Desperate for Advice on Dealing with UC in a New Country

me on the location recce of a music video shoot for a local SA band

Meet Garon:

I’ve had UC for 9 years now and only since I moved from Revellex to Humira last year did I fully experience remission for the first time in 9 years. It has been a rather arduous journey to get here. Im 35 years old, well 36 on the 3rd January (tomorrow) and am going strong.

Some More About Garon:

I’m an aspiring film director, hopefully directing my first feature this year.
Been running a prestigious video production company for 15 years.
Live in Johannesburg, South Africa.

Current Ulcerative Colitis Symptoms:

Currently in remission finally. Used to experience a fair amount of bleeding for a a rather prolonged time. Luckily I didnt experience pain.

Garon’s Story:

My question for all you awesome people out there is one that requires advice and particularly from someone who has been through or experienced this as its quite a delicate process and if I say the wrong thing I could get rejected.

me with a well known South African actor who acted in a commercial I directed this year.

So I am looking to immigrate to Australia from South Africa. My wife has been doing this skills visa application for almost 14 months now and taken her literally months of time and cost us R120,000 (roughly $8,300) which is a huge figure here. We both did English tests and passed those and all in all it has been a rather arduous process with the final hurdle being a medical to which I told them I have UC and I’m on Humira and they replied saying that if the medication costs the country more than $49000 AUD in 10 years (roughly $34,000) then they will reject me instantly which also rejects my wife and our whole plan we had set out. This is not great as you can imagine. The calculations put Humira on $100,000 AUD in 10 years (roughly $70,000) and therefore I am told they will just reject us. First off I don’t know why they didn’t request the medical first thing and not last thing but that’s beside the point as right now I have to send them letters from my specialist to indicate otherwise.

So what I have done is I have a letter stating that I am in remission and stable. I have another stating that I will remain on my countries medical aid that covers Ulcerative Colitis as a PMB and I will remain on it while living abroad, coming back to SA to collect my medication yearly and sort out my scripts but an immigration lawyer has told us that this won’t cut it. That either I need to state I wont cost the country more than $49K or nothing I say matters. So this lawyer asked if its possible that other cheaper medication would work and also asked if its possible to get another diagnosis from another doctor indicating I could go onto different cheaper medication and all in all this doesn’t look very good for me as I have been on quite a journey for 9 years to get to this point where I’m finally on medications that work.

Has anyone been through something similar?

Do you know of any support groups in Australia that I could reach out to or someone I could contact that has been through something similar? Whether it be in Aus or elsewhere?

Any and all advice would be much appreciated.
I need to send all documents through in the next 2 weeks.

Thank you

Medication Situation:

So I started on Azapress and it didn’t work then moved to Asacol after a year which I thought was working but didn’t (3-4 years). Changed doctors and got put on Revellex instantly then eventually Humira after my 5 year Revellex trial period. Revellex seemed to be working but wasn’t and only after 5 years could I try another biologic.

Here I am on Humira for almost a year and its working incredibly well!

written by Garon

submitted in the colitis venting area

9 thoughts on “Desperate for Advice on Dealing with UC in a New Country”

  1. Hi Garon. I’m an Aussie and those figures seem outrageous. I probably wouldn’t have told them anything especially if your in remission. Lol. I know nothing about the drugs you mentioned. I only take Sulfasalazine. Salofalk Enemas when needed and the good old Prednisone If I really have to. Diet has kept me in control mostly. You could try contacting
    I pay about $40.00 per script for the Sulfasalazine for 200 tablets. I take 3 per day only.
    Good Luck mate.

  2. Maybe it’s a blessing in disguise what with all the forest fires destroying Australia right now. Maybe you should try coming to the UK? I’m finally on Vedolizumab/Entyvio which has taken me to a whole new level of remission and so after four treatments I’m wondering if I actually need to be on any drug. Might be worth assessing how deep is your remission. Can you go a bit further.

  3. Christopher Ricciardi

    Have a look at the paleolithic keto diet. They’ve treated a range of diseases including Crohn’s and UC with their prescribed way of eating (animal fat based diet). Anecdotally, I’m nearly off of my medications with it. Currently able to taper off the prednisone without a flare for the first time. (Severe pancolitis, was taking mesalamine and steroid dependent)

    I recommend having a look at the paper’s they’ve published, listening to Dr. Zsofia Clemens interviews which you can find on youtube or itunes podcasts to learn more.

    Best of luck to you and yours.

  4. Hi Garon, thanks for sharing. In this instance, in which such a huge life change (moving to Aus) hangs in the balance, you should just plain tell the Aus immigration people that you will not be a burden to society and cost over the 49k. It’s not dishonest if you find legitimate ways to control your treatment costs. Do what it takes to make the move that is going to be good for you and your family. Treatments and understanding of UC have been revolutionized over the past decade and we can rightly expect even more progress to happen in the next 10 years. So, choose yourself. Believe that you won’t have to rely on expensive drugs. There is plenty of great info on this site alone to help you explore ways to heal, cheaply. Worst case scenario of telling immigration that you wont be a 49k burden: you are allowed to move to AUS, you gain your permament residency in AUS, you incur expensive medical costs over 49k, they….deport you…not likely. Consider just writing the letter, and remain devoted to healing and getting better.

  5. Congrats on your remission. You are young, intellegent and healthy living with a chronic disease so choose your health over everything. Remission can be hard to achieve, so hang on to it.

  6. Myself, my father and his sister all have/had inflammatory bowel disease (IBD), each of us believed to have ulcerative colitis (UC).

    My first indication of a problem was chronic diarrhea at age 29, around the time of my father’s passing.

    My first IBD flare was at age 39, I believe due to a change in diet. I had gotten a job working 5 days a week in a restaurant (and continued working there for the next 3 years). Most days I’d eat something fried in seed oils, (also referred to as vegetable oils), sliced potatoes, sometimes fish that was caught regionally, then fileted and breaded onsite. Was it the seed oils? the potatoes? or both?

    Some time before or after my first colonoscopy and resolution of my first flare, I had switched from eating potatoes, sliced and fried in seed oils, to baked potatoes with real butter, which leads me to believe the problem was the seed oils.

    My gastroenterologist encouraged me to try the specific carbohydrate diet (SCD) – (this was in 2000; a rare recommendation by a gastroenterologist at that time). I’d always eaten eggs for breakfast, but added a 7 vegetable soup prepared from scratch for lunch or dinner. Most dinners consisted of meat and cooked vegetables. My flare began improving after the colonoscopy, and continued to improve in the months afterward as I continued on a mostly SCD, though not strictly. (I was still eating some bread and included kidney beans in the 7 vegetable soup).

    At age 50, I was diagnosed with non-celiac gluten sensitivity (NCGS) so stopped eating processed foods made with wheat, rye, and barley, but continued to eat processed foods made from other grain flours that were “gluten-free”.

    At age 54, I learned that my diabetes had significantly worsened, and luckily stumbled upon and started the low carbohydrate/ketogenic diet (LCKD) which interestingly is similar to the SCD. Incredibly, the LCKD put my type 2 diabetes was in complete remission within 6 weeks.

    Now on the LCKD, I missed eating gluten-free bread, scones, cookies, and cakes, so began making “1 minute flaxseed buns” as a bread replacement. It’s made in a mug in the microwave with 1 tablespoon melted butter, 1 egg, 2 tablespoons freshly ground flaxseed, 1/4 teaspoon baking powder, and a pinch of salt. After eating this for three weeks, I developed my second flare (and later learned ground flaxseed is an “illegal” food on the SCD, so would never consider eating this again).

    The second flare persisted, even after I stopped the ground flaxseed and followed a mostly SCD. After six months or so I feared I had colorectal cancer so scheduled a colonoscopy. The colonoscopy prep was awful so I’d chase each dose of prep with freshly squeezed lemon juice – (that I repeatedly sieved to remove ALL pulp) – mixed with water and a few drops of liquid stevia. I had the colonoscopy. A few stalk type of polyps were removed. I was fine. Flare remitted within a week.

    At age 58, I had my third flare. Was still on the a gluten-free, LCKD, though not as strictly, and did a repeat of what I did during my second flare including a return to the SCD, scheduling a colonoscopy 6 months into the flare, and used the same colonoscopy prep with the pulp-free lemon juice, water, and liquid stevia chaser. I had one polyp removed, but this one was a larger, flat, humped type that looked cancerous – (but wasn’t thankfully) – and will require a follow up colonoscopy at 1 year. This time my flare began remitting in the first week, and fully remitted within the first month.

    For the last 4 years, I’ve greatly reduced eating grains, sugars, and seed oils – (canola, corn, cottonseed, saffola, soybean, sunflower, peanut, and others), but looking back I was still eating some seed oils in heated meat and vegetable dishes when I ate out a couple of times a week.

    My third and last flare immediately followed eating fresh broccoli and smashed garlic gloves roasted with extra virgin olive oil in the oven. I initially thought the flare was caused by the garlic, but ruled that out later after I resumed eating fresh pesto made with basil, olive oil, pinenuts, and fresh garlic gloves with no problems.

    Today, I eat almost no grains. I eat real, whole organic, non-gmo, plant based foods, with plant and animal based fats, and animal protein at every meal. I try to eat raw vegetables or a leafy salad once daily. I only use olive or avocado oils for unheated vinaigrettes, dressings, mayonnaise, and dips, and I only use butter or other animal fats for cooking. I keep eating out to a minimum, and as much as possible, I avoid heated dishes made with seed oils.

    Industrial seed oils were introduced into the diet in 1911 with a hydrogenized seed oil, I believe cottonseed oil, called “Crisco”. Margarine, which also is made with seed oils, was introduced later. To learn more about the history of seed oils’ introduction into the diet, listen to presentations on YouTube by journalist Nina Teicholz, or read her book The Big Fat Surprise (2014).

    I recently took a look at the literature, and seed oils are being investigated as a possible contributor to IBD. In 2020, a couple of books will be published that will include information on what’s currently known about seed oils, also referred to as “vegetable oils”, and how damaging they are. One is The Fat Fix by Catherine Shanahan, MD, due out in late March 2020.

    One more book that I consider an excellent read is Colitis & Me: A Story of Recovery by Raman Prasad. It tells the story of his struggle with severe IBD, the side effects of the IBD medications, the repeated hospitalizations, and how the SCD put his IBD in remission. I believe he’s both symptom and medication free today. Also look for he and Pamela Ferro, RN’s presentations online on Youtube. They also wrote a SCD cookbook.

    For me personally, grains and seed oils are problematic, also sugar now that I have type 2 diabetes in addition to IBD (which have been mostly in remission over the last 20 years). I manage with diet only, no medications. Eliminating processed foods – (grain flours, sugar, and seed oils) – from my diet while at the same time increasing real, whole foods, and increasing intake of healthy plant fats – (avocados, raw nuts, green olives, coconut) – and increasing animal fats – (butter, bacon fat, and others) – has been a game changer for me. Today, I teach type 2 diabetics how to get off or greatly reduce medication with the low carb ketogenic diet.

    With both IBD and diabetes, if remission is achieved with the diet, some problematic foods can be added back into the diet after fully in remission, I believe for 6 months, but processed foods are best eliminated or greatly limited. If you decide to try the specific carbohydrate diet for the first time, or try it again, I think Raman Prasad’s book, Colitis & Me, would go a long way to inspire you to stick with it in addition to reading the information available on the website here which I continue to re-visit even in remission. Best of luck to you!

  7. Hi Diana, I’m fortunate in that I have not yet had any side effects of using either, which is a blessing considering how many there are.

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