Ulcerative Colitis Tips


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Bride on Steroids

Jessica on lakeIntroduction:

I was diagnosed almost 25 years ago (at the age of 9) with ulcerative colitis. For the majority of those years, I was symptom free, able to eat what I wanted, and had an active lifestyle.

Some more about me:

I love the outdoors and love to run. I teach elementary students and love what I do.

Symptoms I’m Dealing With:

I have currently been in the worse flare of my life! For 3 months, I have been unable to calm my flare, resulting in lack of energy, weight loss, bleeding, etc.

Bride on Steroids

Although I’ve had colitis most of my 34 years (diagnosed at age 9), I feel like a “new” patient in many regards. I always felt like such a lucky colitis patient. After my initial diagnosis, my treatment was effective and I lived my live without any restrictions. In fact, I rarely told anyone about having colitis due to its complete lack of impact on my life. I truly had no idea how lucky I really was until I had a flare in the fall of 2011.

After a few weeks of a bad flare and thinking something was horribly wrong, after an endoscopy, just “mild to moderate” active colitis was found. It turns out the Asacol I was taking was making me quite sick. As soon as I discontinued it, all better! I was fine until January 2013. This flare has been the worst and longest-lasting. I was taking Lialda, but again, it seemed this medication was now also making me sicker. Usually a quick round of enemas would cure any issues I had, but not this time. UC has now taken hold of my life.

I miss my old life of being able to eat what I wanted and more importantly, do what I wanted. I miss running most of all and just having the general energy to complete everyday tasks. I cannot believe how quickly my life has changed. I am getting married this summer and instead of this being the happiest time of my life, it’s been one of the most challenging. Some days I feel so bad for myself and can’t understand why now? and why me, after all of those year of great health? My fiance has been wonderfully supportive, but still, I worry about the toll this may take on our relationship. We are an active, outdoorsy couple, and I have pretty much had to stay in mostly, which has been hard. I have just started taking prednisone and have been trying to follow the SCD diet. I’ve noticed a definite connection between what I eat and how I feel, but think after 3 months, my body needs a break, which is why I finally started the prednisone. I am very concerned about possible side effects, especially with my upcoming wedding. I am wondering how long it will take the side effects to go away once off the prednisone?

Medications:

I am taking Uceris, which I like so far (it is Entocort for UC…releases in colon).
I just started taking prednisone and am not happy about it! I am very concerned about side effects and want to taper off as soon as possible.
For years I was on Azsulfadine, then Asacol, then Lialda, and at times Rowasa enemas. I believe I am now allergic to all ASA meds. My body has a horrible reaction and increase in symptoms.
I have ordered the VSL Probiotic, but haven’t taken it consistently.
My doctor wants me to eventually take Imuran, but I would rather be off all meds and try to control symptoms with diet.

written by Jessica

submitted in the colitis venting area




41 Responses to Bride on Steroids

  1. Caroline
    Caroline April 12, 2013 at 8:36 am #

    Hi Jessica,
    Wow, bless your heart! I can’t imagine going through a bad flare while I was preparing to get married. I hope things come under control quickly so you can enjoy this time – so glad you have a supportive fiance! I was just diagnosed in January and my hubby has been a godsend. I understand your fears – I am much better than I was at my worst, but no matter how much he reassured me that he didn’t mind me not being able to do stuff, I still worried. It can be stressful for sure.

    I finished a 2 month Prednisone taper about 3 weeks ago, and for the most part feel like my side effects have totally subsided. I was worried about weight gain and moon face, but thankfully those were not an issue for me. I have been following the Paleo Autoimmune protocol and it’s been great overall – but I believe that moderating my sugars with that helped me avoid some of the prednisone effects. I did have some numbness in my legs and muscle wasting, but I am happy to report that I’m much better just a few weeks after stopping.

    I truly believe that diet and gut health are the keys to managing this disease for a lot of people – hang in there! You WILL get better, for sure. Best wishes for a HAPPY AND STRESS FREE engagement and wedding. :)

    • Jessica
      Jessica April 12, 2013 at 10:17 pm #

      Hi Caroline,
      Thanks for your response! I’m glad to hear any prednisone side effects faded after a few weeks. I’ve been on them for almost 2 weeks and luckily haven’t seen any side effects yet. I am most worried about weight gain too, but haven’t had an increased appetite at all. My symptoms have greatly improved overall, which I’m so grateful for. Hopefully, the taper down will not impact the success. I hope I can get off of them a month before the wedding.

      That’s good to hear you have such a supportive partner as well! It really makes such a difference. It sounds like you have it under control too, which is great! I will have to look up the Paleo Autoimmune Protocol. The diet has been the hardest change for me. Although, it’s definitely helped get me to my wedding weight (trying to see the silver linings! ha).

      Thank you for your well wishes! Wishing you continued health as well!
      Jessica

      • Caroline
        Caroline April 13, 2013 at 4:38 am #

        I hope you continue to have no side effects – some people don’t!

        The Paleo Autoimmune Protocol is basically Paleo (no dairy, no processed food or grains of any kind, no sugar) minus eggs, nuts and seeds, and nightshades (tomatoes, eggplant, potatoes, peppers). I also incorporated a lot of SCD foods like bone broths and fermented veggies that are great for gut healing. I went into it knowing that nightshades were a huge issue, so those was easy to give up, but eggs and nuts I struggled with. I took out eggs for a few weeks and then added them back in with no issue, but refused to give up almond butter. On my sickest days that was the only thing I could get down, so I really didn’t think it was an issue for me. I finally decided to try living without it for a few days, and the results told me that yes, I needed to not have it for awhile.

        As my gut heals, I can reintroduce things and see how it goes – but there are some things I really don’t think I will ever be able to eat again and over time I have gotten comfortable with that. Dairy and gluten are never going to be my friends, and I’ve got some serious doubts about tomatoes and sweet potatoes (that was a surprise! so sad!). It is such a difficult change to make but if you get good results it becomes easier to stick to! I have had several “poor me” days where I am so frustrated with being limited, or feel conspicuous in social situations where I am quizzing the waiter, or can’t share a dessert with the table, and lord do I miss my wine. But more and more I am finding some great recipes and food that I love – it’s starting to feel more like a way of life for me. The SCD lifestyle site is a good resource, and if you are interested in Paleo AI protocol The Paleo Mom site has been a lifesaver for me. It also walks you through the how and why of it, like why eggs and nightshades are eliminated.

        Sorry for the book – this is a subject that I have gotten very passionate about. If you can find what works for you and doesn’t, no matter what “diet” its a part of, eating becomes much less stressful!

        • Jessica
          Jessica April 14, 2013 at 6:27 pm #

          Hi Caroline,
          Thank you for explaining the Paleo diet! I’m not sure I could give up eggs either! I already don’t eat red meat and feel I need as much protein as possible. I need to look into fermented veggies. The cooked veggies I’m eating now are not often digested, so I feel like I’m missing a ton of nutrients.

          I’m with you on the dairy and gluten. I’m hoping it will get easier with time. Thank you for the Paleo resources!

          Jessica

          • Caroline
            Caroline April 15, 2013 at 6:05 am #

            Fermented veggies are so good and I have found them much easier to digest – I really like the Bubbie’s brand. It’s naturally fermented as opposed to just being soaked in vinegar. I want to try some kimchi to mix things up a bit but haven’t found any without red peppers yet. One day! :)

            I had a hard time digesting veggies as well but did well with zucchini and carrots if they were cooked for a long time. It’s so frustrating when you know you aren’t absorbing nutrition, despite eating well. It took a long time for me to feel like I was absorbing anything that I was eating – a few weeks ago I took a multivitamin and 20 minutes later was bouncing off the walls. I was so excited that it actually did something – haha! Since then I have been gaining weight like crazy – never thought I would be so excited about that, but I no longer look like the Cryptkeeper. :)

  2. Holly in Virginia
    Holly April 12, 2013 at 10:41 am #

    Hi Jessica,

    I think the stress of wedding planning was partly what brought on my UC. I got married in October and had no idea why I was bleeding on and off. I had been trying to figure out some digestive issues for a year and a half at that point. A colonoscopy and sigmoidoscopy showed nothing so I figured it must be the internal hemorrhoids and just kept going. I got through it all, enjoyed my honeymoon in spite of continued bleeding. Came home to even more stressors. Finally got diagnosed in January, after yet another colonoscopy, with severe pancolitis.

    I have since been on prednisone and colozal. Honestly I’m scared to go off the prednisone. The side affects have been few and far between and it stops the bleeding and mucus entirely. I went off for 2 weeks and it all started again. So if it works I wouldn’t worry too much about it for now. In the long run hopefully we can both figure something else out.

    At the moment I am also trying Bev’s treatment with probiotics and l-glutamine supplements. I think it may be helping but we shall see next week when the prednisone stops again.

    Good luck with the wedding and try not to stress too much (impossible I know). At least try to find ways to relax and take a break from it.

    • Jessica
      Jessica April 12, 2013 at 10:22 pm #

      Hi Holly,
      Congrats on your recent wedding! I’m sorry to hear you were recently diagnosed with colitis. It really is no fun! Yes, stress is certainly a factor. Luckily, my wedding planning has been relatively stress-free, but I know that a stressful work situation this fall is what brought on my flare. Of course when stressed, I stopped working out as much and ate more sugar, which I’m sure wasn’t helpful. I have learned my lesson!

      I share your concerns about going off the prednisone. It definitely has helped with the frequency and urgency with me and I worry about what tapering off will do, but at the same time, I do not want to be on prednisone long term. I just started taking probiotics and the L-glutamine too, which could be why I’m doing better this week.

      I’d love to hear how your taper off prednisone goes and if you can maintain with the supplements. I am hoping to do the exact same thing in a few weeks.

      Thanks for your encouragement!
      Jessica

  3. bev April 12, 2013 at 2:54 pm #

    HI Jessica,

    DO take the probiotic…religiously!!! I too ended up ‘allergic’ to asacol, stopped taking it, and am now on NO MEDS at all anymore. I was recommended steroids by the doctor, but I said no way. Just my choice. Steroids do not agree with me, either.

    I now take one ULTIMATE FLORA CRITICAL CARE by RENEWLIFE probiotic every day and North Coast Naturals fermented L-glutamine powder every day…and I will now, forever. I am in complete remission for the first time in 14 years! NO MEDS!!

    It’s important to take the probiotic on an empty stomach…no eating two hours before and half an hour after. I take mine upon waking at 6am, with water, and then don’t eat for at least half an hour afterward. Also, the L-glutamine works best on an empty stomach, so I take it at about 10:30am.

    Things will get better, but I think you have to find out what works for you NATURALLY…because we are all so different, and what works for one, may not necessarily work for another. Others on this site have tried what has ‘cured’ me, and it has worked. Just a thought.

    Bev
    :)

    • Jessica
      Jessica April 12, 2013 at 10:28 pm #

      Hi Bev,
      I would love to follow in your footsteps with the meds! I have started taking my probiotic daily, but just take one, not the 2-8 recommended on the bottle. I just worry about overwhelming my system. Maybe I will start taking 2 a day. I didn’t know about taking it on an empty stomach. That may make a difference. So many variables to think about!

      Thank you for your advice!
      Jessica

      • bev April 13, 2013 at 8:39 am #

        Anytime!

        I only wish for all of us to be healed NATURALLY. I truly believe that DRUGS are NOT the way to go with UC.

        Our colons have been damaged by being stripped of the good bacteria somewhere down the line, or cumulatively in our life times. We have to replace that. Sometimes, it takes awhile, after all, it may not have become destroyed overnight. I think you can get UC from years of antibiotic use, or other medication use (like aspirin, advil, accutane, etc), or…even a very bad bout of food poisoning or Norwalk virus, or something like that. If there are many ways of getting UC, some over the long term, and some quite literally ‘overnight”, then there have to be, most likely, many different ways of treating it naturally, with results either taking many weeks to months, or overnight, in some cases!!

        Natural is the ONLY way to go. I promise all of you!! More medications will only hurt our bodies, in some other way. Food for thought.

        Bev

        • Jessica
          Jessica April 14, 2013 at 6:33 pm #

          Hi Bev,
          I completely agree! I’m hoping to get off of meds soon. Did you just stop taking yours or were you in remission and able to sustain it with the natural remedies?

          I had my appendix out 9 months before I was diagnosed with UC. My mom always suspected the two were related and I’m sure the antibiotics and whatever else I had to take for that surgery were contributing factors.

          I would love be med free…the sooner the better!

          • bev April 14, 2013 at 9:55 pm #

            I was in a terrible flare…the worst one that I ever had…then my doc prescribed the highest dose of asacol, since I would not agree to pred or any other drugs…well, I got even sicker!! The asacol in that dosage must have made me have a terrible reaction, and it was like, overnight. I started the high dose, and I was sicker than a dog…gagging all day, going to the bathroom every 10 minutes, tons of blood. I knew right away that it was the increased dose of the asacol.

            I bought the probiotic, started it the next day, and within three days was feeling a lot better! I know! Fast, huh? I stopped the asacol a few days later, but after about a month was still bleeding, although ALL of the other symptoms (urgency, cramping, etc) were gone. Then, the clerk at the supplement store who had recommended the probiotic to me, said to try the L-glutamine for the bleeding. Boy, was she right! In two days, that was gone too. I completely trust these people more than doctors now. Sad, but true.

            This is freaky, but I had my appendix out just before I got UC too! I sort of had in the back of my mind that it had something to do with it, but my long tern use of antibiotics as a young child with bad tonsils, and then my use of Accutane four times back in the 1990s sort of took precedent over the appendix removal. I think there could definitely be a correlation between having your appendix out and UC. Perhaps THAT is what our appendix is for…everyone says it’s useless…maybe not, for some of us, huh?

            Anyway, after the whole asacol debacle, that is why I will not take meds ever again. No matter what. I will go for colon removal if need be. I mean that, for myself, anyway. My body just does not tolerate meds…not even aspirin or Tylenol. I take a Tylenol, and I feel nauseated. I’m pathetic when it comes to drugs! I could have never been a junkie, that’s for sure…lol

            Bev

  4. Caroline
    Caroline April 12, 2013 at 3:38 pm #

    I second what Bev says – there are many natural things to try but you have to find what works for you! I have had great success with the L-Glutamine, probiotic, and astaxanthin as well, in conjunction with the diet and Apriso. I have tried several probiotics and my doctor gave me some VSL #3 samples this week – I can already tell that this is the one for me. Now I can quit buying 3 different ones a month and driving my hubby crazy. When it stops working I will change it up – but for now it’s great. Just like with the prednisone – it’s there when you need it and you don’t have to take it forever.

    Good luck and please keep us posted!

  5. Jessica
    Jessica April 12, 2013 at 10:32 pm #

    I will have to look up Astaxanthin. I’m taking the VSL #3 too. How many do you take a day?

    Thank you for your help!

    • Caroline
      Caroline April 13, 2013 at 4:21 am #

      I take 3 of the astaxanthin (4 mg each) – it’s a natural anti-inflammatory. Bev turned me onto it – she always has great tricks! The VSL #3 I just started this week – my GI doc said I could work up to 2 sachets a day, but I think one might be fine. I have always noticed a moderate improvement with other probiotics but would hear about the amazing results others had and did not feel like I was having that for myself! The first day I took it, by mid-day the mucus I have gotten used to was cut in half. I also was really tired and foggy, which I believe means die-off is occurring. I would say that I have been about 80% healed and honestly have been happy with that – so I am ecstatic that this seems to be taking me to the next level. My doctor said you can take several packets a day during a flare, so if you are actively flaring I would say scale up the dosage and see what happens. That is a whole lot of good bacteria!

      • Jessica
        Jessica April 14, 2013 at 6:37 pm #

        I will have to try the astaxanthin. I took 2 VSL #3’s yesterday and had a very bad day as far as frequency. There wasn’t an increase in blood, but I could not believe the increase in bathroom trips. I felt the same way you did…tired, foggy. Hopefully, that means the bad bacteria was leaving my body. I’m taking the capsules though, not the packets…I wonder if that makes a difference. I’m only taking 1 today. I’m so happy to hear that this is working for you! It gives me hope that it will work for me too.

    • bev April 13, 2013 at 8:33 am #

      I also have been also taking astaxanthin for the past year. I take one 4mg capsule per day. If you go on youtube, you will find a doc that thinks EVERYONE should take it. It is quite the powerful little anti inflammatory!!

      :)

  6. Kara
    Kara April 13, 2013 at 9:45 am #

    I’m at a similar stage in my disease with the next step being immuran. I have been on SCD for 8 years now and my current flare started in August 2012 (9 months ago) I am at a loss as to what I should do. I no longer am having DH, but a lot of pain and bleeding at the very end of my colon. Do you ever find that the probiotics bind you up and cause pain? Also, can you tell me more about VSL?

    • bev April 13, 2013 at 10:02 am #

      Hi Kara,

      It’s funny….the probiotic has never bound me up or hurt me in any way at all. I have read other peoples’ stories and I often wonder if it is even the probiotics that are causing the problems that some have, or think that they have, while taking them. I’ve been extremely fortunate with probiotics. They’ve only ever made things better for me.

      I don’t take VSL…so I can’t advise on it…but ULTIMATE FLORA CRITICAL CARE by RENEWLIFE has been wonderful for me!!

      Bev
      :)

    • Caroline
      Caroline April 13, 2013 at 11:40 am #

      Hi Kara,

      When I first started taking the probiotics in the middle of my flare, I did have some bloating that was uncomfortable. My doctor had warned me that may happen – basically, as the good bacteria kills off the “bad” bacteria, the “bad” bacteria releases a toxin. This can cause additional stomach upset, d, bloating, fatigue, brain fogginess, etcetera. I had to take it every other day and ease into it. The VSL is a very powerful one – each sachet has 450 billion bacteria in 8 different strains. I thought it might cause more upset due to the large number of bacteria, but it hasn’t been too hard on me – probably because I was already taking a high dosage of other kinds. VSL is made specifically for UC, pouchitis, and IBS and there have been some studies that show favorable results when it’s used consistently. I have heard you can buy it over the counter but my doctor had to write a script for it – I wish I had found it earlier. Bev has had great success with the one that she takes as well – different ones work for different people! That’s what makes this disease tough sometimes.

      A 9 month flare – wow. I am sorry to hear that – sending thoughts of healing and well wishing to you! Hang in there!

      • bev April 13, 2013 at 1:34 pm #

        Great info Caroline!

    • Jessica
      Jessica April 14, 2013 at 6:49 pm #

      Hi Kara,
      I’m so sorry to hear you are in a 9 mo. flare. Caroline did a great job explaining VSL. I have been taking it all week and have wondered if it was causing me some cramping. I took 2 yesterday, and did not have a good day…lots of bathroom trips and feeling crummy all day. I am wondering if the potency is too high. When I take it at night before bed it doesn’t seem to bother me as much. I’m going to give it a few more days before switching to a different probiotic. From what I’ve researched and read from people on this forum, probiotics are a huge help in the healing process.

      As far as SCD, Adam’s cookbook recommends a much more refined diet while in a flare, which even eliminates many of the SCD recipes. He said during a flare he goes down to: bananas, ground beef, chicken, eggs, cooked veggies. I have been doing this for a few weeks now and my symptoms have improved, although I am definitely not feeling satisfied for fully nourished on this. Oh, how I miss grains.

      Wishing you well!
      Jessica

  7. Ann April 13, 2013 at 2:53 pm #

    Hi Jessica, I don’t see it mentioned here. Have you tried high qualaity evoo? That’s what started to help me a lot shortly after started L Glutamine…no probiotics yet but I feel great. Follow Graham’s thread from Novebmer 2nd 2012. Lots of info there. The people on this site are fab…bev is the bomb…love her information and glad to see you are corresponding with her. Been on sterioids on and off…they are a drag for me and a lot of people…get off of them if you can but be sure to taper…not meds for me since September 2012. Congrats on your wedding… :)

    • Jessica
      Jessica April 14, 2013 at 6:53 pm #

      Hi Ann,
      I haven’t tried EVOO. I did see that some people mentioned it on this site. I will have to try that too. Yes, I have started the taper (down to 20 mg of Prednisone). I am worried what will happen when I further taper, as my symptoms initially improved at 40 and 30, but seem to have plateaued at 20. I want off of them as soon as possible though, but cannot go back to how severe I was flaring before that. That’s awesome that you are off of meds!

      Thanks re the wedding! :)

      Jessica

  8. Graham from England
    Graham lee April 14, 2013 at 2:30 am #

    Hi Jessica,

    EVOO is an easy but effective one to try, if your UC is not that aggressive it may well be enough to keep you med free. I would read through the tips though as the information progressed quite well after only a few months, (love the pic Ann).

    http://www.ihaveuc.com/olive-oil-is-helping-my-ulcerative-colitis/comment-page-1/#comments

    Stress….I have found it rewarding to work on prevention measures, doctors and even ourselves often focus on symptoms alone. I have been using a low dose Valerian herb tablet most nights recently and I am calmer during the day. A good nights sleep is also great for healing and optimising the immune system. There is information out there but research suggests it produces GABA which heals the colon, a 2 for 1!

    • bev April 14, 2013 at 7:24 am #

      Hi Graham!

      I am wondering…didn’t you have your colonoscopy? How did it turn out? Is everything looking better in there??

      Bev
      :)

    • Jessica
      Jessica April 14, 2013 at 7:16 pm #

      Hi Graham,
      Thanks for the suggestion! Wow, I read through many of the responses to your original post. Sounds like this works for many people! I’m not sure if I will be able to stomach it, but I will give it a try. I am willing to do anything to get out of this flare at this point. Do you have a favorite brand? I am fine paying extra to make it go down easier!

      I have been sleeping quite a bit lately and making a conscious effort to let go of stressful thoughts. I find visualizing a positive event (and me being healthy while there) very effective.

      Jessica

      • Graham from England
        Graham lee April 15, 2013 at 5:20 am #

        Hi Jessica,
        Most people tolerate the poor oils because they are more palletable, however, if you are using EVOO for your health then the stronger the better. It should taste fruity, not too oily with the often mentioned and crucial cough inducing throat burn once swallowed. Unfortunately, if you are in the US you may struggle to get good oil. Even the well regarded Californian oils are very irrigated and this reduces potency, though there should still be a benefit from any genuine oil. Look for an early harvest oil, if at all possible 2012 and it should pour a green liquid, yellow or gold suggest a fake or late harvest oil. You will have to “kiss a few frogs” to get the good stuff but don’t be put off as the rewards are there for most it seems.
        Good luck!

  9. Graham from England
    graham lee April 14, 2013 at 7:43 am #

    Hi Bev!
    No I still have that to look forward to! Still 90%, how about you?

  10. bev April 14, 2013 at 3:06 pm #

    I’m still 100%!! Thank you for asking. Sometimes, I can’t believe that I feel so well after 14 years of not…

    I’m so happy all is well with you. I don’t know why I thought that you had already had the probe.

    Anyway, I hope that it shows little to no UC!!

    Cheers my friend
    :)

    • Graham from England
      Graham lee April 15, 2013 at 5:26 am #

      Hi Bev,
      I’m glad all is well and that you are still helping everyone, thanks as always for the kind words and encouragement! X

  11. Ann April 15, 2013 at 7:18 am #

    Hi Jessica, I put a drop of apple cider vinegar in my evoo…it gives it a kick but I know what you mean about the taste of it but it is worth the results…I bought California Organic Mission EVOO from Whole Foods. Be sure to check the expiriation dates…sometimes the price gets reduced if it is about to expire. It doesn’t get better with age like wine…Bottoms Up! ;)

  12. Jessica
    Jessica April 17, 2013 at 3:38 pm #

    Thank you to all for sharing all of your great ideas! This site has been a wonderful resource as I’ve battled this flare! I went to the dr. Monday, and he was not happy with my continued weight loss and shared his opinion that the SCD diet doesn’t work. I had been following an even more restricted version of the diet, in attempt to get out of the flare faster, which I think after a few weeks, was just not giving me enough nutrients. Frustrating. I have a colonoscopy on Monday and am hoping to find out some answers as to why I’ve suddenly gotten so much worse with my disease after years of remission. For now, I’m still on prednisone and taking 1 Imodium/day, which of course are just masking the real issue. I have felt better the past 2 days eating a more balanced diet and definitely have more energy, but know it short-lived relief. Still, I will take it!

    • Caroline
      Caroline April 17, 2013 at 4:33 pm #

      So sorry to hear that you are continuing to have issues, but hopefully the colonoscopy will give some answers! Do whatever makes you feel good right now – you have to take care of yourself! I hope they get everything figured out quickly for you – please keep us posted.

  13. Ken April 19, 2013 at 12:13 pm #

    Jessica,

    I will vouch for supplementation working. I was taking Asacol, then Apriso during an 8 month flare with no relief. I am a runner too, and was about a month out from a half marathon, and was considering going to the doctor and getting on Pred so I would be able to run. Instead I started taking EVOO, L Glutamine, and a strong probiotic. Within a month, the flare was over, and I was running worry free.

    I eat what I want: dairy, meat, and unhealthy processed foods (not proud of that). It’s been 4 1/2 months now of “normal”, during which I raced 3 half marathons, and a 5 K with no pitstops. I believe the key is to start and maintain the supplementation. It didn’t make me better immediately. There were setbacks during the first few weeks, where I questioned the effectiveness of the program. Luckily I kept it up, and now there really aren’t bad days, UC wise. Each week got a little better. Last month I stopped the Apriso, so I’m drug free.

    Well, that’s my 2 cents. I hope you feel better and back running carefree soon.

    Ken

    • bev April 19, 2013 at 12:46 pm #

      Oh Ken, what a wonderful post!

      I’ve been so sad today with all of the things going on in Boston, and Texas. I needed some good news!

      We CAN heal….WITHOUT MEDS….It may take time. People might be bailing out too soon when they try these things. Everyone wants and expects immediate results. Like you said, the first couple months, I would bleed, or have that rumbling gas, and I would think…is this working?…but I kept on with that GOOD probiotic, and the fermented L-glutamine. Now, over a year later of feeling 100%…and I feel normal! I know I’ll always have a propensity to UC, I know it’s lurking inside of me…but I am eating ANYTHING I WANT (like you. sometimes I ain’t too proud of that, but I can’t stop because for 14 years everything that I ingested ‘hurt)and I feel GOOD for the first time in 14 years!!

      Thank you for the terrific news!! We all NEED to hear it!!

      Bev
      :)

    • Jessica
      Jessica April 19, 2013 at 6:10 pm #

      Hi Ken,
      Thanks for sharing your great story! It’s such good news to hear that you were able to go back to running so quickly! I’m still taking the VSL3 and the L-glutamine. I definitely think they’re helping (I have no more blood thank goodness!). I cannot even imagine an 8 mo. flare…it has been almost 4 for me of diarrhea and feeling weak.

      I cannot wait until I have the energy to run again. I miss it so much! Currently, my iron level is at a 4(!) so I don’t do much of anything. Hoping to get iron infusions soon to help with that and get back to doing some normal things. I’m signed up to run a half-marathon in a month (signed up in Dec) and have had to come to terms with the fact that I won’t be ready by then due to lack of training. Thank you for your story. It really gives me hope!

      Jessica

  14. lynne April 19, 2013 at 12:54 pm #

    Yes, Ken, thank you. I needed to hear your words, too. Your regimine sounds solid with the evoo, l-glut & probiotics. And you’re out of your flare! That’s very encouraging to me.

    Giving it time is also good advice, Bev. I know I tend to want fast results & get discouraged when it doesn’t happen that way. I am learning, tho, to keep pressing on & to give these methods time to work.

    lynne

    • bev April 19, 2013 at 1:07 pm #

      Good on you, Lynne!

      I know we all want instant results. That’s normal. Remember…even meds don’t work right away. Your body has to get used to them.

      Bev

  15. Jessica
    Jessica April 19, 2013 at 6:21 pm #

    Hi Lynne and Bev,
    Thanks for the reminders to be patient with things. It is so hard. I know everyone feels the same way at times! I feel like I’ve been so patient for these months and just want relief at this point. I can’t wait to get off the prednisone. I am now having the puffy face effect and am worried there are more side effects to come! I am going to insist on tapering off when I see my doctor on Monday. I wonder what my real symptoms are without the steroids. I’m worried it will go right back to what it was, with 15 bathroom visits a day w/blood. But hopefully the supplements are truly working and will continue to have a positive effect. I guess time will tell.

    Thanks for listening! :)
    Jessica

    • bev April 19, 2013 at 9:54 pm #

      Any time, Jessica, any time.

      It is totally HUMAN to want things to happen fast. It’s who we are!

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