Medication or Diet or Both for Colitis, That’s The Question

Happy Fourth of July to Everyone in the USA and of course to the lucky American travelers who are stumbling around in some other country at the moment.  For those of you who already read my previous post “What My Gastro Doctor Told Me”, I made a slight reference to an interesting part of that doctor visit.  It has to do with a medication prescription I received.

Adam Scheuer Feeling Crappy to Feeling Happy

A picture of me at last summer’s camping trip. I’ll be headed up there again in two weeks…Can’t wait!!

But let’s back up a tiny bit.  As most of you know, I’m currently living with diagnosed Ulcerative Colitis, discovered via colonoscopy back in October of 2008.  For the majority of the time since my diagnosis, I’ve been living medication and symptom free which is awesome.  Some of you might find it amazing that it’s possible to live medication free with UC, but with the help of the SCD diet rules that I follow daily, and with some adjustments to my lifestyle it really hasn’t been that difficult.

So, back to the doctor visit.  Specifically, back to the prescription my new gastro doctor gave me.

When he asked me during the consultation, “What medications are you on”, and I explained how I wasn’t on any and that I was in remission,  I could tell he was a bit surprised.  But I went forward to explain how I’ve treated the disease for nearly 3 years now with great success and he definitely understood where I was coming from.  That made me feel pretty darn good, since I had not had that level of respect for my UC treatment decision making from the western medicine world yet.  And that’s not surprising either.

But, during this same part of the visit, my doctor started telling me that there were quite possibly some additional benefits that I’d receive if I started taking a low dose of mesalamine at night time in the form of a few pills.  He went further to tell me how there are very minimal if any likely side effects from this type of medication, and that there were many studies stating a reduced chance of developing colon cancer in the future.  So there I was, in the middle of a conversation I had not had in a really long time.  It was kinda strange.

Should I really be considering taking a medication for my colitis

even if I’m not experiencing any symptoms?

I left the appointment with a couple of prescriptions.  One for a low dose of nightly Colazal, which is a mesalamine based medication, and another prescription for a steroid based enema in case  flare up happened in the future.  My doctor told me he thought it was a good move to make, and very little chance of side effects from the colazal, and at a low dose, it wouldn’t be too expensive either.  You see, I have to pay for the first $3000 of my medical expenses each year before insurance kicks in.

So, that was about a month ago, the date of that consultation.  And I’m very sorry doctor, but I am yet to pull that prescription out of my wallet.  It’s still sitting in there all folded up nicely.  I did take it out and look at it one day on the bus ride to work, but that’s about it.  I’m just not there yet.  And I think the problem might not actually be my fear of side effects, it’s something else I’m afraid.

It’s my ego, that’s it.

Call me an idiot, call me paranoid, you can call me whatever you want, but there’s something inside of me that said a couple of times last month, “Hey Adam, you’re feeling great, no need for you to start taking any pills now.  Maybe at some later date, but definitely not now.”  I guess I should go read the studies that talk about the reduced risk of colon cancer, that would be interesting to read and review.  It would be interesting to know what the patient group was doing to treat their UC.  Were they also doing the same diet as me?  Were those patients taking other medications too?  Who knows.

So I’m wondering, are there a whole bunch of people like me who have a big ego about your UC?  Are there other people who are super hesitant, or full-on reluctant to start taking prescription medications when you haven’t taken them in so long?  Are there any people who are thinking these thoughts sometimes?

Alrightee, I”m off to the Berkeley marina for the 4th of July festivities.  If you’re lucky enough to have Wednesday off, I hope you’re celebrating too.  If you’re stuck in work, or stuck at home feeling sick with colitis symptoms, you’ve got to remember:

Symptoms don’t last forever.

Best of luck to everyone, and I’ll let you all know if I ever fill a prescription for this stuff I talked about above.

Finally, for those of you who are enjoying summer vacations and camping this weekend, you are my heroes!

-Adam Scheuer

-author of Feeling Crappy to Feeling Happy & Cooking For Ulcerative Colitis




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18 Responses to Medication or Diet or Both for Colitis, That’s The Question

  1. Maggie July 4, 2012 at 1:47 pm #

    Why mess with perfection?!

    • Tom
      Tom July 4, 2012 at 1:56 pm #

      Adam, glad you’re still feeling fine at the minute.

      One big lesson i’ve learnt recently is that even after going into remission, inflamation can still be present and not show itself in any forms apart from on the Colonoscopy/sigmoidoscopy (Camera adventure as i like to call it)

      So if you do appear to have inflamation on your next colonoscopy i would suggest you don’t think twice about getting that prescription.

      Good luck and keep us posted.

      Tom

      • Adam
        Adam July 8, 2012 at 10:08 pm #

        Hey Tom,

        Thanks for the advice!

        I’ll let you all know what goes down when the scope day comes and the pictures are taken! I’m pretty pumped for it, T-minus three months now!!
        -Adam

    • Adam
      Adam July 8, 2012 at 10:07 pm #

      Hey Maggie,

      not a bad question eh!:)

  2. Johnny Drama
    JohnnyDrama July 4, 2012 at 3:10 pm #

    Whats up Adam! Good to hear from you.
    Im currently being a whimp and chillin inside on this great holiday here in Merica!!, Its a hundo outside here in the cornhusker state, it is a hot one!!
    Anyways man, so this is a great topic I was really thinking about this the other day.
    Actually I think about this topic daily.
    As you know I’m taking 3 Lialda pills and following the SCD. Like I said countless times, Im going to wean myself of these pills starting this august. I will go to 2 a day then 1 a day, until zip. I hope it goes well, I will have to find out!
    Im still going to follow the diet obviously and will do so for a long time. I just really want to get off pills, fortunately I am on the beginning pills, compared to the hard drugs like pred and remicade so I feel really bad even complaining about this after reading such sad stories with other fellow Uc’ers.
    Being 21 years old I just dont like the fact that Im taking 3 pills a day and I will have too the rest of my life, I know their are side affects too Im living proof, but sometimes I wonder if its entirely the pills causing the affects or the stress of UC itself contributiing. I give or take its a bit of both, but really swear its gotta be more of the pills.
    Im not super educated when it comes to pharmaceuticals, but I just have a feeling that eventually these pills are going to do some major harm to my body or my body will become resistant or something. What do you guys think??
    I’m afraid my body will need more and more etc or I will have to get strong ones… I just think its BS that my gastro doc says take these pills the rest of your life and you will live normal. I just think thats messed up.I respect my doctor and know how much schooling it took to get where they are right now, but I think that’s not fixing the problem, its just a temp fix if anything. For many people thats what they want to hear tho, so many people are lazy into days world and just want a pill for everything, from losing weight to having a headache, our society just pops pills, I mean we are the one of the only countries that allow pharmacy companies to advertise on television. So its pretty much a norm…
    Ive read on the internet that pills like lialda and some UC pills help reduce are chances of getting colan cancer,but once again what about the other effects they do to us…..
    Like Adam was saying who did the study? Where the people followng a strict diet( prob not) etc…. just stuff like that
    Im not saying that all pills are bad and we should never take them, I would say we are lucky to have so many options in today’s day and age and can take pills if we need them or do diet etc.. its a free country and its OUR choice. People who made these pills are very very smart and lots of pills are great but some pills just cause more good than bad and cause you to take another and another etc.. I myself know elderly people that take over 20 pills a DAY! I dont know If I would want to even live like that!!!
    Like I said hundreds of times before,Im on the SCD diet since day 1 of my diagnoses. I wonder too myself sometimes if actually taking the medications are doing more harm than good if since Im already in remission. Obviously these pills have toxins and stuff, but could they also prevent me from healing? Could they be creating bad gut bacteria etc… They do have special coatings on them, that have been proven to be bad on our body.
    CHECK OUT this article for instance…
    http://news.discovery.com/human/pill-coatings-chemicals-hormones-111222.html
    This comment is getting a bit long!!, but in the back of my head I think could not taking these pills be bad in long term such as getting cancer etc…. should I just take them because Im lucky to have the opportunity in this day and age to have such pills or is it the fact that eveyone around me takes a pill for everything and people are constantly pushing pills that I feel like I should too?
    I mean its hard to say no to a very educated doctor that I don’t want to take pills. I mean why would a doctor want us to live completely normal. They would go out of business if we were not constantly going to them for check ups and colonoscopys and flare ups, med changes etc… No shit most docs dont want to admit that diet can possibly help, their are not studies to back it up that because just about all studies are driven by pill companies and its pretty hard to find a bunch of pill companies that would pay to have a study about diet haha not a good business strategy. So I guess they dont have proof. In this world their will always be good and bad doctors and most will be using westernized medicne and a few will be like Adams using a bit of both. Their are no Naturopathic doctors in my state, SO I really cant get second opinion. We all wish we could have a doc like Elaine created the diet and did countless decades of studing bacteria and diet.
    . But in the front of my head I keep gettin pissed off about gulping down these big pills in the morning and I just feel bad about putting them in my body, although they can be helping me alot I will find out once I am off them. I guess I just am fed up with the pills. I hate going to pharamacy and waiting in line next to a bunch of people three times my age and everytime here the Pharmacist go, WOW these pills are pricey… and half the time they are never in stock because they are so seldom used. It makes me wonder, their arn’t many people using these pills and they are pretty new, what are the long term affects?? No one will know, I guess you could say I would am kind of a guinea pig, because the trials are so short termed theirs no possible way to know. I often thing about just taking a few of thoes original sulfadiazine pills off and on if I don’t feel the best if I ever wean off of lialda successfully.
    Overall I bet all of us think these things to our self, or maybe I just think way to much haha.
    But I think its good to be concerned about our bodies
    But its my body and I got alot of years ahead, and I want to live my life to the fullest.
    Like Adam says UC isnt the end of the world and symptoms dont last forever.
    Thanks again Adam and all the fellow UC’ers on this site
    We need to enjoy every moment in life, I enjoy life more than ever now although I have a disease. At first I complained so much that I cant get drunk anymore…haha and I feel not being in a flare is such a great feeling that it beats the buzz of alcohol any day! Although I like to toke it up on occasions haha.
    Lastly, like a video Adam posted on here months or so ago, that it could be alot worse ppl and complaining doesnt get us everywhere! Their are people that are blind, deaf, missing legs etc… Most of those ppl would laugh at us for complying about UC.
    UC does suck though! I wouldn’t wish this disease upon my worse enemy.
    Have a good 4th and watch out for bottle rockets and drunk drivers UCERS. And remember the true reason for the season!
    Peace Out
    Johhny Drama

    • Adam
      Adam July 8, 2012 at 10:13 pm #

      YO JD,

      I think you might have the record for the longest comment ever on the site!!! Congrats to you my cornhusking amigo!!!

      I’m starting to really wonder exactly what pills you be chowing on out there in the cornlands my friend:))…..

      later dude,

      -Adam

  3. Bev July 4, 2012 at 3:40 pm #

    Adam, are you kidding?? I feel EXACTLY like you do! Is it my ego, in that I do not want to ‘lose face’, because I am doing so well med free? I’m not sure it’s ego per se. I swore to myself, and to anyone who will listen, that I will never go on another UC medication again. That’s pretty darn stubborn of me, I know, if I really think about what that means!

    What this doctor told you about these low dose meds has me thinking, that’s for sure. For alot of reasons, one of which is…why is our cancer risk higher, anyway? Because of the ulcers letting or allowing cells to grow? I’m not sure I buy the higher risk. On the other hand, what does anyone really know about this disease, right?

    One thing I do know is that mesalamine (asacol, lialda, etc) makes me feel worse. It worsens my symptoms. It makes me feel nauseated too. So, I think I would have to pass on the poresciption. I know doctors probably mean well in some cases, and aren’t trying to help out the pharmacies, but I still think you gotta go with your gut!!

    Happy 4th in the good ol’ US of A!!

    Bev in good ol’ Canada:)

    • ann July 6, 2012 at 7:28 am #

      Bev,

      All of the posts I have read, you are probably one of the most brave person. I suffered so much from western medicine that I become so afraid of going for doctors. I have not taken ANY western medicine for my CD/UC. I am always having loose stool and mild to moderate cramping. I also have the urgency to bathroom in the morning and during/after breakfast. I know you treated yourself with tons of probitotics any you eat normal food, I am so much looking forward I can eat normally and maintain my weight. I weigh about 85-86 pounds now and my BMI is probably 17. I just can’t afford to lose weight.
      I also need to have energy for my full-time job since my husband does not have one. I just want to ask what kind of food you would eat. I know there’s nothing special, but could you just tell me a typical meal you eat, the amount, how you cook them? I will be really really appreciated. You can also email me at 214310392@qq.com if you prefers. I thank you so much for your help. Have a wonderful day.

      Ann

    • Adam
      Adam July 8, 2012 at 10:16 pm #

      Hey There BEV:)
      Great to hear from the Canadian Connection!! (that’s my new name for you, that’s cool eh…?)

      yeah, so it for sure is a crazy topic to talk with your doc about, to think about, to talk about with your family etc…

      And I thank you for allowing me to realize there’s definitely other UC’ers who are sitting on the medication sidelines and really kinda wondering what the heck is the best move to make, especially when you’re feeling good.

      crazy…for sure.

      Talk to you soon,
      -Adam

  4. shelly in maine July 5, 2012 at 8:26 am #

    Yo Adam…you call it ego-i call it stubborness/determination to take back control of my body, medical/medicine decisions and ultimately my hopefully healthier future. I too was given an Rx, which I also put in my wallet, later moved it to my purse and eventually crumpled after dealing with over a half year and still some leftover stuff that all those meds. For 30 years have changed my body forever-especially of my final Med. Allergy to humira and vowed not to take any more meds. -especially the ever so toxic ones. Have I ruled out prednisone…not sure yet, but I do know my start up dose is 60 mg!! The enemas i could never keep in, but maybe if the flare didn’t happen exponentially! Anyway as I read up more on those older/beginner and reformulated meds. that I am either allergic or intolerant to…the side effects still remain. I’m also pretty sure since I pooped them out whole with letters still in tact-they sure aren’t going to help me fight cancer! Besides we know most studies are rather significantly statiscally invalid. I think I’ll stick to my cancer fighting foods, power Smoothies, exercise, de-stressing life on the lake, omega 3’s, vsl #3 d.s.-Mega doses…almost at my 1 year Med free anniversary, made it through a flare and iritis-linked together no meds. except eye drop-pred. Forte…I will continue on this route. I did try some natural oriental medicine about a month ago while i actually was feeling pretty good, but my body is still acting weird from the humira allergy-almost a year later. I will try more natural meds. before filling another prescription for the “traditional meds.”…besides, who knows our bodies and UC better than us?! :-)
    Continued good health and Med. Free! Shelly :-)

    • ann July 6, 2012 at 7:23 am #

      Hello Shelly,

      Great to know you are doing well. I am just curious how you maintain your weight while on SCD. I am always having loose stools and whenver I eat, I need to go to bathroom soon. I am not on any medications because I was too toxic by medicines before and I got mentally traumatic forever from the western medicines. I kept losing weight. If I am on fruits-mostly diet, my symptoms will be so much better but I just can’t keep my weight. I also can’t have much meat because of endometriosis. I need to eat rice… I just want to ask if you have any good way to keep your weight? Thanks so much for your help.

      Ann

      • shelly in maine July 6, 2012 at 8:12 am #

        Hi Ann,
        I am not complete sCD like Adam and others. I do eat something close, especially when having flares, but more chicken and eggs-scrambled than meat I hardly eat or butter my system prefers very low fat, chx soup with well cooked carrots and spinach and I use no yolk noodles. I make power Smoothies with stonyfield organic yogurt,sometimes Greek for more protein, ripe banana, frozen wild Maine blueberries-wild are better for you, frozen strawberries, and some calcium vit d o.j. , Nat. Cran-grape or whatever, honey. I also add my vsl #3, and metamucil clear and Nat.-soluble fiber(and during the winter and my lunch at work I add spirutein-recommended by Tracie dalessandro,ms,rd,CD in her book what to eat with ibd- Some people add peanut butter to theirs, but I don’t tolerate it too well anymore. You should read up on soluble vs. Insoluble fiber-sounds like that may help you. Smoothies and a good blnder are key.
        I also recommend reading Breaking the Vicious Cycle, Adam’s book and you’ll get his scd cookbook-it all will help make sense. I also take a lot of shortcuts with cooking and the frozen berries are more affordable and make a great smoothie. I do make peanut butter cookies low fat with canola oil and natural Teddy’s peanut butter. I also didn’t do that well with the almond flour. I find eating natural and organic foods without preservatives and names you can’t pronounce! And that have very few ingredients work best. Limit breads if not scd and other not legal foods.
        A good quality probiotic is key, you have to work up to and figure out how much you personally need. Try to make only 1 big change at a time so you can see what works and what doesn’t and write stuff down.
        Hope this helps and wasn’t too wordy. Good luck, Shelly

    • Adam
      Adam July 8, 2012 at 10:21 pm #

      Hey Shelly,

      Thanks for the comment and update on how you’s doing up there in the ME! I hope that lake is getting nice and toasty, and not too many skeeters flying around!

      Congrats for feeling good and getting control! I hope the humira weirdiness goes away soon, I sure know what that’s like (if you’re talking about crazy skin stuff…I guess chances of that are small since there’s about a bazilion “potential side effects from that yack…)

      -Adam

  5. UC Family Boy
    uc family boy July 5, 2012 at 10:01 am #

    Isn’t it funny, the world is full of hardcore illegal drug takers. They take it when they want for there fix. We take ours when ideally we don’t want to (unless it gave the same illegal drug effects maybe than the awful side effects we get.lol)Where is the balance, what is the point? Where is the answers :S
    I first like most hated taking drugs, still do but if someone said to me I could do an ‘Adam’ I would jump at the chance. Surely this is the aim as Johnny plans. Surely if there is no inflammation than our colon is appearing and working ‘normal’ so our risk of CC is no different to the population

  6. Trevor W July 5, 2012 at 6:11 pm #

    When I went to the doctors office today, I kept one thing in mind. The doctor is educated on treating people with drugs and doing surgery, and has little to no knowledge on nutrition or any other alternatives.

    The doctor told me my diet “won’t fix the problem”. But tooshey doctor “drugs won’t fix the problem either”(I said this in my head of coarse). Unless he means fixing the problem is cutting down bowel movements and blood, as well as mucus(which my SCD diet HAS DONE SO FAR). So whats the difference? Drugs are supposed to put you in remission but they don’t fix (cure) the problem. SCD puts you in remission and doesn’t fully fix (cure) the problem but does the same thing (and without side effects!!).

    He said there was no cure and nobody knows what causes it and didn’t believe environment or what I was eating caused it.

    There’s a really simple understanding of this. What you put in your body, comes out your body…correct? It determines you health? Correct? If you body doesn’t tolerate certain foods, then you cut them out. How a doctor can’t rap his head around that one baffles me.

    Adam, I would totally go the way your going and enjoy your life. No matter what, you will never find a doctor who will NOT prescribe you drugs for you condition. That’s their job. If they didn’t, they wouldn’t have a job.

    I’m going for my colonoscopy in Aug. I asked the lady there in the office what was in the fluid I was supposed to take before my examination. “It’s very sweet….lots of sugar”. Well, what a great preparation! Induce a flare before we go get a check up? Ummm….I don’t think so. So I asked her “what are the alternatives? Anything with less or no sugar?” ….she said. “there’s something salty….”. So I went with that.

    Dude, all I can say it….trust your instincts and what’s best for you. You are the doctor. You know more than those doctors about your condition. If they don’t know what causes it and don’t have a cure, they don’t know much more than you do! Ain’t that the truth.

    Trevor

    • Adam
      Adam July 8, 2012 at 10:24 pm #

      Hey Trevor,
      Good luck with the Aug. scoping.

      Hey, let me know how that salty stuff goes down, sounds interesting!

      Good luck my man,
      -Adam

  7. Ricky Lee July 9, 2012 at 7:59 am #

    Hey Guys!

    Well I’m sure you know from my first post on this site that I don’t want to go down the med route EVER!

    We all have different symptoms and severity of this condition, and when you think about just how much this condition varies from person to person, why would they give us all the same meds???

    I’m turning 29 soon but I know I’ve had this since I was 21 or so….. It’s only now I have a label for my symptoms that I have started to worry!

    If I went med free for 8 years or so with no flares and feeling great then why start now? My first flare got under control with some saline from hospital and immodium (and I was crapping quite a bit of blood!) My second flare (mild, last december to feb) I took enemas (for a month) but had started to come out of the flare by changing my diet anyway…

    Fingers crossed I am still symptom free, have got back to my old weight and feel great! I really do think that this could be controlled with diet but then again I have a mild case..

    I really don’t want to take the hard drugs at all. I would rather opt to have my colon out than
    keep masking the symptoms with the terrible drugs they have on the market. The side affect seem to far outweigh the positives.

    I’m not one to always stay positive but I do believe that this can be managed other ways than meds. You just have to look for alternative treatment stories about people with colitis and most of them mention probiotics, aloe, yoghurt and the like.

    Good luck dude and do what you feel is right for YOU!

    Cheers.

  8. Trevor W July 10, 2012 at 5:32 pm #

    Hey Adam! I’ll give ya a heads up on that prep fluid I gotta drink. I think there is still sugar in it, but not as much. Had a flare for a week there because I drank tons of smoothies…they were so good, but they caught up to me. So now I reverted back to the intro diet and slowly introducing other new foods again. After several days I got the solid stools again and once a day. Giddie up!

    That doctor you saw sounds like the most informed so far. At least he had some non-orthodox insight leaning towards natural therapies. He will probably never prescribe you anything other than drugs though…and anything new “doesn’t have side effects” because it probably hasn’t been used long enough or by enough people yet, to do a proper study.

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