Newly Diagnosed, Steroids Haven’t Helped and Looking For Input

Mark from Boston's colitis storyMeet Mark:

My name is Mark, I was diagnosed with UC just after I turned 30. Never had any stomach/digestion issues of any kind my entire life, and no one else in my family has shown symptoms of UC.

Some more about me:

I live in Boston, MA, have a beautiful and loving wife, a 2-yr old son, and we’re expecting baby #2 in just a few months. I have always been a very active and healthy guy. I rowed for 6 years in HS and college, then stayed in shape working out, running, hiking, walking my 2 dogs, etc. Once I got married and started working full time, the time for exercising obviously decreased a bit, but I’d say I have stayed in good shape for the most part.

My wife and I aren’t big drinkers per se, but we definitely enjoy a few casuals from time to time. Beers are my drink of choice, but I like most wines and I’ll do whiskey every once in a while as well. I probably didn’t have the best of diets from college and beyond, but I don’t really eat much junk food ever and I rarely drink soda.

Colitis Symptoms:

Currently dealing with bloody stool, mucus, not much cramping really, but other side effects and related issues to the general UC symptoms.

New to Colitis Steroids Haven’t Done Much

Turned 30 in June 2012. I’ve always been a little lactose intolerant, but never to the point where I would say no to eating ice cream or anything like that. After eating a big piece of ice cream cake for my bday (ok 2 huge pieces… back to back nights), I started having some problems the next day – gassy, diarrhea, etc. Never had any problems in the past whatsoever, so I thought this was just an upset stomach and it would pass. Symptoms kept persisting, blood, mucus, etc. Took about 3 months before I ended up getting to a specialist and had a colonoscopy done, but when I went, they diagnosed me with UC. It’s only affecting my lower left section of the colon, but I’d say my condition is at least moderate.

Been in this flare for about 6 months now. Right after diagnosis, my doc started me on Asacol. This settled me down a little bit, but didnt put me in remission. After about 3-4 weeks, we then started on another steroid enema. Again, helped a little, but no remission. Just over a month ago, I started on prednisone. Initially I saw more progress, and I’d say I was about 80% back to normal. Started on 40mg of Prednisone, so my doc thought we’d try 60 mg and hope the increase would bring me home. It didn’t, and I actually got a little worse with the change. We’re tapering down now, but I actually have lost about 10 lbs since starting the Pred, not to mention I feel like garbage. This seems to be a miracle drug for most, but not me… very frustrating.

Because my body hasn’t responded to the medications so far, I’ll be starting Humira in the next few days. Having read a lot of personal storied on this site and others, I am a firm believer that diet and stress are directly related to symptoms of UC, so I’ve already started changing what I eat, how much I eat, and all that. But following the SCD and other diets is obviously challenging, especially with kids, full time job, and just life in general.

I would prefer to avoid going the Humira/Remicade route, but I can’t continue on this flare. My hope is that the combination of Humira and diet adjustments will do the trick and get me out of the flare, but since I haven’t really responded well to steroids thus far, I’m a little concerned that this may not do the trick.

I have a ton of questions, but really my MAIN QUESTION for other UC’ers is:

If you are taking medication like Humira or Remicade, are you eating a normal diet, or are you limiting yourself to one of the restrictive diets (SCD, Paleo, etc)? My intention is to try and eliminate as much of the “bad stuff” as I can, but realistically I just don’t think I’ll be able to do the SCD 100%. At least right away. If the meds don’t put me in remission, I’ll go down the full SCD path to try and eliminate the surgery route.

In addition to diet changes, I have also started taking a number of supplements: Probiotics, B12, Fish oil. From what I’ve read, it sounds like there are a few others that have worked well for other people: Slippery Elm Bark Powder, VSL#3 probiotic, L-glutamine, LDN, to name a few. I feel like I’m already overloading my body with a ton of changes, so I’m reluctant to start taking more things, but perhaps these are worth a shot anyway?

This site has been immensely helpful already, and it’s been refreshing to read so many stories and experiences from everyone that are going through the same types of things. Thank you in advance for any input!!

Mark

Colitis Medications

Meds:

  • Asacol – 4800 mg (1600 mg 3x day)
  • Prednisone – 40 mg (20mg 2x day)

Supplements:

considering taking others:

written by Mark

submitted in the colitis venting area




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48 Responses to Newly Diagnosed, Steroids Haven’t Helped and Looking For Input

  1. Kyle
    Kyle January 25, 2013 at 8:57 am #

    Mark-

    I am currently on Remicade and my diet is pretty normal. I stay away from fried foods, caffeine, alcohol, too much sugar, dairy, and too much starch, but those were all things I had cut out of my diet pre-diagnosis. I was hesitant to start Remicade myself but it was something that my GI highly recommended because much like you nothing was bringing me out of the flare. I know Remicade works differently for everyone but it has been a blessing for my wife and I as we have no began the “new” normal of like with UC. I was in a flare for over 6 months as well, hospital stay, the works, and now I am back to work full time, working out again, and doing pretty much everything I was doing before I was diagnosed. I hope this helps man, I know the worry of going the pharmasudical route, but you gotta do what you feel is best for your health and the health of your family. Let me know if you have any questions.

    Blessings

    Kyle

    • Mark from Boston
      Mark January 25, 2013 at 1:38 pm #

      Thanks for the input Kyle, really appreciate it. Glad to hear that you’ve responded well to the Remicade. Hope your success continues!

  2. Artie January 25, 2013 at 9:20 am #

    HI Mark,

    Hang in there my friend! Thought I would share this with you. As far as drug therapy goes. In case you didn’t see this there is a new drug Vedolizumab on the horizon. It is showing great progress and is in last phase of trials. In fact, there are hundreds of trials going on right now with this new drug that’s how “good” it is. Uceris will also be out in March –
    http://www.medscape.com/viewarticle/777917

    Artie

  3. Gail January 25, 2013 at 9:26 am #

    Hi Mark,
    I hope you can get this flare under control and will start feeling better soon. I had never heard of Slippery Elm Bark until 2 days ago when I was in a health food store, speaking to the owner. He couldn’t say enough about Slippery Elm Bark, that it was the best for Crohn’s and colitis and also told me that the best thing to do when in a flare is to take marshmallow root with it. I did a little research and it looks like it is certainly worth trying. I also noticed that Dawn mentioned it yesterday under “Remission Stories Wanted” and also Peter as well under “UC’er with Moral Issues – Vegan”. Maybe you want to ask them directly about Slippery Elm Bark, in paticular. I would definitely try alternative options and diet change to avoid the nasty drugs, if possible. You may have read BC Bev’s comments about what she takes and I see you are already using probiotics, which is great. I firmly believe gluten-free is worth trying, and probably dairy-free, at first anyways. I used to think it was just fear-mongering about “Frankenfoods” but now I really question how our wheat, corn, soy, etc. has been genetically modified. I think our bodies just don’t recognize these things as friendly and so begin an immune response to get rid of them. I am old enough to remember as a young child how the milkman used to deliver milk every week(that was in Toronto, Ontario – not in a rural area). It was fresh and didn’t last a long time. Now, milk lasts for weeks and weeks (supposedly) which sure doesn’t seem very “natural”. The same with bread. Also, artificial colours and chemicals are prevalent in prepared foods. It’s really not that hard to change the way we eat, once you get started and, hopefully, once you start seeing improvement. There is even a good choice of gluten-free beers available now. If you decide to try gluten-free, a really good cookbook is “You Won’t Believe It’s Gluten-Free” by Roben Ryberg.

    Crohn’s and colitis are really on the rise in younger and younger children, so I think we need to get to the root of the problem, not just mask it. There are so many other inflammatory diseases too, not just IBD, that’s why other family members may not have UC but have other issues.

    I wish you well,
    Gail

    • Mark from Boston
      Mark January 25, 2013 at 1:42 pm #

      Thanks for the info Gail – very helpful! I’ll have to check out the gluten free beers you mentioned. I really miss having a few beers during the week, but i’ll give the gluten free variety a shot and see how those sit with my stomach. Not sure if I’m ready to go full-on gluten free just yet, but i’ll check out that cookbook you mentioned too.

  4. JamieIsLame
    JamieIsLame January 25, 2013 at 9:26 am #

    Hey! sorry to hear steroids ain’t working!
    I have the exact same problem, my body just doesn’t respond to steroids anymore! I don’t even get the side effects that come with them, just like taking a very bitter pill that does nothing.

    What happened when they realised the steroids were having no effect is, I was started on Remicade infusions and immediately felt a lot better!

    10 months on, I’m finished remicade, starting humira on wednesday and feeling great mostly!

    as for my diet, I eat and drink whatever I want with little to no consequence!

    people tend to avoid remicade and humira at all costs because they’re scary medications! they come with a huge list of side effects, even the common ones can be fatal, but I’ve never had any issues as of yet with biologic therapy.

    you should give it a try if your doctor recommends it, just make sure you’re monitered closely at all times! don’t let them drop the ball.

    Hope you’re feeling better soon!

    • Mark from Boston
      Mark January 25, 2013 at 1:45 pm #

      JL – sounds like you had a similar reaction to the steroids as me. What I am really shocked with is how I’ve somehow lost weight since starting the prednisone. I had lost about 15 lbs due to the colitis initially, but once I started the pred, I lost another 10lbs within about 3 weeks. I’ve started tapering that down, now to just about 20mgs per day, but I still haven’t gained a single pound back yet… seems like everyone else that is on prednisone gained weight while on it and struggle to get it off. Glad to hear that the remicade route worked for you. Hopefully the success continues with the Humira as well. Good luck!

  5. MikeH January 25, 2013 at 9:43 am #

    Mark,

    Sorry to hear of your troubles, I think that all of us can empathize with what you and your family are going through.

    I wont give you my full backstory as it is really no different than everyone else’s, I am currently in a pretty nasty flare which is similar to yours in that I was put on prednisone @ 40mg along with mesalamine @ 4.8g per day and thought that I was making great progress, I was back at work with my symptoms diminishing (bloody mucusy stools and urgency in the morning and evening, but was clear for 8-10 hours during the day), though my GI doctor believed that I should have been symptom free so he increased the dose to 60mg per day which seems to have incited my UC.

    I have been on the SCD for 3 months and don’t notice a difference from a UC perspective, I do however feel more energetic and have eliminated the grouchy/short-tempered side effects from the drugs which were apparent in the past.

    Humira/Remicade are also being pushed by my GI doctor, which I have some concerns with due to some of the disclosed side effects and the lack of any positive long-term treatment results. if my flare doesnt abate I will more than likely be in the infusion line with you on a short-term basis to see if remission can be achieved (~5 rounds).

    It is such a guessing game with what works for for each of us, I think attacking it in a more scientific nature (food/suppliment/probiotic journals) should eliminate some of the guess work for what helps you achieve and sustain remission. This is hard to do when you are so desparate to feel normal again, but long-term if you are looking to avoid surgery I feel it is a must.

    Dont forget stress management; body stress, emotional stress and mental stress (these more than diet seem to be my triggers when neglected).

    I can’t wait to hear of your positive results.

    Sorry I kind of went off topic, I really just wanted to say that it is important to understand and eliminate/address what causes your flares as much as ceasing the current flare so that you can win your life back for the longhaul.

  6. KimberlyHI
    Kimberly January 25, 2013 at 11:24 am #

    Hi Mark! I was responding well to prednizone for flares at first, but this last flare I had the prednizone stopped working. I was also on asacol at the time. I ended up stopping the asacol and tapering the prednizone and starting a combination of imuran and remicade. I have been on them since september 2012. I was feeling much better within 3 days and by about month 2 I was almost 100% and still am. At this time I am eating what I normally do. I have side effects; hair loss, acne, nausea, and am tired sometimes. Normally my diet is not so good really, I have a sweet tooth. I am pretty sure my last 2 flares were triggered by ice cream! But on these meds, I can eat dairy and everything with little to no problem.
    I have just bought the SCD book and a recipe book, because I don’t want to take remicade and imuran forever and I also don’t want surgery if possible. I have heard from many people that remicade stops working after awhile, while I have seen others who have been on it 10 years. It is a scary medication in that in rare cases it can cause lymphoma and skin cancer. In fact I just called my doctor last week because my skin was itchy and when I looked online it can be a sign on lymphoma so of course I paniced a little, and now we are running a bunch of blood tests. Also, the meds shut down your immune system so if you get an infection your body may not be able to fight it. So these are a few of the reasons the drugs may not be the best option for everyone, they seem to work great for alot of people and allow you to continue life as normal including diet for the most part, but they come with risks of course.
    I have a one year old so I will be working with this diet but will still need to feed her a regular diet, but I’m going to make it work, although not sure if I will be able to folow SCD 100% I am going to do my best. Most of us I think have to play around with diet and probiotics/supplements to find the right combination.
    Good luck Mark! Let us know updates and how Humira worked for you if that is the route you go! Hang in there, you will find something that works for you!

  7. Mark from Boston
    Mark January 25, 2013 at 3:17 pm #

    It has been about 2 weeks since I wrote my original post above. Haven’t started the Humira yet, and I am going in to see another doctor for a second opinion before I start down that path. My symptoms have been mostly stable over the last few weeks, but still not back to normal. I’m really reluctant to start Humira but since my diet changes and current meds haven’t brought me into remission, I don’t think I have much choice. I’ll update again if and when I start on Humira. Thanks for everyone’s input though, it’s great to hear experiences from other people who have gone through this same stuff!

  8. Stewart January 25, 2013 at 3:39 pm #

    Hi Mark,
    I am “blessed” with a “mild” case of Crohns and UC. Ask your Gastro about Budisone. It is a non-systemic steroid the saves me from all flares. Unlike pred, which gets into your entire body, Budisone is only directed to the colon. Occasionally, I need help and use immodium, an over the counter shit stopper. I am also on Asacol. My Gastro suggested Humira this summer. My research scared me sufficiently not to take the drug. Please review the following: http://www.askapatient.com/viewrating.asp?drug=125057&name=HUMIRA.
    Good luck.
    Stewart

  9. bev January 26, 2013 at 9:05 am #

    Hey Mark,

    Yes, you have read right. This site has alot of success stories without meds. Having been through the med merry-go-round for 15 years, I have finally attained remission with a good probiotic, the L-glutamine, and a few natural anti-inflammatories (vitamin D and astaxanthin to be exact). I don’t want to burst anyone’s bubble, and I am not a doctor…BUT (and it’a a BIG BUT), drugs do not seem to work for this condition(I hate calling it a ‘disease’ and I won’t). Time after time, story after story, people with UC end up the very same way. All of the drugs, including the one that you are about to take, either do nothing, or stop working…not to mention the many nasty side effects that mey occur.

    Bottonm line…doctors do not know any more about treating this condition than new UCers do. You are at their mercy at the beginning. Doctors also usually tell new UCers that it will not spread or progress. Mine started out as proctitis, like alot of peoples’ on here, and I was told, not to worry, there was only a 20% chance that it would go any further. Well, in my and everyone elses’ cases on here, absolutely not true! I am thinking now that the meds actually make the UC worse and may damage our colons evenb further. Of course, then the doctors say that when all of the drugs stop working, well, your coklon has to be removed!!! RIDICULOUS! Yeah, removed because it hasn’t been treated…it’s been further damaged by the harsh medications!!

    Sorry to be so pissed off…but every time a new UCer joins the site…and tells the SAME story…I get a little (who am I kidding…ALOT) angrier! That the doctors are STILL treating us with these meds THAT DO NOT WORK, and that they continue to give us false hope really grinds my gears!!

    Please think about things. You can treat this condtion naturally. You just have to want to put in teh effort. If you go to your doctor for this condition, he or she will surely write you a prescription! And another, and another…until it’s time to remove your poor colon.

    Been there…and I plan on keeping my body parts!!

    Cheers,
    Bev
    :)

    • Mark from Boston
      Mark January 28, 2013 at 1:50 pm #

      Hey Bev – thanks for your input here, I really appreciate it. I’ve seen your comments on other posts, and if I recall correctly, in addition to the supplements that you listed you’re taking, you also follow the SCD diet right? I realize that eating well and taking a proactive, non-medicinal approach to treating this condition is probably the best route, but I just feel like the SCD is very challenging to follow 100% of the time – especially when you combine all the elements of a busy life: work, family, socializing, etc. That being said, I will go down every path I can before opting for surgery, as I want to attain and keep remission and not lose my colon :)

      • bev January 28, 2013 at 3:15 pm #

        Actually, Mark…NO…I follow NO diet at all! No kidding!

        Although diet does play a part in UC, I only seem to need to stay clear of too much wheat, believe it or not. I’m so very lucky…or am I? Maybe it’s the probiotic that I take on an empty stomach, and then no food for an hout after either, that allows me to eat as I please.

        I thought that I had no food triggers, but one day, I ate a big bowl of shredded wheat, the kind with no salt or sugar added…and after not bleeding for almost a year, the next morning, there was quite a bit of blood! I was so afraid, I thought I’d flared again, but I rememberd the bowl of cereal the day before, and put two and two together. I haven’t eaten STRAIGHT wheat since, and there has been NO more blood either! That was easy to figure out. I wish everything about this disease was as simple…lol.

        Good to hear you want to try and keep the old colon. I feel that way as well. I mean, surgery IS surgery, after all. Doesn’t sound like fun to me…not to mention having to get used to a whole new way of living…with a bag, etc. That’s why I tried what seemed to work for others on this site, and somehow stumbled onto my ‘panacea’ (cureall) for UC. You have to weed out the bad information, and the useless information, and maybe find a story that is most like your own. That’s how I did it….and it worked!

        I’m so happy, and feel SO good andf ‘normal’ on no medications for the first time in 15 years! Don’t ever stop trying…

        Cheers,
        Bev
        :)

  10. Youness January 26, 2013 at 10:26 am #

    no argument with what Bev said … we’ve all been through it , with the doctors making is jump through hoops with their medication gimmicks that do not work for most of us , at least not for long .. the only piece of advice would be to really take some time off , a good vacation with NO stress , try the natural stuff that has no side effects first .. you got nothing to lose at least ..

    • bev January 26, 2013 at 1:09 pm #

      Well said Youness!

      I agree 1000%

  11. Doug
    Doug January 28, 2013 at 4:57 pm #

    Hello, I have not been able to spend a lot of time here and I’m not sure I want to jump in, but I have to give medications some credit in my case. Whether its prednisone, asacol, 6MP or azathioprine they were all better than the 7 year battle I fought without them. It took quite a while to learn how the meds worked and how long it would take to be effective but I have confidence they will work for me.
    So my message is a lot of patients, keep in mind that a serious skin abrasion will take a month to heal, my intestine takes that long to start (when I am on prednisone) and another 3 months + to get to remission.
    So give your doctors a chance, it takes time. Its great if you find another way but I tried for a long time and found meds and patients the best combo for me.

    Doug

  12. Lindsey February 1, 2013 at 8:21 pm #

    Hi, all – This discussion has really hit home with me. I am 36, have had UC for about 7 years, but have been dealing with more serious flare ups this past year. I have been on different combinations of Asacacol, Lialda, Prednisone, enemas, and I am trying very hard to prevent the next step ino the immunosuppressants. My goal is to phase out of the Prednisone and stop taking the Lialda and switch to my own treatment of changing my diet.

    I would love advice, especially from Bev, of what supplements to take and how much. I have started a gluten free diet and would like to add the supplements you have discussed. My doctor has never mentioned any of these, so I would appreciate your advice on exactly how to start this regimen. Thank you so much for any help you suggest. I am going to repot this as a new topic, too, in case you all ate no longer on this thread…

    • bev February 2, 2013 at 9:17 am #

      Hi Lindsey,

      Here is what I take…and believe in!!

      First thing in the morning, empty stomach, one probiotic capsule of ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Then, I don’t usually eat for an hour afterwards, because I exercise. If you are one of those people who eats right away in the am, then maybe get up at 3 in the morning, and take it with water, then go back to bed! It doesn’t irritate the stomach, so that’s a good alternative if you have to eat first thing in the morning. I suppose you could even take it at bedtime, as long as you haven’t eaten two hours before.

      About an hour before lunch, I take two scoops (the scoop in included in the tub or jar of it) of fermented L-glutamine powder by NORTH COAST NATURALS. I mix in in a bit of juice, because I don’t really like the taste of it just in water. In the juice, you can’t even taste it at all. L-glutamine is what bodybuilders take to repair their muscles after working out…but it does much more…it also heals the mucosa of the colon. That’s what stopped the bleeding for me. The probiotic took every other symptom away but the bleeding. I suppose if you wewren’t bleeding, you might not need to take the L-glutamine?

      Right after I eat lunch, I take 4000 units (four 1000 pills) of vitamin D and another natural anti inflammatory called astaxanthin ( one 4mg capsule). They are both for inflammation. I’m not sure taht they are a MUST, but I take them for inflammation anyway, just in case. I had a vitamin D and inflammation blood test about 5 months ago, and my D levels were very low, which I had no idea, and I had inflammation. After adding the two things, a month later, my D levels were good and high, and my inlammation was within normal range! They should be taken with some sort of fat…that’s why I take it at lunch right after I chow down.

      I do not follow any specific diet, nor do I watch what I eat. I find that I can’t tolerate ALOT of straight wheat, but other than that, life has become fairly normal now! When I was flaring, ANYTHING that I ate hurt , and went right through me!

      I hope these things work for you, too. We are all different in this ‘condition’. It didn’t take me long to see positive results, either. Within a week on the probiotic, and within two days for the bleeding to stop, a month later, when I added the L-glutamine.

      Good luck, and cheers,
      Bev
      :)

  13. Lindsey February 2, 2013 at 3:59 pm #

    Thank you, Bev! I found an old post of yours somewhere that had some of this information, but seeing it laid out specifically is very helpful to me. I don’t know if anyone can answer this question or not, but is there a “good” time for me to stop taking the Lialda or should I just stop? Obviously I have to phase off the Prednisone, so I have two more weeks of that. I’m wondering if it matters when I quit the Lialda? Thank you again for the advice!

    • bev February 2, 2013 at 4:26 pm #

      Lindsey…I’ll take this question too!

      You will not have to taper off of the lialda…at least I didn’t. I decided to just stop it one morning, and I’ve never looked back! I had no bad side effects by stopping it…quite the opposite I would say! I was actually on the highest dose of asacol, not lialda, but they are both mesalamines, just less pills when you take lialda.

      You are, however, correct about having to taper off of the pred…make sure you don’t just stop THAT drug.

      Cheers
      :)

  14. Lindsey February 2, 2013 at 4:42 pm #

    Thank you so much, Bev! I will keep you updated on my progress!

    • bev February 2, 2013 at 5:39 pm #

      Please keep us all updated Lindsey. It’s really important for others to know if and what works. I would love it if everyone could get off meds and manage their UC naturally.

      In a perfect world…LOL!!

  15. Caroline
    Caroline February 3, 2013 at 3:23 pm #

    Bev – thank you for the idea of taking the probiotic in the middle of the night so it’s on an empty stomach. I always eat in the morning when I’m running around before work so this will be helpful to me! I have been taking other probiotics but am adding Ultimate Care to the mix since I just finished some wretched antibiotics – the store I went to didn’t have the exact one you take, but I am giving the Critical Colon one a go round. I figure the more good bacteria the merrier. :)

    • bev February 5, 2013 at 8:42 am #

      Hi Caroline!

      I know! I don’t know why I didn’t think of taling the probiotic in the middle of the night, sooner.

      No worries about taking the exact one, I’m sure. The one you have sounds good…critical colon…perfect!

      Cheers, and let me know how things go. I really swear by probiotics!

      :)

  16. Erin February 9, 2013 at 9:49 am #

    I am just seeing your post now,so you have probably have started Humira already. But I will mention it anyway. Did the drs discuss options with you? There are tablet form immunosuppressants available,instead of going straight to a biologic.
    Perhaps the dr decided on Humira because of the severe case you are dealing with. I thought I would mention it because there is a significant price difference,between immunosuppressants and biologics.
    You said you lost weight while on pred,did you have an appetite while on pred, or the opposite? Because if you were eating less,that could be why. Or frequent bm’s, resulting in a lost liquids and solids.
    Hope to hear soon that you are doing well! This is a great community isnt it. :)

    • Mark from Boston
      Mark February 11, 2013 at 9:14 am #

      Hi Erin,

      I actually went and got a 2nd opinion from another GI doc before starting Humira. The thought of a regular injection and the side effects were not too appealing to me so I figured I’d see if there were other options before taking the plunge. The new doc said that he’d like to try Imuran before we go with Humira, as that has proven to be pretty successful with other patients. Right now I’m taking 20mg of Pred in the AM and I’m just on the initial dose of Imuran for a few days before I ramp that up in about a week (pending blood test results).

      My symptoms aren’t terrible, but I am waking up 2 or 3 times overnight to go. The presence of blood has slowly decreased, but the cramping and general discomfort remains. during the day I am only going once or twice, which is probably due to the fact that I’m taking my meds all in the morning.

      When I was on the high dose of prednisone, I felt awful. I didn’t have much of an appetite, but I wasn’t not eating either. It just seemed like anytime I ate anything it would just come back out with a vengeance, no matter what was that I ate. I was on 60 mg of pred for about 3 or 4 weeks and over that timeframe I lost about 10 lbs, when I was already down about 15-20 lbs from my original weight. I’m actually still losing weight now, since my body just doesn’t seem to want to accept the food I’m putting in, and I’m trying to be as gentle and nice to my colon as possible. Yogurts, water, SCD-friendly foods, standard foods, etc, none of it seems to matter. It’s extremely frustrating.

      I will be going to the higher dose of Imuran in a few days and will update again in a few weeks with how things are progressing. I’m also starting to incorporate some other supplements into my diet (L-glutamine, higher Vit-D dose), but if anyone else has had a similar path and has other suggestions, I’m all ears!

      • bev February 11, 2013 at 9:29 am #

        Hey Mark…

        Damn these drugs anyway! I cannot believe that the doctors still tell us that Imuran (or whatever other drug) has any success rate at all. Msaybe for a very short time, but we all know it never lasts. Not to mention side effects…

        I like how you say your symptoms aren’t terrible…can you believe that we actually think that? The cramping pain, the getting up to ‘go’ through the night? What a way we live, huh?

        You are wonderful! Great attitude! And…I HOPE IMURAN is the magic bullet for you…or anyone with UC…I want it to help SO MUCH…unfortunately…well, I won’t even say it…

        Cheers and THE BEST OF LUCK TO YOU,
        Bev
        :)

  17. Angela February 11, 2013 at 2:48 pm #

    Hi Mark!

    Sorry to hear about this! 6MP was the first drug I went on (its similar to Imuran), however, I could never properly metabolize the drug so I never had the required levels of it in my blood for it to work. I then went on Methotrexate, another immunosuppressor, and finally Remicade! My life saver. Been on it for 8 (coming up on 9) years and no side effects. If 6MP doesn’t work for you try Remicade over Humira. From a lot of what I’ve read doing research and also heard on this site, Humira has a lot more side effects that can become present than Remicade (remicade just seems to stop working but doesn’t cause other problems). I was put on Remicade because Humira wasn’t on the market yet.

    Diet wise, be careful with refined sugars and grains, stick to whole grains, avoid anything that’s heavily processed (boxed foods) or that has a lot of preservatives in it. Try to cook and eat fresh. Trust me it’ll help. Yogurt wise it only helps if it contains live cultures! After pasteurizing they have to add back in the good bacteria and some yogurts don’t so read the label. Avoid artificial food colorings (they have their own slew of problems), and stay active! It’ll help joint pain as well as your flares.

    Also this is a big one….stay away from NSAIDs (Non steroidal antiinflammatory drugs) pain relievers like aleve (naproxen), aspirin, and advil (ibuprofen). They can inflame the lining of your intestines. Only take tylenol (acetaminophen).

    Good luck!

    Angela

    • bev February 11, 2013 at 3:00 pm #

      Wise words Angela!

      No doctor ever told me not to take advil after I was diagnosed with UC…and I continued to take it for years afterwards! 14 years later, somebody finally told me…I can’t recall who…only use tylenol for a headache or pain, if you have UC. I was floored! Since I’ve stopped advil, I have been in remission, come to think of it. Wow! I wonder if there was a correlation with advil and my awful 14 year ‘flare’???

      • Angela February 11, 2013 at 4:32 pm #

        Thanks Bev!

        Me either! I only found out about a year ago after finally switching to an adult gastro (he’s the one who told me) from my pediatric one. I now want to call my old doctor up and tell him to start telling his patients! It probably has a huge correlation between the two!

        I also recently read in the “17 Day Diet” Book that one of the chemicals they put in pop to keep the CO2 mixed can also irritate the intestines! I read the book because the doctor who developed the diet had done so to help get diabetics off of their medications, has a lot of useful tips in general to stay healthy!

        Oh and I finally got a chance to read your story! You’re an inspiration for people to learn how to take control of their health and UC management! Keep pushing for people to take probiotics too! And you’ll be glad to hear it’s coming into the medical education, my brother just finished med school and is always making sure I’m either having the good yogurt daily or taking a probiotic (especially if I absolutely have to take an antibiotic).

        And I would completely agree that the accutane caused your UC. A few years after I was diagnosed my aunt called us because she saw a commercial about a class action law suit against an acne medicine that was causing IBD (can’t remember the drug…it may have been accutane). I was never on any and my UC is caused by my immune system (it also attacks my liver and autoimmune diseases run in my family, my uncle passed away from lupus, and my grandma and aunt have severe rheumatoid arthritis) so I’m stuck with the drugs :/ oh well at least they’re working with minimal side effects!

        Thanks for all of your helpful insight!

        Angela

        • bev February 11, 2013 at 6:43 pm #

          Angela, what you said about pop does not surprise me! Unfortunately, I think pops are one of the worst things that you can put into your body. Lucky for me, I never devloped a taste for them. My parents never had pop in the house, and by the time I tried it, I was in my 20s…needless to say, I didn’t like it at all. I’m so grateful, because I know alot of people who are addicted to it!

          Yes, that darn accutane. If I’d only known back in the 90s what is known now about that drug. Do you know that doctors still prescribe it? It’s almost criminal…

          • Lindsey February 11, 2013 at 7:08 pm #

            Speaking of soda / pop, does anyone have any suggestions for kicking the habit? I KNOW it is horrible for my UC and for me, but I am addicted like a smoker to nicotine. I have been three weeks gluten free, but I cannot let go of Diet Coke!

          • Angela February 11, 2013 at 8:24 pm #

            That’s insane! Doesn’t it make you wonder where some of them are getting their medical licenses??

            And Lindsey I completely understand! I still have coke or dr. pepper every know and again! But what I do to try and stay off it is 1. Carry a re-usable water bottle with you like a camelbak or nalgene (cause they’re BPA free and not to mention you save money by drinking tap water) so that whenever your thirsty you can reach for water instead of pop. I personally like the camelbak better because with the bite valve for some reason I drink a lot more water which is good.

            The second thing is when you are craving something fizzy and refreshing try Izzie Sparkling Juices instead…they are amazing! And it’s all natural juice. Clementine is my favorite. They also don’t have preservatives, chemicals, or artificial colors in them.

    • Mark from Boston
      Mark February 12, 2013 at 10:12 am #

      Hi Angela,

      Thanks for your input and warnings on the inflammatory medications. My wife is actually a nurse, so I have been fortunate enough to get the benefit of a lot of these No No’s in advance, without having to experience them myself!

      As you suggest, I have already made a drastic change in my diet over the past few months. I’ve eliminated all dairy, all coffee, most breads, all wheat, etc… My dinners are mostly fresh veggies and either fish or chicken, and I eat a lot of yogurts for snacks – specifically ones with the live cultures in there, as well as homemade yogurt that I’ve made.

      I will be increasing my Imuran dose the next day or two (from 50mg to 150), but so far I think that my body has been able to handle this medication thus far. I was reluctant to start Humira (or Remicade) due to a number of factors, but I’m really happy to hear that Remicade has been so effective for you. My hope is to avoid going to those meds down the road, but hearing so many success stories is promising, should I have to venture down that path at some point.

      I’ll update again in a few days for anyone interested in seeing how the Imuran has worked for me. In addition to the Imuran, i’m also taking: 20mg Prednisone, Vit-D, Vit-B12, Probiotics, and a couple other supplements as well.

      • Angela February 12, 2013 at 8:50 pm #

        Yes do update us! We’ll all be interested to hear how things are going! Glad to hear the Imuran is helping! Good luck!

  18. Lindsey February 11, 2013 at 8:35 pm #

    Oh, Angela, I love your idea of the sparkling juice. I will try that immediately. I’ve been looking for a replacement idea and that sounds good. I already carry around my water bottle and drink a ton of water, I just need that “fix.” I will try your suggestion!

    • Angela February 12, 2013 at 8:53 pm #

      Yay, I’m glad! What’s great about it is I first tried it at Chipotle, so even when you’re out and wanting to grab a quick bite you can still manage to keep up being “healthier”.

  19. RJW February 17, 2013 at 7:54 pm #

    Mark,

    Sorry to hear about your troubles and best of luck in beating it. It appears everyone’s body is different and finding the right combination of this and that will take time. It seems half the patients out there are diagnosed with UC or CD from what a doctor sees versus a blood test. So what works for this person and that person may not always be the same. Anyway, one time I had some success with Canasa. I am researching FMT. It seems to make a great deal of sense. Also the different types of enemas VIT E etc. There is much info on this website. Also look here:
    1) http://www.crohnsforum.com/wiki/Fecal-Transplant
    2) http://www.nytimes.com/2013/01/17/health/disgusting-maybe-but-treatment-works-study-finds.html?pagewanted=2&ref=health&_r=0
    3) http://fecaltransplant.org/
    4) http://www.drdavidwilliams.com/ulcerative-colitis-natural-treatments#axzz2LCo9FttT
    Also look up the following papers on the web:
    “Low Counts of Faecalibacterium prausnitzii in Colitis Microbiota”
    “Treatment of Ulcerative Colitis Using Fecal Bacteriotherapy”
    “Review article: faecal transplantation therapy for gastrointestinal disease”
    Just to name a few… Good luck

  20. Mark from Boston
    Mark March 4, 2013 at 12:00 pm #

    Just thought I would update again since it has been a few weeks… I am now taking 150mg of Imuran daily, along with 15 mg of Prednisone and 2 Lialda pills. I’m also taking probiotics, fish oil, Vit D, a multi-vitamin, and the L-Glutamine powder that Bev has talked about. I’ll continue to taper the prednisone down with the hopes of being off that completely by the end of March or early April.

    My symptoms have definitely improved over the past month, but I am still not quite back to normal. The worst time of the day seems to be the morning – either waking me up during the night, or first thing when I wake up. Not sure if this is common for people with UC, but the general urgency and form (or lack thereof) would suggest to me that my UC symptoms are still active.

    As far as diet is concerned, I have completely eliminated coffee and dairy (6+ months now), and avoid fried foods at all costs. I’ve tried to cut back on breads and other foods including sugars, but do cheat on this every once in a while. I’m hoping to be symptom free by the end of the month, if not sooner…

    • bev March 4, 2013 at 1:05 pm #

      Hey Mark,

      I think first thing in the am is common for UCers, and non UCers alike, in having to ‘go’. My mother does not have UC, and has the same habit…only it is right after her morning ‘joe’…sorry if that’s TMI!! Why do I know so much about my mother for goodness sake…sheesh…

      Anyway, long before I ever had UC and was completely ‘normal’ in the BM department, I always had to ‘go’ first thing in the morning, and it’s still the same now. Even in remission. The nice thing now, tho, is, I don’t have to sprint to the toilet anymore, finally. It took a month or two, but I can actually walk around the house and turn the lights on before I have to sit my butt down on the throne! True joy!!

      Bev
      :)

      • Mark from Boston
        Mark March 4, 2013 at 1:29 pm #

        True joy indeed – I hear ya…

        Well, prior to my UC showing up and this first flare, I would usually go in the morning as well but not until after breakfast and after I had some coffee or just was up for a few hours. The difference now is that I’m either woken up in the middle of the night, or have to run to the bathroom as soon as I wake up at 6 or 7am (depending on when my 20month old decides he wants out of the crib). I guess I’m just still bothered by the overall urgency of the experience, but again I think that is just a sign that my UC is still active at the moment. Hopefully this continues to decrease over the next couple weeks.

        If anyone else has been on Imuran or other meds that have helped get them into remission – how long would you say that it took before you went from active UC symptoms to the ‘normal’ that you have today? I realize everyone is different, but I’m just curious to hear the experiences of others on Imuran/6mp.

        • bev March 4, 2013 at 1:36 pm #

          Yep, that always bothered me as well. I detest the urgency that, as you say, probably means the evil UC is still a bit ‘active’. I still sometimes feel a tiny bit of urgency even now, in remission, but I seem to be able to control it in sort of a mind over matter type way…sounds a bit strange I know…sometimes I wonder if I just was so used to the urgency, that I can’t seem to really get ‘over’ it in my head, per se…mind games, huh?? Makes you wonder…

    • rjw March 4, 2013 at 3:08 pm #

      Mark,
      How did your doctor diagnose you? Observation from colonoscopy or biopsy and blood test came back positive?
      Were you tested for C-Diff?
      Have you had muscle aches along with it or before your first flare? Did you have a blood test IBD Panel done?
      Either the comprehensive panel by http://www.prometheuspatients.com/PDF/Prior_Authorization/IBD_sgi_preauth.pdf
      or the Mayo Clinic Panel that they do?
      1) Saccharomyces cerevisiae Ab, IgA apparently if you are under 20 you are negative;
      2) Saccharomyces cerevisiae Ab, IgG again under 20 is negative and;
      3) Neutrophil Specific Antibodies and that is either negative or positive.
      Have you added EVOO? See links below
      100%-Extra Virgin Olive Oil aka EVOO Not extra light oil
      http://www.ncbi.nlm.nih.gov/pubmed/23238173
      http://www.uea.ac.uk/mac/comm/media/press/2010/may/oliveoilstudy
      http://holistichealthinsider.com/olive-oil-calms-inflammatory-bowel-disease

      • Mark from Boston
        Mark March 6, 2013 at 11:32 am #

        Hi RJW – I was diagnosed after going in for a colonoscopy, in Sept 2012. They checked the entire length of my colon, and, for now at least, just the lower section of my colon showed signs of colitis. I had another flex sig test done just a few weeks ago, which confirmed that the UC had not worsened or spread further up the colon.

        I don’t believe that I was ever tested for C-Diff but I don’t think my symptoms are aligning with signs of C-Diff (not having consistent diarrhea, foul odor, etc).

        The muscle aches are new, and didn’t really kick in until a few months into my flare. I had some arthritis going on for a few weeks, but since starting the Imuran, that has gone away almost entirely. In the last 2 or 3 weeks I can’t think of a time when I had any arthritis, which I attribute to the Imuran.

        I’m not sure if I had the IBD blood test taken, but I will ask my Doc next time I have the chance. I’m going to be starting the EVOO routine this week actually, since it seems like a reasonable (and natural) way to attack the inflammation.

  21. Doug
    Doug March 7, 2013 at 2:34 pm #

    Hi Mark, have you asked your doctor about your current symptoms before continuing to taper the pred? For me, I can’t taper without improvement first.

  22. Doug
    Doug March 7, 2013 at 2:48 pm #

    Hi Mark, as far as how long on the meds, 6mp took quite a while to work with the pred at the same time. 6+ weeks but the very slow taper off of the pred was critical for me. Think of the amount of taper as a percent of the mg that you are taking. 40 mg to 35 mg is 12.5%. I often had to go three weeks between reductions never more than 25%.
    6mp can have some serious side effects, (keep up with blood work confirm with doctor) 150mg was to much for me, ended up at 75 or 100mg.

    • Mark from Boston
      Mark March 8, 2013 at 7:43 pm #

      Hi Doug, i’ve been working with my Doc all along to manage the tapering down of the prednisone. I’ve been at 15mg now for about a month and at this point I’m just ready to get off of it altogether. I don’t think it is doing me any good, to be honest, but we’ll see when I go down to 10mg in the next few days.

      thanks for your input on the 6mp. So far the 150 of Imuran is going fine, and my blood tests continue to come back with positive results. My doc is well aware of the fact that my levels need to be monitored closely and we’ll adjust as needed as we move forward.

      Hope you continue to feel well and thanks again for the comments.

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