Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Remission is Possible, Even After 17 Years

Meet Joe:

I have lived with Ulcerative Colitis for almost 18 years now, and I the past two months have been the most positively interesting part of my journey.

Some more about me:

I’m from New England, but I hate the snow. However, I would hate to leave!

Current Colitis Symptoms:

None

Remission after Many Years of Active Colitis

As a teenager I showed symptoms of colitis, originally my doctor said we would “wait it out” and see what happens. Yet to be diagnosed and feeling lousy, I told my doctor I’ve waited long enough, so he sent me to a pediatric gastroenterologist. Finally diagnosed, I was put on prednisone (moon face and even more acne in high school, was awesome). Once I reached a good point, I then was put on Sulfasalazine, and figured I would be medicated for the rest of my life.

As I got older and switched a pediatric to a regular gastro, I was still on Sulfer and got up to eight pills a day. At this point the doctor had me try Lialda. Now my colitis symptoms seemed to vary from moderate to bad to a “flare up”. I came to accept the moderate colitis symptoms, like minimal cramping and loose bowels as “normal” for me and I didn’t expect to live any other way.

After my most recent flare, I was once again put on prednisone. I asked the doctor if we could try something different, so we prepared to change over to Humira once I was done with the prednisone. He also said to stop taking the Lialda while on the prednisone, something I had never been told when I had previous flare ups.

As a result of trying to switch to new medication, I needed to get blood drawn. I had been through having blood taken before, but this time was different. This time, I passed out. They determined I was anemic, and put me on an iron supplement. I started feeling better. I noticed that my typical day with moderate colitis symptoms was turning into a day without any. I weaned myself off the of the prednisone like many times before, and was left taking one pill a day, the iron supplement.

I was on a cocktail of colitis medications for the past 17 years and the past two months without any have been the best two months in my battle with this disease.
I knew I needed to write this for a few reasons:
UC’ers need to know that even after 17 years battling, it is possible to find remission.

Doctors may not always have the right solution for you, when I told my doctor about dropping the Lialda and only taking iron, he said that some medications side effects can mimic the symptoms of colitis. Why you would put a colitis patient on a medication that has that result, I do not know.
What I do know is that I am happy and confident and feel as though I am starting my life over.
Happy 2013 everyone!

written by Joe

submitted in the colitis venting area




remission

45 Responses to Remission is Possible, Even After 17 Years

  1. MikeL January 17, 2013 at 1:45 pm #

    Thanks for sharing! Always good hearing positive outcomes.

    And yes – just an hour ago I was thinking “why the **** do so many UC medications have UC as a possible side effect? The very disease they’re supposed to cure…”

    Similar happened to me – I was taking Asacol and my doctors couldn’t understand why I didn’t get any better. Turns out Asacol was mimicking the symptoms and made me worse. Stopped taking it and guess what, I got better. I’ve been able to confirm this later too – it’s the Mesalazine in there that does nasty stuff to my colon. I would probably be better of taking rat poison.

    Anyhow, thanks for your post and keep up that good spirit of yours!

    • bev January 17, 2013 at 6:09 pm #

      Aha! Another person this happened to…MikeL. I’ll bet there are alot of us that have suffered this side effect and are told that it’s the UC, not the med…

      Isn’t this stupid? Mesalamine definitely made my colon angry. The asacol AND the enemas both…I wish I’d put two and two together sooner than 15 years:)

  2. bev January 17, 2013 at 3:17 pm #

    What a fabulous post Joe!

    At last, you have put into words exactly what has happened to me! I have had UC for 15 years, and never really had true remission either. I had a few periods of time over those 15 years where things weren’t so bad, but I was never really better. I was on asacol, in varying dosages almost the entire time, and just over a year ago, was put on mezavant (the Canadian name for lialda), which basically is asacol, just less pills. Well, after a few days on this high dose of asacol, my UC symtoms were so bad, I could barely funtion. It was almost like I was allergic to the medication. Terribly loose, going to the bathroom all day long, and way more cramping and bleeding.

    I decided to do a bit of research on my own, only to learn that a reaction to some UC meds, may indeed mimic, or even exacerbate UC symptoms! I don’t believe I would have discovered this, had I not been switched to liala from the asacol. For some strange reason, even though they are the very same drug, the lialda sent my UC into complete overdrive…and it only took one day on it to notice that!

    Anyway. long story long…I went off all of the meds…the only thing I take now is a probiotic, L-glutamine, vitamin D and astaxanthin. I have NO symptoms at all! I went from having the worst bout of my UC ever, to remission, simply by dropping the meds I had been on for almost 15 years!

    I’m SO glad the doctor switched me over to lialda…lol…or I’d still be on that useless maintenance dose of asacol…which did nothing but make me feel even worse all those years and cost me nothing but money…

    I hear you Joe!

    • Tracy January 17, 2013 at 7:00 pm #

      Hi bev, I’m really interested in what your taking and would like to try it myself. I have a question about the l-glutamine. The research I have done seems iffy as to whether it gets to the colon before it gets absorbed by the small intestine. Could u tell me what kind you take and where you get it from? Any info would be great!!!

      • bev January 17, 2013 at 10:55 pm #

        HI Tracy…

        I get fermented L-glutamine from my local health/supplement store. It’s just fermented unflavored L-glutamine (I mix it into a bit of juice every day cause it doesn’t taste too good on it’s own).

        It is made by North Coast Naturals. I don’t think the brand really matters. It is essentially all the same, I think, in that it ‘repairs’ the inner workings of the body in so many ways.

        I don’t know the particulars about the absorption of it, but it has worked for me!

        Cheers
        :)

    • Chris from Massachusetts
      Christopher from Mass January 17, 2013 at 8:17 pm #

      I always love reading your posts Bev =) lots of insight.

      • bev January 17, 2013 at 10:55 pm #

        Thank you…that’s very nice of you Christopher:)

  3. joanna January 17, 2013 at 4:57 pm #

    hey joe. it’s great you are doing so well now. i also take iron, but not really sure if it does anything. at least it doesn’t hurt.

  4. Chris from Massachusetts
    Christopher from Mass January 17, 2013 at 8:24 pm #

    Hi Joe I am from New England to – Go Pats!!!!

    Thanks for your message. It is important to hear – especially to new comers to this disease like me. Thankfully I have been in remission as well – every moment not in a flare is such a relief! This is a very serious disease and the fact that you made it so long is really an inspiration.

    I have not taken any Iron supplements but I will keep it in mind – I just eat a lot of red meat!! yum yum! and Liver – not so yum! =)

    Good luck UC brother =)

  5. Joe January 17, 2013 at 11:23 pm #

    Thanks for the replies everyone! Despite the situation, it’s good to hear that I was not alone in my predicament with medication causing UC like symptoms.

  6. UC Family Boy
    uc family boy January 18, 2013 at 4:11 am #

    You know it is nice to hear stories like this.
    In a week where a famour celeb is having surgery for his UC, and I have heard a mother I know of also having surgery and another being diagnosed for colon cancer after years of suffering with Crohns and my sister woke this morning off to a training day for her new job and her Crohn is playing up and she is seeing blood again. And me? I have some excess mucus production, no blood no cramps just fighting off this little inflammation (might have to do with running out of probotics :S)

    • bev January 18, 2013 at 10:09 am #

      Hey uc family!

      So great to hear about you mostly ‘remission’…get some more of those probiotics asap!

      What famous person is having UC surgery? I’m usually up on celebrity stuff and I haven’t heard…

      Again, yey for you!! Don’t ever stop those probiotics. They rock!

      Bev
      :)

  7. Adam
    Adam January 18, 2013 at 5:50 am #

    Joe,

    You are the man! Congrats for finding a winning cocktail that works for you!!

    Cheers to you and wishing you an unbelievable new life in 2013 and beyond!!

    –Adam

  8. stephanie January 18, 2013 at 11:27 am #

    Wow, thought it was just me and was diagnosed in 2010 and still not in remission. I am so frustrated at this point and at the end of the medication chain. Not sure I want to go for the surgery yet so this information is insightful. Thank you for sharing.

    • bev January 18, 2013 at 12:05 pm #

      Stephanie, it’s SO common to get absolutely frustrated while being ‘treated’ for UC. When I was first diagnosed, the GI told me…no worries, there are drugs we can treat you with. HAH! I didn’t know anything at first, so I thought, great, this will all be okay. Not so. NONE of the drugs work long term, often one after another is tried and tried. It’s all bull****…

      Keep reading, researching, and educating yourself. We do tend to rely on doctors to treat us or cure us, but in reality, with this disease, you must find a natural way to do it YOURSELF. It’s hard work, but we HAVE to do it. It’s the ONLY way.

      Cheers

  9. Youness January 18, 2013 at 11:36 am #

    the celebrity is Darren Fletcher , Star of the Manchester United Football club .. he was forced to sit all last year because of his UC .. he was better this year , he was training normally , and elected , with the medical staff, as his physical state was better , to go through surgery to remove his colon and put that problem behind him once and for all .. so he will sit the rest of this year too and won’t be back till next season …
    it just shows how debilitating this desease can be .. he is a professional athlete in the prime of his career , with multi million dollar/ year contract , and THE BEST medical care one can possible get in the world .. yet he was completely shattered by this disease ..

    • bev January 18, 2013 at 12:17 pm #

      Aaaah…it’s a Man U player. I love soccer (football) and was totally unaware of Darren Fletcher even having UC.

      So, you can have surgery and STILL play your favorite sport!! You can still have it ALL!! Yey!!

      Fab:)

  10. Lane January 18, 2013 at 1:37 pm #

    Just to let everyone know, I followed Bev’s recommendations and take exactly what she takes. I take the probiotic she recommended as well as Prebiotin (which I mix with a morning drink) and also astaxanthin and the L-glutamine. I am now symptom free and do not take any medications. I went to see my GI doctor and he doesn’t want to see me for six months. It’s been about five months since I started this regimen and so far so good. At one time I did take Asacol but it wasn’t doing anything for me. I also take Vitamin D and a multivitamin in the morning. The only difference is that I take a pill form for the L-Glutamine. Thanks again Bev (I really appreciate your recommendations) I do think the natural route is the way to go as these medications do have side effects.

  11. bev January 18, 2013 at 1:48 pm #

    Oh Lane…how utterly wonderful to hear.

    Isn’t it unbelievable, to feel so good and normal, on jusat these few things?

    I still and will forever, take the probiotic, the L-glutamine, and the astaxanthin…along with some vitamin D. That Prebiotin that you take sounds marvelous as well. If I ever (and I don’t think that I will) backslide at all, I will add that to my regimen as well.

    Really, this just thrills me to no end. Why can’t everyone with UC respond to this the same way that we have?? Maybe they don’t take the probiotic first thing in the morning, on an empty stomach? Or, they don’t take teh astaxanthin with a fatty food? I think it matters when you take these things, and that it is consistent. It takes work to get remission. You have to do the work, right? Then, it isn’t so difficult after all!

    I am so so happy for you Lane. Welcome to my dream…REMISSION!!

    • Lane January 18, 2013 at 3:12 pm #

      Hi Bev,

      Yes, I do what you do. I take the probiotic pill the first thing in the morning and take it on an empty stomach. I take the other pills at the same time too. I do mix the Prebiotin in tea, cereal or hot chocolate and find it really helps me. You can go to the website for Prebiotin and there is also a lot of information about Ulcerative colitis. I really believe that as we age, the bacteria changes in our gut and we need probiotics. I have normal BM’s now and no blood. I eat anything I want and I even drink coffee. I eat a lot of fruits and vegetables but I may have mentioned this to you…I do not eat meat or chicken. I consider myself to be a vegetarian but I do drink lactaid milk and use this for a smoothie. I have a smoothie sometimes in the morning with fruit, i.e. blueberries (frozen organic only) or strawberries. I use a lot of the Gardein products, i.e. their fake chicken is good and also their fake beef. I am walking a lot so I’ve lost some weight which is good. Bev, again, thank you so much and I will keep you advised how things are going. Best wishes to you :)

      • bev January 18, 2013 at 3:39 pm #

        Lane…you can thank me…and I do appreciate it…but YOU did, and continue to do all of the work that was and is necessary to gaining and retaining remission. Don’t forget that.

        It’s all down to you, Lane.

        I’m just so happy that it worked for you, too!

        Bev
        :)

  12. Anita January 18, 2013 at 2:56 pm #

    Hey Bev,

    I’m very interesting in starting to take some of the things you take, that have helped with your remission. I too am in remission and have been since July 2012. I am still on salofalk granules (which is mesalazine), I take vit D and probiotics already, so just need to add the other two. What brand of probiotics do you use? And can you let me know, when and how you take each supplement, eg time of day/with or without food. Just out of curiosity how severe was your uc, does it affect your entire bowel? Thanks Bev, holdup hear from you.

    • bev January 18, 2013 at 3:37 pm #

      Hi Anita,

      The probiotic that I use is called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. I take one capsule daily, first thing in the morning with water. Then, I exercise, so I don’t eat for at least an hour. I think any probiotic with at least 50 billion strains would be the same, if you cannot get that particular one.

      About 11am, an hour before lunch, I drink the fermented L-glutamine powder, mixed in a bit of juice (for taste).

      While, or right after I eat lunch, I take 4000 units of vitamin D, and the 4mg astaxanthin capsule, because they are both better absorbed with fats.

      That’s it! The rest of the day is mine. No more pills to take!

      Good luck…this regimen has taken me into and kept me in remission! I hope it does the same for you. Keeps you in it, I mean!

      Cheers,
      Bev
      :)

  13. mark January 18, 2013 at 10:53 pm #

    I really have enjoyed reading these posts. Of course I feel like I am entering into the middle of a conversation and haven’t read Joe’s book and all but I have been suspicious of some of my medications. I was diagnosed about 9 months ago and nearly died from UC and the clinics treatment of it. After leaving hospital with a pile of pills I can function sometimes but have to be near a toilet. At any rate, I have been on remicade every 6 weeks, along with periodic prednisone and a series of vitamins and other supplements. I really haven’t gotten much better since starting all this. I just seem to be able to muttle along in my days with not much hope of a normal life. Of course I am still looking for a solution. It is interesting what you say about asocol (which is horribly expensive) On occasion I have forgotten my evening dose and woke up in the morning with no problems. In fact a few times I’d have to dare say that my bowel area may have felt slightly better. I have never dared miss two doses in a row but am tempted to try having this new knowledge. Today my remicade dose was doubled and I was put back on prednisone… I will look further into this and will venture to dial back on my asocol and see. Thanks for your posts all. And Bev, I’m interested in trying your concoction as well, although I want to be certain the effects I’d be getting was from your recipe, not because my dosage of remicade got doubled…

    • bev January 19, 2013 at 10:11 am #

      Hi Mark,

      Yes, that is the problem…when you are on a new medication, you can’t be sure what is working and what isn’t. However, doing what I do will in no way hurt anything that you are doing…and I think you will see great results regardless of the horrible expensive remicade infusions. I have to wonder why time after time, doctor after doctor, keep putting patient after patient, through this gamut of useless and dangerous drugs. I think it’s a money thing. Remicade and its’ cousin meds are ridiculously expensive, after all. I’ll just bet that doctors light right up when another one of us is diagnosed with UC. Money money money…right? Colonoscopies, doctors’ visits, medication from which they get a kickback. UC is a freakig goldmine! ‘They’ want to keep us on these meds for as long as they can suck us into thinking taht they ‘may’ work…hah!

      Think about it…alot of us have been there done that. We have to take care of ourselves!

      Cheers, and all the very best
      :)

  14. sunny cape January 19, 2013 at 5:21 am #

    Firstly Joe, thanks so much for your story. It is wonderful that you are in remission! I can relate as I was put on Pentasa (like Asacol). It was a clinical trial to see the use of Pentasa in high doses. I became very ill; my UC got really bad and I lost tons of weight, eventually ending up in hospital. I tried Pentasa in the normal dose and immediately felt the symptoms again. Funnily enough, when I was first diagnosed I was put on Asacol suppositories and managed to go into remission for a year or so at a time – maybe the drug wasn’t going into my system so strongly as it was a suppository? Who knows – eventually the suppositories stopped working for me and then came the big guns…which are not great for quality of life but better than being in a flare, so it’s great to hear about people who are in remission without all these poisons.

    Bev, thanks for your reply to my other post. After reading what you have written here I just would like to know: What does the vit D do? And what is astaxanthin? I’m going to go shopping soon!

    xBevL (sunny cape)

    • bev January 20, 2013 at 10:54 am #

      Hi sunny cape!

      Vitamin D is a natural anti inflammatory, as is astaxanthin. That’s all they are for. UC is apparnelt an inflammation type condition, so I’m sure that the two really help.

      Astaxanthin is a capsule that is basically a seaweed or algae derivitive that has been touted as something that everyone should take! You can google a youtube Dr Oz excerpt about it. Some other doctor was on one of his shows talking abou how great it is. Check it out! Buy it definitely when you go shopping. You get three months worth (90 capsules 4mg each) for less than $30…at least here in Canada. You can also apparently buy a 12mg capsule, but I never seemed to need that strength.

      Cheers:)

  15. sunny cape January 20, 2013 at 11:04 am #

    Thanks so much, Bev. I’ll go shopping tomorrow! Been doing the 3 tablespoons olive oil for 2 days now – it’s not too bad!
    Keep well!
    x Bev L

    • bev January 20, 2013 at 12:26 pm #

      Sounds good!

      Please let us know how things go. The more people that manage and threat their UC themselves, the more others will try ir for themselves…and believe that they CAN do it as well!

      Bev
      :)

  16. bev January 20, 2013 at 12:27 pm #

    Oops! I meant TREAT their UC…not THREAT…LOL!

  17. trish January 22, 2013 at 9:31 pm #

    This is a great website. Thanks for everyone’s input. I am currently hospitalized for a severe uc flare. It turns out the asacol HD and the mesalamine rectal enemas were causing me to have a worse flare than just letting it run it’s course. I should have tried probiotics a long time ago! Does anyone know if lialda is supposed to be ok if asacol causes adverse effects? I asked my doc , and he said they seem to enter your system differently. One may exacerbate a flare, while one may help induce remission. Does anyone have experience with this? Thanks for your comments and help!

    • bev January 24, 2013 at 7:31 am #

      Wow, trish, I don’t know if asacol and lialda enter your system differently or not, but they are the very same drug!

      When I tried lialda (mezavant in Canada), so that I could take less pills than the asacol…I got the worst reaction ever! It was almost immediate, too, as soon as the drug got into my system…about an hour later. Explosive loose bms, tons of blood, severe nausea, raging headache. The asacol had been making me sick too, but I wasn’t aware of it at the time. Not until I stopped taking everything did I realize how counter productive mesalamine was for me.

  18. Nikki
    Nikki February 17, 2013 at 5:14 pm #

    Hey Guys,

    I had a question about remission. Ive got diagnosed a little over a year ago. I have had an up and down year dealing with pain, always upping my steroid use it feels like I have not been able to get off of them since I was diagnosed. 2 weeks ago I was back in the hosp. dealing with a bad flare up, they pumped me with more steroids and morphine. When they did a CAT scan on my stomach, the results came back really good…..It didnt make any sense to me. Last year the docs told me that my colon looked like someone who was 90 years old… it was in really bad shape. And now they said that it looks “normal”…. I never thought I would hear the doc say those words to me again “normal” So, now im thinking , could I be in remission? I have no idea… one can only hope!

    • Chris from Massachusetts February 18, 2013 at 7:37 am #

      Hey Nikki – I am not sure about that. The way I think about remission is this – if there is no blood in my stool than I am in remission. If I notice blood than my colitis is flaring.

  19. Lane February 18, 2013 at 8:06 am #

    Hi everyone,

    It’s been 6 months for me that I’m symptom free from UC. I listened to Bev’s suggestions and I decided to go off Lialda and the enemas and try the natural route. Well,it has worked for me and I am now in remission. No bloody stools, no running to the bathroom and best of all no medicines anymore for me. I take a multi-vitamin, 2 vitamin D pills, 1 astaxanthin, 1 L-Glutamine pill, 1 fish oil pill and now 1 Co-Q10. I follow this regimen everyday and it is helping me. I think you have to find out what works because everyone is different. I feel a lot better and a plus is that my cholesterol has gone down too. Even my platelet count which was on the high side has gone down. I do believe this was all due to the UC.

    • bev February 18, 2013 at 12:35 pm #

      Lane…what great great news!!! Marvelous!!

      You are still taking a probiotic as well, correct?

      Isn’t is fantastic to feel normal and not have meds running through your body? Such peace :) of mind!

      Again, I could not be happier for you my friend. That’s the best!

      Bev
      :)

  20. Lane February 19, 2013 at 6:12 am #

    Yes, Bev…still going strong…no problems and still taking the RenewLife probiotic you recommended. I also take the Prebiotin and love it! Yes, I am still following your regimen and saw instant results. I have an appointment with my Primary Care doctor in March and want to see what she says. She recommended a good probiotic and I decided to try the one you recommended. I take the Prebiotin just for added protection and so far so good! Again, a BIG THANK YOU! You are the best, really Bev :) Take care and enjoy!!!!

    • bev February 19, 2013 at 8:11 am #

      There really are no words to express my joy for you and anyone else that this works for.

      Sweet!!

      :)

      • Susan March 18, 2013 at 11:27 am #

        Hi Bev,

        Can you tell me where you buy your probiotics and vitamins?

        Thank you!

  21. Wendy
    Wendy May 15, 2013 at 8:57 am #

    I didn’t read all the posts, just the first five or so. I was struck by how similar your story is to my experience with drugs. At first I listened to the doctors and when I stopped listening to them (I still value their opinion, but they just don’t seem to know what is right for me) I went off drugs and took vitamins and supplements and I am far far better off. I was only o Asacol and mesalamine (probably spelled incorrectly) for a year and I felt so horrible and I found out after a while that I was allergic to those drugs and all drugs in that family. I stopped taking them before I found out because I felt worse taking the drugs than suffering with UC. You know there’s a problem when that happens!

    Glad you found something that worked for you!

  22. salsaflamenca April 24, 2016 at 10:36 am #

    Hello all, hope this message fins you in good health, I really have to try Astaxanthin as Remicade, prednisone, mezavant and suppositories arent helping. I am also doing a strict diet.
    Anyways, I have my bottle of Astaxanthin with me, how many capsules a day should I take? Thanks for your kind advices

    • Bev April 24, 2016 at 11:13 am #

      Hi,

      You can take one or two capsules, depending on what works. Try one at first. per day, and if you are seeing no improvement, then try two per day

      I used to take it for inflammation, but I now take curcumin.

      Either one works for me. I hope they work for you as well.

  23. Salsaflamenca April 24, 2016 at 11:46 am #

    Thank you Bev, I am gonna take one per day and a see what’s up.
    I love reading your posts! They give so much hope!
    I’ll keep you posted!

    Oh before I forget do you take them whit food?

  24. Bev April 24, 2016 at 12:06 pm #

    If I am not mistaken, they are better absorbed with some fat (especially healthy fats like avocado or olive oil), so I used to take mine with lunch.

    Cheers, and thank you!

  25. salsaflamenca April 25, 2016 at 4:57 am #

    Thanks Bev! Ill give it a try, I guess it takes a while before seeing results. And it also looks like that Astaxanthin doesnt really have side-effects. I am also taking plenty of other supplements, I am really trying my best to avoid total colectomy and I am sure it will work!
    Ill follow up in a while! Take care

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