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Documenting my IBD n=1

ibd crohns disease ulcerative colitis autoimmune bowels inflammation

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#1 Ari

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Posted 23 January 2020 - 07:27 AM


Not sure whether to post this in Supplements or Lifestyle, but I'll write here and I'm sure it can be moved if it's wrong.

 

It seems I have IBD (Inflammatory Bowel Disorder). I'll probably get my diagnosis in about a month when I have my follow-up appointment, and I don't know yet if it's Crohn's disease or ulcerative colitis. I'm rootin' for UC!

 

Background: I'm 36 and male scandinavian, I've been eating relatively well all my life, though perhaps it is relevant that for a long time I was feeding largely or exclusively on meal replacement shakes. First Joylent (I think it's changed name now) and then Huel. I still drink Huel every morning after the gym. My symptoms aren't severe. I get a lot of gas, some diarrhoea, mucus and blood in my stool, but no cramps and little feeling of bloating.

 

I did a blood test recently, which told me all my values are "normal", but uploading it into labtestanalyzer (loving that site!) I can see that a few values are outside the optimal range. Mainly the Erythrocyte sedimentation rate (ESR), which I'm taking as the signs of my inflammation. It's on the edge of the "normal" range and outside the "optimal". If anyone is interested, I could post my values later. I plan to do regular blood tests to monitor my values. I'll talk to my doctor to see what values I should monitor, but I'm guessing ESR, hemoglobin, iron, vit D, B12, leukocytes. At the moment all my vitamins are in the optimal range, so it seems my disease is not interfering with my nutrient uptake.

 

Steps I plan to take:

  • I've started using an app to track my food intake and symptoms to find any "trigger foods" to avoid.
  • I'm interested in starting CR and have been interested in it before this diagnosis. Reading about IBD you see a lot of advice about eating more because the intestines get worse at absorbing calories and nutrients. My feeling is that if I keep track of my blood values, I should be alright, and as CR is anti-inflammatory, it ought to be beneficial. But I'll talk to my doctor about it. Another problem could be that CR might be difficult if many of the nutrient-dense foods trigger my IBD. Apparently leafy greens are often triggers, for example.
  • I will try different supplements. I've ordered NAD+ Defender by Alive By Nature and Eternus by the Neurohacker Collective. The first one contains curcumin and silymarin and is supposed to help lower inflammation. A cursory search gives that both of these have shown some advantages for helping with IBD. Eternus is a NAD booster, which should also help with inflammation, and it contains a lot of different vitamin B compounds. I'm not sure if it's better than NMN, but this is easily available in the EU, at least. I'll try it and track my progress. Both of these are very expensive, but at least for experimentation in the beginning, it's worth it.

 

My plan is to use this thread to keep track of my progress a bit and see what makes me improve. I appreciate any advice or tips on resources that you guys can give me, and if I find something that works for me, perhaps that can help someone else in the future. Though getting a diagnosis like this is obviously not great, I must admit I'm getting excited by the challenge of finding out what works for me and how I can keep it in check. Wish me luck!



#2 ibtisam_midlet

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Posted 23 January 2020 - 08:38 AM

The problem isn't in food, the problem in your DNA, I don't know much about your symptoms, so it's better to go to the doctor and she will give the appropriate medications (I hope!)

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#3 Ari

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Posted 23 January 2020 - 01:53 PM

The problem isn't in food, the problem in your DNA, I don't know much about your symptoms, so it's better to go to the doctor and she will give the appropriate medications (I hope!)

 

Thank you for responding. Yes, I know that it's not a food allergy or anything like that, but nonetheless it seems a commonly reported thing that certain foods can tend to worsen the symptoms. It can be diary, insoluble fiber, "gassy" foods or something else. So if different foods cause different reactions, then I want to know. If not, then I want to know that, too. Of course I'll talk to my doctor and follow any advice and medication she has for me, but I also want to try to learn as much as possible on my own, which should also help my doctor in deciding what to do. Especially in a disease like this, where causes and mechanisms aren't completely known, I feel like I have everything to gain from gathering data and trying out different methods.



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#4 Oakman

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Posted 23 January 2020 - 02:51 PM

How do you now it's not a food allergy if you don't know why you have IBS? Have you tried eliminating gluten from your diet? Also the blood in your stools sounds worrying. I'd certainly have that checked with a colonoscopy or some way to determine any reasons for internal hemorrhaging.


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#5 Ari

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Posted 23 January 2020 - 05:39 PM

How do you now it's not a food allergy if you don't know why you have IBS? Have you tried eliminating gluten from your diet? Also the blood in your stools sounds worrying. I'd certainly have that checked with a colonoscopy or some way to determine any reasons for internal hemorrhaging.

 

I do have food allergies (though it's nuts and not gluten), but I don't have IBS (though the first doctor, who to be fair wasn't a gastroenterologist, tried to tell me I had). I have IBD, which is a very different matter. I contracted it after a nasty infection, which I have learned isn't uncommon, and my colon hasn't been the same since. I've had a colonoscopy, the doctor told me I have inflammation in the colon and it's likely to be either Crohn's disease or ulcerative colitis. She took some tissue samples and I have since given some stool and blood samples, and I have a follow-up appointment in about a month, when I expect to learn the exact diagnosis.

 

I might do a check for gluten and lactose intolerance, but I've never had a problem with it before all of this started, and I'm pretty sure I don't have IBS. My bowels aren't irritable, they're inflamed. I was prescribed a corticosteroid (anti-inflammatory) for an interval, and it helped immensely, but that period has ended and my symptoms have returned. Unfortunately, corticosteroids aren't usually prescribed indefinitely due to their side effects, among which is loss of bone density (especially worrisome for someone considering CR). I understand there are some other medications that can help (I'm still reading up on the disorder), but which have other side effects, such as increased cancer risk.

 

The ideal would be to find a regimen where I can keep my disease in remission without using any heavy medication with serious side effects, and I read that this is something that people have been able to do. I even saw a post on this forum from a Crohn's sufferer who managed this.

 

Articles such as this: https://nutritionbye...-bowel-disease/ indicate that curcumin could be beneficial for IBD sufferers.

Here's one talking about milk thistle: http://albertparknat...-marys-thistle/

 

I know, I'm not linking to the studies in question. As I said, I'm just in the beginning of researching this and reading up on the disease. But it seems there are advantages of both of these compounds, and ABN's NAD+ Defender contains both. So it seems a good thing to try. Hence the n=1 experiment. Hopefully the app I'm using will help me interpret the data, too.



#6 Oakman

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Posted 23 January 2020 - 06:06 PM

My bad, yes IBD not IBS. No2 I realize the difference. Acronyms, acronyms !

 

I've read that curcumin is healthy for the gut, and esp. If you do NOT use any bioavailability enhancers with it, so the curcumin remains in the gut and is NOT absorbed. 

Also, I have used astaxanthin to heal the gut. When you take it in sufficient quantities, your poop turns a nice dark red color :)

 

>https://articles.mercola.com/sites/articles/archive/2012/01/05/astaxanthin-reduce-ulcers.aspx

 

Some good info here as well. Good luck with this!

 

https://info.dralexr...y-gut-naturally

 


Edited by Oakman, 23 January 2020 - 06:06 PM.

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#7 Ari

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Posted 23 January 2020 - 06:38 PM

My bad, yes IBD not IBS. No2 I realize the difference. Acronyms, acronyms !

 I confess as I wrote the reply I wrote "IBS" and even searched for an article on curcumin and IBS before I realized my own mistake.
 

I've read that curcumin is healthy for the gut, and esp. If you do NOT use any bioavailability enhancers with it, so the curcumin remains in the gut and is NOT absorbed.

Yes, I read something like this, too. Since NAD+ Defender contains micronized curcumin coupled with piperine, that might be a disadvantage. In the end, this could save me money, as I could switch to a cheaper supplement!
 

Also, I have used astaxanthin to heal the gut. When you take it in sufficient quantities, your poop turns a nice dark red color :)

Interesting. Thanks for the tip, and thanks for the links. I'll look into this! Much obliged.



#8 Lady4T

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Posted 24 January 2020 - 09:44 AM

Ari: If you indeed have IBD, it's  not something you fool around with. I can be fatal.  I know -- many years ago I almost died a couple of times from ulcerative colitis. Right now it sounds like your symptoms are quite mild, but that could change suddenly. You must get a colonoscopy as soon as possible. And, contrary to what some people and even doctors might tell you, WHAT YOU EAT DOES MATTER. So my advice to you is to stop eating any grains immediately, especially wheat and anything that contains it. Wheat is extremely damaging to the intestines.

 

If you don't want to lose your colon, or die because of IBD, you need to educate yourself. I was one of the fortunate ones that cured myself by following a very strict diet called the "Specific Carbohydrate Diet" (SCD). Google it. There are a few websites dedicated to it. And buy the book.  It describes what's happening in your intestines, and more importantly, WHY it's happening. Read the book. Other helpful books are "Nourishing Traditions" and The GAPS Diet"

 

It is still early and if you have the knowledge, the desire, and the discipline, you can stop the progress of the disease, and heal your intestines. Thousands have done it, and you can too..

 


Edited by Lady4T, 24 January 2020 - 09:47 AM.


#9 Ari

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Posted 25 January 2020 - 07:38 PM

@Lady4T, thank you for your concern and advice. I'm still researching this, and it does clearly seem that diet has an effect on IBD. The problem is that there are all sorts of diets with different requirements and they don't agree with each other. Some say avoid dairy, others say that yogurt is good for the probiotics. Aged cheese is either good or bad. All grains are bad, or oats is beneficial. Soluble vs. insoluble fiber. Avoid nightshades. No histamine-rich foods. No "gassy" foods or lecitins. No gluten, fatty food, no salad, no meat (especially chicken), no spicy food, no rice or starchy food, no sugar, no omega 6, no additives … Trying to follow all of the different diets seems pretty much impossible, as there's more or less nothing left. I think fish, olives and fruit are pretty much the only things that's ok in all versions I've seen, though the "no sugar" diet might not like the fruit … Actually, just found a page that says fruit is only ok if it's peeled, cooked and doesn't have any seeds (so most berries are out).

 

I think there are some common themes, though, and I'll definitely keep an eye on my symptoms and my foods. I'll try to avoid grains and foods high in insoluble fiber, replacing a lot of my veggies with fruit. I think I won't get rid of oats, however, as what little research I've seen referenced suggests it might even aid ulcerative colitis. I'll keep the white rice, as well, for now, if nothing else then to be able to enjoy sushi (which gets me some great salmon and avocado, too!). Adjusting my diet and seeing how things develop is the way for me to go, I think. Not ready to go full-on SCD based on the evidence I've read. Perhaps I will, though!



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#10 Ari

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Posted 25 January 2020 - 07:53 PM

I am not running a well-controlled experiment. At least not yet. I'm trying several things at once to see what happens, and if I have improvements, I can start trying to figure out what worked.

 

Yesterday my NAD+ Defender pills arrived. Having researched all of the ingredients, I've found links to research in each one of them saying they can improve symptoms in IBD sufferers. Maybe I'll post some links later. I took one pill yesterday (recommended dose 2-4/day) to see if I had any adverse reactions. I didn't, so today I have taken two.

 

Yesterday I ate a lot, including some food I might not be supposed to, like noodles. I didn't notice any kind of reaction to anything. So far, in the days I've been tracking my food and symptoms, I can't say I've seen a strong link. Then again, there are plenty of confounding variables.

 

Today, I've only had a single meal, consisting exclusively of fruit. There is a lot of evidence suggesting fasting is beneficial for IBD, and I've been doing timeboxing for a long time, anyway. What with all the food I ate yesterday, having a "light" day feels natural.

 

I've also had the two NAD+ Defender pills, and some other supplements. I take vitamin D (necessary in the Scandinavian winter), Omega 3 and Magnesium, though I don't think I'll continue with the last once the bottle runs out. For Omega 3, seeing as I'm running out of my current bottle, I bought a new one that contains astaxanthin, after reading up on it.

 

---

 

With all of these steps taken, how have my symptoms been? Probably too early to tell, but so far so good. As I said, I normally don't have very severe symptoms. I never feel pain or much bloating, don't need to run to the bathroom all the time (I sometimes get a sudden urge, but it's rare and I have never had to run off in the middle of something). My main symptoms are gassiness and blood in the stool. Since starting to avoid grains (but not to complete exclusion), I haven't seen any blood, though I have had a fair bit of gas. Not more, and perhaps a bit less, than before. Today I haven't had a bowel movement all day. Again, too early to draw conclusions, but I'm very hopeful as to the aid of the NAD+ Defender pills, at the very least.



#11 Ari

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Posted 25 January 2020 - 08:07 PM

Ingredients in NAD+ Defender:

 

Micronized curcumin + piperine:

https://www.ncbi.nlm...les/PMC4367210/

Hanai et al [15] evaluated the usefulness of curcumin in 89 patients with quiescent UC. Forty-five patients received 1 g curcumin b.i.d. along with sulfasalazine or mesalamine, and 44 received placebo plus sulfasalazine or mesalamine for 6 months. Curcumin significantly improved both the clinical activity index and the endoscopic index. Recurrence rates were significantly lower in the curcumin group compared with placebo. Curcumin seems to be promising and safe medication for maintaining remission in patients with quiescent UC.

 

 

Berberine:

https://www.ncbi.nlm...les/PMC3311435/

In summary, berberine promotes recovery of DSS-induced colitis and exerts inhibitory effects on proinflammatory responses in colonic macrophages and epithelial cells. Thus berberine may represent a new therapeutic approach for treating gastrointestinal inflammatory disorders.

 

(However, I'm following this thread carefully: https://www.longecit...-carcinogenic/)

 

Boswellia serrata:

https://www.ncbi.nlm...les/PMC4367210/

In the only available study, 30 patients with UC were randomized to receive either Boswellia serrata resin (900 mg/d in 3 doses, n=20) or sulfasalazine (3 g/d in 3 doses, n=10) for 6 weeks. Remission of the disease was achieved in 14 of 20 patients who received Boswellia gum resin, compared with 4 of 10 who received sulfasalazine [8]. Larger studies are urgently needed.

 

Not all studies show an effect, however. For maintaining remission:

In a double-blind, placebo controlled study investigating the efficacy of Boswelan in maintaining remission in CD, 82 patients were randomized to either Boswelan (n=42, 3×2 capsules/day; 400 mg each) or placebo (n=40). No differences in the two groups concerning the remission rates were noticed. Regarding safety, no disadvantages of taking the drug compared to placebo were observed [29]. This trial confirmed the good tolerability of Boswelan, although there were no significant differences versus placebo in maintenance of remission.

 

 

Milk thistle:

https://medcraveonli...IJ-05-00128.pdf

Silybinin and isosilybinin containing fractions of silymarin more potently inhibited pro-inflammatory cytokine secretion from macrophage and colonic epithelial cell lines.

 

Obviously, there's more to it than just these studies, but they indicate that this pill at least should have some promise in helping me with this disease.



#12 Ari

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Posted 26 January 2020 - 09:28 AM

Forgot MSM:

https://www.ncbi.nlm...pubmed/21463646

Results showed that MSM decreased macroscopic and microscopic colonic damage scores caused by administration of acetic acid. MSM treatment also significantly reduced colonic levels of MDA, MPO and IL-1β, while increased the levels of GSH and CAT compared with acetic acid-induced colitis group. It seems that MSM as a natural product may have a protective effect in an experimental ulcerative colitis.

 

 

The thing I'm thinking about now, however, is the dosage for these things. For example, this link says that "Clinical research studies have found that the effective amounts range from about 1.5 grams to 6 grams" when it comes to MSM. NAD+ Defender contains 150 mg per pill, adding up to 600 mg for the maximum recommended dose of four pills/day. I suspect I'll find the same for some of the other ingredients.



#13 Oakman

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Posted 26 January 2020 - 05:10 PM

Forgot MSM:

https://www.ncbi.nlm...pubmed/21463646

 

The thing I'm thinking about now, however, is the dosage for these things. For example, this link says that "Clinical research studies have found that the effective amounts range from about 1.5 grams to 6 grams" when it comes to MSM. NAD+ Defender contains 150 mg per pill, adding up to 600 mg for the maximum recommended dose of four pills/day. I suspect I'll find the same for some of the other ingredients.

 

MSM is very inexpensive. It has virtually no taste dissolved in water or juice. You can take grams of it with no toxicity. If you think it might help you, try some, because it certainly cannot hurt you in any reasonable amount.

 

Dosage - Animal studies have found no toxicity for methylsulfonylmethane, according to Drugs.com. Even when rats were fed up to 7 times the amount recommended for humans, no adverse events occurred. A standard dose for arthritis and other joint conditions is 2 to 6 g per day in 2 or 3 divided doses.

https://www.livestro...ulfonylmethane/


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#14 SomethingClever

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Posted 27 January 2020 - 03:36 PM

Following! We suspect my husband has this issue but are still caught in the waves of testing. Please keep us updated on your journey!

#15 Ari

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Posted 27 January 2020 - 04:42 PM

MSM is very inexpensive. It has virtually no taste dissolved in water or juice. You can take grams of it with no toxicity. If you think it might help you, try some, because it certainly cannot hurt you in any reasonable amount.

 

Dosage - Animal studies have found no toxicity for methylsulfonylmethane, according to Drugs.com. Even when rats were fed up to 7 times the amount recommended for humans, no adverse events occurred. A standard dose for arthritis and other joint conditions is 2 to 6 g per day in 2 or 3 divided doses.

https://www.livestro...ulfonylmethane/

 

Yes, it looks very safe. I found a cheap source here in Sweden, too. Looks like I'll be able to get away cheaper with a lot of these ingredients. Turmeric, MSM and milk thistle I can get a hold of here, at least. Berberine and Boswellia Serrata are tougher, but then with that other thread about cancer risks of berberine, perhaps I'll want to skip that, anyway.

 

I found this excellent article: https://medium.com/h...rk-90ad50ee509c

 

It lists a ton of supplements with dosages and references to studies. My list of supplements that could be beneficial is growing rapidly. I think I have a good two dozen by now! Remains to choose which ones to try. Perhaps a cycling regimen could be in order, since a common problem with IBS medication is developing a tolerance (though I haven't seen any discussion of that when it comes to supplements).

 

For now, I'm taking four NAD+ Defender a day (2 in the morning without food, 2 in the afternoon with food), as well as salmon oil (omega 3 and astaxanthine), vit D and magnesium. I've so far cut out wheat, though it's been just a couple of days without it. As of yet, no real change in symptoms. Bleeding is still happening, though the gas is not too bad.



#16 Ari

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Posted 27 January 2020 - 04:45 PM

Following! We suspect my husband has this issue but are still caught in the waves of testing. Please keep us updated on your journey!

 

You have my sympathies! It looks like I have a rather mild version. It can obviously be a lot worse. Hopefully I'll find something that works for me and he will find something that works for him, whether it turns out to be the same or not. It looks to me that this thing has a lot of individual variations, and what works for some may not work for others.



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#17 Ari

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Posted 27 January 2020 - 05:04 PM

Here's my current Big List of stuff that's been shown in at least one study to improve symptoms of IBD. There's a lot! Hard to know where to start.

  1. Aloe vera
  2. Andrographis paniculata (Acanthaceae)
  3. Astaxanthine
  4. Berberine
  5. Bilberry (anthocyanin)
  6. Boswellia Serrata
  7. Cannabidol
  8. Chios mustic gum (Pistacia lentiscus-Anacardiaceae)
  9. Coconut oil
  10. EGCG (green tea extract)
  11. Extract of myrrh, dry extract of chamomile flowers and coffee charcoal
  12. Fufangkushen colon-coated capsule (FCC)
  13. Germinated barley foodstuff (GBF)
  14. Ginger
  15. Ginseng
  16. Glutathione
  17. Jian Pi Ling (JPL)
  18. Magnesium
  19. Melatonin
  20. Methylsulfonylmethane (MSM)
  21. Milk thistle (silibinin)
  22. Mucin
  23. N acetyl cysteine (NAC)
  24. N acetyl glucosamine (NAG)
  25. Oenothera biennis (evening primrose oil)
  26. Olive oil
  27. Omega 3
  28. Phosphatidylcholine (PC)
  29. Quercetin
  30. Resveratrol
  31. Rooibos
  32. Rutin
  33. Tripterygium wilfordii Hook F
  34. Turmeric/curcumin
  35. Vitamin E
  36. Wheat grass juice (Triticum aestivum)
  37. Wormwood
  38. Xilei-san
  39. Zinc

Edited by Ari, 27 January 2020 - 05:15 PM.






Also tagged with one or more of these keywords: ibd, crohns disease, ulcerative colitis, autoimmune, bowels, inflammation

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