Ulcerative Colitis Tips


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Heart Attack- Cured Ulcerative Colitis

Introduction:

8 years with UC
4 or 5 colonsocopies to date
4 times been told to have surgery…I declined with a passion to get well myself.
Not taken steriods for 2 years, happy with my choice as my lower back bone density was a bit below average

Some more about me:

I just a nice guy aged 31 from the UK light framed 5ft 10″, very skillful with my hands (a former carpenter) but I have a natural talent of learning anything new in a short amount of time. I would have lots of hobbies if my UC wasn’t an issue, such as getting wasted in the sunshine on holiday, clubbing, motorbikes, golf, snowboarding and smiling with good friends. My actual hobbies with UC include watching Tv Shows, computer games.

Symptoms:

For a very long time with very little breaks I have been sprinting to the loo from about 5 to 7 times a day, patches of 10 to 15 times a day which is what I call a bad flare for me. This year has been my best yet s ofar with trips from 3-5 times a day I think it’s to soon to predict i’m getting better as the hot weather sometimes changes my UC for the better.

Heart Attack- Cured Ulcerative Colitis

Hi all Richard here I actually wanted bring up a subject about a guy I was talking to in the waiting room for my last colonsocopy which was over 3 months ago.

So I was sitting their in my dressing gown and sat down across from the other nice older chap who looked rather well considering he was about to have a colonsocopy. It’s not the most fun thing to have when your feeling bad so I asked him if he had UC and he said he used to. I asked him how did he cure his UC to which he told me with a smile ‘oh I had a heart attack’, ‘which cured my UC’. Wow I said. He said he was just here to have it checked to confirm he was cured. Nurse came in and took him in so conversion was cut short.

This was all I wanted to share, I guess I wanted to learn what happened to the guy who cured himself? Who survived a heart attack and as a result cured his Ulcerative Colitis. If you have any logical reasons to the why please share your ideas.

Right so this year I started buying lots of new stuff to try to see if any of it works, most of the suggestions come from reading peoples stories and I thank you for the good suggestions. I would like to try that Fecal Microbiota Transplant Therapy, but since I am from the UK I think this kind of thing would take another 5 years to get to the UK, so does anyone have a good suggestion as to how I can get this FMT in the UK? does it cost loads? how does it work? IF you made it this far down I thank you for reading :) cheers Rich.

Medications and Supplements I’ve Tried:

octasa 800mg x6 per day.
x1 VSL #3 per day (would like to try more but woo cost to much money)
x1 Ultimare Flora Critical Care 50 billion blah blah
x1 Hawaiian Astaxanthin 12mg
x1 Marley’s Mellow Mood relaxation drink (would drink more but costs to much, good stuff)
x1 teaspoon of L-Glutamine powder (maybe would take more if I actually exercise lol)

written by Richard

submitted in the colitis venting area




20 Responses to Heart Attack- Cured Ulcerative Colitis

  1. Andy August 4, 2013 at 11:42 pm #

    http://guidance.nice.org.uk/IP/1096

    There was a guy doing it on the NHS up in Scotland but I can’t seem to track down a link.

    • UC Family Boy
      UC family boy August 5, 2013 at 1:45 pm #

      Hi,

      I’ve contacted this nhs and they did not get back to me. I told them I have UC and they only do the procedure for C.Diff.

  2. Don
    Don August 5, 2013 at 6:51 am #

    You can do fecal transplants at home. There is a lot of info on the internet about it.
    http://fecaltransplant.org/
    http://thepowerofpoop.com/
    http://www.fecalmicrobiotatransplant.com/2012/12/ulcerative-colitis-long-term-remission.html

    I am preparing to do this myself.
    Don

  3. Caroline
    Caroline August 5, 2013 at 11:47 am #

    Wow – I wish you had gotten to continue the conversation. How intriguing! Maybe having a heart attack brought around other life changes – diet and stress management – that did the trick for him? Glad to hear he seemed to be doing well regardless! :)

    Hope you feel better soon – UC is a big game of figuring out what works for you and then sticking to it. Through lots of trial and error, I take apriso now for maintenance, VSL DL as a probiotic (if you aren’t taking a good probiotic I strongly recommend it!), L-glutamine powder to heal the gut lining, and Vit D/Fish Oil/Astaxanthin for anti-inflammatories. I also follow the paleo diet and know that has a big part in my healing – I feel great and eat fresh fruits and veggies, with good quality meats. Life is good – keep trying different things and finding out what works for people here!

    I don’t know a ton about FMT but hear great things about it here – and somewhere I know i have seen links to instructions to do it at home, even. Definitely worth investigating! Good luck!

    :) Caroline

  4. UC Family Boy
    UC family boy August 5, 2013 at 2:10 pm #

    Hi Richard,

    There is a clinic called Taymount clinic in Hitchin that does this procedure. I paid £150 for an initial consultation. We discussed a lot of what Glen knew, personally I felt you could of got more of a structured meeting for £150. I left the meeting no closer to the good. For 10 infusions of 100ml of donor and using a enema process for £4000 I felt it was not efficient enough personally. He also wasn’t encouraging when I asked about doing the procedure for IBD and results. I sense the procedure is best designed for C.Diff where he also saw his best results. Although he apparently discussed the procedure with Brody, it wasn’t really anywhere near what Brody did (smaller amount of donor and does not use a colonoscopy). From this meeting I decided to do it at home and as yet not done it but putting things in place to do it.

    You are right, in the uk we are some way off doing it but out health system is not driven by private health care. Maybe try the home procedure, see how you feel and more forward from there, or just have a heart attack!!lol

  5. Michael Hurst
    MichaelKHurst August 6, 2013 at 12:50 pm #

    Hi Richard,

    That is fascinating that a heart attack appears to have cured the guy. It’s possible that it may have somehow changed how his body responds to stress and that could have changed how his immune response and microbiota are working too .

    For fecal microbiota transplant, you really only need a doctor to prescribe tests for your donor and prescription drugs for you which in most cases can already be prescribed by your doctor. Even if you go through a doctor in most cases they might do the first one using a colonoscope (which in the U.S. is sometimes billed by doctors as a colonoscopy) while leaving you to do follow-up FMT using enemas at home. That was the plan I was given to me by a doctor two years ago before I ended up just doing it myself for Ulcerative Colitis.

    So far the most directly available results come from using FMT to treat c. diff, however there are several studies underway using it for UC. The problem I think is that FMT alone isn’t going to be enough to completely cure UC for most people. For c. diff it really is as simple as just doing the FMT and the illness usually resolves almost immediately.

    In my experience the path toward healing from FMT involved supplemental protein nutrition as well as anti-inflammatory, immunosuppressant and anti-depressant drugs. I think the process can be more complicated for Ulcerative Colitis in part because inflammation goes deeper into the lining of the colon with more damage to the gut barrier. This means that you need to do more than just fecal transplants, you also might have to manage an immune response to the newly introduced bacteria which could contribute to a flare and also do more to heal the gut when it comes to nutrition and also manage complications that could be related to the presence of diarrhea pre-dominant IBS which can both make UC worse and also result from UC.

    Since chronic diarrhea can have an impact on the microbiota, it stands to reason that slowing it down could be a necessary path to making FMT work for UC.

    • UC Family Boy
      UC family boy August 7, 2013 at 11:08 am #

      Michael,
      You make some very good points worth considering/learning more about

  6. Richard August 6, 2013 at 5:01 pm #

    thxs guys this will help me research FMT a bit more the links really help.

    I do take the VSL along with Ultimate flora critical care once per day was wondering if I should double the VSL it says you can take up to 4 per day (stuffs not great tasting tho lol). Expensive stuff but I don’t mind trying more of it.

    L-glutamine powder check good stuff

    Arabiongalactan powder found this hard to find in the UK so I ordered from Vitamin Grocer UK (ships from us) not sure if it helps me yet but easy to drink.

    Astaxanthin taking this

    Vit D I wasn’t taking can do that once this lovely sun stops in the UK (nice weather for once this year)

    I got some omegaXL which is like fish oil I think maybe I can take more of these

    I still have a lower than average blood count/ iron seems to not absorb well in my body in the last 2-3 years. I try to take Floradix iron and normal iron syrup in the evening. I don’t think they work tho, does anyone else struggle with lack of iron/anemia if so how do you fix it? Iron transfusions once per year don’t seem to last long either.

    • Caroline
      Caroline August 6, 2013 at 5:17 pm #

      Hi Richard! As far as the VSL goes – are you taking VSL or VSL DS? DS is twice the strength, but from what I hear you can increase the dosage heavily if you are experiencing active symptoms. When things were more active for me, I did 2 packets of DL each day but now only do one for maintenance.

      Vit D is awesome -I have heard a lot of people had success with it! As for your iron count, I haven’t had an issue with that since other symptoms cleared up. I am sure someone will have some good guidance for you on that piece!
      Good luck!

      Caroline

      • Richard August 7, 2013 at 10:20 pm #

        Excellent tips ty Caroline and Bev, trying real hard to find that Ironsmart in the uk, no luck yet! Going to get some Vit D. The VSL3 is what I was taking comes in a box with 30 sachets 450 billion bacteria is this the best one? I can change it need to order more next week, think I might double up on this tho seems to settle ok.

        Thxs Ed I will ask my specialist nurse at hospital to ask around for me about trails in the Uk she is a really helpful lady who seems to want to help more than those depressing gasto docs do (not all are bad but still).

        thx Richard

        • Caroline
          Caroline August 8, 2013 at 6:22 am #

          Some people do great with the VSL3 – the one that I have, the VSL DS (Double Strength!) is by prescription so my insurance pays for a good portion of it. They have 900 billion bacteria in them, so exactly twice the standard sachets. Is it overkill? Maybe! See how you do with the standard VSL – increase the dose if you think it may help. I knew within a couple of days that it was going to be something important for me! If you do play with increasing the dose, just know that you might have some gas or other symptoms as your body gets used to it. Keep us posted!

        • bev August 8, 2013 at 7:42 am #

          I’m not sure about the availability of Ironsmart n the UK! I wonder if you can order it online?

          It’s the only iron supplement that has ever actually worked for me…and I’ve tried EVERYTHING…lol

          :)

    • bev August 7, 2013 at 7:28 am #

      Hi Richard,

      I have tried to take iron pills, and they made me so sick I could not even continue them. Then, I tried iron shots and iron infusions…all to no avail.

      The best thing I’ve taken is called IRONSMART…a liquid iron that you can safely double the dose of, when your iron is low…it tastes like caramel and does not make me sick at all! I swear by it. I still take the minimum dose every day (cause I’m a woman) even though I am in remission and my iron is normal. It’s great stuff!

      Cheers,
      Bev

  7. Ed August 7, 2013 at 1:43 pm #

    Hi

    There is a trial for FMT for Proctitis at ST Marks. I have UC so didn’t qualify. My point is that it may be closer than you think. I’ve tried FMT at home but it hasn’t done anything, I even tried making my own shills (shit pills). I think the antibiotic is need first or that the bacteria need to be administered so they don’t get killed by the stomach acid or by osmotic shock.

    • UC Family Boy
      UC family boy August 8, 2013 at 10:58 am #

      Hi Ed,

      Do you have any thoughts on why it didn’t work? Il be keen to hear about your experience of trying FMT
      Taz

  8. Ed August 8, 2013 at 11:39 am #

    Hi

    Right well first I didn’t have an anti biotic first
    Second by using homemade saline I may have caused osmotic shock and killed the beasties
    Third the enema might not go high enough in the bowel
    Fourth I only did it daily for a week and that may not have been sufficient enough time
    Fifth the donor was not a family member

    I’ve been flaring for two years now, would try anything if it worked

    Ed

  9. Michael Hurst
    Michael K Hurst August 8, 2013 at 6:36 pm #

    In my experience using FMT as part of a treatment regiment which I consider has effectively cured me of Ulcerative Colitis, I don’t think any of the factors listed above except the 4th one (only doing it daily for a week) are reasons why it didn’t work (more detail on my story in the category for FMT on this site as well as on my website http://www.FecalTransplant.org)

    1) I didn’t have an antibiotic immediately before FMT, however both Cipro and Vancomycin did help me get into remission in the past. If I had it to do over again, I would do a course of antibiotics first since I had responded well to them in the past. While it did ultimately work for me without pre-treating with antibiotics. However Borody’s first successful patients were pretreated with antibiotics and it might allow the newly transplanted bacteria to become established more quickly.

    2) I also used home made saline using 9 grams per liter give or take a little since after awhile I just eye-balled it. If you added too much salt it might have increased the laxative effective of it, however I don’t know if it would have necessarily killed the other “good” bacteria.

    3) I used a rectal syringe for self-administered enemas, presumably I did not get the solution all the way up the bowel, although I did elevate my hips and move from my left side to back to right side, to back again sometimes to help the mixture work its way up my colon. Borody’s patients who did fecal transplants for 5 days were using a colonoscope every time, maybe this helped speed up the colonization process over self-administered low-volume enemas.

    4) I did it every day for 5 weeks and then stopped cold turkey. It’s hard to say if this was necessary or not, or if I could have gradually reduced it to once a week over time. However Borody’s patients stayed on maintenance drugs for about 6 weeks after FMTs. I stopped maintenance medications but then ended up piling them on to make things work for me.

    5) My donor was not a family member, just a former client from my dating coach business who had good solid poop consistently once a day for his whole life. I think my donor ended up being an exceptionally good donor, however I did face a flare that I controlled with medications.

    In addition to that, I added Prednisone, Mesalamine and protein supplements which contained high amounts of L-Glutamine among other amino acids and then later the antidepressant drugs Bupropion and Doxepin. It was the addition of these last two drugs that put me over the top about a day after adding them to the treatment regiment.

    Recently I had a string of chronic watery diarrhea and gas that lasted almost 3 weeks (although it was only 2 – 3 times a day with no blood.) I was just starting to get a little worried when I went back on Bupropion (Wellbutrin) for two weeks. The diarrhea stopped and has been replaced with solid, well-formed stool.

    This solid poop has been in spite of living off fast food, frozen dinners, beer and 5 hour energy (which at least does have high amounts of B vitamins) while working long hours. The solid stool has continued for a week now after stopping Bupropion again. So I am increasingly coming to believe that Bupropion might actually be the one of the primary reasons for my two year long cure along with FMT and protein supplements after coming to the brink of surgery. Given the drug’s safety when taken at low to moderate doses of 300 mg a day or less, affordability, TNF inhibiting properties and lack of significant negative side effects for most people I think it is definitely worth adding to your treatment regiment to see if it can help.

    As for iron, like Bev I also had good results with a liquid supplement, Angstrom Iron. However I have also had good results with Iron Glycinate capsules (Vitamin Shoppe brand “Comfort Iron”) and high amounts of B vitamin supplements including liquid supplements, lozenges and self-administered injections.

  10. Ed August 8, 2013 at 11:07 pm #

    Hi Michael

    Did you notice a speedy improvement with the FMT that lead
    u to continue it for longer?

    • Michael Hurst
      Michael K Hurst August 9, 2013 at 11:11 am #

      Yes, initially things started to get better over the first few days. I wasn’t taking Prednisone and then stopped taking Apriso (once a day Mesalamine time release capsules.) Then things started to get worse again until the combination of drugs brought the illness to end. The reason I continued as long as I did is because I had spoken to Sky Curtis who had used this for her son. She told me from the beginning that it was going to take more than 5 days and recommended 3 months while gradually tapering down the fecal transplants. Here is a link to her story: http://www.thestar.com/life/health_wellness/news_research/2011/04/03/hospital_to_try_fecal_transplant_as_cure_for_superbug.html

      She also told me a family member was not necessary, just “a person with the best poop I could find.” So I recruited a former client / friend to be my donor and roommate because I was prepared for possibly months at this. Even once I took a break after 5 weeks, I was actually planning on going back and trying it again. However my sense of smell returned when I started taking Prednisone and I realized that even once I stopped the fecal transplants my poop still smelled and looked noticeably different than it had before, it was more like my donor’s. So I interpreted that to mean that the new bacteria had established themselves to some extent, so maybe that part of it was now ok.

      That is when I went back to searching for pharmaceuticals and thought that maybe controlling inflammation and healing the colon was necessary for the whole process to work. So about 6 weeks after I had first started the illness abruptly ended. About another 8 weeks later a colonoscopy revealed significant healing which confounded my doctor because the inflammation which had been continuous for 12 years was now healing in a patchy pattern, but it was definitely healing in ways that it had not in any of the past colonoscopies.

      I think to make FMT work for severe Ulcerative Colitis that has existed for many years that you need to simultaneously limit inflammatory response, increase nutrition to heal the colon and seed new bacteria and boost it until it has established itself. After going to the human microbiome conference I realized that the “old” bacterial colony will try to come back, as they showed happens after treatment with Cipro, although this often does not happen when treating c. diff. In the case with c. diff, even over time the recipient initially matches the newly transplanted stool from the donor although over time does develop some of their own bacterial flora diversity once again. I think with Ulcerative Colitis, its not necessarily pathogenic bacteria itself that is the problem, it also can be the balance of bacteria and diversity of the bacterial flora.

      Also since the gut barrier has been damaged by UC, potential triggers of inflammation are more of a problem because they can access layers below the surface and even the blood stream in ways that they otherwise would not. I think the reason SCD seems to help for some people is that it is eliminating some inflammatory triggers for a damaged gut barrier, while introducing “good” bacteria from pro-biotic yogurt. However if you can limit inflammation and establish a self-sustaining bacterial colony by introducing a sustainable mix or bacteria and an environment where the bacteria can properly establish, by limiting diarrhea, then you are over the hump and the vicious cycle of inflammation can become a self-sustaining cycle of health.

      BUT, it may take some time to break the cycle of inflammation, diarrhea, and bacteria. For me it was about 6 – 7 weeks, however by adding in the combination of drugs when you start FMT or even before it symptom relief may occur more quickly even as you continue this out for a few weeks.

      Without knowing the particular details of your case Ed, I think you were on the right track and it can work for you. If it could work for me after everything else had failed and I was left for surgery I believe it can work for almost everyone given the time and addition of nutritional supplements and drugs. However you might also have to add in nutritional supplements, protein, iron, B Vitamins, anti-inflammatory, immunosuppressant and anti-depressant drugs to the mix while doing the fecal transplants for longer, possibly gradually tapering them down and extending them out to 6 weeks or so for it to really catch.

      I can assure you, that the effort is worth it because this is a beatable illness, and that mindset was what kept me going. Fighting for remission where it can come back did not motivate me the way fighting for a definitive victory did. Everything the GI doctor and surgeon said was irreparably broken works, even “permanent loss of elasticity in my colon” proved to be wrong. I don’t have to worry about restricting my diet or having to pay the price, or worry about drug side effects sending me to the hospital, $100k + plus of medical bills or about the specter of surgery and its definite and highly likely complications. I can just live my life!

      Once you have healed the gut barrier and established the new bacteria, you may find that day to day diet doesn’t seem to make much of a difference anymore. For me this is such a relief because I had been dealing with special diets my whole life since I was a kid. Certainly this has been a huge life changing shift.

  11. Ed August 11, 2013 at 10:58 pm #

    You weren’t on pred? I can’t get off the stuff. The thing is I noticed no change after the five days. It’s particularly difficult for me as I don’t live with my donor but I do live with two others and there’s only one bathroom.

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