UC, we get into the merry-go-round of treatments. This one didn’t work, let’s try that one…this one is making you sick, let’s try this other one…and so on. Perhaps doctors are waking up now, since there is so much new research and so many alternative natural treatments. I never believed in natural stuff…I was a huge sleptik…but I certainly do now! I’m walking proof! I think my GO and the gastro specialist are quite taken aback, actually…

        Now, I’ve heard from Adam, and a few others like Shelly, on this site that probiotics are being researched like crazy in treating this and probably other bowel diseases! Man, does that ever make me happy! I just somehow knew when I was told that I would have UC forever, and have to stay on drugs forever, that this just could not be! No way!!

        Yes, we do give our doctors too much power. We think they are like Gods, sometimes. Sure, they probably know a bit more than we do…but they are always learning, too, believe it! Some are more stubborn, and not open to new things than others. That’s why it’s up to us to watch out for ourselves. We only get this one body. Why would we want to damage it with harsh drugs and chemicals? Would our own doctor take the shit that they prescribe us? Or, give it to their children? I think not…they would try the natural stuff first! I know it.

        Cheers for now…I write way too long posts, don’t I?! I get so fired up…

        1. So sorry for the typos…I am a huge SKEPTIC…not SLEPTIK…

          Also, my GP (family doc) not GO!

          Sheesh…I should proof read before I ‘submit’

          1. Hi Bev !

            Guess what I found the probiotic at my health store so I wont have to order it online yahoo ! I am still wondering if itd too much to take with the yogurt I am doing and taking…Anyway just wanted to say Thxs again !! xx :o)

          2. Good morning Bev !

            I hate the word ‘illegal’ as well makes me feel like a SCD criminal lolll It is the Bifidus and too many strains I think. So for now since I am at the beginning of the diet Ill be good and respect it 100 % with time I will see as I learn what my body can or cannot take. I am going to get today my vitamin D and Omega 3 and ordered multivitamin scd approved lol I am on the right path I think !! Have a great day Bev !!!!

        2. Hi again Bev ! I love your long post even with the typos ;) I also have family in Toronto and in Ottawa ! Yoga teacher your grand mother and 92 that is amazing ! I am a social worker with the elderly population so Bravo for grandma ! I will start the Yoga soon to help with the stress and my too many zumba class that I teach !!

          Its wonderful that you did not have to change your diet !! I am trying to learn my body and what works or not so its a journey but eating healthier cant hurt ! As for the probiotics I will look into my natural store to see if they have it, I hate having to order online !

          I hope Dr’s do wake up and I agree with you that if it would be them or their loved ones they would think twice !! I am learning so much ! Thanks a billion again ! Ill keep you posted on what is this new treatment or drug ;)

          1. Mylene,

            You should be aware that the probiotic Bev is suggesting is not SCD legal. If you want to take it that’s fine, I just thought that you should be aware of this. That’s why I am hesitant to take it, but I don’t doubt that it can be very effective.

          2. Hi Mylene…

            Sheesh…I didn’t know that the probiotic I’m taking isn’t SCD compliant (I hate the word ‘illegal’…lol…sounds so felonious). I don’t follow any special diet so I wasn’t even aware. I wonder if it would really ‘bother’ you to take it?

            Why is it not compliant with SCD again? Bifidus?

          3. And a good morning to you!

            Yes, Mylene, I would definitely do that. Stay in the boundaries of the SCD diet for sure. That way, you will at least know if it works, right? Like I said in some other post (!), it does not have to be the same probiotic for everyone!

            I am so glad you are trying the natural way…I REALLY REALLY believe that it is the ONLY way, because the drugs never seem to be the answer.

            Have a great day, my friend!!

  2. Hi Mylene,

    I too went on the SCD recently and I must suggest that you stay on it. It works wonders! 2 weeks is nowhere near enough time for it to work. I have been on it for close to 5 months, and I am nowhere near back to full health. However, even my worst days are so much better than my best days pre-SCD. For UC, its supposed to take 2 years before you are symptom free. I don’t know anything about Humira, other than a recent article, on this website, which claimed that it helps 10% of patients. SCD is supposed to work for 75% of UCers. (Not just work, but heal)

    Bev — I went to a naturopath recently, who took out some book, and read off the possible side effects of asacol. One of them was ‘worsening of ulcerative colitis’. I thought this was typical.

    1. Yes, I’ve heard about asacol worsening UC sometimes. It seemed to happen over a long period of time with me, and also when the dosage increased to 12 pills per day. My body screamed…NO, I think!


      1. Asacol almost did me in over Christmas 2012. The doctors at GL had me taking 3 – 400MG tablets twice a day . I had diarrhea so bad and it was a violet color. The smell was terrible. I could not even get out of bed on Christmas day. They started me on this and now I am on Prednisone. Both have made me sicker than a dog. Now the doctors (I use this term lightly) at GL want to put me on Humira. I asked for a two week break before starting Humira and the doctors became furious. I honestly think they get paid by each pill they push.
        Bottom line is that I thought Asacol was going to do me in.

        1. Hi David !!

          So sorry to hear that !! I know the feeling too well ! Since September when I posted my story I never eneded up taking Humira because my GI suggested another type of the same drug called Simponi which I inject myself. I am trying to get ried of the 5 mg of prednisone that I have left (My level of cortisol is not high enough to completely stop yet :() I am still on the SCD Diet and my symptoms are way better but I still get bad days sometimes. I write a journal of my symptoms and what I eat every day to try to understand better. I want to stop the injections because I am losing my hair and I developped a skin rash because of the drug. Its also hard to tell what works the drugs or the food ! I am scared to only rely on my diet and my probiotics but the drugs does other damages that I am also afraid of ! Not an easy spot to be in especially that like most GI I do not have the support of mine. And I dont want surgery so I will wait and see my next colonoscopy and take it from there. So I feel your pain and if I can be of any help let me know ;) Wishing you courage !

          1. Mylene,

            so sorry to hear of your recent struggles! We were at a place where the next step was remicaid or humera. I was nervous about this next level. Friends kept telling me to try gluten free but it was so much work and the doctors said that the inflamation had nothing to do with diet. They also had no other answer as to why the meds werent working.

            We tried gluten and dairy free and saw a huge difference in just days. I couldnt believe it! Now 7 days later we are blood free and having formed logs instead of going to the bathroom 12+ times a day.

            If you are not seeing a positive result with Humera I would urge you to stop taking it and see what the diet does on its own. We also visited a D.O. who gave my daughter (age 14) some IV multi vitamins and put her in an hour long oxygen therapy. After 55 days of bleeding and vomitting and running to the bathroom all day, we are so excited to see a change.

            But you are right about listening to your body, and doing what is best for you. Everyone is different. I will say a prayer for you today to find relief and know what is the next step for you. Here is a link by Dr. OZ.. He is an MD and is talking about finding the source of the inflamation through changes in diet. He has seen many people to full remission through diet changes and not med after med.

        2. David…follow your gut…you are in charge of you, not the doctors!!

          You think asacol is bad (BTW, same thing happened to me…that stuff made me SO sick), wait til you take humira. I wouldn’t. Even if it works at first…it won’t for long. NO MEDS DO. That’s the lie of ulcerative colitis…meds are NOT the answer. Too bad…it would make things alot easier for sure.

          I think we would all like to be able to just take a pill and have thius awful condition clear up. In a perfect world maybe…unfortunately, it is just not reality and I believe it’s up to each one of us to find our way through this thing…even though it’s difficult. WE have to do the work and help ourselves. What you said about the doctors is probably (and sadly) true…they get brownie points for the meds that they prescibe to us…


    2. Thank you KK-SCDer for your encouragement with the diet ! It is the toughest thing but I know all worthwhile. It already has improved me in the last 3 weeks. I am great during the day its the mornings that are the worse. I know I have a long way to go still and I am the impatient type but one day at a time ! It is quite a learning experience for me to be able to read my body and give it all the right stuff but I KNOW I am doing the right thing !

      Way to go on your own recovery and persistence with 5 months into the diet !! What do you find the hardest ? I wish you a full remission soon !

      Humira is now no more an option for me my Dr says he has something else in mind we shall see but I am sticking to my will to be meds free. Are you on any drugs ?

      Have a great day !!!

      Mylène :)

    3. Hi KK-SCDer

      Really ? What is in there that makes it SCD illegal ? Its non dairy …i guess i shoul read the ingredients again… I did not buy it yet but did find it at a store. Thank you for the info oh la la so much to check lol

  3. Hi, Mylene. What Bev and KK said is right on. Gastro doctors are not taught to help their patients with diet, as a matter of fact, mine acted like I was stupid when I told her I was taking aloe vera juice. I just want to add that for now you might try an otc called Mucosa for a few days, it’s dries out the mucus membranes including in the colon. The naturopath I saw had prescribed it for me. Also there are alot of natural supplements that may help, you just have to find the one(s) that work for you. Nice picture, I love your necklace, I make beaded and macrame jewelry and knitted items to sale at craft shows when I can. Best of luck to you. Hey, Bev, I tried so many different supplements that I heard of on this site and am now taking astaxanthin. I believe antioxidants are very important. I also took one I heard of here called yunnan bayao, supposed to help for bleeding, was designed for gun shot victims, but alas, it never helped me.

    1. That’s great Maggie. The astaxanthin is supposed to be a very powerful little anti inflammatory. Not sure what it’s doing for me, because the probiotic was already working, and I started the astaxanthin at the very same time as the L-glutamine, but I’ll keep taking it anyway. It can’t hurt to take an antioxidant! For all I know, it was the thing that helped stop the bleeding, or the combination of that and the L-glutamine.


        1. Hi Joanna…

          The brand that I take is a 4mg capsule by ‘NOW’. I’m not positive that it is the exact same as krill, but it is apparently an algae extract…so it sounds like the same sort of thing.

          BTW, I just had the inflammation tested in my body last week and it goes by number, which in my case, was a 2. Normal inflammation levels in the body are between 0 and 5, so I think that’s pretty good for someone who has UC! The doctor said if I had levels in the 20s or 30s that would be very bad, which I guess they can be as high as in someone with an inflammatory disease, like UC. I wish I would have known what my levels were when I was in a flare, or before I started the astaxanthin. It would have been so interesting, I’m sure. Maybe this stuff is really working after all. I also take about 4000 units of vitamin D, as well.


          1. great thanks. i will have to get some. i hear NOW is a great brand. right now, i’m taking probiotics, l-glutamine, 10,000 iu D, and am on 6mp. i don’t feel that the 6mp is doing anything at all so i’d like to add something else to replace it.

            that’s awesome to hear about your inflammation markers! mine aren’t very low obviously so i need to get them down.

    2. Thank you Maggie for the compliment ! I love jewelery ! I also use to make my own until my other passion zumba took over and I had no more time because I teach 7 x a week ! Thank you as well for the advice I will look into it for sure !!Especially the mucosa as the bleeding has stopped well most of the bleeding has stopped I am on my way to recovery I just have to keep my faith ! Wishing you all the best !! xxx:) Mylene

  4. Hi Mylene,
    I am also a fellow Montrealer and UCer(since 1975) I have been on every drug possible since the beginning. Asacol is a relatively older drug (1990’s), came into use after Salozyphryin (sp?). I was also on the clinical trial for Remicade for UC (in Montreal) and developed drug induced Lupus; most recently took Humira and developed MS like symptoms. I dont know what other protocol your Dr is recommending but if a diet works for you STAY ON IT! Stay away from the drugs. Fortunatley I am in remission right now but have no other options if a flare begins again (with my severity of the disease) but to have surgery. Only liquid diets work for me. I dont know if you experience this but I find that the GI’s are not really listening to us. I recently discovered hot yoga along with my 2 classes of Zoomba (love Zoomba) and that exercise – when I am not running to the bathroom – really helps. Good luck to you!

  5. Hi Kara !

    Thank you so much for your kind words and prayer I appreciate it so much !! Where is the link about Dr Oz I know him well and like what he has to say ! If its the link where I clicked your name that seems to be another Dr. which I also saw the report as I follow everything that goes on scd lifestyle. Very interesting ! Soo much info out there though it gets confusing ! Well have a great day Kara and thanks again xxxx

  6. Hi Mylene,

    You are absolutely right about Remicade and Humira being in the same families and I would seriously question trying humira after remicade. However, it’s really hard to tell on remicade if its working until 1 or 2 infusions or maybe even more (very odd that someone would give up after just one infusion unless you developed antibodies!) I’ve been on remicade for over 8 years and it took a whole year to get off prednisone, 5 years to stop methotrexate as a secondary drug but I’m doing fantastic on it. I’d recommended seeing a new GI and giving remicade a real shot (no pun intended). 8 years and no side affects, I’d personally take that over surgery any day.

    Back to the Remicade and Humira. My doctors always told me that if remicade stopped working that I can’t go on to Humira or any other copy-cat drug because they’re too similar. That makes me question your doctor. I started at a Children’s Hospital and am now at a leading research hospital/university (meaning they’re always keeping up to date with new trends etc.). I don’t know how things work about switching Doctors in Canada but try and find a new GI and one with a clinical interest in IBD, and one that’s connected with a research institute.

    And keep with the diet! My doctors are big on working out the diet that works for you (they’re always offering a nutritionist… but after 10 years, I already know what works for me so I don’t bother).

    Hope that helps! Good Luck! YOu’ll make it through!


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