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02-25-2017, 09:45 AM   #1
edamame
 
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Hi from China

I'm chris, 30 years old. I just had a colonoscopy last week. After consulting with multiple doctors based on my blood test(higher levels of CRP, ESR), CT scan and pathologic analysis, I was confirmed(sort of) with (silent)crohn's disease.

So a little background here. Back in 2005 my freshman year in college, I had a rosacea breakout. At first we all thought maybe alcohol triggered it because I was intolerant to alcohol so I was told to put steroid cream on my face(I didn't know it was steroid at the time), It worked like a charm. But gradually the flare-ups became more frequent and serborrheic dermatitis started showing up as well.

I struggled with these 2 conditions for about 6 years before another problem arrived in 2012: haemorrhoids. Surgery went pretty smoothly but soon I found out that my wounds around my anus just couldn't heal. No matter what meds I tried, it didn't seem to be affected by anything. So I basically lived with this problem for another 4 years, along with my skin disorders until a few months back I was suggested to check my intestines.

I finally started to connect the dots:
1. I was diagnosed with acute appendicitis when I was 5 years old and got my appendix cut out. ( although now I wonder whether or not the diagnose was correct? maybe I had crohn's back then? but it wouldn't have made any difference because it was so rare back then).
2. For a period of time from primary school to junior high, I got nosebleed and constipation very often, then it stopped.
3. Some time later, I started having recurrent aphthous ulcer no matter what i ate. But again, it stopped. That's when rosacea started appearing.

I don't have the typical severe syptoms in my abdomen, guess that puts me in the silent category, my main syptoms are:
1.Fatigue(very)
2.Low degree fever whenever I have constipation or a flare up on my face
3.Ocular rosacea(or Iritis?), afraid of lights, itchy etc.
4.Weight loss. I'm 180cm at 66kg, I haven't been able to put on weight since high school.
5.Low muscle mass & poor strengh.
6.Dizziness whenever I stand up.
7.Erectile Dysfunction and low sperm quality. I felt generally tired trying to engage in sexual activity, I do have a great sperm count, but most of them aren't moving.(quality below 20%)
8.Lower back pain. whether this contributes to ED, I'm not sure.

As you can see, my overall health is impaired. If you can relate to any of the points above I'd like to discuss more about the connection to crohn's. I do believe the imblance of the microbes in my gut are to blame for most(if not all) of my problems. I already started very low-carb paleo like diet, and it cleared out my SD in days, but 3 days ago had a fever and the syptoms are back. So I think imflammation is the key, there is new study done about the link between IBD and rosacea.


As for the cure, I'd like to ask all of you if anyone has tried the following two methods:
1. Breast milk. It contains hundreds of different bacterial species according to this, so potentially it has the ability to rebalance our gut flora?

2. stale bread, a 73 year old claimed he cured crohn's by eating this.

I feel like both of these methods are possible, and I'd like to try them out, would appreciate any other suggestions/methods, thanks for reading and have a good day

Edit: Point 8 I think it's more lower back soreness than pain to be exact. Also I forgot to mention depression. During my worst days where I'd have low temp fever, fatigue every day, I could literally feel my depression, I tried to get out of it by going out to exercise in the evening, but didn't help much.

Last edited by edamame; 02-25-2017 at 07:49 PM.
02-25-2017, 09:54 AM   #2
edamame
 
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I am not allowed to post links so google "Further Studies Link IBD and Rosacea" at rosacea.org, "The bacteria in breast milk" a SA blog.
02-25-2017, 10:44 AM   #3
Sophabulous
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I also suffer from terrible rosacea, I've just had to run out to our local boots to pick up some cetaphil as it's so red & uncomfortable! I did stop using it as the effects wore off but hopefully coming back to it after 18 months away it will help a little.

My rosacea never usually flares up like this is the winter but we've had strong icy winds this week so I wonder if that's triggered it. I've actually got papules on my cheeks again which I haven't had for a long time.

I have another colonoscopy in a couple of weeks so we'll see then how I'm doing inflammation wise! I'll look into the studies you mentioned.

Thanks!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-25-2017, 11:03 AM   #4
ronroush7
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I can relate to the dermatitis. Also, before being diagnosed with Crohns disease, I had surgeries for both hemmrhoids and a fistula. Both of these surgeries took longer to heal than normal. This was because of the Crohns Disease.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-25-2017, 11:06 AM   #5
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Hi Chris,

There's a lot of information there. Lower back pain tends to be from inflammation of the muscles surrounding the intestinal epithelium, which is inflamed. Getting that inflammation down is the first, most obvious step. To do that I would start to research intestinal permeability, and in particular the research of Dr. Alessio Fasano. See for instance his youtube videos like 'the gut is not las vegas'. Or go straight to his research papers on pubmed. Though they refer directly to celiac disease, the findings apply to all IBD.

I would avoid both breast milk and particularly stale bread. Fasano's research shows that gluten and gliadin in wheat are directly linked to inflammation of the gut. Lactose and Casein in milk also likely to be an issue.

Instead, its worth looking into the various IBD/Autoimmune diets. I personally favour elimination diets with no processed foods at all, no grains, lightly cooked and raw vegetables and some wild fish. Reducing ones exposure to toxins, synthetic chemicals, plastics, pesticides and heavy metals as much as possible. Note that your toothpaste may contain sodium lauryl sulphites or similar, which is used to cause colitis in research mice. Most of us have bleeding gums, so endotoxins get in that way and cause an immune response.
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Diagnosed Crohn's 2007. Pentasa and several other drugs. Began exercising and taking better care of body in 2008. Lost 45 pounds, gradually reduced junk food, alcohol and tobacco. Stopped meds 2009. Went Gluten free, lactose free. Finally tobacco and alcohol free in 2013. Biopsies and internal camera since then come back with 'no trace of disease'.
02-25-2017, 11:36 AM   #6
cmack
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Hi Chris,

Welcome! there is info at nutritionfacts.org look up crohn's. There are some useful tips for diets that reduce inflammation. That site was recommended by my GP.

I hope you find some helpful info,

cmack

Last edited by cmack; 02-25-2017 at 07:35 PM.
02-25-2017, 07:04 PM   #7
edamame
 
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I also suffer from terrible rosacea, I've just had to run out to our local boots to pick up some cetaphil as it's so red & uncomfortable! I did stop using it as the effects wore off but hopefully coming back to it after 18 months away it will help a little.

My rosacea never usually flares up like this is the winter but we've had strong icy winds this week so I wonder if that's triggered it. I've actually got papules on my cheeks again which I haven't had for a long time.

I have another colonoscopy in a couple of weeks so we'll see then how I'm doing inflammation wise! I'll look into the studies you mentioned.

Thanks!
Cetaphil is great for everyday use but not of much help when it's inflamed and burning, I usually need mupirocin ointment to help me ease off the redness. And yes dry cold weather definitely worsens it, I usually wear a hat or in a hoodie, and I carry a purified water spray to keep my skin moisturized all the time, but I'd say food is No.1 trigger for me, as I cut out most carbs from my diet, syptoms improve much more.
02-25-2017, 07:15 PM   #8
edamame
 
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I can relate to the dermatitis. Also, before being diagnosed with Crohns disease, I had surgeries for both hemmrhoids and a fistula. Both of these surgeries took longer to heal than normal. This was because of the Crohns Disease.
Yes the pathology shows chronic inflammatory cells and lymphocyte filling up the surgery wound, and none of the medicine had any slightest effect on it, it amazed me.
02-25-2017, 07:31 PM   #9
edamame
 
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Hi Chris,

There's a lot of information there. Lower back pain tends to be from inflammation of the muscles surrounding the intestinal epithelium, which is inflamed. Getting that inflammation down is the first, most obvious step. To do that I would start to research intestinal permeability, and in particular the research of Dr. Alessio Fasano. See for instance his youtube videos like 'the gut is not las vegas'. Or go straight to his research papers on pubmed. Though they refer directly to celiac disease, the findings apply to all IBD.

I would avoid both breast milk and particularly stale bread. Fasano's research shows that gluten and gliadin in wheat are directly linked to inflammation of the gut. Lactose and Casein in milk also likely to be an issue.

Instead, its worth looking into the various IBD/Autoimmune diets. I personally favour elimination diets with no processed foods at all, no grains, lightly cooked and raw vegetables and some wild fish. Reducing ones exposure to toxins, synthetic chemicals, plastics, pesticides and heavy metals as much as possible. Note that your toothpaste may contain sodium lauryl sulphites or similar, which is used to cause colitis in research mice. Most of us have bleeding gums, so endotoxins get in that way and cause an immune response.
Thanks for the info! I'll look them up. I'm basically having a couple of mackerel, leafy greens, bone broth and some meats everyday, but since I don't have typical intestinal symptoms I can't tell what else I can eat, only relying on observing my facial condition on inflammation. I had kept working out last Sept and Oct, during which time I also went to massage on my lower back, it helped a lot but recently the pain is coming back.
02-25-2017, 07:42 PM   #10
edamame
 
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Hi Chris,

Welcome! there is info at nutritionfacts.org look up crohn's. There are some useful tips for diets that reduce inflammation. That site was recommended by my GP.

I hope you find some helpful info,

cmack
Thanks, I did go there a couple of times trying to calculate my nutrition intake, I'll take a thorough look this time!
02-26-2017, 02:56 AM   #11
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Thanks for the info! I'll look them up. I'm basically having a couple of mackerel, leafy greens, bone broth and some meats everyday, but since I don't have typical intestinal symptoms I can't tell what else I can eat, only relying on observing my facial condition on inflammation. I had kept working out last Sept and Oct, during which time I also went to massage on my lower back, it helped a lot but recently the pain is coming back.
Those are very healthy choices, but eating the same 4 things every day can lead to deficiencies of minerals, vitamins, micro and macro nutrients. For instance vitamin K2, which is required in the synthesis of vits A, D, and E (see the Masterjohn interview on the Quantified Body for instance).

The research i've done suggests getting as many vegetables as possible in a day, green leafy ones, and brightly coloured ones. Then a small amount of protein, fruits, and then special attention to fibre for the microbiome. Reading this excellent book 'I am multitudes' about the importance of the microbiome to our health, and its clear that a healthy microbiome is at the heart of gut health generally.
02-26-2017, 05:39 AM   #12
Sophabulous
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Have you ever tried probiotics? I'm seriously debating giving it a go but don't know where to start!
02-26-2017, 08:56 AM   #13
edamame
 
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Those are very healthy choices, but eating the same 4 things every day can lead to deficiencies of minerals, vitamins, micro and macro nutrients. For instance vitamin K2, which is required in the synthesis of vits A, D, and E (see the Masterjohn interview on the Quantified Body for instance).

The research i've done suggests getting as many vegetables as possible in a day, green leafy ones, and brightly coloured ones. Then a small amount of protein, fruits, and then special attention to fibre for the microbiome. Reading this excellent book 'I am multitudes' about the importance of the microbiome to our health, and its clear that a healthy microbiome is at the heart of gut health generally.
When you say "as many veges as possible", do you mean many kinds? or just high volume, wouldn't that lead to higher intake of fiber? I've read good and bad things about fiber, on the one hand, it protects the intestinal wall from being eaten by "bad" bacteria, on the flip side, fiber remains to be digested by those organisms and encourages their growth, so I don't really know. And I can't rely on my gut feeling because I don't have any except constant hunger. I do need to calculate my vitamins and minerals, overall energy wise, I think I'm doing ok. I'll check out the books you mentioned, thanks!
02-26-2017, 09:02 AM   #14
edamame
 
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Have you ever tried probiotics? I'm seriously debating giving it a go but don't know where to start!
Hi, I've been taking probiotics before my diagnosis. Doctors recommend I take different strains of bacteria every two weeks to promote diversity, currently in China I don't have many brands to choose from so I just stick to what's available and switch between them, but I'm considering purchasing on Amazon, the best seller up there contains 15 or so strains but they compete to survive. I'd recommend choosing a popular one and go to the review section, see what others are saying, generally, they don't have side effects(as the doctors told me).
02-26-2017, 01:22 PM   #15
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When you say "as many veges as possible", do you mean many kinds? or just high volume, wouldn't that lead to higher intake of fiber? I've read good and bad things about fiber, on the one hand, it protects the intestinal wall from being eaten by "bad" bacteria, on the flip side, fiber remains to be digested by those organisms and encourages their growth, so I don't really know. And I can't rely on my gut feeling because I don't have any except constant hunger. I do need to calculate my vitamins and minerals, overall energy wise, I think I'm doing ok. I'll check out the books you mentioned, thanks!
Good points. Yes, as many vegetables as possible, in terms of variety, green and coloured. Purples especially good.

The fiber issue is becoming clearer month by month. We now have research confirming that an weakened and unbalanced microbiome is a cause of IBD, and repairing the microbiome will improve IBD. The way to improve the microbiome is to eat fiber. Western diets, high in fried foods, toxins and pesticides encourage bad bacteria. A wide variety of fresh and lightly steamed vegetables encourages health giving bacteria. Prebiotic foods such as jerusalem artichoke, plantains etc will feed the bacteria we want. There are specific strains of probiotic bacteria which repair the gut wall itself. The issue may be that people with IBD don't have the digestive enzymes to support fiber, and will feel bloated or get cramps. So start slowly, consume digestive enzymes if necessary and learn about how to maximise bile and stomach acid production (don't drink during meals, help strengthen vagus nerve, support liver, pancreas and kidneys with herbal extracts and bitters).

Your being constantly hungry is consistent with one of the main problems of IBD, namely that nutrients are not getting through the cells of the intestinal epethelium. Instead, tight junctions between the cells are opening, and letting endotoxins, bacteria and other unwanted things through, which cause inflammation. If you have cut down your exposure to irritants such as grains and artificial additives (like what's in sauces), then working on your microbiome and intake of nutrients including vitamins and minerals should be the next step and you should start seeing results after 2-3 months of a new regime. Hope that helps.
02-26-2017, 09:45 PM   #16
edamame
 
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Good points. Yes, as many vegetables as possible, in terms of variety, green and coloured. Purples especially good.

The fiber issue is becoming clearer month by month. We now have research confirming that an weakened and unbalanced microbiome is a cause of IBD, and repairing the microbiome will improve IBD. The way to improve the microbiome is to eat fiber. Western diets, high in fried foods, toxins and pesticides encourage bad bacteria. A wide variety of fresh and lightly steamed vegetables encourages health giving bacteria. Prebiotic foods such as jerusalem artichoke, plantains etc will feed the bacteria we want. There are specific strains of probiotic bacteria which repair the gut wall itself. The issue may be that people with IBD don't have the digestive enzymes to support fiber, and will feel bloated or get cramps. So start slowly, consume digestive enzymes if necessary and learn about how to maximise bile and stomach acid production (don't drink during meals, help strengthen vagus nerve, support liver, pancreas and kidneys with herbal extracts and bitters).

Your being constantly hungry is consistent with one of the main problems of IBD, namely that nutrients are not getting through the cells of the intestinal epethelium. Instead, tight junctions between the cells are opening, and letting endotoxins, bacteria and other unwanted things through, which cause inflammation. If you have cut down your exposure to irritants such as grains and artificial additives (like what's in sauces), then working on your microbiome and intake of nutrients including vitamins and minerals should be the next step and you should start seeing results after 2-3 months of a new regime. Hope that helps.
I've noticed lack of nutrients causing me some problems, never realize being hungry is also a sign, well I think it makes sense since I haven't put on any weight even during my workout days with 5-6 meals a day, the weight gain is almost unnoticeable, and it dropped very quickly once I stopped going to the gym. I thought in the past that I'm one of those who just can't gain weight. Yeah I'll up my veges intake and see what happens, appreciate your help
And yes I've had my fair share of both Chinese and Western junk food...
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