My Downhill Journey with UC

A little bit about me: I’m a South african living in Europe. I’m 35 and I was diagnosed 5 years ago. I started getting ill about a year after arriving in Europe after a major stress in my life which I believe to be the cause as there are no cases in my family of this disease.

Since I’ve been diagnosed I’ve been more or less trapped here unable to go back to SA because the treatment I receive (remicade) is very expensive. I’ve tried pretty much everything, and probably bought all the books regarding this horrible disease, followed peoples advice on forums, tried the SCD diet which helped with flatulence but not with diarrhea (tmi I know!) but with no result, I continue to live from my bedroom to the toilet.

Fast forward to today: I’ve decided that I want to stop the meds and go back to SA but I’m so scared of the consequences or if I need a blood transfusion etc, so while researching the internet I came across a cure for crohns, its called stem cell therapy. Anyone heard of this? Basically they wipe out your current faulty immune system with chemotherapy and then take healthy stem cells from your marrow and harvest them and then implant them where they regenerate and your immune systeam becomes healthy again! I dont know if UC candidates will be able to do this but I’m so ready to do whatever it takes. They’ve done 6 in Spain and 4 in Italy and I think about 14 in the US (dont quote me on that) and since then they are Crohns free living normal lives… this is all I want and I’m sure all of you do too!

A year from now my wish is for this nightmare to be over:-(

13 thoughts on “My Downhill Journey with UC”

  1. Whooooh. Slow down there horsey.

    Wouldn’t you try worm(helminth) therapy(available in UK/Germany) or fecal transplant(FMT) before trying some fairly unproven stem cell therapy?

    From what I had heard stem cell treatments had definite anti-inflammatory effects, but were not a cure. They would also put you at increased risk of cancers. And you would have to take chemo drugs.

    Worms and fecal transfer have been around for a long time, although they are not without their own risks.

  2. I’m at the end of my rope here;-)
    I did check out the whipworm therapy but they say it only lasts for 20 weeks and its almost $3000 and for FMT you’d have to find a doc willing to do them and mine refuses.

    I checked out this story he has been cured of crohns as they developed a new immune system for him.
    Remicade and most of the meds for UC also put us at risk for developing cancer, this is why I dont want to take them either.I do think this would be the last option but this disease is depressing me to the point where I’m pretty much willing to try anything.
    I am optimistic of one thing though, the fact that new “cures” are being introduced and there are so many options available to people with UC but nothing seems to be working for me.
    I am off for a sigmoidoscopy this morning, fingers crossed x

  3. Hi Ronnie…

    I haven’t heard about the stem cell procedure yet, but it sounds promising…minus the chemo of course, lol…there always seems to be something new to try. I just wish that they were more natural than chemo having to be involved. I think natural treatments are closer than we think…we just gotta hang in there a bit longer…I know, I know…how much longer can we???

    I know about feeling at the end of your rope and completely desperate and willing to try anything. I think we all reach that point…sometimes even more than once! This condition SUCKS!

    Take care and keep us all posted…and don’t damage your body in the process. You really have to be careful with the dangerous meds and perhaps even dangerous procedures. They are always looking for willing guinea pigs to try anything new, don’t forget. It does not mean that it’s safe…

    Cheers, and all the very best,

  4. Hi Bev,

    Thanks for the positive vibes, I read your story and I must say you are my hero!! I think you are so brave and I wish I had the guts to do the same.
    Well good news and bad news today, bad news is that I’m not responding to remicade as they say the disease is still active:-( But then again I think it could be a blessing in disguise as I never really liked putting this poison in my body. Just curious about something, have you done a colonoscopy since you’ve been “cured”? When I checked out Robert’s website who was cured from Crohns, I was also thinking how brave he is because in his videos you can see how sick the chemo made him, the part that scares me is where he says he could feel all his bones aching and he had a fever for several maybe I’m not so far at the end of my rope;-)
    I hope and pray that they’ll find a cure soon, one where we don’t have to suffer too much
    Take care xx

    1. Hi again Ronnie!

      You DO have the guts to do whatever you feel you should do, deep down! Trust yourself…you probably know more than you think you do!

      Remicade will ultimately fail too, anyway, so be glad that you’re off of it. Poison is right! I remember my specialist trying to coax me into taking it. I’m so glad that I didn’t! I wonder why they keep prescribing it to people. It seems that it fails in 100% of cases, eventually!

      No, I have not had a colonoscopy done since ‘remissing’…(is that a word?). My doctor wanted me to, but I declined. I have had 5 colonoscopies in my 15 years with UC, and every time, they caused me grief in one way or another. I look at it this way…millions of ‘normal’ bowelled people never even have one…I feel good right now…and if and when I don’t feel good anymore, THEN I’ll consider having another one. You know what I mean? It ain’t broke right now, so there’s nothing to fix, as far as I’m concerned. As for an increased cancer risk because of UC…well, I’m not exactly sold on that fact, either. Not sure I believe that.

      I hope a CURE will be found soon, too. A NATURAL one, I’m sure, because I think that is the ONLY way. Our flora has gone awry somewhere along the line, and suppressing our immune systems (one of the stupidest things I have ever heard, by the way), and other harsh treatments are NOT the cure!!

      Take care my friend…we can do this!!

  5. Hi Serena,

    The fecal transplant can be done by anyone at home, as long as you can find a suitable doner, and can handle the task at hand. It is generally very effective. The procedure is available if you google.

    20 weeks for whipworm? Trichuris trichiura infections last for up to 7 years:

    But those guys(uk based) will guarantee 2 years. The two therapies work quiet well consecutively, the FMT will normalize the gut bacteria in a few days. And the worms will help maintain it for a few years, possibly longer.

  6. Thanks for the info Anydy, I’ll definately check out those websites, it makes me more hopeful:)Yes, I read that whipworm only lasts 20 weeks which makes it an expensive treatment!If it’s longer that’s great, which means I’ll only have to visit Mexico twice a year :-)
    The GI just told me that I have the CMV virus and now I’m on antibiotics for a month.
    I do have my first solid one (tmi I know) today, but I think that may be from the Biokult probiotics I’m taking.
    Good luck to you on your journey:)

    Serena xx

  7. Hey Bev!
    You’re so sweet:)I’m just so scared I’m going to land up in hospital without meds, but right now we’re concentrating on getting rid of the cmv virus, GI thinks this may be why I’m not responding to remicade. It has way too many side effects too. I’ve developed psoriasis because of it:-(
    You’re absolutely right, don’t get the colo if you’re well. Have you found that there are certain things you cannot eat or can you eat pretty much anything?
    I’m on Biokult probiotics which isn’t as strong as the one you’re taking. My body protested for about 2 weeks when I started taking it, cramps gas etc but now I think I’m used to it and it seems to be getting better.
    Keep us updated on your journey Bev, who knows maybe you’re the one to find us a cure!!:)

    Serena xx

    1. Hey Serena…

      I find that only too much wheat at one time bothers me. That’s about it! I can eat anything else.

      I don’t want any of my well meaning advice landing anyone in the hospital! You’re correct…we are all different. I am not advocating stopping meds to anyone else other than myself.


  8. Hey Bev!
    Don’t worry, I didn’t think that you were advocating stopping meds.

    That’s great that you can eat almost anything. This is a stupid question but I’ll ask it anyway, Are you on any immuno suppressants even natural ones? What exactly do you take everyday? I currently have no immune system because of the suppressants so I catch everything that’s going around! I’ve had the flu vaccine but caught it twice in the space of 2 months!!
    I do want to stop the meds, that is my goal.

    I hope you continue feeling great and thanks for the inspiration:)

    Serena xx

  9. Hi Ronnie,

    No, I’ve never been on immune suppressors, luckily. The doctor recommended them to me when everything else stopped working, and that is when I said NO MORE MEDS.

    I take one capsule of a 50 billion strain probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE), first thing in the morning, empty stomach. Two scoops of fermented L-glutamine powder in a bit of juice about an hour before lunch, and then right after eating lunch, I take vitamin D and one 4mg capsule of astaxanthin (a natural anti inflammatory). I take the vitamin D and the astaxanthin right after I eat because they are better absorbed with fat.


  10. Thanks Bev,
    I’ve only been taking 1/2 tsp of glutamine, maybe that’s why there’s still some bleeding.
    sounds like a winning combo, I’ll definately try it, at this point I’ve got nothing more to lose :-)

    Serena xx

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