(Part 3) Best products from r/CrohnsDisease

I put a shank cut of beef or lamb in a pot, sometimes I add pig's feet. I add enough water to cover everything and have about 3 finger widths of water over the meat and bones and I set my stove to the lowest heat setting, so the water is barely at a boil, you could use a slow cooker instead but my slow cooker isn't large enough to make the quantities of bone broth I like to make. I will add whole pepper corns to a [tea infuser like this](kitchen supply 2pcs stainless steel mesh tea ball and spice balls, 2.1 inch tea infuser strainers tea strainer filters tea interval diffuser for tea https://www.amazon.com/dp/B07D9L8WWX/ref=cm_sw_r_cp_apa_i_TYIjDb4H9Q48J) since the pepper corns can burst and I don't want their skins getting into stuff just their flavor. I also add some bay leaves to the pot.

After about 4 hours I take the meatier bones out, remove the meat around the bone that falls off with just a fork and add the bones back into the pot. I'll save the meat for use in something else. If I use pigs feet I don't bother trying to separate meat from bone, since at the end there's pretty much only skin and bone left that isn't liquid.

At about the 4 hour point is usually when I add chunks of ginger root, I skin the roots using a spoon when I buy them then store the whole root in the freezer and usually will grate the root when cooking but for bone broth I cut large chunks off instead of grating since I want the finished product to qualify as a clear liquid.

After I've removed the meat and added the ginger I let it continue to simmer until at least 12 hours total have passed since the process began. I don't salt until this point, I just add salt slowly until I can taste flavors better.

I let it cool then put cheese cloth over a colander and pour the broth through it, all the small bones, bay leaves, and ginger chunks will get stopped by it. From here I portion it out, it can last in the fridge for a week safely so whatever I won't consume in a week I freeze. I've been cooking down the liquid from the portions I will freeze (put back in pot and simmer for several hours more to concentrate it) so that it won't take over my whole freezer and I can make ice cubes of it I can use like a bouillon cube if I just want a cup of it.

It is super easy!

You can go with the minimum, or buy all the stuff.

Minimum is just the starter and some milk, and look online on how to use your oven and a crock to make it without any other equipment.

Here's the starter you want. Don't get the Probiotic, or any others. Just this one.

I bought this crock/slow cooker/yogurt maker, and love it so much I bought two. One is always on with bone broth, and the other one is on yogurt duty.

As for recipes, well, it's good with everything! Sweeten it and have it with bananas and stuff as smoothies, or make frosting for stuff. I love to make frozen yogurt with my little ice cream maker. Yogurt and honey and a vanilla bean in the blender, then into the cold ice cream machine for 20 minutes or so.

Mix it with cashew or almond butter and either salt or honey and use it as dressing or sauce on your main dishes, eat it with nuts and apples for breakfast, and on and on.

I eat a spoonful right when I wake up, and it is always the last thing to go in my mouth before bed. I swear it makes my tummy happy. Hope it works for you!

I travelled france and spain 8 weeks last year.
I use a rigid container, tupperware rectangle locktop which worked well. . It was about 8" x 5" x 3 ". I put very thin gel pac in , then pens and cover with thin gelpac i get with the humira shipment. I lock the cover on
And tape humira box with info around it. I put the container in a soft artic zone lunch cool pack and pack in as many frozen gel packs around the tupperware as i can fit. That should keep it cool enough 30 hours easy. I bought a pink bag as pink things get stolen less often they say. I haven't had an airline agree to refrigerate yet but its been fine.
I just bring my capped pens home in my suitcase. And put them in my sharps at home. Once less thing. If you have a fridge while away your all set. For car travel i freeze bottles of water to put in the lunch pack. They last a long time. I always keep the pens in a covered snap lock rigid container with a slim gelpac inside. Any ice in the bag won't come in contact with the pens . It worked for me. It has a shoulder strap and should NOT count as a carry on. I also put a big red cross on the name tag on it. Medicine should count as nothing. Ive had them say it was my personal item but always find some one who knows better. Good luck, bon voyage, safe travels. https://www.amazon.com/Arctic-Zone-Expandable-Lunch-Light/dp/B07D9W81DZ/ref=asc_df_B07D9W81DZ/?tag=hyprod-20&linkCode=df0&hvadid=242043655372&hvpos=1o3&hvnetw=g&hvrand=1393579111821891576&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9002014&hvtargid=pla-464061775336&psc=1

I take biotin hair supplements :)

There are tons of good ones. I liked the 'extras' in this one, so I've been using it for a few months now:

Hair Growth Vitamins with Biotin. Exclusive Hair Growth Product for Women for Longer, Stronger, Silky & Soft Hair. Visible results in 1 Month. Gluten Free Non-GMO Vitamins for Hair Growth Made in USA https://www.amazon.com/dp/B00UB9DP98/ref=cm_sw_r_cp_api_uFrGAbS3NZ4GF

I take 4 x these a day:
http://www.amazon.com/gp/product/B00309ZDS2

I eat one or two of these after dinner everyday ( love the vanilla bean ):
http://www.danone.ca/en/products/activia

None of these are "the best" but they are easily accessible to me (the Amazon product is available on Subscribe and Save so I get two bottles a month) so I just go hard on them.

I've heard that the gold standard here is this (450 billion per sachet):
http://www.amazon.com/Vsl-Probiotics-30-Sachets-unflavored/dp/B0041IUPLG

While being on Humira (weekly) I just find that my stomach is really noisy at the join between stomach/duodenum and small/large intestine - my self diagnosis from "echo location" from the grumbles :-) This also happens to be where my crohn's is located so maybe my disease is just progressing more.

Long-story short: By taking lots of probiotics I've reduced my stomach noise to basically nil, and i've seen a large improvement in my BM. Whenever I stop taking them (a weekend away that involves alcohol, or eating yeast'y things) i notice a strong return of symptoms.

Hey man! Congrats on the gains. Stick with it.

I’m an avid weight lifter as well and understand how a high calorie diet is important for someone trying to gain weight. On average, I try to drink 2-3 protein shakes a day. Here are some quality brands to check out.

I’m currently on the SCD diet so the top two in the list qualify as legal protein powders. They are not the best tasting, but I really have no problems when drinking either.

Rose Acre Farms Egg White Protein Powder

Sunwarrior Protein

Next, Jay Robb Protein is probably one of the best tasting products I have tried. Plus they use good natural ingredients without adding the unnecessary stuff. Muscle Milk light is another great product that is good for people on the go. I would usually pick up an 18 pack from Sams Club and take two to work each day. It contains no gluten ingredients.

Jay Robb Protein

Muscle Milk Light

The problem with the last two is that some of the ingredients are illegal if on the SCD diet.

What do you like mixing your protein powder with? I made the switch from regular milk to almond milk and felt much better after pounding a shake. No blotting no gas. I’m jumping to Coconut Milk next.
T
ry this out, protein mix + almond or coconut milk + a few tablespoons of all natural peanut butter. The peanut butter will give that shake a boost adding almost 200 extra calories.

What do you think? What are you currently supplementing with?

A couple things that help worlds.

1. Bidets are better than everyone goes on and on about. Seriously.
   
2. Zinc oxide ointment like this really helps, steroid ointment helps more (no need to mix).
   
3. Air yourself out. Going around the house naked or in a skirt/kilt really helps to get some airflow to help with healing.
   
4. A hot sitz bath can also help a lot (epsom salt bath for your butt).

I have UC, and I'm also studying to be a psychologist. ACT is great - out of all the kinds of therapy out there, I think it's one of the best for individuals with chronic illnesses :-) If you're interested in learning more about it, check out the book Get Out of Your Mind and Into Your Life by Steve Hayes.

There's a lot of variation in the type of support that different patients want, so my advice would be to ask your sister what you could do to best support her. (The fact that you're on this sub, and asking this question, is awesome!) In addition, I'd recommend that you learn as much as you can about Crohn's symptoms, treatments, and side effects - I think that would help, no matter what kind of support she needs.

Every patient is different - but for me, personally, the most supportive people in my life are the ones who acknowledge the fact that living with IBD is hard, but treat it as a normal part of life, and don't don't treat me like an invalid (sometimes that can be a very fine line to walk!). My boyfriend and closest friends all have a basic understanding of IBD, have volunteered to accompany me to doctor's appointments (and kept me company during colonoscopy prep!), give me first dibs on the bathroom when I'm not feeling well, and are understanding if I need to avoid certain foods or cancel plans due to illness.

This pillow/plush has been my best friend as I recover. I hug him when I have to cough/sneeze, hold him against my stomach when I sit up, he sits in between me and the seatbelt in the car and all the nurses appreciated him. Highly recommend!
https://www.amazon.com/gp/aw/d/B01M0UTDCB/ref=sxts1?ie=UTF8&qid=1492541745&sr=1&pi=AC_SX236_SY340_QL65

What are you going for there? :)

If you have open skin and/or an active infection, see if you can ask your primary care physician for silvadene cream (silver sulfadiazene). We use it on bedbound patients who get moisture-related skin breakdown from incontinence and that stuff is like magic. We also used the following, just kind of depending on preference of the patient and/or the care provider:

• Coloplast
  
• Calmoseptine
  
• Calazime
  
  And hydrocortisone is your friend, so much love for the lowly hydrocortisone <3

For a number of months I was using the NOW brand of whey protein isolate. It was just pure whey protein and a little soy lecithin to prevent caking. It's not easy finding a protein powder that isn't loaded up with sugar or sugar alcohols.

I thought I tolerated it well, dunno if it contributed to my flaring that led me to hop from keto to SCD, but it's one of the things I eliminated for now. I may give it a try again at some point because I probably still have $40 worth of the stuff in my pantry.

It's unflavored, which is what I wanted, but I always look at protein powder as pure fuel and I don't care what it tastes like. It was pretty bland (but tolerable) mixed with water, but I always did it with almond milk to get a few more calories shoehorned in there.

I'm not saying that you should definitely try that one in particular, but if I were you I'd just try to find the purest stuff I could of whatever protein type I was trying. Egg, casein, whey, hemp, etc. When they load extra stuff in there like sugar/sucralose/aspartame/artificial flavorings/artificial colors/etc, I see that as merely unnecessary chemicals that add random variables to the little experiment I'm continuously running on diet vs. symptoms.

I got a cookbook, cooking with crohn's and colitis. http://www.amazon.ca/How-Cook-Crohns-Colitis-delicious/dp/1581825927

It was a pretty good base. Basically what I learned is that I just can't eat garbage. Some of the recipes are pretty good but some are kind of over the top and take a lot of time to prep so tweak it to what suits you best

https://www.amazon.com/gp/product/B0112SBGQA/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

This is what I use. If you get a different one I would stick with a masticating one over a centrifugal one for it keeps more nutrients intact. If you would like some recipes i can post them. I can't stress enough the miracle this has been for me hopefully this works for you. If it doesn't just keep trying until you find what does. and for the blending that breaks down the fiber so it easier to digest that being said start with what you are comfortable with.

When I came home from Japan about a year ago I immediately bought a toilet seat that did most (not all) of the functions of the Japanese toilets.
https://www.amazon.com/dp/B007HIKQCK/ref=cm_sw_r_cp_apa_i_zaGrDbMFXPSFF

Pricey, but worth every penny. I looked in to the Toto toilets and seats but they're a bit more expensive so I decided to try this one first and it's pretty much everything I wanted. I may upgrade someday and move this one to my second bathroom, but for now I love it!

I feel ya it's super difficult personally I use
https://www.amazon.com/gp/aw/d/B00MT5XHF4/ref=mp_s_a_1_3_a_it?ie=UTF8&qid=1541630088&sr=8-3&keywords=clean+seat+underwear+liner&dpPl=1&dpID=41sxGONkzUL&ref=plSrch

Which I find to not be that bad as well as

https://express.google.com/u/0/product/17132032121762219533_366738920604958537_10037?utm_source=google_shopping&utm_medium=tu_cu&utm_content=eid-lsjeuxoeqt%2Ceid-yyblhentsh%2Ceid-ygcnqnyulq&gtim=CO2VqqTwquq1BxCNwbi3h8LOih8Y0LexByIDVVNEKKD3mN8FMLVO&utm_campaign=10037&gclid=CjwKCAiAt4rfBRBKEiwAC678KakfgZY1puqsyYlv8oIFqSzwANj7auOLyxisQeTTDfUB7CRjlJedahoCAq8QAvD_BwE

I like both as I feel there are pros and cons to each. The depends catches more and has even saved me from accidents but they are bulkier whereas the others are more comfortable and not as obvious when I wear tight pants. I use boxer briefs only and haven't had too many problems with them except for the drainage making me change my underwear more frequently if it gets on my underwear.

I'm continually impressed by our resiliency we have to give ourselves a lot of credit for getting through this crap and really enduring it well. It's difficult but we get through it and will continue to do so.

I had a couple of seatons over 3/4 years.

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The gauze advise is good - in particular non-woven gauze as it doesn't catch on the seaton like the woven gauze - I used to buy these ones here. They come in packs of 5 so you can always have some with you. Just fold them in half and sit it in the crack - I found there was no need to attach them as they very rarely fell out unless doing exercise in which case a bit of tape helped.

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Rotating the seaton round to a 'comfortable' position tended to help too - also useful to realise it moves a lot for when cleaning.

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Also, the view on seatons where I was treated (UK - NHS) was that they could be left in and that they didn't need to be taken out - I kind of went with that for over a year but eventually asked for it to be removed - I wished I'd asked sooner! You'll get used to how it feels and not even notice it - it'll become a new normal - but when it's done its job get it out, I was amazed at how much better it felt to be rid of it!