Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

It’s 4am

Meet Catherine:

I’m 31, though the festivities have been deferred until the current flare is over, and was diagnosed with UC when I was 27. I’m 3 months into my second flare, the first one lasted 2 years but I had complete remission in the meantime.

Some more about me:

I’m a lawyer by trade, and a karate instructor by passion. I love to garden, growing vegetables and herbs, and am somewhat impatiently waiting for 15 trees to mature enough to produce fruit, and also cooking and eating my home grown and local food.

It’s 4am

It’s 4am and once again I’m awake after the usual 3am butt pee, with steroid-induced insomnia. Not that the hospital noise helps, but at least I have the room to my self tonight, after the previous roommate with sleep apnea, and the one before that with the constant cough…

I’ve been here a week today, having come into emergency after hyperventilating and nearly passing out in pain. I’d been flaring for a couple of months, but after the first week or so on pred, things had seemed to be settling down. I’d even had my first formed BM that day then bam, this excruciating pain.

The scope showed inflammation through the whole colon, and bad enough to be close to perforating.
Over the week, meds have ramped up from 50mg pred and 4g mesalazine granules to IV methylpred, pred enemas, 100mg imuran, 2 courses of antibiotics and a remicade infusion. The infusion was a day and a half ago, but I haven’t noticed much improvement from it yet.

Going back a bit in my story, I got into remission from my one previous 2 year long flare on something like the above regime and scd. A year later I’d come off the meds and things were going well.

Then life got busy and I got a bit slack with scd, work was stressful and I was drinking way too much coffee, and taking pain killers and anti-inflammatories for a herniated disc in my neck. Yeah, I know it’s obvious something has to give! But when you are in that spiral, is hard to stop going down.

This time, I started the GAPS diet, not because I was unhappy with scd, but because I found a local naturopath who is also a GAPS practitioner and I felt like I needed more guidance this time through, and I guess someone to keep me on track. I’d kept meaning to do the intro diet again and not getting around to it.

The thing I find most scary, and that was totally different to my last flare, was how everything seemed stable, and then all of a sudden, my colon was nearly perforated. Last time, I never got to that much pain, and while I did get really bad, it happened over a much longer period.

I’m wondering if other people have gone from mild and stable flare to out of control in the space of hours, and also thoughts on a possible connection with diet. I hadn’t got much past the beginning of GAPS intro, eating only puréed soup, boiled chicken, eggs, ghee, chicken livers and honey. I’m curious to know if that was putting so little pressure on my gut that the inflammation could just get worse but with little change in symptoms.

Anyway, thanks for listening. I mostly prefer just to retreat into myself when I’m sick, and apart from my husband, don’t like getting visitors in hospital. So it is nice to have this forum to vent.
Maybe now I can get back to sleep…

written by Catherine




62 Responses to It’s 4am

  1. Stephanie June 2, 2013 at 6:00 am #

    Hi Catherine,
    I don’t have any advice for you right now but just want you to know that I’m pulling for you. I’m sure a lot of other people on this site are as well. I totally relate to the spiral part when you know you’re doing things you shouldn’t be (for me it’s not getting enough sleep or not drinking enough water and the stress-ugh the stress!). I hope you find relief soon!!

  2. Wendy
    Wendy June 2, 2013 at 6:39 am #

    I hope you’re feeling well soon. I think it’s crazy how we have to monitor ourselves and feel guilty for eating what (previous to diagnosis) we would normally always eat. It is so difficult to eat such a self-restricted diet all the time and then we feel horribly guilty for breaking it.

  3. Jen From UK
    Jen June 2, 2013 at 2:09 pm #

    Hope you find some relief soon! I’m 31 too and in my firs flare (13 months in a week :-() I too had the whole ok flaring but managing, to within hours being whisked to a and e in an ambulance as I thought if I lost any more blood/liquid I would die and leave my 2 boys who were 3 and 9 months at the time. But I came out all in one piece that time :-)
    All the best and stay sane in there

  4. bev June 2, 2013 at 4:55 pm #

    Pain killers and anti inflammatories. As a UCer, we can’t take those. Nobody ever told me that I could not take things like advil and aleve. Apparently, I (we) can’t. I had no idea…

    That may have helped trigger your recent flare…however…ALL of the UC meds that you are on at the moment…well, some could be working against you. Some meds for UC can actually make the UC even worse! I know! The asacol was making my urgency, cramping, and bleeding WORSE, instead of better. I obviously had an adverse reaction to it, for 14 freaking years I might add, but the doctor kept telling me it was the UC, and that I should then try pred, and imuran, and remicade, etc etc. I finally put my foot down, and took control of my own health. Yeah, the doc was not a happy camper, but I DIDN’T GIVE A S*** any more!

    The drugs for UC are all band-aids. We need to HEAL our colons, not try horrible drug after horrible drug until they ALL stop doing anything at all and it’s time for the BIG colon removal! I am mad. I am so tired of hearing the same stories time after time, and the doctors just keep doing the same things over and over. This all has to stop. The way UC has been treated, wrongly, has gone on for far too long.

    Believe it or not, Catherine…I am in a REAL remission, for the first time in 14 years and I am on NO meds at all. I promise you, I ain’t crazy either. I never believed in probiotics or any other natural thing. I thought it was just another way to get our money out of us. I now take a GOOD probiotic every day when I get up, empty stomach with water, and then no eating for at least half an hour. Then, again on an empty stomach, about an hour before I eat lunch, I take the fermented L-glutamine powder, mixed in a tiny bit of juice. You can mix it with water, too, but I don’t like the taste. L-glutamine actually HEAL the mucosa of the colon! I know! I didn’t believe the supplement store clerk when she told me that but thought I’d give it a whirl.

    Within a couple weeks of taking those two things, my symptoms were disappearing so nicely, that I just up and stopped taking the asacol. I was on the highest dose of asacol at that time, because I was in a horrible flare after taking AVELOX, a powerful antibiotic for pneumonia. It was doing nothing for me at all…just making me even sicker.

    Anyway, long story short…you do not have to do what your doctor says. If it does not feel right, don’t compromise yourself. You are the boss of you. Heal your colon…you don’t have to stop the meds UNTIL YOU FEEL BETTER ON SOMETHING NATURAL. Then, you just may find that you want to!

    I just want us all to feel good and live again. That is my goal.

    Cheers,
    Bev
    :)

    • tim123 June 2, 2013 at 9:11 pm #

      Hi Bev

      In US I am not able to get fermented L-glutamine powder(North Coast Naturals). Is there any brand that you know that you can recommend.

      I started taking Renew Life Ultimate Flora Critical Care Probiotics. Currently I am taking jarrows L-glutamine.

      • bev June 3, 2013 at 6:18 am #

        Sorry, but I don’t know any names of other brands of L-glutamine, tim123…I’m sure that the one you are on will do the trick.

        Does anyone else know?

        Do keep us posted on your progress. Remember…give it some time. At least a month. Oh…and everything on an empty stomach!

        Bev
        :)

        • Caroline
          Caroline June 3, 2013 at 12:36 pm #

          I use the Now brand powder – I love it and have a subscription order on Amazon for it. It blends well with smoothies and doesn’t have a weird taste to it. I have heard good things about the Jarrow’s brand too – I am sure that one will be fine!

          • bev June 3, 2013 at 12:41 pm #

            Yey!!

            Thank you Caroline :)

          • shelly in maine June 3, 2013 at 5:08 pm #

            ibought the now brand, too because I couldn’t track the north coast natural unless you want to pay more for shipping than the product! I actually haven’t used it yet, already in my spirutein i put in my smoothie but wil use this summer when i cut back on Smoothies…but in my research it seemed to be one of the better products and natural. I know in my readings over the years it has been used to treat uc and other immune suppressing issues and help with chemo., etc. Keep on the soapbox Bev! :-) the info is out there, but there was such fear for the natural/herbal remedies.
            :-) be well all! Shelly

          • bev June 3, 2013 at 5:42 pm #

            Cheers Shelly!!

            You too!!

            :)

        • Ken June 3, 2013 at 12:55 pm #

          I’ve used a couple different brands, all seemed to work fine. I currently use Twinlabs.

          • bev June 3, 2013 at 1:19 pm #

            Great info Ken!

            Thanks for helping. I only know of the brand that I use…lol

      • Colleen June 3, 2013 at 7:52 pm #

        Tim, I use Jarrows. I was wondering the same thing you were and asked something similar on another thread recently. I can’t get NCC where I live either, but I have had good results with Jarrows, as have some others on this site. I use the powder form. Good luck! Hope the L-Glut does wonders for you like it has for many of us. (Can’t help thanking Bev every time I write anything about L-G!)

  5. Sharon June 3, 2013 at 5:21 am #

    Catherine, my story was just posted as well. You will see that when I switched to Lialda, I went downhill rapidly and also ended up in the hospital. With 23 years of UC, I know my disease is in the same 6-8 inches but at my last hospitalization my whole colon was swollen. We know now that it wasn’t the UC but a reaction to the Lialda itself. I knew my symptoms were different but found it difficult to explain that bloody, mucous D is just somehow different than this smelly, toxic mucous and bloody D. I also had extremely heavy feelings in my legs and even laying on the bed itself hurt my muscles. Of course, you may be having completely different issues but I wanted to give you another option to consider. The one thing I would have done differently was to make sure the doctor understood that something was dramatically different than my typical flare.

    BTW, I remember once being hospitalized with a stream of roommates that would have made a great movie. The first was delusional with crazy family dynamics who wouldn’t stay in her bed and screamed until they moved her to the psych ward, the next had sleep apnea and woke every hour or so to call her friends all night long and complained non-stop. After the 3rd or 4th person, the nurses gave me a private room out of pity :)

  6. Catherine
    Catherine Radley June 3, 2013 at 6:15 pm #

    Thanks all for the comments, suggestions and positive thoughts. I’m home now and the symptoms are slowly starting to improve. The sleep (thank goodness) is much better too – 10 hours straight last night! After my last hospital room mate was moved into another room when she started having D, I kept the room to myself for the rest of my stay.

    Sharon, I know what you mean about the mesalazine – I seem to be fine with the slow release granules (not that I’ve noticed them improve anything, but they don’t seem to make it worse), but in any other form (enemas, foam, and a new formulation pill that is meant to be more effective) cause me no end of grief. And what is it with gastroenterologists not believing that you can tell the difference between a flare and drug side effects?!

    Bev, I’m seeing a wonderful naturopath and GAPS practitioner, and yes, the goal is certainly to be drug-free in the long term. It’s nice to be reminded that I’m not crazy for aiming for that!

    • bev June 3, 2013 at 9:59 pm #

      I love how positive you sound Catherine!!

      Getting drug free is certainly not crazy…although some doctors may make you think that…

      Yey!!

      :)

  7. tim123 June 3, 2013 at 9:50 pm #

    Thanks Bev and everyone for your wonderful Inputs.

  8. bev June 3, 2013 at 9:55 pm #

    Any time!

    • tim123 June 5, 2013 at 2:16 pm #

      Hi Bev,

      When did you stop taking asacol (ie after how many months taking the pro-biotic and l-glutamine).

      • bev June 5, 2013 at 2:52 pm #

        I stopped taking it within a month or less of starting the probiotic. I just started feeling so much better…urgency, frequency, pain all started disappearing. At first, I was going to ‘wean’ down by a pill per day, but within three days, I thought ‘screw it’ and just stopped all of it. I still had about 400 pills left! At the time, I was on 12 pills per day. The highest dosage and it wasn’t helping my flare at all. Only making all the symptoms worse.

        Within days of stopping it, my symptoms cleared up even more…and the nausea that I had been having went away as well. I obviously was having an adverse reaction to the damned asacol…I was on it for 14 straight years in varying dosages and felt sick the whole time…my doctor always claimed it was the UC itself…not the drug…making me feel sick.

        Bev

      • bev June 5, 2013 at 2:53 pm #

        oh….I hadn’t even started taking the L-glut when I went off the asacol…I didn’t add that until a month later…because I still had bleeding…two days later, the bleeding was gone…

  9. Michael Hurst
    MichaelKHurst June 3, 2013 at 10:58 pm #

    In place of L-Glutamine itself I had great results using Muscle Milk as a meal replacement shake and dietary supplement. It has a high amount of several amino acids and proteins including L-Glutamine. I think this is why I was able to wein myself off Prednisone two and a half years ago when I was facing surgery which led to me canceling surgery and using fecal transplants to effectively rid myself of symptoms.

    As for getting a sudden flare under control, the fastest way to get a flare that bad under control I found was anti-biotics including Cipro and also Vancomycin on separate occasions. I also noticed high amounts of iron and B vitamin supplements also helped, not only for the gut but also cold sore blisters around my mouth, sinus infections and small scrapes or cuts that were healing very slowly. I think low red blood cell count or anemia weakens the immune system and that might make the bacterial cause of a flare even worse.

    Also anything to calm muscle spasms and diarrhea can help, in my experience Valerian root standardized extract seems to be about as effective as a low dose of Doxepin (Silenor) which I was prescribed to help me with sleep problem related to Prednisone. However Doxepin and Valerian both seem to help slow down diarrhea as well.

  10. MarkFN June 4, 2013 at 8:06 am #

    I just started posting on this site a couple days ago, having been a reader for a couple months, and I feel like this site is truly a great source of information for people with UC. Basically everyone’s inital story with colitis deals with doctors prescribing drugs with varying degrees of success and side effects, myself included…some get worse, some get better, some see no difference whatsoever when taking drugs. Then eventually people begin to explore alternative options in dealing with this condition, with similar type experiences where some have success, some dont etc etc. I just feel like the entire approach to trying to cure colitis is entirely flawed. Similar to another guy on this thread, Michael K, I used at home fecal transplants to cure myself of this disease. This is so fundamentally different from every western/eastern/chinese/homeopathic/whatever other possble types of medicine that are available in todays world that seek to “optimize” the body on a cellular level. Pharmaceutical drugs dont seek to optimize the body on the cellular level they just serve to mask symptoms, but the other types of natural medicines certainly do. The only approach that really seems to work in the right way, in my opinion is probiotics because they function to change the bacteria balance in the colon. Pretty much every person that gets colitis eventually learns about probiotics and their potential positive effects in dealing with colitis.
    For instance, Bev, who I have read many of her posts on this site haha you sure do have a lot to say but I enjoy reading your thoughts, has achieved remission simply by taking a probiotic in the morning with some glutamine. Taking this dosage of probiotic was able to shift the balance of good bacteria in her favor. For many others, myself included, there simply wasnt enough probiotics being manufactured in the continental United States that I could have taken that would have brought me into true remissio. Ha ok I may be exaggerating but the point is that 1)taking large amounts of probiotics can become really expensive and 2)the strands we are able to take via pill or whatever method are considered transient…meaning they are never able to build homes in the intestinal biofilm. In my opinion, this is why people flare as soon as they reduce their dosage or stop taking the probiotics because the one’s we ingest simply improve the health of the colon while they are in our system but they are never able to truly establish a normal healthy balance like before we got sick because we simply crap them out in our stool.
    So for the many people that experience some success by using probiotics but not total remission, I think taking an alternative approach and targeting the bacteria is the cure for colitis. As I struggled with this disease for 4 years, with the last 2 years being very bad, I went through basically every lifestyle change one could make. From diet to yoga to thought processes…I was even seriously considering hypnotism to try to help me reduce symptoms. I was never able to feel close to normal as I would achieve a small improvement here or there only to flare worse the next week or month later. I did fecal tranplants and the symptoms were simply gone. I say this with great perspective as I went through the ups and downs, getting super excited if i only had 5 BMs one day instead of 6, or if I had less blood in the toilet than usual. Now I wake up and have 1 perfectly normal BM per day with zero urgency…its not like Ive had a reduction in symptoms, they simply just disappeared as soon as I balanced the bacteria. The last couple of years as I followed these insanely strict diets, I would often times get super pissed as I went out in public and saw my friends chugging beer and eating whatever they want like I used to do as well, and I would say to myself I basically eat the healthiest diet that is humanly possible, spend hundreds of dollars on these supplements per month, and still I cant eat or drink or do anything I want. I would wonder there has got to be a huge fundamental difference between their colon and mine…and I was right it was the bacteria. If you have good bacteria, you can eat or drink anything and not worry about it. How else do people get to be 500 lbs without colitis?? They obviously dont have a healthy diet. So when I eventually realized I had exhausted basically all possible options to improve my body on cellular level via lifestyle alterations and alernative approaches, I decidied to do FT and literally walked away from the disease.
    Hope my thoughts can help someone on this thread as they contemplate the causes colitis.

    Mark

    • bev June 4, 2013 at 9:56 am #

      Holy rap, Mark…

      What a fantastic post! All I can say is YES to what you said about bacteria. (I don’t want to say TOO much, like I usually do…lol…like you said,I have almost too much to sat at tomes…sorry).

      What you say explains why some don’t find the same relief that I have found in the amount of probiotic that I take. Differing degrees of bacteria are needed in different individuals. Also, stick-to-it-ness. I believe that when there isn’t instant relief, people bail. They go back to the drug protocol, hoping that maybe this time, it will finally work.

      Bottom line…the medications DO NOT WORK long term. None of them. We have to heal the colon, first by replenishing the good bacteria (in varying degrees individually), and then getting that mucosa healthy again, whether it be by L-glutamine, EVOO, or what have you.

      BTW…you had a lot to say in your post above…lol…it’s hard to say everything in just a few lines, right?!

      Cheers, and again, fab post. Everyone should hang on your every word, because you know of what you speak my friend! Best post I’ve read on here in a long time…

      Bev

  11. Wendy Jean June 4, 2013 at 9:39 am #

    Wow…love this thread. Giving me such hope! I am going to try the probiotics and fermented L-glutamine. I was just diagnosed in December and tapering off my 3rd round of prednisone, also taking the max dose of balsalazide. Still bleeding. Almost no diarrhea since I went gluten free but still way too much blood too many times a day. Pain is better, but still there. There has to be a way to heal my body without all these drugs! I eat very well, exercise 5-7 days a week and have used acupuncture for more than 5 years to control the muscle issues I had no idea were related to UC until I was diagnosed. My acupuncturist is shifting my treatment to include the UC so I am hopeful there also. So any words of wisdom as I start the natural route????

    • bev June 4, 2013 at 10:47 am #

      I know! Isn’t this a great thread Wendy Jean?? Our community is really getting somewhere with this whole ‘how to live with UC’ thing, I believe.

      I still think the cure lies in replenishing that good bacteria and healing the colon’s mucosa. Get those two things right, and you’re living large again!!

      I have no other words of wisdom…it sounds like you have gleaned what you need and are well on the way on that path…go for it!! Get ready to live ‘normal’ (whatever that means to you) again!!

      Bev
      :)

      • Wendy Jean June 4, 2013 at 5:30 pm #

        Thank you! Started today…can’t wait to see what happens.

  12. bev June 4, 2013 at 9:58 am #

    So many typos above!

    I meant HOLY CRAP, Mark…

    Also…’I have too much to say at times’…

    I was typing madly, as per…

  13. Michael Hurst
    MichaelKHurst June 4, 2013 at 10:28 am #

    Awesome Mark, exactly dead on with the other pro-biotic strains, if they’re not native to the body they aren’t going to be self-sustaining. The sad irony is that everyone is trying to fix the body and the natural process as if it is broken, when really all we need to do is hit the reset button with FMT. How long did you do the fecal transplants for? Did you use any other drugs or supplements to help the treatment process or did you just do the fecal transplants themselves?

    Bev “Holy Rap,” LOL, I’m going to use that :) Maybe that could be another fun idea to to for fecal transplants.

    Wendy Jean: words of wisdom, I tried everything else and fecal transplants were the only thing that worked. Since FMT creates a self-sustaining colony in your body, unlike other pro-biotics, you don’t need to keep taking anything on a continuing basis so I would do that. Protein supplements including L-Glutamine are part of the solution to provide nutrition to heal your colon, but when you do fecal transplants in my experience I feel they are un-necessary to stay symptom-free once your colon has fully healed. Since a few months after starting the fecal transplants I have had to do NOTHING ELSE for almost two years.

    Bottom line advice do the fecal transplants and once you are fully healed be done with ever having to worry about any other maintenance treatments, because the self-sustaining bacterial colony will keep things running smoothly all by itself.

    • bev June 4, 2013 at 10:43 am #

      Yes, Michaelk, I would almost like to try not having to keep taking the L-glut…I feel so normalized these days…perhaps if my bacteria is at the level it should be now, I can possibly discontinue the other. After all, my colon is probably ‘healed’ at this point. I’m just a wee bit wary to do it yet…but perhaps I’ll give it a try in the near future. If and when I do, I’ll keep everyone up to speed…like I do!

      Holy rap…lol…silly typos can really turn into something sometimes…

      :)

  14. MarkFN June 4, 2013 at 11:22 am #

    Bev,
    Haha thank you for the compliments on my now very expansive “colitis knowledge.” Yes, everything Michael K has posted/currently posts I could not agree with anymore. I absolutely agree that colitis is a bacterial problem, not this all of the sudden disease I got when I was 23 years old that must have been laying dormant in my body for years and years waiting to manifest itself and literally ruin the last couple years of my life. Once I accepted the fact that there was nothing else I could do via diet or lifestyle…meaning I have tried every supplement, diet, exercise techniques whatever, you name it I’ve tried it/read about it/experienced all the approaches out there, I realized I was going attacking it completely backwards. Well I guess not completely backwards because I do agree that making all these alterations to increase my health certainly gives you a better chance at fighting the disease, I realized that is simply all I was ever going to be able to do—fight this never ending fight with a screwed up bacterial imbalance in my colon by “optimizing” the rest of my body’s disease fighting capabilities.
    Wendy Jean…as Michael said just above, I feel there is no need to go do acupuncture or whatever alternative/unproven methods to combat colitis, even if these are healthier than taking drugs. I got ripped off thousands upon thousands by a nutritionist and other naturopathic doctors that try to optimize the body via alternative supplements or other treatments. THIS IS CRAZYYY!!!!! I cant even think about it without getting angry. Do you really think a lack of acupuncture is really keeping you from remission?? I do not say this out of a lack of respect for your acupunturist, and I do not believe that all naturopathic doctors are ill-intended, but always keep it in perspective that these people need us sick people to even have a job. I was all set to begin treatment to get hypnotized to help me haha, yes I know, as if I can just be told to forget about the fact that I crap blood 10 times a day and I cant leave the house without knowing where the nearest bathroom/woods are at all times. Cant tell you how many times Ive crapped outside the last 18 months, I always wondered what would happen if the cops saw me I probably would have gotten a citation or arrested haha Im sure they wouldnt understand.
    All of these approaches, whether its that one next crazy supplement you have yet to try, or that one last diet/treatment you think is the missing piece to your health, are all band aids in my opinion. I think supplements are very beneficial in the healing process such as glutamine, omega 3s, multivitamins, probiotics, enzymes, but one should not have to take these for the rest of their life, worrying about missing a few doses and praying that next flare wont come. Fecal Transplants RESETS THE COLON. Its like getting a chance to hit the reset button and start anew. There should be absolutley no fear in doing it, there are literally no side effects besides the gross factor but as I said in another post, I would have done anything to get rid of colitis. If we are all told by these “naturopathic doctors,” as I know I was told by a few, that the body is a healing machine with its own ability to heal itself, isnt it hypocritical for them to then prescribe all these “natural medicines” that insurance surely wont pay for but they certainly get a percentage of the revenue?? Everyone with colitis, or anyone experiencing active symptoms, has a bacterial imbalance in their colon. Even the insanely idiotic and imcompetent GI geniuses will agree on that, so instead of just taking pharmaceutical drugs to mask the symptoms or taking natural medicines for the rest of our lives, the real cause and cure is fixing the bacteria in the colon in order to let the body “heal itself.” Probiotics are a great way of doing this…but for many people they often are not nearly enough. The only real and true cure is fecal transplants, which is live, active human bacteria, sometimes even referred to as HPI or Human Probiotic Infusion. There is no better way to get your source of probiotic into the colon than taking a fecal enema haha as gross as it may be.

    • bev June 4, 2013 at 11:42 am #

      Dare I say…AN EVEN BETTER POST THAN YOUR LAST, MARKFN!!

      I read on this site over and over again, UC sufferers trying everything under the sun, sometimes at great monetary expense, and ending up right back at square one. Acupuncture, hypnotism…those things will not heal the colon, no matter what anyone tells you.

      We simply MUST accept the necessity of good bacteria replenishment. It’s just a fact, everyone. Even if you’ve ‘tried’ it before and it hasn’t worked. You just didn’t get to the level YOU needed to be. Or, you simply did not try long enough. I think FTs are the ultimate way to achieve CURE, however, if you aren’t privy to them, or you can’t bring yourself to do it, there are GOOD probiotics out there. I am living proof.

      This is why I REFUSE to call UC a DISEASE!! It is a condition that I am positive is not forever.

      LOL…band-aids are my favorite word for the UC meds…the cut just scabs over…but it’s still there, until we HEAL.

      :)

    • shelly in maine June 4, 2013 at 5:06 pm #

      Mark FN,
      I shall be the new that says whoa..I don’t disagree with your theory, well most of it about going directly to the problem of the gut bacteria to help heal and balance.
      I do disagree about a couple of things… I’m not sure how you got uc suddenly?? I also feel that using other treatments may be useful in treating our whole bodies not just for uc, but for other ailments hidden or not. People in general do not take care of their bodies and wait for things to go wrong until they are willing tO make changes. so really we are better care takers of our bodies managing/monitoring our foods, stress, exercise, etc, etc. So therefore not a waste of money.
      Another thing is I do feel there will someday be a distinction between different forms of UC like there is for diabetes. I have a clear genetic link as all 5 of my siblings have some form of IBD, as my mom -undiagnosed ibd, Dad died of complications of Crohn’s, uncle, multiple cousins, etc. I had symptoms as far back as i can remember and had my first accident that I remember at 5-6. 2 years on. sulfasalazine and then diagnosed around 15. Can’t blame environment parents were divorced and I lived in Florida with 1/2 my siblings..I ate fairly healthy, very athletic, etc, etc.
      OK and my other point is that we are unable to control other illnesses that affect us, females have extra issues, our food supply, etc. So, most likely there may
      not be a “cure” per se, but perhaps a healed colon for at least a time period. Just too many factors beyond our control and perhaps harder for the stronger genetically linked UC’ers.
      With that being said, we appreciate your input, but caution you about being too harsh for those of us using other alternatives perhaps until their/our options are limited and forced to surgery or ft. My hopes are with you and a cleaner ft, but…ick! :-)
      Thanks for your info and insight and sharing your experiences. Remember we are all in this battle together so go easy on us alternative users! I’m 45, by the way, so I’ve been at this a long time! :-)
      Best, Shelly

      • shelly in maine June 4, 2013 at 5:32 pm #

        ok sO that was supposed to be The One, not new! My tablet doesn’t let me go back and edit.
        I do hope you understand the other point of view and that yours is completely valuable and you should post a story to stand on your soapbox and spread your story of success. Like you said of the other ft stories. Adam has been posting research and even had some doctors on a story a couple of months back.
        This site is a wealth of info and a caring, supporting community, not just a thread of info and nameless people…a real uc community who SUPPORTS one another.
        We do appreciate your wisdom and experiences so keep sharing. :-)

        • Emie
          Emie June 4, 2013 at 9:28 pm #

          Thank you Shelly

          • shelly in maine June 5, 2013 at 3:28 am #

            :-) so happy for you!

      • MarkFN June 4, 2013 at 6:04 pm #

        Shelly,
        I apologize if I offended you or anyone who is using any form of alternative means to control their UC…I just know personally that I tried about every option before I finally did FT. I agree with you 100% when you say that all these diet/lifestyle options people use to help deal with colitis are beneficial in the long run. I am now in the absolute best shape of my life, I exercise daily, eat right, etc etc…I am still following these same wellness principles I learned as I tried to control my symptoms; however, these methods alone were not enough to put me in remission. I just feel that you are looking at FT from the wrong point of view. When you mention FT right along the same lines as surgery, it makes it seem like it should be the absolute last resort…I do not agree with this, I think it should be the absolute first means of treating the disease. Sure it is gross, and I didnt think I was going to be able to do it initially, but I really think that one should not diminish its potential rewards until they have done it extensively and still didnt have success.

        As far as your family history with IBD, yeah I did not have any known relative with anything close to this. I started experiencing symptoms only 4 years ago so I have not had it as long as you, but prior to that I never had any digestive issues whatsoever. There are a few things I think would make sense with your situation though…As this article clearly illustrates, a lot of the bacteria is passed from mother to child at birth; therefore birthing methods, breast feeding etc all play a factor in developing the microbiome of young kids. Maybe it was one of these factors that you and your siblings all had in common that lead to having digestive issues later in life.

        http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?pagewanted=all&_r=0

        Granted I am not a doctor, do not claim to be, and sure you may be right when you say that there may eventually be different types of UC…whether it is inherited or caused by antibiotics, diet etc etc. As this article shows, people who live under the same household tend to have very similar microbiomes. This is just my opinion, but people who get UC are probably in some way or another more susceptible than a regular person to having the bacterial balance in their colon to get out of whack. However, it is probably the use of antibiotics or some other factor that eventually sets it off. Needless to say, I think it is totally “cureable” regardless of the initial cause via FT. Thank you for your comments and yes you are right we are all in this together. Everything I’ve said on this website is intended to help as many people as possible because seriously living with colitis is not something anyone should have to endure if there are other options that might work.

        • shelly in maine June 5, 2013 at 3:19 am #

          hey MarkFN,
          Thanks for the apology update. I speak on behalf of many and those that have already taken the surgery route. We have had people on this site left with no options so sick in the hospital with nothing left of their colons and no options, but surgery or little children whose parents no nothing, but hospitals and sickness. So itisimportant to share your info with as much support and positivity as possible. Feel free to read some of those stories!
          I agree with most of what you say and because I am grossed out by ft,right now, it is still an option for me and obviously I will not be using my family members! :-)
          I’m not sure what got you to uc..not sure if you have said, but given its late onset, I’m guessing you pretty much have a distinct cause like so many others I have read about…antibiotics the biggy, accutane, etc…just FYI I NEVER took antibiotics,no broken bones, like I said lived in different environments from siblings, hardly sick except issues with stomache-diarrhea!!
          The other fact is that there are genetic markers for the disease, and like my GI said, there are sooo many, and doesn’t always mean you will get a disease, but sure as hell increases your chances! He also said that is why it can be so variable I families..by the way, he just came back from a big conference!
          Anyway Mark, please post your story, I do believe in the treatment and the more people ask, the safer and cleaner version will be established. It is last on my last because, thankfully I am finding an alternative ways to treat myself/uc, and all the EIM’s that go with it like iritis, joint pain,/detioration, etc, etc. There is a lot more to this disease that people forget with the EIM’s. And that includes. Crohn’s and the different path that takes and its similarities. That is the other reason for spending money on whatever helps you heal and care for your entire body from the inside out.
          So remember, and I’m sure I can speak to this issue for all and Adam, as a person who has pretty much been on Adam’s site since the beginning…speak loud, but be supportive there is still a lot for us all to learn about this disease…and yes, I feel for a percentage of us it is a disease and perhaps more manageble for some than others, especially if you can pinpoint the cause…but we are all in the same battles and UC war!
          Best, Shelly

  15. Ann June 4, 2013 at 11:40 am #

    Hi Bev, I am wondering what the difference is between fermented L-Glutamine and non-fermented L-Glutamine. I am doing research on line and can’t seem to find an answer to that. I started taking L-Glutamine in February which seems to help a lot but I don’t think the GNC brand is fermented. Can you shed some insight on this for me? After reading this, I am considering the fecal transplant. The idea of it totally grosses me out. I guess I better start doing some research on that too. Have you ever considered this option?

    • bev June 4, 2013 at 11:46 am #

      I’ve been asked this before…and I’m not sure. I know that fermentation is somehow good for the colon…

      Anyone?

      The FT that you are considering would probably be the most wise thing ever, Ann. I would have it in a minute, and was waiting to be called what seemed like forever, but the call never did come. Now, because I am in such a good place with the UC totally gone on the probiotic, I have not pressed the issue. If you have the opportunity to do it…DO IT!! Get over the gross factor. I know that you won’t be sorry… :)

      Bev

      • shelly in maine June 4, 2013 at 5:09 pm #

        i keep searching and still come back to the fact that is a redundant term…it is already from fermented foods!??

    • Ken June 5, 2013 at 9:31 am #

      Ann,

      Glutamine can be produced two ways: chemically and fermented. The fermented is thought to be more pure, but there isn’t documentation to be sure. There are no active cultures in the fermented type, the end products are the same.

      • Ann June 5, 2013 at 11:14 am #

        Hi Ken, Thanks for the reply. I shopped Whole Foods last night and the fermented version is a little more expensive than the chemical version which GNC has. I think I will try the fermented version this time since I am learning fermented foods are supposed to be good for us UC people. I am even looking into buying a fermenting pot to make homemade sauerkraut.

  16. Ann June 4, 2013 at 11:48 am #

    What do you mean by waiting to be called?

    • bev June 4, 2013 at 1:57 pm #

      I was on a waiting list for months for a FT, but I never got a phone call. I didn’t ever bother following up because I got remission, or cured, through the probiotic and the L-glut, thankfully :)

      So far so good…

  17. MarkFN June 4, 2013 at 12:40 pm #

    Michael K, I did the fecal transplants 19 times in 19 days. A weird number I know, but I had a wedding the one weekend, and I had been symptom free for about 8 or 9 days by that point so I just stopped. I had initially started them when I came across your post/your website where you documented your whole ordeal. I realized that your 35 day experiment worked well for you so I was willing to do it for weeks/months. I basically just stopped because I could tell after about 2 weeks that it had completely reset and there was really no point to keep doing it. The best way for me to know this, as I sit here and postulate like Im a serious doctor haha, is that for the first 10+ infusions I did, I experienced a lot of stomach cramping/growling. This was painless but it made me very gassy etc and it was uncomfortable because its pretty much impossible to fart if you have a poop enema at the end of your colon. After I had reset my bacteria, I wasnt experiencing the same amount of growling/stomach noises if you would like to call it that so I just figured I would stop there.

    Bev, I totally agree if I were in your situation and I was totally symptom free, I would just stick with your program…if its not broken dont need to fix it. However, I think its worth considering FT because the form of probiotics that we are able to buy and ingest simply are not “native” to the human colon in the same degree as fecal transplants. Because of this, they are never truly able to colonize inside the intestinal biofilm…google intestinal biofilm and it describes how bacteria build what are called ‘spores’ aka homes within the wall and make it difficult for small dosage of probiotics to effectively shift the balance in their favor.

    I feel like Im now using this thread to just post my thoughts about this condition and I apologize if I may have conflicting beliefs with many of those who think the answer is doctors/surgery/drugs. If that was truly the answer I dont think this site would even exist as clearly people are looking for alternative approaches to combatting UC and the fact that Adam created this site has truly helped myself and many others. If there is one thing I would like to express it is simply the fact that the 99% of all the approaches, whether they are diets, drugs, surgeries, other alternative treatments…they all focus on trying to control the body(drugs) or somehow unlock the body’s unknown healing powers(most supplements, natural remedies). These are all great, and I do not discredit anyone who has had tremendous success following these approaches. However, Fecal Transplants are the only approach that directly targets the bacterial imbalance that is the cause of UC in the first place…probiotics do as well but they are not permanent like FT. I have spent thousands, I dont even know it makes me sick thinking about it, on trying to control the pancolitis I had, and I literally spent like 60 dollars on EVERYTHING NEEDED TO DO FT and I am cured. Sure its gross, but so are all the symptoms that come along with colitis (crapping blood 20+ times a day etc etc) so the whole “yuck factor” should not be even a remote reason why someone is afraid to do FT and cure themselves of this terrible condition.

    • bev June 4, 2013 at 2:04 pm #

      I know what you mean…I am always sort of worried about possibly ‘rubbing someone the wrong way’ with my belief that UC is not a disease, that it is curable, and my being ‘against’ the doctors meds as a whole…I don’t mean to offend,. I just feel so strongly after all that I’ve been through. I get so angry that new patient after new patient (and I use the term ‘patient’ sarcastically) is prescribed the merry-go-round of UC drugs according to protocol, and get the same BS spiel from the medical community.

      I would have the FT in a second, if they would have ever phoned me. The call never came, and I never followed up, because, well, as I say, I am in remission. I believe the FTs are far better than oral probiotics as well, Mark, in that they are directly where they need to be. I should look into it again…I’d love to not have to take probiotics orally forever… they are pricey.

      You don’t take oral probiotics, I suppose?

      Bev

      • MarkFN June 7, 2013 at 2:00 pm #

        Bev,
        Yes you are right that taking probiotics everyday can become very expensive, especially if you need to take the VSL brand or some of the other super high CFU options available. I took probably about 15 different brands/types of probiotics and while I cant say I didnt see any improvement, it was nothing close to remission. So basically I was taking probiotics for about 2 years and I continued taking them as I did the fecal transplants. I stopped taking them after about 2 weeks of doing fecal transplants because I ran out of the bottle,I was sick of spending so much money on supplements per month, but most importantly I wanted to see if it would have any effect on my lack of symptoms. 6 weeks later I havent taken a single probiotic and absolutley nothing as far as symptoms.

        My whole goal was to try to get to what I considered a truly normal and cured person. In my opinion, this is someone who can eat whatever they want and not have to rely on tons of supplements or drugs to maintain healthy…aka probably 95% of us before we got sick. I realize this might be an unrealistic goal for many to achieve due to the other health complications that arise when we get sick, but it was my goal nonetheless. Lastly, taking a fecal enema from a “healthy poop” is thousands of times more potent than anything that can be purchased and yes, it is going directly into the problem area making it even that much more effective.

        • bev June 7, 2013 at 5:55 pm #

          That’s my goal, too, Mark. I asked about FTs at my GI’s office yesterday, but the receptionist had no info. I so want to get them done-as many times as I need-to be fully normal again…just like you.

          I would like to reach that place…no supplements necessary…just like before I got UC!

          Thanks for the awesome reply…as per

          Bev

  18. lynne June 4, 2013 at 2:01 pm #

    MarkFN,

    Thank you for your posts. I super appreciate them. You have helped me understand FT all the more just by the way you have worded it out. Please keep posting. The knowledge, experience, & information you hold may mark a turning point for some here on this site.

    I do get stuck on the gross factor of FT but I know that if I was sick enough, I’d do it. It’s also a little freaky to think of asking someone to donate. Did you have a family member, spouse, friend?? It’s not like you can go buy healthy stool at the store for these enemas – Ha. So, it requires quite an interesting commitment from a very special person. Not everyone would feel comfortable doing such a thing.

    My mind tends to go straight to the practicalities. But, I do think inquiring minds want (& need) to know. :)

    Thank you, again, for your posts. They are powerful.

    lynne

    • bev June 4, 2013 at 2:06 pm #

      Right you are Lynne!

      How are you doing, my friend?

      :)

      • Lynne June 7, 2013 at 10:44 am #

        Hi Bev,

        I sometimes get very introverted and quiet. Such an over-thinker and probably way too intense sometimes! But, particularly this past week, I’m MUCH better. I almost hate to say anything … don’t want to jinx it. I’m such a dork. ;)

        I do believe the l-glut is gradually making a difference, along with the aloe. I’ve also started taking curcumin 2xday, which is a natural anti-inflammatory. And my probiotics, of course. And there’s one other thing … some people prayed for me one week & 3 days ago. That is when I started getting better. Markedly better. Hm.

        Still here,

        lynne

        • bev June 7, 2013 at 11:45 am #

          Oh Lynn…how wonderful…really.

          I understand. I sometimes don’t want to say things out loud just in case…lol. You are not a dork!

          Keep doing what you are doing. Take your stuff every day. Like I’ve said before…even over a year later, I’m still noticing that I feel better and better! Perhaps the l-glut heals the colon more and more over time! Makes sense.

          I am truly over the moon for you, as I am for each one of us who suffers with UC, and finally sees and realizes a better day. Living in a flare it is an ugly way to live. There is nothing better than feeling better. Oh Lynn!! I could cry with joy…

          Bev
          xoxoxo

  19. MarkFN June 4, 2013 at 3:59 pm #

    Lynne,
    I just hope my comments help others to look at this condition from another perspective…a perspective that this is not some incurable disease that we have to live with our entire lives. I feel so strongly on Fecal Transplants that I believe it to be 100% criminal and a complete failure of the medical community that this knowledge is not out there. If you do a little research, you will see its is now offered as a legitimate option in curing C Diff. The FDA is literallly trying to patent “poop pills” so that patients can simply take them orally…crazy I know. Clinical Trials of FT are currently going on for people with UC and I expect that the results will be tremendous. However, these trials do not offer the patients the ability to do as many transplants as possible to totally make sure the bacteria is reset. I read of one in Hamilton, Ontario where the patients recieved 1 transplant per week for 6 weeks. This is probably not quite enough in my opinion. I think it takes a lot to get to the point where our colons become ulcerated and therefore it takes a lot to reset them with the correct bacteria…5 or 6 infusions might not be enough for a lot of people in my opinion but I may be wrong. Yesterday I actually just posted my entire experience on another thread on this website titled SURGERY SOON so you can read that if you want to know exactly what I did. I used my 14 year old brother as the donor…I was forced to move back in with my parents the last year as I have been sick and it was very easy/convenient because I didnt have to pay to get him tested for diseases etc.

    I believe this should be the absolute first method of treatment in dealing with colitis…sadly it is the last. When I first got diagnosed, I knew nothing about diet or medicines or anything, and I believe that if fecal transplants was the first method of treatment I still wouldnt know a damn thing about diet/nutrition/ healthy living and I wouldnt even know how bad this condition can really get. THIS HAS GOT TO CHANGE. Too many people are taking these horrible drugs, which I took all of them myself so I know the whole deal, which result in horrible side effects, or ultimately conceding into surgery. This has got to stop, its crazy how people refuse to believe that colitis is a bacterial imbalance in the colon, not an incurable autoimmune disease.

    • bev June 4, 2013 at 5:43 pm #

      OMG! OMG!

      This IS crazy! YOU ARE SO CORRECT MY FRIEND!! All of those drugs do nothing but further damage. Treatment is totally skewed and is approached from a totally wrong angle.

      Autoimmune DISEASE? I think not! I always thought not!! Bacterial imbalance…YOU BET!!

      Colon removal the final result?? Seriously?? I don’t think so!

      EVERYONE TAKE THIS IN…THIS IS WHAT NEEDS AND HAS TO BE SAID. SAY IT TO YOUR DOCTORS. TELL EVERYONE!! DEMAND FTs!! DEMAND AS MANY AS IT TAKES!! ONLY WE CAN CHANGE THINGS.

      Sorry to scream at the top of my lungs…I’m sorta passionate about this.

      Thank you MarkFN. Thank you so much. We need you and I’m f***ing glad you’re here.

      Bev

    • Lynne June 7, 2013 at 10:33 am #

      Thank you MarkFN. I read your story in the SURGERY SOON thread. Thanks for sharing that. I, too, have always believed uc to be a bacterial issue and have never considered it a “disease”. I have instinctively felt that way from the very moment I was diagnosed 7 years ago and had no idea what uc even was. It seems to me that there IS a cure, and it is fecal transplant. I also suspect that one day we will look back on this rudimentary way that people had to reach for their cure. You are a pioneer. Thank you for sharing it with us. It gives me hope.

      lynne

  20. Wendy Jean June 4, 2013 at 5:52 pm #

    Thank you so much for the info! Michael and Mark: Very interested in the transplant…but as for me personally the acupuncture it is something that balances me and keeps my body working well in every aspect. It is inexpensive and I will probably continue it as long as I can. My acupuncturist ends the treatment with a 30 min massage…so it is kind of a treat for me! But I agree with you about the Doctors masking symptoms. I so want a natural cure for this! I hate taking meds. I have never been one to take tylenol even. I also have a hard time getting my head around the fact a disease could just “be there” for 46 years and just now show up! I have been very healthy other than the muscle pain I use acupuncture for, so that does not make sense to me at all. Something being out of balance in my body makes so much more sense!

    How does one go about having the transplant done? Do you have to test positive for c.diff?

  21. Michael Hurst
    MichaelKHurst June 5, 2013 at 12:01 pm #

    Wendy,

    The fact that you are otherwise healthy and then a disease shows up is more similar to an infectious disease. In many respects the onset of symptoms for Ulcerative Colitis is similar in many respects to infectious traveler’s diarrhea and c. diff Colitis. However psychological factors can play a role since diarrhea caused by emotional distress can alter the bacterial balance in the colon. Then the cycle of inflamation and diarrhea ends up being self-perpetuating after that.

    Keep the Acupuncture if you like it and think it otherwise helps your health and well-being. Remember the fecal transplant process and associated drugs and supplements that you might also want to use as part of the process are temporary. This could be anywhere from one week to about six weeks possibly followed by another few months of close monitoring, taking extra care with your diet and management of emotional stress just to make sure it really has taken and then you are done.

    I think doing fecal transplants for at least two weeks or so while actively calming diarrhea using anti-depressant / anti-anxiety drugs or herbal supplements and making sure you get plenty of protein to rebuild the intestines is crucial. Once you break the vicious cycle it’s broken and you can get back to living your life.

    I see no way that Acupuncture can directly change a bacterial infection or imbalance inside the body. However acupuncture could help by treating Irritable Bowel Syndrome (IBS) symptoms by slowing diarrhea and calming muscle spasms and calming inflamation. I used psychiatric drugs and herbs for that part of it in addition to hypnosis tapes and positive thinking / visualization, however acupuncture might offer some additional help too.

  22. Allison-3
    Allison June 11, 2013 at 3:59 am #

    WOAH!!
    Took me all morning to get through this thread.
    I think UC is a crazy journey with many twists and turns and peaks and valleys… but in the end we are all forced to really know and hopefully LOVE our WHOLE selves.
    UC is obviously not just about the last six inches of our colons (this is the only thing the GI docs treat)…. but about genetics, environment, stress, our pasts, diet. exercise, bad habits, thought patterns, meds etc.,
    I have been given an incredible chance to TRULY get to know myself and for that I am EVER grateful.
    I appreciate everyone’s advice because I trust you all WAY MORE than any GI doctor.
    SO thank YOU ALL!
    I am finally out of my second flare (lasted nearly a year). Med-free and having GREAT success with 50 Billion probitoics, curcumin (2ooomg with piperdine), Vit D, George’s Aloe vera, liguid micro-minerals, and BEV’s Ll-glutamine (HAH!). Also, chilling out and a gluten, milk and alcohol free diet.
    Keep in mind, every system is unique… so never stop exploring what works for you.
    And who knows I’d totally give FT a try if I needed to… it is quite intriguing!
    I wish EVERYONE all the best and HEALTH!
    ALlison

    • bev June 11, 2013 at 7:49 am #

      Tears of joy, Allison…tears of joy.

      Every time somebody on this site finds that ‘thing’ (or things, as the case may be) that finally gets them to that good place, I am so happy that I end up crying! You know how bad UC can get…it’s the most awful thing to have while it’s flaring…ugh

      Remember, I truly truly truly believe that it is NOT a disease…no matter what the medical community says. It is a CONDITION that is totally curable…no matter what the medical community says! Anyone who gets UC has simply lost their good intestinal flora, and trying to treat it with those harsh UC meds only makes things worse, because that does not fix the root of the problem. Good bacteria needs to be replaced, and the ulcerated colon m=needs to be healed. Only then will you have TRUE REMISSION…only I don’t even like that word…I like the word CURE!!!

      I could not be happier for you, my friend. Like I said, every one of the UC sufferers that finally finds relief is the best thing in my world!!

      Smile girl…YOU DID IT!!

      Bev
      :)

      • Allison-3
        Allison Tranter June 11, 2013 at 8:58 am #

        Bev-
        You are just AWESOME & TOTALLY RAD!
        Yes! As bad as we can feel with UC… we all must remember UC can never take away the true joy in life… and really UC has actually made me such a better, more loving and patient human being.
        Thanks for sharing your love and support and advice. It is life-changing!
        XO
        Allison

        • bev June 11, 2013 at 9:02 am #

          :)

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