ulcerative colitis ebook

6MP and Away We Go

Richele Lynn

me with my daughters!

Meet Richele Lynn:

Hi again! this is an update from my original story (Pooping Machine) I submitted about a month ago.
I was diagnosed with UC about 7 yrs ago. I went for my annual colonoscopy in October of this year and woah what a mess in there. ouch!

Just started taking 6mp a week ago, which is why I am updating my story.

Some More About Me:
My friends and family would (hopefully) say I am a kind, loving and person. I love to laugh and goof around. I often make really whacko faces and sometimes obscene gestures at myself in the mirror when I am having a bad day, or am feeling frustrated. Kind of cheers me up. I am a proud mommy of two beautiful girls (ages 6 and 9). They are the smartest, sweetest, silliest, most wonderful people I have ever known. They keep me alive.

CURRENTLY MY SYMPTOMS ARE…pretty much the same as always. occasional bleeding, urgency, gas, cramping, night sweats, super bad body aches, headaches, fever, nausea…uhhh…i think that about covers it. i don’t think I’ve ever experienced true remission for longer than six months.

6-MP 50 mg Today 75 mg Tomorrow

Ulcerative Colitis has changed my life in so many countless ways. It’s a stressful, bastard of a disease and is so debilitating! every time I leave the house I try to use the toilet a few times, or I won’t eat or drink anything beforehand. But as we all know, even on an empty stomach we can still let one go! I recently went on a field trip with my daughters fourth grade class to the state capitol, Lansing. I was so nervous the entire time, especially after lunch. i was terrified i was gonna need the bathroom and there wouldn’t be one nearby. I specifically told the kiddos teacher that I didn’t want to chaperone a bunch of kids, but would just tag a long. I’m glad I did because halfway through the trip, I was exhausted, anxious and needed to go home. My daughter was very understanding, but I’m sure she felt a bit disappointed. Same story with my youngest, field trip, cider mill. anxiety!

AS FAR AS MY DOCTOR probing my ass all the time, I guess I’ve gotten over that. The first couple of times were pretty embarrassing, but I like to think of myself as a colonoscopy pro these days. I’m fortunate to have a good doctor that I feel comfortable with. I can ask him any question and he knows all the gory details…so yay for him!

Right now I am most concerned about the risk of blowing out my colon with continued flares, year after year. I am so scared that my colon is going to perforate and I’ll need emergency surgery. Colon cancer scares me too, obviously. My doctor has stressed the urgency of getting my disease under control, and prescribed 6mp. I’ve been taking it for a week now, and so far the biggest issue I’m having is nausea, and loss of appetite. On top of that I got a stomach bug from my daughter this week, man that sure sets a UC’er back!

Although it is difficult to tell the difference between stomach flu and my usual day to day symptoms. I’ve lost a little bit more weight and have been finding it difficult to eat enough. Currently I am taking 50mg of 6mp and tomorrow I have to start taking 75mg. I hope the upped dose doesn’t cause more nausea!

Colitis Medicaitions:

list of meds…oh geez

  • prednisone throughout the years. IV and oral. evil, evil side effects. i’ve developed an allergy to it.
  • asacol on and off. never seemed to work.
  • mesalamine enemas. couldn’t retain long enough to benefit.
  • Imuran. horrible side effects. took that about 4 years ago, short term.
  • hydrocodone. helps with aches, and also seems to slow the poops, especially if i take it at night.
  • I’m also taking a probiotic 250 billion a couple times a week, and then about 50 billion every day. Haven’t been taking long enough to notice any improvement.
  • 6mp. taking currently….

Which brings me to my question for all of you…

I’d like to hear about side effects and experiences with 6mp. I’m talking time frame…how long did side effects last, when did they start? When did you notice it was working? or not? I’ve heard so much good, bad and ugly. Some of the horror stories were almost enough to make me NOT take it, but I figured i had to give it a shot. I’m at the end of my rope now with treatment. I’ve experienced some success with naturopathy, homeopathy, accupuncture, etc. but never long term. so, 6mp it is…for now.

written by Richele Lynn

submitted in the colitis venting area

Tags: 6mp





36 Responses to “6MP and Away We Go”

  1. LauraDecember 13, 2012 at 6:58 am #

    My fiancĂ© just started taking 6mp as well two weeks ago and goes in for his first follow up blood test today. Side effects have been okay for now. He did feel really “out of it” last Thursday but didn’t know if it was just him trying to get sick or meds. He’s been put back on pred 20 mg, so like you I’m waiting to see if this works. He still has to take the Remicade bc the doctor said it would help balance his system so the 6 mp wouldn’t destroy his bone marrow so I don’t know. I’m hoping this works as well. I’ve read horrible stories online and had a breakdown last week. I think the internet it great but also can get to in-depth with information and everyone is different. So you don’t know until you try. I remember when we put him on Remicade and thought that was going to be it because of reading such success but that was a no go, so I’m just taking what my doctor said and that is, everyone is different and we have to find the right solution for you and when we find it we will know. Until then we have to be always ready for what comes next.

    Please keep us updated on how you are. Good luck!

  2. joannaDecember 13, 2012 at 8:08 am #

    hey richele, i’ve been on 6mp two times now.

    the first time was from august 2011-march 2012. i started at 50 mg and my main side effects were high liver enzymes and peripheral neuropathy. i had to stop due to the liver enzymes since they did not go down when i dropped to 25 mg.

    i started again in august 2012 because my doctor wanted to try it again. i was at 25 mg this time and my neuropathy came back, same with my high liver enzymes. so i stopped it in october.

    i guess my body just hates that drug. i’d be worried about going up the dosage if you are so nauseous already. did you doctor give you nausea meds? my ALL-TIME favorite is zofran. it works really well.

  3. AdamDecember 13, 2012 at 8:44 am #

    HI Richele,

    I did some researching on PUBMed and came across a study that was completed back in May of 2008 titled:

    “[The frequency and the course of the adverse effects of azathioprine/6-mercaptopurine treatment in patients with inflammatory bowel disease].”

    There is a list of side effects and the percentages of the patients from the study who experienced them which might be of interest to you. Here is the link:

    http://www.ncbi.nlm.nih.gov/pubmed/18516013

  4. AmyDecember 13, 2012 at 10:31 am #

    6mp and I did not do well together . My LFT’s went through the roof and we only found that out because we ran testing when I got deathly ill. I wanted to sleep all the time but the continuous vomiting got in the way of that. We ran the 6mp metabolite testing and found that I don’t metabolize it properly so my liver was getting the brunt of it Now I take entocourt daily. Remicade every 4 weeks and a cocktail of librax and dilaudid every 8 hours for the cramping

    Good luck

  5. SarahDecember 13, 2012 at 10:40 am #

    Hi Richele,

    I was diagnosed with UC three and a half years ago. I’ve had two big flares, both within two weeks of each other, and the first being when I was diagnosed. I was weening off prednisone when I was discharged from the hospital when I started taking 6MP and Lialda. I’m not sure if the 6MP could have gotten me out of my flare alone it was so bad, but tapering off the prednisone and starting the 6MP and Lialda I think is what’s kept me in remission. The only side effects I noticed were from the prednisone: puffed up face, a big appetite and I hardly ever slept. After I was tapered off the prednisone (a few weeks, maybe a month?), the 6MP and Lialda have truly been life savers for me. I haven’t had a flare up since. (knock on wood). The only side effect I’ve really noticed is some hair loss (nothing noticeable, just seems like more than I ever lost in the shower and on the ground than before I had UC). I have been nauseous before, but very rarely. I notice it’s when I forget to take my meds until the middle or evening of the day and then go do something really active like work out or run around on my feet waitressing part-time. So just take them in the morning with a filling breakfast and lots of water!

    If you’re current flare is bad, maybe talk to your doctor about going on prednisone while you’re starting the 6MP to get you out of the flare. I know that stuff is the devil but it works like magic, at least for me. I know everyone is different, but this is my experience with these two drugs and they seem to be doing what they’re supposed to do.

    Best of luck to you!! I’d love to hear how you’re doing in a few months.

    • joannaDecember 13, 2012 at 11:00 am #

      sarah, richele mentioned she’s allergic to pred. i don’t think it would be good for her to start that again! haha

  6. SarahDecember 13, 2012 at 11:02 am #

    Oh, woops!! I missed that part!! Sorry :/ I just remember reading evil side effects.

  7. bevDecember 13, 2012 at 2:57 pm #

    Hi again Richele,

    Damn, I’m sorry to hear you have to take another drug!

    One thing I hate dealing with is nausea…and I seem to get it from everything I have even taken, even asacol. In reading the side effects for 6-MP, it sounds like that is, or can be, one of the side effects, Ugh. I hope that does not happen for you, my friend.

    Hng in there, keep a good watch on yourself, and keep us posted. Maybe this drug will be a Christams present for you…lol?!

    Cheers,
    Bev

  8. Joe T.December 13, 2012 at 4:48 pm #

    Hi Richele,
    I’m glad to hear that 6mp seems to be helping you. For me however, it was not the answer. When I was first put on it, they were trying to wean me off of pred. I’m not sure if my genetic makeup factored into this, but I soon started noticing pain & stiffness in all off my joints accompanied with the dreadful overall fealing that I was 128 years old. As if that wasn’t bad enough, I was still pooping like crazy. I told this to my Dr. & he told me to stay on it for a little while longer to see if it wasn’t just a seperate virus or something. Well, the torture lasted another month & a 1/2 until I flat out told my gastro Dr. NO MAS! He then finally agreeed that the 6mp was just not the answer for me, so he took me off of it. Within a couple days of being off of it, my body began to return to normal as the aches & pains subsided. It was after that experience that I was put on humira which of course also didn’t help my colitis symptoms.

    But I’m always glad to hear when someone finds the right thing that keeps them in remission. But for me it’s gonna be surgery. Hope 6mp turns out to be the one that makes the difference for you. Have a lovely holiday & blessed new year to come!

    All the best,
    Joe T.

  9. TamaraDecember 13, 2012 at 4:59 pm #

    I started taking 6mp on October 25. The doctor also put me on sulfasalazine. I developed a really bad rash all over and experienced nausea and headaches as well. I kept taking the 6MP but stopped taking the sulfasalazine. Since then The nausea headaches and rash have all Gone away (at least not nearly as severe.)and there’s been improvement as far as my bloody stool. Just had urinalysis done today to see how my liver enzymes look. So with sulfasalazine out of the equation I see positive results from the 6-MP. It’s been less than two months though so we will see.

  10. Trina
    TrinaDecember 13, 2012 at 4:59 pm #

    I’ve had UC for 10yrs now. It’s progressively gotten worse. This year I did my first round of 6mp. I was on it for about 5 months. And then decided to get off if it due to the side effects. I have major hair loss and nausea. And on top of it my body wasn’t absorbing enough of the “beneficial” part of the drug. And it was becoming toxic to my liver. So needless to say I will not go down that route again. Although it did get me out of a flare up. While taking it with Pred. I am now in remission. And am trying my best to stay in remission with a positive attitude and a healthy diet. Make sure you listen to your body and do research on the drugs that you take. Sometimes the side effects aren’t worth it. 6mp is known to deplete bone marrow. So be careful. Good luck.

    • LauraJanuary 2, 2013 at 7:16 am #

      What diet do you follow? Scd? Please give me any info, I just went off 6 mp, in hospital and want to take probiotic and a new diet while weaning off the 15 mg prednisone . Thx

  11. shelly in maineDecember 13, 2012 at 6:42 pm #

    Hi Richele,
    Good luck with the 6mp…it is really important to not stick your head in the sand so to speak when taking these meds with lots of side effects. You need to read about the potential side effects on the sites like pub Med like Adam said, drugs.com, rxlist.com, etc and read the patient and physician side effcts…this is very serious drug used in chemo, leukemia….so be informed-a lot of times Dr.’s don’t want to blame the meds! That’s how they are trained!
    Best of luck and health, Shelly
    (I was allergic, being masked by prednisone taper…I felt awful on it and now have a forever rash-bumps, but that’s just my experience….keeping my fingers crossed for you.)

  12. NICKYDecember 14, 2012 at 10:08 am #

    HEY RICHELE I READ UR STORY AND LIKE UR SELF IVE BEEN STRAIGHT UP BATTLEING GLADIATOR STYLE WITH THIS BEAST CALLED ULCERTIVE COLITIS AND JUST REFUSE EVER TO GIVE UP LIKE IM HOPING U DOO LADY!!!!

  13. NICKYDecember 14, 2012 at 10:32 am #

    HEY RICHELE AND ANYBODY THAT IS READING THIS IM 37YR OLD AND BEEN AN MMA FIGHTER WRESTLER AND BOXER 4 20YRS PLUS IVE BEEN BATTLING THIS BEAST CALLED ULCERTIVE COLITIS GLADIATOR STYLE AND ULTIMATELY REFUSE DID I SAY REFUSE TO GIVE UP!!!! IVE TAKEIN ALMOST ALLTHESE MEDS ASACOL PRED AN MP6…MP6 IS A TYPE OF KEMO THERAPY SO U NO AND THE SIDE EFFECTS R HOORIFIC THIS BEAST ROBS U OF VITAL NUTRIENTS AND VITAMINS WHICH4 ME DID NOT ALLOW ME TO THINK CORRECTLTY!!BEING THE FIGHTER AND BEAST MYSELF I ULTIMATELY HAD TO WEIGH OUT THE PROSAND CONS OF ALL THE MEDS ITSNO COMPARISON TO ME THAT THESE MEDS SIDE EFFECTS ARE MUCH MORE DANGEROUSE THAN WHAT I OPTED TO DO I FIGURE EVEN IF THE MEDS WORK STILL TO ME THE ANTICAPATION OF IT RETURNING CAUSING HAVIC…WORRYING IF THE BIG C WILLEVER ARRISE SO AS I SAY AGAIN 4 ME ITS A NOBRAINER, THERE SIDE EFFECTS AND THE CONDITION MY BODY MIND AN SOUL WERE IN BECAUSE OF THIS REALY MADE ME SOUL SEARCH WITH THE ULTIMATE FIGHTER ON MY SIDE HIS NAME IS GOD!!! SO I SAY THIS RICHELE AND WHO EVER IS READING THIS TO EVALUATE ALL CONDITIONS AN MEDS YOUS HEAR ME???? I ULTIMATELY CHOSE TO TAKE ALL OF MY LARGE INTESTINES COMPLETELY OUT AGAIN I SAY 4 ME THIS WAS THE BEST EVER DESITION 4 ME MY BEAUTIFUL WIFE AND 3 KIDS. AND 4 THE MEN DO UR SELF THE BIGGEST FAVOR EVER GO TO UR DR GET UR TEST LEVELS CHECKED AND IMMEDIATELY GO ON A REPLACEMENT THERAPY ITS WORKED WONDERS 4 ME ANY QUESTIONS FEEL FREE TO ASK!!!

  14. Richele
    RicheleDecember 22, 2012 at 9:17 pm #

    Thanks for all of the feedback! I went on a road trip to New Orleans for five days and just returned home. Didn’t have any “accidents” in the Crescent City, thank goodness…but was incredibly nauseous for most of the trip. I actually barfed this morning…ugh the worst!
    Also, headache, and possibly more hair loss than usual…definitely keeping my head out of the sand on this one.
    I’ll update soon.
    Best holiday wishes to all of you!
    R

    • LauraJanuary 2, 2013 at 7:33 am #

      Hi Richele,
      I am new to this website, I hope you are continuing to do well. I am 47, have husband and 3 children. I have had UC for 17 yrs, but been in remission for ten yrs and never had it this bad. I do not want to scare you telling a horror story about me because everyone has diff reaction. i hope yours turns into a better experience with 6mp. Mine was not. I was on 6 mp for several weeks and never saw improvement. I was nauseous constantly and achy bones. I became so ill with fever n aches and went to hospital to find I had pancreatitis from the med’s. then I left the hospital after 5 days and became so ill that my husband had to call 911 and found the antibiotic for pancreas gave me c-diff!!! I am still in hospital and miserable in a isolated room because it is severe infection.
      Now my gastro wants me to start remicade but I am to scared and think I am going to try probiotics n the diet. I am still on prednisone , 15 mg and don’t know when they will wean me off.
      I wish you well, keep me posted!
      Laura

      • bevJanuary 2, 2013 at 9:30 am #

        Remember Laura…YOU are the boss…not your doctor. If you have a bad feeling about something, trust thta feeling…

        I am crossing my fingers SO hard for you re the probiotics. Never miss one. Take them religiously. Before you take the L-glutamine, make sure that your kidneys and liver are healthy, as well. Somebody mentioned that on this site some time ago…L-glutamine can actually be dangerous if there is anything wrong with your kidneys or liver. You’ve now had pancreatitis…ask a doctor or a health professional if you can safely take the glutamine, okay?

        Bev
        :)

        • LauraJanuary 2, 2013 at 8:08 pm #

          Ok thanks, I will. So far all other test have been good. Thank god . Started probiotic today and drbis going to get me a script for vit D as well. Still,in hospital and hoping to go home by Friday . Thx for the info!

          Laura :-)

      • GeorgiannaApril 27, 2013 at 3:45 am #

        Have you tried a fecal transplant, that is supposed to cure people with UC and also those with Cdiff? Check out this Website: http://fecalmicrobiotatransplantation.com/FMT/contact.html
        it has so much good info. And also fecaltransplant.org/.

        I am going to do the Fecal transplant in the next upcoming months and will post how I do on this website. I’m going to try it from home (dr. Mark Davis will walk you through this if you want to call him– info is on the website). 10 days of fecal transplant enemas. I’m currently trying to find a good donor.

        In addition to this I recently learned about a drug most doctors don’t tell you about, but it heals people with Autoimmune diseases such as ourselves. Look up “Low Dose Naltrexone or LDN.” This is a drug with virtually no side effects, except possible trouble sleeping or vivid dreams. It has helped countless people. My doctor is going to prescribe this to me as soon as I am able to ween off of codeine, cause you can’t take it if you are on narcotic pain killers. I will also update everyone after I try this.

        I have had UC for 3 years and have been in a constant flare, in and out of the hospital. Did prednisone, and remicade, which I’m still recovering from– it messed up my hormones, gave me arthritis, lost 2/3rds of my hair, dried out my skin, lost most of my sense of smell. Very aweful drug. I’ve also tried colozal, rowasa, canasa, and lialda, entocort. Colozal is the only one that seems to help somewhat…

        Since I’m always getting all the side effects of drugs, I’m too afraid to try any other drugs like 6mp or imuran.

        I have recently read about how Nicotine can put people in remission as well. I’m sure most of you have read or heard about how smoking can stop people from getting UC, but that doesn’t mean you have to pick up smoking! Nicotene replacement therapy works for some with the patch, lozengers, or e cigs. I am currently taking the 7mg patch (most docs say to start off at 14mg, but I would rather work up to that level so I dont get side effects of nausea and such), and in just two days I’ve seen increadible improvement. I’ve had less abdominal pain, less gas, and less blood…. I’ll let everyone know if this keeps getting better. But it’s worth a try for other UC’ers out there who can’t tolerate the dangerous meds. Nicotine is like an angelic medication in comparison.

        Btw I hope you get better Asap. If you need a name of a doctor who does the fecal transplant in your area let me know and I will provide it to you.

        Sincerely,
        Georgie

        32 yr old UC flare for 3 years
        Current meds: Colozal 3 x 3/day. VSL#3. Nicotine patch (just started this– there is a bunch of information about people who take Nicotine replacement therapy for UC and go into remission! I’ve only been on it for 2 days and so far I’m seeing a positive change). Curcumin, Fish oil 800 mg/day, Vit D3.

        • GeorgiannaApril 27, 2013 at 3:47 am #

          PS: Btw, I just started VSL # 3 today (this is a probiotic that’s supposed to help people with IBD) because I didn’t realize until recently that your doctor can prescribe it in such a way that your insurance will pay for it. Without insurance it costs waaay too much $$!

  15. Richele
    RicheleJanuary 2, 2013 at 8:18 am #

    Laura,
    One month in and my diarrhea has slowed, but I am still having a lot of cramping, urgency, gas, night sweats, fatigue, HORRIBLE nausea…I throw up some mornings, I’m achy, and overall I feel worse than I did before starting the medication. I have really bad days where I am so tired and lethargic, I can barely function. Is it all worth it? THAT is the million dollar question.
    I’ve had C-Dif more than a few times, so I know what you’re going through. It finally cleared up last year and hasn’t come back, knock on wood. I’m so sad that this is what it’s come down to, but I needed to try something drastic since diet and other holistic approaches haven’t helped in the past.
    I hope you are feeling better and I wish you health in the new year.
    Richele

    • bevJanuary 2, 2013 at 9:25 am #

      Hi Richele…on my…the side effects sound absolutely awful. Yes, that million dollar question is…is it worth it? I can’t say. You will have to see if it really helps you or not.

      I feel for you. There is nothing I HATE more than nausea and/or vomiting…geez girl…

      :)

    • LauraJanuary 2, 2013 at 8:12 pm #

      Wow, how often do they check your blood levels? You may have something else going on or infection . I hope you improve quickly! Pls keep us posted and good luck!

      Laura

    • GeorgiannaApril 27, 2013 at 3:58 am #

      Hi Richele, I don’t know if all my replies update you, but I replied under someone else’s post so I just want to make sure you get this info too:
      Fecal Transplant therapy is known to cure most people with UC. Have you tried it or looked into it? You can also do it from home if you can’t find a doc in your area (just call Dr. Mark Davis in Portland OR and he will explain the procedure). Here is the website: http://fecalmicrobiotatransplantation.com/FMT/contact.html

      Also, look up info on “Low Dose Naltrexone or LDN”, a miracle drug that you haven’t heard of because drug companies would not make any money off it. Only possible side effect: vivid dreams or sleep disturbance. You can be on it while pregnant or bf’ing too. It helps and cures many people with IBD. You will have to do your research and present it to your doctor with knowledge cause some of them are completely unaware of this drug and you will need to have a pharmacy that will compound it in your area. My doctor is going to presribe it to me as soon as I ween off the codeine. http://www.lowdosenaltrexone.org/

      Another option is Nicotine therapy. Many UC’ers go into remission after starting the patch, ecigs etc (i’m not one to condone smoking real cigs instead). Most people who used to smoke and then quit… a few years later would get UC. I just recently started the patch and in just 2 days I’m already seeing positive benefits: less blood, less urgency, less abdominal pain, no gas! I started on the 7mg and will work up to 14 mg patch (which is the recommended dose for UCers, but some people like myself may benefit from the lower dose as I am now).

      Good luck with everything!

      Sincerely,
      Georgie

  16. Richele
    RicheleJanuary 2, 2013 at 10:57 am #

    Thanks, Bev :)
    I’m trying to stay positive and just get through it, but it’s definitely got my spirits down.

  17. bevJanuary 2, 2013 at 11:18 am #

    I’ll bet Richele…I’ll bet.

    Please remember how we’re all here for you, okay:)

  18. shelly in maineJanuary 2, 2013 at 11:57 am #

    Richele,
    Are you still taking the 6 MP?
    Rechecked for c diff? Pancreatitis is also increased…blood work rechecked??

    • Richele
      RicheleJanuary 3, 2013 at 8:29 am #

      Hi Shelly!
      I have been going in for blood work weekly to check my levels. I have a Dr. appt next week, to discuss dosage and everything. So far I haven’t heard any news from the Dr. I’m assuming (perhaps stupidly) that my dr will notify me if anything is wrong. I am thinking of looking into a new GI, perhaps at U of M. I feel like I need more attention and more contact from my GI than I am getting. I’ve been seeing this one for many years, but I guess it’s always good to keep my eye to the sky and get second opinions.
      I’ll update my progress soon. Thanks everyone for the support and well wishes :)
      Richele (also known as Shelly) ;)

      • shelly in maineJanuary 3, 2013 at 8:47 am #

        Richele, Shelly!
        Always go with your gut!! :-) I definitely would call…it can’t hurt to ask for the feedback. I often have them send me results, but my regular doctor, a D.O. always hands me a copy and goes over Everything!
        I felt absolutely horrible on 6mp…I’ll/nausea, literally like I was carry an elephant on me…plus I was allergic like I said.

        I have been through all the meds and am now Med free for just shy of a year and a half and on my 2nd …bad flare, but struggling thru with 2 different herb mixes from my chiro, Mega dose of VSL3-Rx strength, Mega doses of omegas, vit d and a few other things plus 99% SCD…very,very slowly. I hate the diet(sorry Adam and scd’ers) but I know it is helping…I just know my body will need a few things back in eventually that are low Carb/low starch. The book and the websites and Adam’s, too are essential.

        I don’t know if it will get me back 100%, but I have a pred. Back up plan and apriso…both I am quite intolerant to, but figure if I need it! My doctor and i are hoping for some Murphy’s law that if I have it…I won’t need it! ( knock on wood!).

        Anyway, thought that info. might help. Hang in there.
        Best, Shelly…a.k.a. Rochelle! My real name! :-)

  19. Richele
    RicheleJanuary 3, 2013 at 10:54 am #

    Thanks for this :)
    YOU hang in there, too!

  20. lindsay marksMay 4, 2013 at 11:08 am #

    Last year my doctor put me on MP6 because he didn’t want me to go on Prednisone every 6 or 7 month when I’d get a flare up and need to go on Prednisone. I can only say I lasted for 2 1/2 weeks and felt so horrible I just stopped. Since he was on vacation I couldn’t let him know. But one thing I know if something makes you feel that bad it can’t be good. Last year I took a probiotic called primal Defense and it worked awesome for 7-8 months. I was off the Lialda. But then I slowly started getting symtoms of a Flare. I waited till it got bad and called the doc for some Pred. It got me back on track…thank god. I have been battling the alcohol issue. What can I say, I like a drink come 6 o’clock but I think it’s time for me to wise up and do the right thing…stop. Maybe once in a while but that’s it. Right now I have the worse joint pain…I feel like I’m 200 years old. This site is so helpful. I am so grateful Adam created this. All the people that tell their experiences are so helpful. Much more than any GI I’ve been to and I’ve been to 5. If you don’t have this disease you just don’t get it. My current doctor said 1 drink a nite is ok but usually one ends up being two…so why bother. Thank god for the Green Club…big help.

  21. J. SanchezJune 26, 2013 at 9:28 pm #

    Hey first I’m sorry to hear your having so much trouble with UC. Well I’ve been on 4 pills 3x a day of Asacol and I take 50mg of 6mp I’ve been on 6mp for about 3 years now and I have only noticed when I do get sick it takes a few days longer to get better and when I work out it takes a lot longer to get over being sore. But in all honesty I want to get off 6mp my doc is doing blood work on me every4-6 weeks to make sure my liver enzymes are ok and it’s getting really annoying. So I’m starting the SCD diet to see if this works because I’m tired of going to the doc to have blood drawn summer is here and I don’t have time for that lol. Well I hope you feel better and hope this has helped.

  22. PamJanuary 14, 2014 at 7:59 am #

    I have been in a flare since the beginning of September. It was a very slight flare that has ballooned into a whole colon flare. I am so angry at my gastro doctor that words cannot explain it. I asked for prednisone to nip it in the bud so to speak right away. He said Prednisone is SOOOO bad for you. Instead he gave me suppositories and upped my dosage of Colazol. A month later he kept insisting that he needed to know what was going on down there so I agreed to a flexible sigmoid. Nothing new, only area affected was the last few inches. He changed my meds and gave me one week of 10 mg. Prednisone. That did nothing. Everything kept getting worse as far as symptoms go. Then we tried Uceris. Expensive and did nothing. Next another new med, Asacol and enemas. Still getting worse. Next up 6mp. BAD NEWS! I felt horrible right away and in two weeks he said to increase the dosage to two of the 6mp a day. That night I became violently ill. Nausea, diarrhea and every other horrible thing. Red spots on my chest. I called and they took me off the med. Meanwhile I started having a horrible pain under my ribs on the right side and a pain beneath the breast bone. They decided it must be my gall bladder. A visit to the surgeon revealed it was not. Next a CAT scan because I am bloated and feel awful. Now the WHOLE colon is inflamed and sore. I am so frustrated with my doctor! I am tired of being a guinea pig for your disgusting drugs. I am worse than when I first came to you and I blame him. He wanted me to go on Remicade and I said NO! If I had that bad of a reaction to the 6mp, I didn’t want to get stuck with all of those chemicals in me. By the way, I have been ill constantly since Thanksgiving when I quit taking the 6mp. Everything from the flu twice to a two week sinus infection and sore throat. He doesn’t like Prednisone, so he would rather I just let my intestines turn to mush and suffer. Time to find a new gastro!

    • bevJanuary 14, 2014 at 9:19 am #

      OMG, Pam…omg…

      UC drugs are SO bad for us. I just wish they were passĂ© and the way to treat UC was all natural. In the future, that’s how it will be. Enough of us are getting worse after taking the meds and I think the medical community is realizing this….finally.

      Case in point…ME. You all know my story…15 years (or so) on meds. All they ever did was make the UC worse. In fact, every time I upped the dosage of asacol, the UC progressed instead of regressing. I took matters into my own hands when the GI said it was time for Imuran and remicade. AS IF!!! Went off the asacol and went natural (probiotics, L-glutaime, etc). Everything changed for the better. Total remission for two years! Got that flu shot back in October…a few days later, started to flare. Treated it MYSELF by upping the probiotics, etc…am now in remission again!! NO MEDS!!!

      It is SO possible to do this medication free. Confidence. Power.

      Cheers:)

  23. RikkidanJune 3, 2014 at 12:08 pm #

    Hi,

    Its a while since you posted this query but I have something to share that may be relevant.

    Here is my story in short form :-)

    Nov 2011 : DX with pancolitis and put on mesalazine .
    Dec 2011 : mesalazine nearly killed me. severe kidney problems went away after stopping mesalazine.
    Dec 2011 : Commenced an 8 week course of prednisolone. it is seriously mental stuff. Put me in remission, drove me out of my mind and I lost a molar tooth. But hey, I still had my colon……

    Feb 2012 : tried pentasa to keep me in remission. didn’t work and began flaring

    Mar 2012: tried imuran ( azathioprine ), but gave me pancreatitis after a few months.

    Sept 2012: quit imuran. went onto 50mg/day of 6mp ( 6-mercaptopurine ) . Works well to keep me in remission. Makes me tired so tend to take it at night. It started working after 1 day…… though doc said it would take 3 months……As it is an immue system suppressor…..it also stops my nasty hayfever…yippee….Need blood tests every 3 months as it can screw with white blood cells and neutrophils.

    April 2014 : 6mp made me really tired so I went off it for a few weeks. Began having dreaded diarrhea so took 25mg of Tramadol daily. Absolutely marvelous stuff. Normal bowel movements and happy mood all day……

    June 2014 : Back on 6mp. Only drug on the planet that works for me with tolerable side effects. (Aside from Tramadol which I would rather keep for my migraines )

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