Where Did My Ulcerative Colitis Go?

bev colitis canada accutaneIntroduction:

I’m Bev…I’m a 48 year old gal…I live in beautiful British Columbia, Canada…I was diagnosed with proctitis in 1999, then UC a few years later…now, I apparently have pancolitis (total colon involvement). I have had this disease for 13 years.

Symptoms:

None…I can’t believe it!!

I was diagnosed in 1999, after four courses of the acne drug ACCUTANE, so, yes, I believe my UC is drug induced.

Back then, there were no warnings in the drug info and my doctor said nothing of possible gastro side effects. The disease has steadily spread throughout my colon over the last 13 years, after taking the odd antibiotic over those years, for infections. The last time was AVELOX, for pneumonia, two Christmases ago. My colon has been totally screwed ever since.

I started out on just 6 asacol daily, and proctofoam, and that worked successfully the first time. The next couple of flares required a higher dosage of asacol, and asacol enemas. That all worked. This last flare, which has lasted over a year and a half…well, nothing has worked, I am a very ‘bad’ patient, as I refuse to take steroids (prednisone), immune suppressors (imuran, humira, etc), or remicade. No way am I putting ANY of those drugs in my already drug ruined body. Are the doctors kidding me? NO WAY. I tried upping my asacol to 12 per day, and use the asacol enemas, but to no avail. I was just pooping water and blood, and having terrible pain while doing that, and all the rest of the day as well.

Okay, so I decided to try something natural, finally. Anything natural that would work. I began taking a strong probiotic, along with the 12 stupid asacol, that seemed to be doing absolutely nothing (but, the docs scare you, and tell you that you MUST stay on them forever, for maintenance of remission, which I dutifully have, for 13 years). Anyway, It took a few days on the probiotic, but first, the pain went away. Then, the blood started disappearing. A month in, and after adding 6 acidopholous per day (another probiotic that was in the fridge, because my husband always takes it), I decide to taper the asacol off. Diown to 8, then 6, then 4, then 2…now none…yep, NONE!!! This morning, after three days of pooping pretty firm…I had one of those EPIC craps!!

You know…the ones that come out

the way that Dr Oz, and Oprah

said they were supposed to?!?

I cried with joy. I haven’t seen that in over two years! I know, it’s pretty sad how excited we UC sufferers get whe n something like that occurs…whoopee!!

I know it’s early days…and I know that I am getting very excited very soon, but I can’t help it! There is no urgency, no pain, no blood….just plain old fashioned normal poop goodness!

Now, tell me, why did this happen to me? Why am I on no meds for almost a week now? Could it be that there are different causes of UC, and mine was purely and simply drug induced? All those antibiotics killed my good bacteria? Why did none tell me that I maybe had options other than harsh, body destroying drugs?

I will keep everyone posted. I am taking one 50 billion critical care probiotic capsule at bedtime, and 6 acidopholous capsules, two three times a day, about a half hour before meals…oh, and one banana every day…I don’t know why I mention that. either than it seems to help me. I’ve heard this is not the case for everyone. Other than that, I am doing absolutely nothing different. I’m eating whatever…I don’t follow any specific diet…never have.

Lastly, I am not telling anybody to stop their meds. That is up to everyone individually. I’m just saying that I did. I was tired of taking them, and not feeling any better. I was even considering surgery, because I would rather that, than any more drugs. How drastic, that that has to be one of our choices…

Cheers,
Bev:)

 

Has anyone else done this…gotten entirely off the meds? Has it lasted? I am so afraid that it won’t last. I mean, how could it be this easy? Why did this work? Will it last?

 

Where I’d Like to Be in 1 Year:


Right where I am right now!!! Please!!!

 

Colitis Medications:

Was on Asacol, in different dosages over the past 13 years. Worked at first, but slowly didn’t.

Tried Asacol enemas off and on. Worked for a couple of flares, and then, didn’t.

Refused any other meds like imuran, prednisone, and remicade (probably because of what drugs have done to me…antibiotics are the enemy

written by Bev

submitted in the Colitis Venting Area




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54 Responses to Where Did My Ulcerative Colitis Go?

  1. Adam
    Adam March 26, 2012 at 7:24 pm #

    Hey Bev,

    GOOD LUCK MOVING FORWARD!!!!

    Can’t wait to hear how things go for you over the next few weeks! Please keep us updated!!!! we’re pulling for you out here in the Bay AREa!

    –Adam and Michaela

    • Bev March 27, 2012 at 3:54 pm #

      Thank you, you two!!

      Right back atcha!!

      Bev:)

  2. Erica March 27, 2012 at 2:16 pm #

    Hi Bev!
    I just love your spirit and enjoy reading your post when I see your name. Best to you and best of luck going forward!!I have to say, I have never taken the drugs my dr gave me from day one. Its been a year and half and doing great.. I have mild to mod UC….maybe crohns too but I never went back to dr after that day to find out. Over the last two months meditation has worked wonders for me and green smoothies the most. I, like you hate meds (AS EVERYONE ELSE) but my strong headedness just could not bring myself to take the meds. OUR MINDS our POWERFUL. Everyday i live like I am HEALED AND healthy…not sick with UC. In fact, I don’t look back in the toilet anymore………..I’m moving FORWARD. I FEEL I am HEALED!. I have changed my thoughts completely!! I have constructions paper with positive words on my wall. Even a big one in front of me when on the toilet the says”fORWARD ONLY”! I refuse to look back…. Bev, I am rooting for you to only get better and better…..keep us posted!

    • Bev March 27, 2012 at 3:53 pm #

      And, hi to you, Erica!

      I am so happy to hear that I am not the only one out there who flat out refuses the drugs that are prescribed for this ulcerative colitis situation. I often wonder, you know, if the drugs don’t do more harm than good. What I mean by that is, this disease cannot be ‘cured’ supposedly, yet drug after drug is prescibed to us, to once again, put it into remission. Time after time, I read on this website, people say that each drug eventually fails to work anymore. I think to myself, and out loud…then, why put them into our bodies at all? If anything, they just may hurt us in the long run. They really aren’t doing anything, other than basically helping to stop bleeding…for awhile. Until that fails again…I’m so sick of it…it’s such bull….

      Why not try and treat it with probitics, meditation (like you said), maybe diet for some people, and other natural things that we have all heard about over the course of each of our respective illnesses. I mean, why not, right? What have we got to lose? It’s alot safer, for sure. You don’t feel as crappy, either. Those stupid medical drugs…

      I just cannot get over the doctors, rolling their eyes at me, when I refuse what they are trying to prescribe me. The bull that they try and feed me. The next thing they want to try on me! After that whole ACCUTANE debacle, what do they expect from me? I mean, really?!? I sometimes wonder if they would take these drugs themselves…or prescribe them to their wife, or mother, or even their own children. Somehow, I kinda doubt it.

      Cheers Erica…I love your posts too!

      Bev:)

  3. uma March 27, 2012 at 8:48 pm #

    A Great, positive and encouraging story. Way to go.Probiotics it is.

  4. Lara
    Lara March 28, 2012 at 8:04 am #

    Good job!! I’m so happy for you!! :)

    I think my UC is also drug-induced. I started suffering from adult acne as soon as I hit college. Finally, I had enough & went to a dermatologist. She put me on doxicyclene (spelling?). I was on that for a week & it really started to upset my stomach. You know what I mean!! After a month of that, I had enough & asked to be put on something else. So I went on Aldactone for a year. It cleared up my acne (which was great!). However, my stomach issues never really resolved. I never went back for my yearly check-up (I just kept forgetting to make the appointment). Anyway, my stomach issues remained the same for another year & I just figured I’d live with it because it wasn’t too bad. Until I went into my first flare….. So, it’s almost been a year & I’m on Remicade now.

    I just wonder if anyone else took one of the acne drugs I took & also had these problems?

    • Bev March 28, 2012 at 9:17 am #

      Hi Lara,

      I am sure that lots of people have acquired UC because of acne drugs! Most of them are antibiotics. Accutane is an insanely high dose of vitamin A, and not an antibiotic, but I was also prescribed minocin, at one point, for acne as well, and it caused yet another flare of my UC. Minocin is an antibitic, which, of course, the dermatologist did not make clear to me. Accutane was actually invented and used to kill colon cancer cells, and when it was used for that, it was found to also dry up all the oil in the skin, thus, now being used for acne.

      You know, apparently there is this ‘epidemic’ of irritable bowel syndrome diseases, like UC, Crohn’s, diverticulitis, etc, in these new times. It has been attributed to ‘too clean an environment’. That may be a part of it, but I really believe that some illnesses, and drugs, cause most of these gastric problems. If each one of us with these diseases reflects back on our lives…what prescriptions have we taken over the years? Even as far back as childhood. Did we maybe have an ear infection, and were prescribed antibiotics? Are some of us more sensitive to said drugs? Perhaps, it may only take one time taking the drug for a problem in our body to start? I think so! I really do.

      Then, once our colons are ‘screwed’, we are told that this disease is forever, and that we now have to take even more dangerous drugs, to put it into ‘remission’. Seriously? Am I the ONLY one who realizes how totally ludicrous this is? It makes me laugh out loud…and not in a good way.

      Sorry, I always end up writing a novel, and getting so worked up. I am 87.6% Italian, so it’s a damn good thing I’m typing or my hands would be flying all over the place, like they usually do when I am trying to make a point. I AM PISSED OFF that I have UC…FOR LIFE, APPARENTLY…and I’ll be damned if I am going to take any more drugs. I don’t care how much the doctors roll their eyes when they see me, or how difficult they think I am. I know I talk a big talk, but I plan on walking that walk.

      Cheers everybody…I have to go take a walk…I’m all frustration at the moment…I’ll get over it, I always do!

      Bev:)

      • slingshot March 28, 2012 at 12:34 pm #

        This is very interesting,
        A Swedish lady having UC have written a book and came to three conclusions.

        UC can be caused by one or all of these three factors:

        1. Wrong bacterias in the intestine system
        2. Candida (to much sugar or to much antibiotics)
        3. Stress

        Find your cause:

        1. Did you eat a little to much sugar and cookies, also you had that soda.
        2. Try spitting in a glass with COLD water, FIRST thing in the morning, let it rest for 5min. If you have very long “threads” comming down from the spit, you have Candida in your mouth, 1-2cm is normal for everyone.
        3. Everyone have different periods in life where we do different things, try finding out if you can reduce stress in your current situation of life.

        With these three factors in mind lets build up three solutions:
        1. Probiotics in combination with SCD diet.
        2. Probiotics (especially Lactobacillus acidophilus) but also other have anti fugal effects. In combination with Candida diet.
        3. Meditate, meditate, meditate, and sleep and rest. A lot of people are feeling better with meditation, sleep and mental stress reduction (these all helps the body to reduce stress)

        The problems

        SCD and Candida diet can be pretty hard to combine.
        We should look for a ultimate UC diet, or find a way to tell for sure which of the causes make the most inpact in your UC.

        • Bev March 28, 2012 at 12:59 pm #

          This all makes so much sense, doesn’t it?!

          Fantastic!

          I believe a cause and a cure will be found…and theh cure may just be a simple as REPOULATING OUR GOOD BACTERIA!!

          I can hardly wait for that day, and it will come.

          Bev:)

          • Bev March 28, 2012 at 12:59 pm #

            SORRY FOR THE MISSPELL…THAT WAS REPOPULATING…

  5. Char March 28, 2012 at 1:09 pm #

    In response to Lara, Hi my names Charlotte im 22, i am currently awaiting diagnosis.I am due my 4th attempted colonoscopy next month. My problems all started in April 2011 when suffering with a severe sinus infection, i was given four courses of doxycycline and have never been the same since. I ended up with Helicobacter-Pylori which is a stomach bacteria caused by too many antibiotics, i then contracted C-diff and have been suffering with all of the UC symptoms ever since. I truly believe that perscription drugs are what causes alot of people to suffer with their UC.Its been confirmed by my colorectal surgeon that its what has caused me to contract C-Diff and possibly now UC.I’m now doing my best to try to control my bowel problems with diet and probiotics. Iv been told that i will never be prescribed anti biotics again as they have already damaged me beyond repair. There really should be better information out there for the general public about how dangerous antibiotics can be.
    xx

    • Bev March 28, 2012 at 4:16 pm #

      OMG Char…

      If that isn’t proof enough!

      Yep, it’s drugs! Of course, the doctors will never tell us in any difinitive way that presription drugs have wounded or hurt us beyond repair because what would happen if they were honest and up front about that, right? Would we trust them again? Would we just accept the drugs that we were prescribed any more?

      Wow…this is almost like a worldwide epidemic and conspiracy…I’ll try to not think that way, but it’s certainly difficult.

      Cheers to you and stay happy,
      Bev:)

  6. Erica March 28, 2012 at 6:54 pm #

    Hi Bev,

    Yep! I was on a year low dose antibiotic for UTI’S.

    • Bev March 28, 2012 at 7:53 pm #

      Hi Erica,

      Aha! There you have it, right?

      Wow.

  7. Rebeka
    Rebeka March 28, 2012 at 10:18 pm #

    I was on antibiotics very frequently throughout my entire childhood and adolescence. First time on intravenous antibiotics was when I was two years old (!), due to gastroenteritis. Maybe I was already programmed to get UC either way. Then, the first suspected flare happened when I was fifteen, but I’ve always had quick but painful little stomach bugs. Then frequent tonsilitis and UTIs, even Lyme-disease that required weeks of antibiotics. It seemed doctors never really liked prescribing antibiotics, but they always said they had no other choice in killing the bacteria… And only once did I get probiotics from my doctor, but that was three years ago when he may have suspected something but didnt say anything.

    • Bev March 29, 2012 at 4:29 pm #

      Hi Rebekah…

      Ain’t that the truth about having to kill bugs with antibiotics. It sounds like you too, have had your share of them. Man, huh?

      I had tonsilitis as a child as well, and had to actually have an antibiotic shot in my butt! Makes you wonder, doesn’t it? Where did it all begin.

      I can’t say enough about this correlation. I also cannot say enough about how well I am doing on the Critical Care probitic that I am on. One 50 billion-er a day, and everything is going so great! There is no reason why my flare should have stopped so abruptly, but it has, and like I said, I don’t know why!!! I’m just happy to be going to the bathroom NORMALLY, meaning once in the morning, and nice and firm and big..oh, and no smell either! Apparently, and I did not know this, probiotics make your elimination not smell! Gas too! It doesn’t smell bad! In fact, I hardly have any gas, now. I used to go around ‘farting’ my guts out! Not anymore. This is so unbelievable, No gut sounds either…you all know what I mean…the really loud gurgling. It’s completely disappeared.

      Will probiotics work for everyone, if we just keep taking them, and giving them at least one month to kick in? Maybe we stop using them too fast? I don’t know why I didn’t try this sooner. Or, are there different types of UC, where probiotics won`t do the trick…does anyone really know…

      Thanks for so much encouragement and feedback everybody!! I want to get to the bottom of this disease.

      Bev:)

      I shall keep you all posted.

      Bev:)

  8. Blake March 29, 2012 at 10:58 am #

    What probiotics are you taking & how many per day? I recently started VSL3 & wondering if the same? My dr wants me to start Apriso, but I’m reluctant as Asacol & Lialda do nothing for me. I had a bad flare that started last week, so I did start prednisone to get under control, as can’t figure out another way to jolt the system into remission.

    • Bev March 29, 2012 at 4:41 pm #

      Hi Blake!

      Right now, I am only taking one ULTIMATE FLORA CRITICAL CARE (by RENEW LIFE)probitic capsule every day! I have heard about VSL3, but I bought this one right at the health store. The clerk just recommended it to me. I think you have to actually order VSL3. The CRITICAL CARE one that I am taking has 50 billion live whatevers(!)….lol

      I was also taking 6 acidopholous a day along with it, up until a week ago, but they were making me nauseated, so I stopped them, and just the one CRITICAL CARE probitic. It seems to be holding me right where I want to be! Just the one capsule!

      I just hope that this keeps working, although I don`t know why it shouldn`t. I was in remission less than a month into taking it! I must have needed good bacteria, I figure! What else could the reason be that this has worked….I haven`t taken the asacol for almost three weeks now!!

      I could not be more thrilled at the moment. I want everyone to feel as good as I do. I want everyone`s UC symtoms to disappear like mine have!

      Let me know how the VSL3 works for you. I don`t know the cost of that, but the ones I take are only $35 per moth (30 capsules) including tax. The stupid asacol was anywhere from $150 to $400 per month, depending on how many I was taling…and they never really did anything after they cleared up my very first flare, 13 years ago. But, I kept taking them, because the doctor said that I should. Hah!

      Cheers,
      Bev:)

  9. Stan March 30, 2012 at 5:10 pm #

    I am 58 years old. Last summer I started taking something my wife purchased on the internet “Eden’s Sacred Hair Growth Formula”. (I had tried rogaine for a while about 5 years ago so she thought this could be a “healthy” alternative to a drug.)

    As soon as a started taking this product I starting getting loose stools right away. My wife said I my system would become accustomed to it but I kept having loose stools and eventually some diarrhea. I thought; no problem, as soon as I stop I would go back to normal, but this was not the case. I had my annual physical in September and found out I was anemic. The end of October I had a colonoscopy and was diagnosed with UC.

    Anyone have any ideas that this “herb formula” may have caused my problem or just a coincidence.

    Prior to this I was in great good shape running and working out 3-4 per week. Eventually I lost 35lbs. The doctors pretty much insist that I go on remicade with the threat that I will get colon cancer of I don’t. So far I have refused it.

    I very much appreciative of people who are providing stories and comments about this disease. It is very supportive to me.

    • Bev March 30, 2012 at 10:06 pm #

      Wow, Stan…that is truly incredible. I wonder what the heck was in that stuff that you took? You should find out for sure. Perhaps, find another bottle of it and read the ingredients. That is so interesting…I am so curious. I suppose not everything matural is necessarily safe.

      Why would something that is supposedly ‘natural’ cause UC I wonder. I just have to find out!

      I know how you feel about remicade. I was recommended that drug as well, and I am so glad that I didn’t go that route, as now, with the probiotic I am taking, my symptoms are completely gone. How can the doctor say that you will get colon cancer if you don’t try it? Boy, that’s a scary thing to say. Take remicade, or else you could get cancer. That’s never a for sure, just because we have UC. I don’t believe that. Anyone can get colon cancer! I think you always have to go with your gut…your instincts.

      At least, because we have UC, we get screened for colon cancer more regularly than most. At least it will be found earlier, if it does happen to us, but the research hasn’t proven that it is a for sure that we will get it any easier than the general population. If we do, maybe it’s because we take all of these dangerous drugs that people without UC, don’t…

      Hang in there, and thank you for letting us know about this product!
      Cheers,
      Bev:)

  10. Trish March 31, 2012 at 1:09 am #

    Hi Bev. I have caught up with your branding. :) I’m so glad to hear that you are feeling well – what a difference you must feel. Will definitely check this product out – that is a stonking amount of bacteria compared with my normal Lyosan acidophilus, which is 3 billion per capsule, which I take when I can’t eat the SCD yoghurt. One cup of SCD yoghurt a day gives you about 708 billion beneficial bacteria, so that does me normally, but it does also give you galactose, and casein, which are not for everyone.

    Like you, btw, I had acne treatment when I was younger – a low-dose antibiotic for two years. But I don’t think it caused my UC, as that began some years earlier. Definitely put me in a flare for years, though, which the docs said was just IBS, in spite of the blood loss. I reckon I’ve had this damn thing since about 1979 but only got a diagnosis in 2004 after a colonoscopy. In the run-up to that, I researched the meds for UC and said ‘No way’. I took Pentasa for six weeks after diagnosis but by then was so well on SCD that my GI let me taper off it. I’ve remained med-free ever since but it’s a constant balancing act with stress, deaths in the family, a bad car crash, illnesses. This week I’ve had a bug – suspected Norovirus – and have had to go hardcore SCD again to get back on track. But it works for me, so I feel very fortunate. On a daily basis I am well.

    Stay well and happy. xx Trish

    • Bev March 31, 2012 at 12:18 pm #

      Hi Trish…that’s wonderful that you aren’t on meds right now, either. I needed to hear that from someone else. I am terrified to go backwards, you know? I am so crossing my fingers that that ugly UC doesn’t return. I just can’t go back on medical drugs…I just can’t.

      I took an antibiotic once for acne as well. Years after taking the accutane for it. It was called minocin, and the dermatologist didn’t even tell me that it was an antibiotic. He even knew that I already had UC!! What a moron, I say. What doctor does that? Prescribes an antibiotic to someone who has UC, and doesn’t really even need the antibiotic in the first place? It wasn’t an infection…it was for acne again. Of course, I flared like crazy after taking that! I mean, is that not the stupidest thing?

      I am so pissed off at the whole medical ‘thing’ these days. I don’t trust them, or their drugs, anymore.

      Thanks for commenting. I hope you stay off those meds too!

      Bev:)

  11. Katya
    Katiya March 31, 2012 at 8:25 am #

    Hi Bev,
    I also took accutane and that is what I believe caused UC in my body. It’s awesome you are doing so well, and super smart you avoided meds because there is obviously a sensitivity in your body. I have had more weird diseases caused by meds for UC, I should have known! Just wanted to let you know that there are a number of lawsuits against the makers of accutane for causing IBD. Forgot the legal term but you don’t pay them unless you win, which everyone eventually does, then they take a chunk of the settlement. I can’t say too much about my situation for legal purposes, but I believe you are entitled to compensation for the disease this medication caused. The makers were aware of this potential but did not include warnings. There are many law firms in different areas focusing on taking these cases to court. Just saying, maybe your probiotic expenses can be taken care of eventually :)

    • Bev March 31, 2012 at 12:09 pm #

      Hi Katiya,

      Poor, us, right! Stupid Roche, and their Accutane. If it wasn’t for that, I know that I would not have this disease. I did look into a lawsuit, but in Canada, that doesn’t happen. I live in Canada. I know there is an American class action lawsuit againt Roche for accutane.

      You’re right. I am really sensitive to drugs…even tylenol! I only need one, and I can’t feel my legs…lol. Seriously, tho, one tylenol or whatever painfkiller, always does the trick for me. When the dermatologist prescibed me accutane so many years ago, I wasn’t told that anything like this could happen to me. Do you know that they are STILL prescribing that drug to people? The warnings are in there, now, right in the literature, and people are actually willing to take it anyway?! I’d rather have zits! Ridiculous. It should be outlawed. It’s criminal.

      Sheesh…sorry about that. I’m just a bitt pissed off that I am stuck with UC for life, because of some drug that I took, prescribed by a doctor, for acne. That’s why I am so anti-drug now. The gastro doc wants me to try remicade, or imuran…drugs that are even more damaging than accutane, and then wonder why I won’t comply! Duh!

      Thanks for commenting. I appreciate it.

      Bev:)

  12. Bev April 4, 2012 at 12:58 pm #

    UPDATE:

    Just to let everyone know…I am one month off all colitis meds and am STILL SYMPTOM FREE! In fact, I am not at all worried that the UC is going to resurface.

    The only way that I believe it will, is if I take antibiotics again, which I won’t (unless I am dying), or get a severe illness. If either of these should occur, I will stop my probiotics until after said course of antibiotics, or during said illness, and resume the probiotics after I recover from whichever problem. (Apparently, probiotics should be stopped in the event of infection and taling antibiotics, or illness, so as not to help the infection or illness to get stronger…makes sense!) You then resume the probiotics after you are better.

    I think I finally have my UC ‘figured out’.

    It’s that simple! No more meds for me!!

    Yey!!

    Cheers everyone,
    Bev:)

    • Adam
      Adam April 4, 2012 at 6:15 pm #

      YIPPIE BEV!!! way cool! congrats for getting the control back!

      • Bev April 6, 2012 at 9:08 am #

        Thanks Adam…I feel like I’m in a dream!

    • shelly in maine April 5, 2012 at 3:54 pm #

      Congrats first of all! But I’m wondering about the probiotics and giving them up?? I have read both views, but more recent studies have suggested their benefit especially while on antibiotics…isn’t that when you need them the most? Or are you doing the yogurt? The point is to keep your good bacteria…antibiotics take out them all. I think someone recently discussed a therapy, or Adam’s research?that does just that…short of the fecal transplant :-) ew! Let me know otherwise. I too have been med,. Free since this past summer due to allergic reactions,etc,UC for 29+ years of diagnosed uc— now have iritis so would like to know more if you have research since I take VSL3 2+ sachets-1800 billion!! Thanks,Shelly. Good health:-)

      • Bev April 6, 2012 at 9:08 am #

        Hi Shelly in Maine,

        Actually, you are correct! I just talked to a probiotic expert at the health store yesterday, and was told that you should take probiotics along with antibiotics, as long as you ingest them at least two hours apart from each other! That’s even better news! I would hate to have to stop them for any reason at all.

        I just thought I knew what I was talking about in my last post…obviously not…lol!

        Cheers, and thanks for p;ointing that out. I AM SO HAPPY!!!

        Bev:)

        • Myles from BC April 18, 2012 at 12:44 pm #

          Hi Bev,

          That’s great news I am just getting over a flare and have been taking VSL 3 for 3 months now and it seems to help.

          • Bev April 23, 2012 at 5:03 pm #

            Hi Myles in BC!!

            I’m in BC too!

            Great news about the probiotics helping you too. Are you on any other meds at all? Any of those nasty medical meds, I mean?

            Cheers:)

  13. Lauren 22NC April 15, 2012 at 2:35 pm #

    Good for you Bev! I also took two rounds of generic accutane, and now have UC. I started wiping blood while on it the second time, and hoped after I stopped taking them that my symptoms would go away! NOPE! I’ve had UC symptoms for about 2 years now.. but have been diagnosed since January 2011. I’m on colozal and took a round of prednisone for a few months at the end of last year.. but feel the same way about you with not trusting harmful meds at all. I also think surgery sounds more appealing that the harsh meds if it comes down to it. I may go to the health store and look for those probiotics you mentioned. I am doing my student teaching in kindergarten next semester and don’t want UC to flare up and get in the way! When I’m not flared though.. all is well :)

    Shelley in Maine, what do you think caused your iritis? UC meds? or UC itself?

    • shelly in maine April 15, 2012 at 5:53 pm #

      Hey Lauren,
      UC comes with lots of great ailments and Iritis/uveitis is definitely one that some people may get. I am not on meds. as i mentioned and am battling my immune system over some uc symptoms and the iritis, joint pain/arthritis stuff,other inflammation…all connected with UC. I’ve been in the uc game for a long time and have avoided it up to this point so I guess I’m pretty lucky. The irony is that severe cases are treated with immunosupressors which I am allergic to! So here’s to hoping Pred. Forte drops work and no other complications arise from all the above!
      I also work in a school so am constantly battling kid cooties! Be careful at the health food store..research lots and try and only change one thing at a time so you know exactly what works and what doesn’t. Keeping a journal of foods to bm’s is a great way to keep track of things so you can also find triggers. You may want to read the probiotics survey. I have prescription strength vsl…add in a good quality probiotic SLOWLY. The scd diet helps many…Adam does a great job telling his journey in his book with the diet. Lots of info. On his site here,too.
      Good luck and good health, shelly

    • Bev April 23, 2012 at 5:09 pm #

      Hi Lauren…

      I am so tired and sad about hearing things like what you have been through re drugs like accutane. I can’t believe that we are in this ‘forever’ boat because we took a drug that was prescribed by our doctors. Not to mention all the antibiotics taht we’ve probably all taken.

      It really does suck. I wish these things would stop. The fact that accutane is even available on the market seems criminal to me. I am not a conspiracist, but these bowel diseases are a nice expensive byproduct of taking those other drugs. The drugs to treat UC and crohn’s cost a veritable fortune! And, accutane is mostly prescribed to yound people for acne…unbelievable. Then, they have to live with UC for the rest of their lives, like us. So sad!!

      The drug companies should be finding a REAL cure for what they’ve done to all of us!!

      Cheers my friend,
      Bev:)

  14. Tejas April 25, 2012 at 4:42 am #

    Hi Bev,
    last year my 7 year old daughter caught ring worm from schooll and her doc prescribeb her antibiotics for 1 month. After her course was completed she was diagnosed with uc. She has been on asacol (5 pills) daily and have not seen any improvement. Her doc had suggested to methotrxite shots(suppresses immune system). I have read about side effects of that med and iam afraid to give that med to my daughter. Can you tell us what diet did you follow. Are eggs ok?. We havr completely stopped milk but no luck yet. Iam going to put her on probiotics for month and see how it works out. I

    • Bev April 26, 2012 at 11:36 am #

      Hi Tejas…

      So sorry that it took me so long to answer!

      Also, so sorry to hear avout your little girl. How sad is that? It just goes to show you the power that antibiotics can have in some of us.

      Actuall, I don’t follow any said diet. I pretty much eat what I want to. I have heard many good things about the SCD diet…I don’t know about eggs. I’m so sorry. I’m not the person to ask about diet! I wish that I could tell you something that would help.

      As for immune suppressors…well, I think it’s clear on how I feel about dangerous drugs. Immune suppressors are given to people who have had organ transplants, so that their bodies don’t reject the new organ, and also to cancer patients, to slow down the immune system, in turn, to slow or stop cancer growth. As for using it for UC, I think doctors are just grasping at straws, and think taht suppressing the immune system will help put the UC into remnission. It can, but it doesn’t work forever. The Uc Comes back…and then the immune suppressor doesn’t work. It seems like too much danger for too little effect.

      I do recommend probiotics. They can’t hurt you. The one I am on is called a ‘critical care’ probiotic, by ‘Renew Life’ with 50 billion active cultures. It says that children can take it too. It costs me about $35 for the whole month (way less than my $300 asacol bill)! It has a mixture of different probiotics in it. One a day is all I take! I am feeling good on it too. My symptoms have not worsened since I quit taking the 12 asacol pills that I was taking. In fact, the symptoms are almost 100% better. Just a bit of blood (but way less than when I was on the asacol, which was doing nothing), but no looseness, no cramping. I am so relieved! I’ve been off the meds for almost two months now. I hope that I can stay off meds forever. I think I have already talked myself into never going back on them, tho. They haven’t worked for me, so why bother, really?

      Since your daughter must have lost her good bacteria after taking that antibiotic, doesn’t it just make sense to try and repopulate her good bacteria by trying a probiotic? I’m not telling you to stop her meds. We are all different. Before you even consider stopping them, try the probiotic for a couple of months at the same time. Then, if she is feeling better symptom wise, you may want to try tapering the asacol off. Talk to your doctor…always…unless you have one that does not have an open mind. If you go in to the doctor, armed with the knowledgs of how she is doing after trying a probiotic for a couple of months, the doctor may just listen…

      Chgeers, and all the best. I hope I’ve helped in some way at least!

      Bev:)

  15. Katrina July 5, 2012 at 8:05 am #

    Hi Bev! Any update for on on how you’re doing? I was just diagnosed with UC on Tuesday (the day before yesterday) and I’ve found your story about the relief you find with probiotics to be very inspirational. Looking forward to hearing from you!

    -Katrina

    • Bev August 10, 2012 at 1:02 pm #

      Hi Katrina,

      Boy, am I late posting an answer to you! So sorry. I haven’t checked this page in quite some time!

      Thank you for asking about my health. I am still fabulous! Even more so actually. I am in COMPLETE remission now. Not even a tiny bit of bleeding or anything!

      Thanks to probiotics, L-glutamine, and astaxantnin, I am a regular old normal gal once again!

      Cheers:)

      • Colitis mom January 26, 2015 at 2:03 pm #

        Hi Bev,
        Saw all your posts –very helpful. Have started my son with the probiotics and L-Glutamine. I saw that you also mention ASTAXANTHIN. Is there a particular brand that you get and what strength.I hope my son–who is suffering for the past 6 years goes into remission with these.

        Thanks in advance.

  16. Charlie August 9, 2012 at 5:52 pm #

    Hi there.
    I have been healthy my whole life, that is until I went to work at a hospital and started pooping blood within 2 weeks of working there. I couldn’t go to a doctor, because my insurance had not started and I did not want a preexisting condition that would nullify my insurance.

    So I went on pooping blood, pure blood, almost appeared as if I had thrown a bowl of tomato soup into the toilet. I got up to going 30 times a day/night, sometimes there would be poop.

    I finally got insurance after 3 months of blood pooping. I had a colonoscopy (after one doctor called me a liar, saying I was too young to have those problems, it was just in my head…no doc, it’s in my butt actually), another doctor scoped me. They ran tests and eventually decided on colitis. I was put on Lialda, which did nothing, and eventually I developed an allergy to it. I was given nothing else and told to keep taking it and tough it out. It would make my joints swell so bad I couldn’t get dressed without getting sick with pain.

    A second doctor said I had to be put on Remicade, he would offer me no choice and told me it was my ONLY option. He said, “Now I’ll be honest, there are tumor risks with Remicade, but you’re at such a risk anyway, it won’t matter”. He had me so scared I got on the stuff.

    About a week or two before my first does, the pooping and bleeding slacked off and continued doing so. I got on Remicade and my problem kept tapering off and came back, and went, etc. Eventually I started getting a rash all over my arms, in my ears, on my neck, chest, back, all over my face any time I got hot or in the sun. Researching REMICADE + RASH led me to pages saying RARE SERIOUS SIDE EFFECT. I told my specialist, he said “pshhh”.

    Time goes by and near the end of my second year with colitis, my poop get flat, about 1/2 to 1/3 what it was, a ribbon shape. I mention it to my doctor and he says it’s normal. 4 more months go by, I mention it again, he says ” I know it isn’t cancer, we’ll check you in 3 months at the annual colonoscopy”.

    During my prep for the procedure, I mention the rash and the serious side effect warning to the nurse. She wants to know if I went to a dermatologist for it, to which I told her I had not, that it said consult my doctor. She asked if I had, I said yes, and his response was “pshhhhh”.

    I mention to her that I notice that when I poop, I can’t feel it on one side. I told her it feels like something is in there and the poop is sliding over it. I told her it’s been that way for nearly 7 to 8 months.

    AFTER the procedure, I woke up and asked the nurse in the room if they had removed anything. I told her, something’s gone. She didn’t know. After half an hour the “doctor” comes in and says well we found a HUGE polyp. I mentioned that I knew something was gone, to which he replies “You can’t feel it, unless you have been”, the he looked at my mother who was there and hushed. He said your colitis also appears to be gone, I can’t find any trace of it. Stop using Remicade, and he walks out of the room without answering any questions.

    He told me when I started I could NEVER stop. If I got better and stopped, it WOULD come back. He seemed offended when I asked after the first does. Now he says stop?

    Not sure where the colitis went, still waiting on the biopsy from the polyp and praying it isn’t anything bad.

    • Bev August 10, 2012 at 12:58 pm #

      Wow, Charlie,

      I don’t know what to say to all of this.

      One thing I know is that doctors typically treat us just like yours. They dismiss us as stupid and silly.

      I hope that UC is not becoming over diagnosed or misdiagnosed, like, say, breast cancer. Apparently, mammograms are sort of a scam. If you read about them online, the breast cancer pink campaign actually scares women into annual mammograms that can create more harm than they do good. Women are often treated with deadly cancer drugs that they don’t really need, leading to other health problems that they never would have encountered, had the ‘small’ tumore which may never have grown, not been treated. I was incrredulous when I read all of the research!

      How could you be diagnosed with UC one minute…and not have it the next? Or, perhaps the doctors are wrong, in that it is not a lifelong disease, and one that can be cyured or managed with probiotics and other natural things, including diet…food for thought for sure.

      It grinds my gears when doctors brush what we tell them aside, insisting that we do not know what we are talking about! We feel our own stuff going on in our own bodies. They can be such assholes, and I’m not sure they just are assholes, or whether they just get sick and tired of trying to explain things to patients and are burnt out.

      Anyway, I’m ranting I think. I don’t mean to be so cynical and bitter. I’ve just been through this whole UC thing for so long, that I am extremely skeptical about medicine, and the whole medical profession.

      Good luck and good health,
      Cheers:)

  17. Steve August 9, 2012 at 7:51 pm #

    Wow Charlie. Sounds like you have been through it all. I’m going to go out on a limb and suggest you look for and use a different doctor…one who is mindful of what you say. It sounds like a lot of what you have been through would have been much easier of not avoided. Do you have any UC symptoms now?? I hope all is well and thanks for sharing your story.

  18. Charlie August 10, 2012 at 1:41 pm #

    No symptoms at all now, and had not in a long time (unless you count flat stool from polyp, still hoping that biopsy is ok). I had started taking some Reishi mushroom extract a little bit ago after I noticed I felt better the next day when I had eaten a huge dinner of mushrooms (shiitake, black fungus, other stuff not sure what it was) that my wife cooked one night. Read up on mushrooms and reishi seemed to be the best/strongest. Cost about $40, so i figure if it didnt help, oh well.

    The only real issue was the super thin stool for the last 8 months, one minor flare after some wild rice for 2 days. I noticed i was sleeping better, but stool was still flat. Then i got the colonscopy shortly after i began the reishi, all they found was the one polyp. Not sure if uc went away, mushroom extract helped, new job being out of hospital and not exposed to something that was there.

    Right now sympyom free (other than worrying about huge polyp), one poop per day, 9am like clockwork, eat what i want, light brown poop.

    It says reishi helps balance what is imbalanced, helps modulate immune system, which remicade supposedly does too. I worried about mixing the two, but worried more about the flat poop and tried it.

    It’s called Duanwood Reishi, more expensive, but i heard more effective. Got it on amazon.com.

    Glad to find your site,i found it while googling ‘my ulcerative colitis is gone?’. I wondered if anyone else’s had poofed. Hope it stays gone.

    • Bev August 11, 2012 at 1:30 pm #

      How fantastic Charlie!

      As long as the ‘flat poop’ isn’t a bad sign of anything else…who cares, right? Isn’t it great to feel SO good?!

      Cheers and happiness…and great health:)

      • Elad S
        elad January 5, 2014 at 11:08 am #

        hi
        did any one hear about vsl 3 ?
        if any body has any thing to say about it please let me know
        elad

  19. Steve August 10, 2012 at 2:07 pm #

    Not quite vanished out of thin air like that. It is possible you were misdiagnosed but I suppose it is also possible your diet may have helped. Just a general guess…meaning I could be way wrong…but if you are feeling good, meaning no symptoms etc…then the polyp may end up being nothing. The polyps show up because of stress on the colon and are the precursor to worse things…just like abnormal skin cells or for women cervical cells…but it doesn’t mean it is cancer. Hope you hear good news soon. Crazy story though. Since mushrooms are a fungus, it might be worth looking into. Thanks again.

  20. massybird October 28, 2012 at 3:46 pm #

    Hey Bev,

    It’s been a while since you wrote here but I wanted to share a few thoughts on my UC. I took Accutane at the age of 18 after Erythromycin for a week and getting an allergic rash to it. However, my UC did not develop until 12-13 years later. I guess it’s possible that there’s still a small link between Accutane and my UC but it seems like most people who took Accutane developed UC immediately or right after the meds. Was that your experience?

    For the last two years I have been in ‘remission’ for 8 months each without drugs but when the Fall rolled around I would flare up and end up on Prednisone, low doses 15-20mg to start with. I would fight and fight without Prednisone but I guess my UC is pretty severe because it would drain my body, literally. I would lose so much blood that I needed a couple of iron infusions already. Not fun. I’m hoping to avoid that this time around.

    I believe stress is a huge contributing factor in my case. I was in a prolonged stressed situation when I developed UC and once the stressful factors were minimized in my life, I started to feel better and was doing well without drugs. I’m pretty sure that stress contributed to my flare this time around, along with straying off SCD one day at company outing and having 3 beers and then 1 at home. I was so confident things were gone that I drank beer. My poops were fine for a month after that but then the floodgates opened.

    Anyway, I’ve also slacked off on my meditation, so I have to go back into it full force. Hoping this flare is over soon and I can get off Prednisone quickly. Time will tell.

    Thanks for being so active on this forum.

    The Bird

  21. stan January 14, 2013 at 6:25 am #

    hi bev and everyone else.

    My name is stan and i was diagnosed with crohns about 10 years ago when i was 19. At that time i basically told my crohns doctor that i didnt want to go on any drugs he wanted to give me cause it wasn’t that bad. I would be sick and throwing up for about 8 hours and then be sleeping for 16 and then fine. I was suppose to follow up with my GI so he could put me on prednisone or maybe remicade but i never went back to him, however i am seeing him and he was not happy about my lack of follow up.
    Im a firm believer in the no drugs your body works it self out, i try not to take even advil or stuff.
    I heard somewhere a saying i like: Doctors prescibe drugs they no nothing about to people they know nothing about for problems they know nothing about. i thought that was pretty spot on but any ways im rambling.

    My desease kept getting worse up to the end where i would not eat for 3 days at a time cause i was in excruciating pain. Every meal I ate pretty much made me not want to eat again. I went from 190 pound to 110 pounds in the last yea and got a fistula connecting my intestine to my blader in the last coule months. I went to a new MD because i did not like mine and he rushed me into more appointments for multiple tests. He got me to see a sergeon and i was told i have to have sergery for the fistula and they would look at and see if i needed to have a section of my intestine removed and do it if necessary.

    In november 2012 i went into sergery where they removed 2 sections of my bowels and put my on a illostomy where my colon is detatched temporarly. I should be going back into the hospital in a months time to get hooked back up. I also saw my crohns doc again and like i said before he was not happy and said to make sure i do all my follow up appointments and He put me on pentasa for 6 months.

    Im feeling really good right now but that is because i just had the bad part of my intestines chopped out. I was on the line of thinking that maybe i will take the drugs he prescibled because i never want to be in that much pain and dont want to have to go back into sergery again in possibly 5 years. After reading everyones coments here im back to my first opinion and gut feeling that the drugs will just amplify my problems in the long run.

    Also i have eczema and unfortunately i have no idea if i was put on anything as a child but it seems by reading all of your comments there is a relation ship between eczema medications and crohns.

    Im going to start taking probiotics but wont the pentasa just kill all the good bacteria your trying to put in your system. I also read the scd diet and think that it makes sense and i might try it out after my sergery again but im sure my GI will shun me if i tell him i still dont want to be on drugs.
    They always just seem to want to tell you what you have to do without listening and no other options, At least thats the way i feel. I kinda want to get a new GI but im afriad all the doctors are in league and if i refuse him and the meds another doctor wont want to help me out.

    Anyways thx for letting me unload a bit. Ive never really chatted on these sites or anything before. sorry for rambling and the grammer and punctuation.

    good luck to everyone out there on beating digestive track problems.

    Congrats on beating yours off Bev

  22. KimberlyHI
    Kimberly January 21, 2013 at 9:22 pm #

    Hey Stan,

    I hope you are feeling better? I have had several bad GI docs and a couple of good ones. I recently had one I felt like I couldn’t talk to and it was like he just wanted to shove meds at me. Now I have moved to another who is very easy to talk to and is open minded, he cares about how I am feeling and doesn’t get mad when I talk to him about these meds. I am on remicade and imuran now, and he wanted me to take them at least a year, but now after I talked to him about how they scare me and I hate the side effects, he is allowing me to slowly get off them now, but he doesn’t want me to do it overnight because he is afraid my flare will come back. I have been reading a lot about SCD lately and plan to talk to him about it my next appointment just to see what he thinks, although I plan to try it regardless of what he says. I am just curious what his input is. But I like that I can mention it to him without feeling scared he’s going to think I’m an idiot or something.
    This disease is hard enough as it is without having to deal with a bad doctor. There are many good ones out there! I really hope you are feeling better. Being on this site helps a lot!

  23. Ray September 21, 2013 at 11:48 am #

    Hi Bev,
    How are you feeling now? I just got back to living in the USA from Nigeria and the experiences there messed up my UC pretty bad. I’m hoping to get myself under control with the SCD diet, Probiotic, and your other reccomendations, but wanted to know how its been for you long term.

  24. Elad S
    elad January 5, 2014 at 11:09 am #

    hi
    i am looking for information about vsl 3
    thanks
    elad

  25. Tara B
    Tara February 28, 2014 at 8:41 pm #

    Bev,
    What do you take when you get a cold?? I am currently sick with a cold or something and I feel like its messing with my colitis. I think I may have a sinus infection and am scared to go to the doctor as they will give you antibiotics… I am thinking I should double up on my probiotics and take lots of vitamin c… Just wanted someones thoughts. I know no one is a doctor, but I am new in the UC world and this is my first time being sick with it. All I have been taking is tylenol. Not sure if tylenol cold will mess with me?? I know everyone is different. Any advice would be very much appreciated!! :)

    Tara

    • Fred S
      Fred February 17, 2016 at 9:15 am #

      Both Tylenol and Ibuprofen can aggravate UC so try not to take either unless really needed. Definitely stay away from real Sudafed (the one with suphredrine) because that made me bleed BIG TIME. Sudafed PE is fine though. Hot Ginger tea is also good for a sinus cold and great overall for the immune system.

      Sounds odd, but for a headache, I rub a small amount of bengay (or similar type muscle rub) on my forehead. It really helps!

      I suggest using google if in doubt about an ingredients used in cold medicine.

      Hope it helps.

  26. Mike January 18, 2017 at 12:23 pm #

    Well, this was a nice article.

    I too have gotten of meds like asacol. Hell, I never really took it as prescribed anyways. You know, one of the side-effects of asacol is diarrhea… So asacol has a chance of making things worse.

    Anyways, my trick. 3 table spoons of regular Metamucil (do not use the suger free crap), probiotics and nicotine Vaping.

    Also, anyone with UC NEEDS TO STAY AWAY FROM SPLENDA!!!!!!! Splenda AKA Sucralose kills the good bacteria in your intestines and will make you flare up. You have been warned. It don’t believe, then next time your in remission, go try it. And sadly, because of all of the obesity in America, they now put this crap in EVERYTHING… they even coat pills in it… like I am really going to get fat off a god damn pill.

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