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Crohn's Disease Forum » Your Story » Expat: 2014 Diagnosis = No remission


07-06-2014, 12:28 PM   #1
Jaron Smith
 
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Expat: 2014 Diagnosis = No remission

Hello, I'm a expat English teacher in Bulgaria. My whole life I have been known as a person with a cast-iron stomach. I eat extremely hot foods, strange mixtures, wide varieties and anything that looks tasty yet healthy.

Last september (2013) I bought some beef from Carrefour. When I opened it at home it smelled a bit odd (but not off) so I cooked it thoroughly and ate it. 2AM I woke up with food poisoning. After that event my gut has never self-corrected.

My gas increased and pelvic abdominal pain with it. I have been a healthy eater for a long time so my diet consisted of lots of salads, fruits and heavy fibers.

I thought extra sugar may have been causing the gas so I cut out sweets, but the gas continued. I became irritable, lost energy, my skin tone changed, and every doctor I visited here gave me bogus diagnosis. I was prescribed Prostomal (for prostate) probiotics (which I have heard barely survive stomach acids) creams, suppositories, and a slew of antibiotics after multiple series of blood / urine tests and sonograms. I was never given a fecal test.

After about 6 months I realized this wasn't going away without radical changes. I changed my diet; I ate more healthily. More salads, more bran, more oats, more fruits, less fats, less sugars, less preservatives.... Well, for a while I could have been outsourced as a natural resource.

So, I broke down and had my first colonoscopy (Price 320 BGN) Afterwards the Doc tested three samples and a week later I was told I had Crohn's Enteritis. I have been taking Budenofalk (3mg and way overpriced) and Salofalk for just over a month. However, I feel rather unchanged.

At first my symptoms started going away, as I adhered to an extremely strict diet. But even slightly breaking from my strict diet causes a flare up which lasts for days. The problem is the pain. It's as if everything sets it off. A sprinkle of black pepper, coffee, chocolate, skinless apples, apricots, and every kind of flavoring. (caking agents?) Sometimes, even animal crackers give me pain.

Strangely enough my doctor told me not to eat this and that. However he didn't mention about 70% of the items I've noticed included in medical sites. Yet the first thing he did mention was dairy. I really wonder if I can have dairy because it would add a huge new spectrum to my current crohn's diet.

I've been eating canned tuna, white refined products, white rice, bananas, chicken, enriched pastas, peanut butter, stewed carrots, eggs, pretzels and lunch meats.

I'm craving salad and raw vegetables so much. I don't care about the gas. I only want the pain to stop. In order to level out my vitamins and minerals I bought 3 different supplements and have now begun taking a protein shake on days I have long workouts.

I need some help from those of you who've had help from a specialist or first hand experience. I don't have access to experienced doctors or nutritionists or people who know much about it. Here are my questions:::Answer any that you can by number.

1. Can I eat most vegetables if they are cooked or will they cause pain? I don't mind being gassy.
2. What medications have worked for your crohn's enteritis?
3. If I have to avoid fiber what about juicing?
4. Is there likely to be an ingredient in my protein shake which I should avoid?
5. Should I really avoid dairy?
6. Has anyone found a natural remedy which has helped?

Also, yesterday I herds about fecal transplants which are used to help the intestines rebuild the micro-culture. Is this something I should be researching or is that for other gut disorders?

I have some sort of answers to all my questions but I'm looking for more first hand experience from other people with similar situations.

Thank you all for reading. I look forward to hearing from you and I hope I can become a valuable participant in this forum.
07-06-2014, 12:37 PM   #2
Daisy123
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I have been told to eat as little gluten and lactose as possible. I spent 6 months on low fibre because of fear of blockage and the nutrionist told me to go back on a healthy diet. I cannot tell you how much difference it has made. I think high levels of gluten were making me ill. I still get pain but not as frequent.
07-06-2014, 06:15 PM   #3
Axelfl3333
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Veggies are fine cooked and some fruits are o.k i,m fine with banana,s and apples,some fibre is ok,dairy seems ok,couldn't,t advise on medication doctors I,m afraid,juicing should be fine or get good at making soup totally safe.there, slots of talk about holistic,natural cures but with little proof they work though turmeric is a natural anti-inflammatory it's good in a curry you could try probiotics I take them but to honest unsure if they make any difference.all the best
07-06-2014, 10:09 PM   #4
Hilary1986
 
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Hi Jaron,

I was diagnosed with moderate-severe Crohn's disease last summer and I was then in a very similar situation as you are now. I was trying every diet out there to help ease the cramping pain, no gluten, no lactose, no veggies (except simple root vegetables), and so on. I personally found that no matter what I tried, the cramping pain would not cease, and it continued for months until I was put on Remicade.

My advice, only speaking from personal experience, is to eat whatever makes you happy After realizing that the pain wasn't going anywhere for me, I stopped trying to prevent it through diet and finally got to at least enjoy the things I love to munch on.

I hope that you don't have to live with the pain and that you find a diet that works for you, this unfortunately was not the case for me. Please keep in mind that I did still avoid a couple of things, things that gave me "worse days" (such as popcorn).

Good luck!!
07-07-2014, 09:53 AM   #5
Jaron Smith
 
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Veggies are fine cooked and some fruits are o.k ...,juicing should be fine or get good at making soup totally safe. There, slots of talk about holistic, natural cures but with little proof they work though turmeric is a natural anti-inflammatory it's good in a curry. You could try probiotics I take them but to honest unsure if they make any difference.all the best
I soup-ose I'll start with some soups as soon as it cools down. Summer's not the best time for a hot bowl of anything. I think i'll look more into juicing for now.

As far a holistic or natural remedies I have found that a combination Marshmallow Root, Licorice and Valerian root (the last is for 'mood') really helps ease the stomach. This mix is sweet, so honey isn't needed and i think it makes a bigger difference than the drugs I'm taking. I highly recommend it. For a while I was adding Turmeric to everything but I think it was counter productive eaten along with the other spices I was using.

As for probiotics, I empathize. I would say they are more for placebo effect than anything. I think this is why there has been a surge of interest in fecal transplants.

I have been told to eat as little gluten and lactose as possible. ... I think high levels of gluten were making me ill. I still get pain but not as frequent.
My sister advised me to stay away from gluten however I see a problem with avoiding it. I'm not sure if companies here (bulgaria) are required to list it on their products. I have seen it on some items (bread, cookies, crackers) but I'm not sure if every company does this.

Hi Jaron,
I personally found that no matter what I tried, the cramping pain would not cease, and it continued for months until I was put on Remicade.
Thanks for that. Sadly, my doctor told me that Remicade is unavailable in this country. Who knows why; everything is backwards here. Lack of sufficient medical knowledge and treatments may force me to return to the USA.

I'm originally from a farm (very missed) with loads of organics and I fear I won't be able to settle down there and munch on ruffage and salads. We have a nectarine tree which is mindblowingly saccharine.



--------
Thank you all for replying. I look forward to hearing more feedback from everyone.
07-07-2014, 10:14 AM   #6
Hilary1986
 
Join Date: Jul 2014
Hi Jaron,

I assume Humira is not accessible either? What medications are you on? Although steroids have many drawbacks, they can be very beneficial in reducing inflammation, thus relieving pain while digesting. Have you been prescribed anything?

Although it didn't work for me, the FODMAP diet was recommended to me by my GP. There are some veggies on it that you can eat, see: stanfordhospital.org/digestivehealth/nutrition/DH-Low-FODMAP-Diet-Handout.pdf

Last edited by Hilary1986; 07-07-2014 at 11:03 AM.
07-08-2014, 03:12 PM   #7
Jaron Smith
 
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Yeah, I am on salofalk and budenofalk but I don't think it's making much of a difference. What I eat seems to make all the difference. It's very difficult to stick to such a strict diet against ones will. The hardest part is not being able to join my friends for a few pints. So boring.

Perhaps I'm still eating something I shouldn't. I'm reading my labels more and I might try to cut all consumption of gluten. I'll basically eat a lot more rice.

At present I'm struggling to eat around 2,200 calories daily. I've lost about 7 pounds in the past month which I'm quite happy about.
07-08-2014, 04:06 PM   #8
Grumbletum
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Hi Jaron and a big welcome to the forum from an ex ex-pat English teacher! Sorry to hear about your diagnosis and I understand the challenges of being ill and abroad. Are you due a summer holiday? Just wondering if you could perhaps make a trip home and see if you can see a specialist there? If you are still in significant pain, I would worry about the effects of the disease not being brought properly under control.
I think diet is a very good way to try to manage the symptoms in the meantime. Reactions to foods are such an individual thing amongst Crohn's sufferers. I am very lucky in that I can eat most fresh fruit and veg and it's things that I used to love that still upset me even in remission. So no caffeine and I try hard to cut down on refined sugar, yeast and gluten.
It can be really helpful to keep a food diary for a while. Narrow your diet right down then introduce things gradually and one by one and note your reactions to them. The dairy might be a place to start to see if you are tolerating it or not.
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07-09-2014, 03:46 PM   #9
Jaron Smith
 
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Reading about humira and remicade.... they increase risk of cancer? wow.... there has to be another way.
07-09-2014, 04:26 PM   #10
Daisy123
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Reading about humira and remicade.... they increase risk of cancer? wow.... there has to be another way.
Most studies suggest the opposite. A recent study showed there was no increased risk for cancer. I am on Aziathropine which is known as a dirty drug. However crohns unchecked can kill.
07-14-2014, 12:52 PM   #11
David
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Reading about humira and remicade.... they increase risk of cancer? wow.... there has to be another way.
With your interest in fecal transplants and concern over biologics, I strongly suggest you look into the study linked in my signature below.

I wish you all the best.
07-21-2014, 03:09 AM   #12
Jaron Smith
 
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With your interest in fecal transplants and concern over biologics, I strongly suggest you look into the study linked in my signature below.
I wish you all the best.
Well, the study doesn't mention fecal transplants at all so... ? yeah? Also, if you had read my intro you would have noticed that I live in the Balkans and I highly doubt they are going to buy transatlantic tickets when there are plenty of people in the states to choose from.

I also find it odd that when someone mentions apprehension to the side effects of drugs and you suggest they become a guinea pig.
07-21-2014, 03:23 AM   #13
Jaron Smith
 
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I hope nobody minds but I'll make regular updates here as a personal journal so I can, if needed use it to inform specialists in the future.

I tried a vegetable soup medley this past week. Boiled it very well and then pureed it. Added turmeric. ... But spent three days in pain. I guess soup is out for the time being or will retry without suspect ingredients.

Haven't lost any more weight owing to carbs and proteins.

Began drinking tea mix again and noticed a difference. Living without ice-cream and beer is becoming very difficult as the temperature increases.

Entering second day with minimal pain in the gut. remission seems to come and go according to specific foods and their amounts. I'm becoming very anal retentive about what and when I eat. Avoiding gluten means cutting all available crackers and most biscuits on the shelves here. Only one flour available doesn't contain it. Snacking on raisins, graham crackers and pretzels helps. Avocado is a huge calorie flavor bonus on sandwiches.

Having identified almost all inflammatories, trying very had now to maintain remission.
07-24-2014, 12:32 AM   #14
Jaron Smith
 
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3 days in remission.
Maintaining a strict diet does work for me. Avoiding all raw materials, Monitoring gluten and fats. Looking far down the road at having my first salad.
07-31-2014, 04:11 PM   #15
Jaron Smith
 
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Still in remission.... 1 week
Taking meds doesn't seem to make a difference as much as the strict diet.
Have really been watching what I put in my body (2k cals a day) and have lost 3 more lbs.

Avoiding: Coffee, sugar, gluten, raws, nuts, alcohol, spices, fibers, most dairy
Have started: Almond milk, soy milk, bean burgers, avocados on everything, banana shakes.
07-31-2014, 04:21 PM   #16
Jay Woodman
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Still in remission.... 1 week
Taking meds doesn't seem to make a difference as much as the strict diet.
Have really been watching what I put in my body (2k cals a day) and have lost 3 more lbs.

Avoiding: Coffee, sugar, gluten, raws, nuts, alcohol, spices, fibers, most dairy
Have started: Almond milk, soy milk, bean burgers, avocados on everything, banana shakes.
I've also tried a better approach to my dietary intake. I've replaced my coffee with green tea : ) Gone gluten free. Given up soda pop. Switched to almond milk. Interesting though I haven't given up nuts & continue to eat them usually as a topping to a spinach or arugula salad. I've been having no problems with these greens or the nuts...
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08-01-2014, 12:27 AM   #17
Jaron Smith
 
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I've also tried a better approach to my dietary intake. I've replaced my coffee with green tea : ) Gone gluten free. Given up soda pop. Switched to almond milk. Interesting though I haven't given up nuts & continue to eat them usually as a topping to a spinach or arugula salad. I've been having no problems with these greens or the nuts...
Yeah, I've enjoyed my teas, but with summer i just go straight for cool water. I haven't been big on soda for a few years. (Teeth and weight)

Totally love almond milk too.

I can't touch salad yet but I will probably do a little dance the next time I have one. (a few months from now.)

Thanks for sharing
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