What are /r/CrohnsDisease's favorite Products & Services?

From 3.5 billion Reddit comments

If you want warn water. Luxe Bidet Neo 320 - Self Cleaning Dual Nozzle - Hot and Cold Water Non-Electric Mechanical Bidet Toilet Attachment (blue and white) https://www.amazon.com/dp/B00A0RX2UI/ref=cm_sw_r_cp_apa_EBTWAbHQDEBEP

Your husband is awesome for being so supportive. I have done the exact same thing next to my partner and luckily received the same understanding. He might appreciate these if he has a good sense of humor. Poop socks

Basically, yeah! I started getting serious about carving out an hour at night to work out. At school, it’s easier because I lived right above the gym. And then, I had two servings of a mass gainer everyday in the morning and at night. There was just no way I was eating enough and I found it easier to just drink my meals.

OPTIMUM NUTRITION Serious Mass Weight Gainer Protein Powder, Chocolate, 12 Pound https://www.amazon.com/dp/B000GIPJ0M/ref=cm_sw_r_cp_api_i_vOzwDbGB5F7M9

Even though the community usually says it's autoimmune (since it acts similar), the general consensus is that IBD is actually NOT autoimmune. Our bodies are attacking something in our guts. It's thought to be an over response to microbes. In true autoimmune diseases, there is no known rhyme or reason the body attacks itself.

This, from WebMD, describes it better than I can:

>Crohn’s is a disorder of uncertain etiology. It has often been thought of as an autoimmune disease but research suggests that the chronic inflammation may not be due to the immune system attacking the body itself, but rather a result of the immune system attacking harmless virus, bacteria or food in the gut causing inflammation that leads to bowel injury.

I wrote a letter for this very purpose. Feel free to use it and adapt it to your needs. My hope is people will read it and use it anyway they think it will help.

https://medium.com/@derekjhopper/open-sourced-im-an-employee-with-crohns-9bb4e27ad0db

I thought this might be of interest to the community here. Specifically the proposal to make access to Loperamide more difficult by treating it like pseudoephedrine.

I myself have Crohns and am about eight years post surgery. Though my disease is fortunately stable, I lost enough intestine in the surgery to make diarrhea a constant issue without the use of some sort of antimotility medication like loperamide. I generally take about ten 2mg tablets daily.

I've had issues with getting it by prescription, since many insurers refuse to cover anything that is available over the counter. The small quantity blister packages available at most stores are prohibitively expensive in the quantities I require, but I've been able to get the 400 caplet bulk packs from CostCo relatively cheaply.

Subjecting over-the-counter loperamide to the same restrictions as Sudafed would be a major problem for me, and I suspect a number of other people here as well.

From NYT:

In its lengthy series of votes, the Senate rejected amendments proposed by Democrats that were intended to allow imports of prescription drugs from Canada, protect rural hospitals and ensure continued access to coverage for people with pre-existing conditions, among other causes.

https://www.nytimes.com/2017/01/12/us/politics/health-care-congress-vote-a-rama.html

It used to happen to me from time to time. According to the Mayo Clinic light-colored, white or clay could mean a lack of bile or could be caused from antidiarrheal meds.

More yellow, greasy and smelly is likely excess fat possibly due to malabsorption or caused by gluten.

Here’s a link

I drink soylent bottles from Amazon and the only deficiencies I had last blood test were Vitamin D ( from sunlight? ) and it was winter.

Each bottle is 20% daily requirements . And 400 calories and taste like a mixture of left over Cheerio milk and pancake batter. (Not sweet, but neutral enough and can be mixed with stuff). It’s like almond milk consistency or a tiny thicker, not too thick.

Omeprazole is the generic for Prilosec. I know because I was prescribed it when I was first diagnosed with Crohn's and the H. pylori bacteria. I hope this helps.

"Omeprazole is used to treat certain conditions where there is too much acid in the stomach. It is used to treat gastric and duodenal ulcers, erosive esophagitis, and gastroesophageal reflux disease (GERD). GERD is a condition where the acid in the stomach washes back up into the esophagus. Sometimes omeprazole is used in combination with antibiotics (eg, amoxicillin, clarithromycin) to treat ulcers associated with infection caused by the H. pylori bacteria (germ).

Omeprazole is also used to treat Zollinger-Ellison syndrome, a condition where the stomach produces too much acid.

Omeprazole is also used to treat dyspepsia, a condition that causes sour stomach, belching, heart burn, or indigestion.

In addition, omeprazole is used to prevent upper gastrointestinal tract bleeding in seriously ill patients.

Omeprazole is a proton pump inhibitor (PPI). It works by decreasing the amount of acid produced by the stomach."

Reference site:

https://www.mayoclinic.org/drugs-supplements/omeprazole-oral-route/description/drg-20066836

I recently bought a portable TENS unit from Amazon for $27 - it's been an amazing purchase so far and really helps with my bone and joint issues.

Here's a link if you want to give it a try: https://www.amazon.com/dp/B00O7CM12W/ref=cm_sw_r_cp_api_RmOFxbHST306X

I don't have IBD (my son has CD), I have a bidet ($25 on Amazon that was highly recommended by reddit users about three years ago) and absolutely recommend it for everyone!

Garbage bags with kitty litter work ok but they don't contain the smell.

Have a look at Wag Bags (also called Go Anywhere Bags). They are heavy duty double sealed with powder chemicals that cut down on the smell

https://www.walmart.com/ip/Cleanwaste-The-Go-Anywhere-Waste-Kit-12-Pack-D019W12/45161533

Combine them with a bucket or the specialized fold up seats, wet wipes, a change of clothes and a blanket for privacy and you are good to go.

You can get specialized seats and even little tents but frankly if you get to the point of needing it, you won't have time for the tent.

An alternative is a short bucket with a tight fitting lid and RV holding tank deodorizer gel or kitty litter.

I suggest you keep a piece of cardboard that has a note saying something like "I have a medical condition and am having an emergency bowel movement. I'm Ok and just need a few minutes. Please do not disturb". Put that in the window. If you are pulled off of the highway, especially in the US, police will investigate and won't like seeing someone moving under a blanket in the car.

Coursera is another one of these that's really good

Edit: upon further review, you already mentioned it, haha. I've taken a couple of data and programming courses on there that I liked

Lialda can cause liver issues.

https://www.webmd.com/drugs/2/drug-147055/lialda-oral/details/list-sideeffects

Edit: Very rarely, Asacol can cause kidney and liver damage. Fortunately, these effects are also reversible when the drug is stopped.

Hey guys, nurse here. Sorry, but Covid-19 isn't killing by cytokine storm. It's just killing by normal old acute respiratory distress and organ failure. Our immune suppressants aren't going to help us with this one.

Source: https://podcasts.google.com/?feed=aHR0cHM6Ly9lbWNyaXQub3JnL2ZlZWQvcG9kY2FzdC8&episode=aHR0cHM6Ly9lbWNyaXQub3JnLz9wPTQ3MTgxMA

Tl;dr - a couple of emergency medicine/critical care physicians talking about how to manage Covid-19 patients. In the conversation, they emphasize repeatedly that steroids are not being recommended for use in these cases because it appears that steroids don't help and instead prolong the duration of the illness.

Sorry for the bad news!

https://www.amazon.ca/CROING-2-pcs-Portable-Postpartum-Perineal/dp/B07FVRQLC4/ref=mp_s_a_1_12?dchild=1&keywords=portable+bidet&qid=1627499300&sr=8-12

It's basically a squeeze bottle that you need to fill up at a sink, but it's helpful!

https://www.amazon.com/dp/B00A0RHSJO/ref=cm_sw_r_cp_api_i_eu9CEbYK5V5ED

My boyfriend got us this one from amazon a couple of years ago, and we love it! You just screw it in under the toilet seat and hook it to the water supply. It does get a bit cold in the winter since we didn’t spring for the hot water option, but it’s not terrible. I think it makes a huge difference in terms of hygiene/comfort, especially during a flare or colonoscopy prep. Definitely recommend!

I would try to get some clarification on what they mean. From the VA health insurance site you would need to either already have health insurance or be on Medicare/Medicaid. If you don't have any of that and they have just been treating you for your symptoms, I would look at getting insurance from somewhere. ACA open enrollment ends December 15th so you don't really have much time to figure out if you need to get insurance.

I wouldn't risk stopping treatment since no matter what you do, Crohn's will most likely come back and sooner rather than later without medicine. Starting and stopping biologics also chances you creating a resistance to it making the medicine no longer work.

I honestly don’t know anything about leaking bowels so you need a doc involved in any decision to change your diet but if it were just crohn’s that we were talking about then I’d be pointing you towards this page right now https://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan#1 You really need to talk to a gastroenterologist about all of this and get the opinion of an expert in everything to do with crohn’s and all gastro conditions, don’t hold back on telling them that your finding it really hard and how much it’s affecting your life. I’d want to find out the risks and consequences of cheating on your diet and talking to your gastroenterologist gets you a second opinion from someone who knows what’s going on with you.

Here’s a link for just MTX and it’s cancer risk. As far as I know it slightly increases your risk for Lymphoma and a couple other cancers. https://www.webmd.com/rheumatoid-arthritis/news/20041116/rheumatoid-arthritis-drug-linked-to-cancer

And here’s one about the risk of HSTCL, a very rare but very incurable cancer. Pretty sure it has happened mostly with people on Humira + MTX http://www.cghjournal.org/article/S1542-3565(10)00907-9/pdf

You can use http://sci-hub.tw/ to get to articles behind a paywall. It's easiest to search using the DOI (digital object identifier) which is usually listed in the abstract of articles. Or try this: https://lifehacker.com/read-research-papers-trapped-behind-a-paywall-with-this-1828771519

I just found this link (not sure how much I trust it): http://www.marketwatch.com/story/fda-approves-takedas-entyvio-vedolizumab-for-the-treatment-of-adults-with-moderately-to-severely-active-ulcerative-colitis-or-crohns-disease-2014-05-20

Key paragraph: > "In March, Entyvio received a positive Opinion for the treatment of adults with moderately to severely active UC and CD from the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA), and Takeda is awaiting response from the European Commission on approval for Marketing Authorisation.

Are you in the hospital now? I am... Just checked in yesterday. The pain medication they have me on definitely makes me have weird dreams, so I would have no doubt after having a resection they would have you on some pretty strong stuff and that would cause the intense/bad dreams. For tonight I have my phone on to http://www.rainymood.com, which actually has really helped me sleep here. I'd recommend it to anyone having trouble sleeping, especially in an unfamiliar place.

Thanks for your time in reading and your opinion. CCFA is an outstanding organization with an even better reputation. They were just recently given a 4 out of 4 star rating for the 4th year in a row by charity navigator. Please visit the link!

CCFA was also just featured by consumer reports as one of two health charities to invest in.

I've been a volunteer for over 10 years now and even have been lucky enough to be a camp counselor for the local Camp Oasis that they provide to kids living with IBD. My mother also runs their pediatric support group. Please take a look at the many other awesome things that your donations go to fund by visiting www.ccfa.org. Not only do they fund research but they offer and fund so many patient support and education programs.

Thanks again for your comment and taking the time to read!

Can I recycle my medication bottles? > Many local municipalities with curbside pickup programs sort their recyclables with a screening device called a trommel, which has small holes used to remove unwanted debris. Bottles, cans and containers as large as water bottles remain in the trommel for proper recycling, while broken glass, rocks and other items fall through the holes and are sent to the landfill. "Small bottles have a nasty habit of looking like broken glass and scraps to a trommel," Cornell says. "For this reason, recycling pill vials in a curbside program shouldn't be done unless you can find out if your system can handle the small size."

Also, reusing a material is always better for the environment than recycling. I haven't factored in the consideration of having to ship these containers around though.

It's in danish but it's available for free here: http://issuu.com/lindasweden/docs/ibd_h_ndbogen_dk

The title is "IBD Håndbogen" (translates literally as "The IBD Handbook"). I have no idea who the publisher is or if it has an ISBN but it was written by 3 danish senior research doctors from 3 different danish hospitals. You can find their names in bold at the bottom of the first page.

We were just in the hospital for a week and having a tablet holder that attaches to the bed was a game changer. Get one for yourself too. The shows on the TV in the hospital were not great and getting to connect to wireless headphones made life so much more comfortable.

We got this oneand it was the best out of several that we tried and returned.

I hope everything goes smoothly for your child!

I am in the US and am not an existing 23andMe customer. I am still able to participate in the study and get the ($200.00) 23andme genetic report done for free.

I signed up a few weeks ago. I just got my test kit and spit in the vial. Sending it in today, looking forward to seeing the results.

Link I used to participate in the study: https://www.23andme.com/ibd/

I heve been studying the human dynamic vis a vis weather.
I suffer sore joints and leg cramps even gout on occasion. Most of it ameliorated by laying off certain foods but hampered by weather types.

I am not on any drugs for stress of whatever but take pain killers for the gout when it's bad. Would any of you be interested in helping me with my (amateur) research?

Contact me when you get particularly bad pain events and when you fog up too, please.
I have a blog on MyOpera and my g-mail works -as does the /myopera mail account, occasionally.

When I was using those pens, they would frequently malfunction, so I asked to switch back to syringes, even though the syringes hurt like hell.

I use the app Remember the Milk for all my task scheduling. It's feature rich and reliable.

There is a liquid iron supplement that’s supposed to be more tolerable, my iron levels were so low that I had to get an infusion but if they ever get low enough that I need a supplement again that’s what I’m gonna try. Here’s the link to the one my mom has used and has said works pretty well: FLORA - Floradix Iron & Herbs, Vegetarian, Liquid, by Salus, 17 Fl Oz https://www.amazon.com/dp/B0010EI0CA/ref=cm_sw_r_cp_api_glt_fabc_BQ9P63QKTBRB9SQMEEZN?_encoding=UTF8&psc=1

I don't believe there are any studies to show that diet can help close up fistulas but I'd be thrilled to be wrong.

As for the pain from the abcesses and the surgery... I've had 2 setons for 3+ years. Immediately after surgery I found that hot baths were my best friend. If take 2 lengthy baths each day (typically 45-90 minutes each). While in the bath I'd palpate the hardened part of the abcesses and they'd eventually break up/dissolve and wash away.

One other piece of unsolicited advice... If you have perianal abscess and the setons are in your butt then it can be very difficult to wipe properly. Bad hygiene increases the risk of infection and just generally makes you feel yucky. Install a cheap toilet seat bidet. Buy a few portable bidets so you can stay clean even when away from home. I think I really would have had a break down were it not for the bidets.

I would echo a lot of the recommendations above but also get a cushion to make it more comfortable when you have to sit like this one

https://www.amazon.com/dp/B07V3BZG88/ref=cm_sw_r_cp_apa_fabc_.eAXFbS5NSCT5?_encoding=UTF8&psc=1 & https://www.amazon.com/dp/B08CVSKB1T/ref=cm_sw_r_cp_apa_fabc_QfAXFbGZ1HX30?_encoding=UTF8&psc=1

I took the wood from a wood shelf kit and just attached some folding table brackets 😊

So by cotton pads I meant the 3x3 inch medical pads you can get at the medical store where you buy your ostomy supplies. You don't need sterilized. They are quite inexpensive. I wouldn't want to use wet wipes because who knows what chemicals are in those. This sort of thing

https://www.amazon.ca/Disposable-Dressing-Cleaning-prepping-Latex-Free/dp/B07ZKNL7QR

I never had issues with leakage but everyone is different. I used Hollister supplies. It'll depend on your skin type etc. You can buy adhesive paste to help it stick better. There are a ton of different useful products. Take a look on the ostomy brand websites like Hollister and coloplast. Also check out the ostomy sub here, and uoaa message board. Another tip I give everyone is to buy Hollister m9 drops. It's a little blue and white bottle. You put 1 drop into the bag after you empty it to reduce odour next time you empty!! It was a lifesaver for me. https://www.uoaa.org/forum/viewforum.php?f=2

There is a thing called "Just a Drop". I have no idea how it works, but if you put a couple drops in the toilet bowl it somehow absorbs the scent of your shit. It's pretty insane actually. It smells kind of chemical, maybe like a mild cleaner or bathroom aerosol but it really does eliminate the scent.

Amazon link

I'd recommend reading "Breaking the Vicious Cycle" - it's the official SCD book and I believe answers most of your questions. The 24 hour yogurt is a key part to the SCD, it's sort of a bitch to make every ~week, otherwise I'd still be eating it (the taste grows on you).

Here's a link to the book on Amazon: https://www.amazon.com/dp/0969276818

I could talk about this all day as I've had serious issues with weight loss thanks to Crohn's. I'm also a pretty avid cook, and extremely interested in nutrition. If you want to chat, shoot me a direct message and I'd be happy to exchange phone numbers.

If that is too personal, then here are some quick pointers:

-smoothies are wonderful ways to pack calories into a fast and easy meal or snack. Ingredients like coconut oil, nut butter, or avocado are awesome calorie bombs to add in. Could also hit it with protein powder (non-sweetened egg weight protein powder would be the most tummy friendly option). I will not bother with specific recipes. Just google smoothies. Sky's the limit.

-fat is the most calorie dense macro-nutrient (vs carbs or protein) and one great source is coconut oil. It's form of fat is easily ingested.

-similar to smoothies, and even easier, is supplementing with ensure or other weight gainer type drinks. I've used "Serious Mass" before and the UCLA IBD nutrionist looked it over and said there were not any ingredients that spooked her. That being said, there is a lot of wacky stuff in these supplements, so depending on your case you may want to keep it fresh and stick with smoothies where you control what goes into them. Here is the link to it on amazon: https://smile.amazon.com/gp/product/B0015R36SK/ref=oh_aui_detailpage_o07_s00?ie=UTF8&th=1

all that being said, sadly Crohn's is a bitch and putting on weight is going to be a challenge. I'm working to build out way more content on the subject of cooking/nutrition as it relates to Crohn's. Actually just launched a youtube channel and soon to be website if you're curios https://www.youtube.com/channel/UCNkZ3bKU19n6D_TgXLt63MA

Good luck amigo.

Saccharomyces Boulardii has been a god send for me. I've been taking it for 3 years now and I'm basically symptom free. I would definitely give it a shot. You can order it straight off amazon.

https://www.amazon.com/Jarrow-Saccharomyces-Boulardii-Intestinal-Digestive/dp/B0056GCLVO

My favorite pants since my surgery have been these Sarouel/ Yoga type things from Amazon https://www.amazon.com/gp/product/B071P9YWK2/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1 I've got maybe 7 pairs and they are in hot rotation. I've got kind of an artsy fartsy bohemian look going on. They have a nice wide waistband that I can tuck my bag into. It provides some support and camoflage. I'm also a fan of draping a pasmina or large shawl scarf over my stoma side to camoflage if I cannot make it to empy the bag right now.

I make my own covers, it lets me choose what makes me smile. I have a lot of skulls, very heavy on sugar skulls. I've had folks think it was some kind of little pouch purse, too funny when they tweak your bag and you tell them it's your shit bag. My current favorite is a black and white flannel with cats wearing glasses. It's comfortable against my skin, absorbs any sweat and wicks it away.

Also, recently bought a Nutribullet to make fruit, veg and yogurt smoothies. I had a blockage from a salad about a month after getting my loop done. So not fun. In order to avoid that I started avoiding fruits and veggies. I realized all the nutrition I am missing out on. This adds it back for me.

My iron and ferritin levels always come back ok, but I also had fatigue every day until I started taking an iron supplement. I take Solgar Gentle Iron that I get from Amazon, it’s doesn’t cause any stomach upset unlike other supplements I’ve tried.

TL;DR - Specific Carbohydrate Diet. It cuts out simple sugars and starches (carbohydrates) except for high fiber carbohydrates.

I follow the specific carbohydrate diet. Here is an amazon link to the book, but a lot of the information is available on www.breakingtheviciouscycle.info. About half the book is the theory as to why the diet works and where the diet originated. The 2nd half is a defined plan for recovery, recipes, and foods that are compliant with the diet.

When I'm flaring I strictly follow the diet; it has a 2 month timeline described in the book where you start with a bare bones diet and then slowly add things in over time. If I'm not flaring, I'll stick to it as closely as possible, but I don't stress about going out with friends or nights where I don't have time to cook something.

It has made me far bolder in my "sure I'll go" mentality, and taught me a lot about pre-pooping when I'm going somewhere. I also keep 2 rolls in my car and one of these in my car and assorted bags each at all times so I can drop in my pocket if I think things might get dicey.

I don't really do camping any more, I enjoyed it, it's just the camping I like isn't the car camping, it's the shit where there's no one near you and that shit can be a lot of fucking work and I like flush toilets far too much.

I am pretty bad at keeping up with it and generally only track if things deviate from my "normal", but I use GI Monitor [Google Play link] [iOS link]. It's pretty plain but pretty customizable. Apparently the community posts/"support group" in it can get pretty troll-y, but I just ignore that generally.

Bowelle looks so cool! Wish they had it for Android. The trend visualization in GI Monitor is not great and the UI feels a little clunky in general, so I'm going to hang around and hope people have some awesome Android alternatives!

I found myColitis to be the most complete bowel symptom tracking app (for android). It can be used to track bowel movements, symptoms, food intake, medication, and moods. The build-in trend analysing tools are crude but probably as good as you can expect from just an app. To me the main thing is that it has pretty much all of the input options that I wish to have (plus loads of options that I never use but can imagine using at some point in time).

The burning can just be due to the diarrhea and going all the time. Diaper lotion or something else with zinc oxide can help.

Looking again, I'm not sure why you were given antibiotics for a cold. Antibiotics don't do anything to a cold virus, since it's a virus and not a bacteria. Unless you didn't have a cold and it was something else.

In any case, eating simple non-seasoned foods like rice/chicken/lean meat and food without high insoluable fiber (vegitables) can help not irritate any inflimation you may or may not have going on. Immodium can help eliminate any urgency to go (use wisely and talk to your doctor). Butt cream can help keep your buthole from burning off. As far as crohn's starter packs go, that about covers it unless you want to add whatever medication your doctor perscribes, a bidet, and a heating pad.

I had similar feelings and ended up doing talk therapy for a few months to work through all of this when I was diagnosed. My therapist recommended mindfulness and the book Full Catastrophe Living, which really helped me.

My mantra (from her) when I'm feeling worried is "What can I do about this now?" And if the answer is nothing, then is it worth my energy to worry about it.

I'll also say, I was diagnosed about 5 years ago and I'm doing very well. I have stopped googling symptoms because horror stories are everywhere. I focus on my health and what works for me. There are hard days, but it got a lot better emotionally and physically.

Good luck and hugs to you.

Is your phone android? I have this app and you can log your symptoms, what you ate, the meds you took, how much you slept, even bowel movements. I guess it's close to what you're looking for and it works amazingly well for me!

I normally have this and it isn't that bad (at least with taking a 1/2 tablespoon which is a half dose).

A sleep tracking app can help to see if you are actually sleeping well or just tossing all night. I've been using Sleep as android with a pebble watch but there are other ways to track sleep.

I traveled to the EU with Humira when I was taking it for my crohn's years ago (it was the syringe style). I notified the airline and they told me to just let security know. Make sure to bring the dose in it's original packaging and maybe the prescription page/doc with your name on it. I did keep it in my carry on bc I was afraid of my checked bag not getting to my destination with me. It was in a small bag with a gel cool pack and my other meds. There was no issue with TSA and it did stay sort of cold (we were traveling to Italy for like 12+ hours total in the cool pack). I think Humira is Ok to be at room temperature for a week. I did keep it in the frig when I arrived. This is the type of bag I used: https://www.amazon.com/Insulin-Cooling-Travel-Case-Organizer/dp/B07QNP9DGT/

Have a great trip and best of luck!

Yes I have because of a serious bought of depression. It went terribly. Another flare within 2 months, bed ridden in 3, and Remicade never worked the same, one of my bigger mistakes in life.

Come to find out after the fact it is a common occurrence that if a patient stops taking it the body develops the anti-bodies faster then had a patient stayed on it.

Talk to your GI office now about the change in insurance, I had the best luck with either the nurses who did the actual infusion or the billing department. If you aren't all ready on the patience assistance program they can help set it up. Assuming you are in america check out https://www.healthcare.gov/ and look for insurance. Losing your employment is a qualified life event to find other coverage, and I'm sure you can find something cheaper then cobra, at least a few hundred dollars cheaper.

Get a sitz bath if you don’t have one so you can soak your bum with Epsom salt. I have this one and it’s definitely helped deal with a fissure

https://www.amazon.com/Foldable-Discreet-Postpartum-Hemorrhoids-Episiotomy/dp/B08CDNFMLC

Ugh noooo. They are SUPER kind and friendly, you could ask them when or if they might be available to ship to Canada?

I’ve also used absorb https://www.amazon.com/Absorb-Plus-1kg-Unsweetened-Vanilla/dp/B07Q3ZQPH6

I drink a collagen powder that also includes hylauronic acid on a daily basis.

I drink it for a range of reasons though. I met with a nutritionist who highly recommended I drink bone broth for the collagen to get those building blocks to repair any organ damage, specifically trying to tailor my diet to help my Crohns. Since it's not incredibly practical to drink bone broth all the time, I instead started looking around for supplements that would get me the same benefits, which is how I found collagen powder.

For myself personally these are all of the reasons I take it:

- joint health

- organ tissue health & repair

- skin health & prevent wrinkles (the wrinkles thing isn't 100% proven yet but studies have been showing promise in this method so it's just an added benefit, lol)

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https://www.amazon.com/dp/B07XR5DB7Y?psc=1&ref=ppx\_yo2ov\_dt\_b\_product\_details

I see you're buying the individually packaged ones instead of the bulk bottles. I keep mine in one of these

This might be a good option; there are different shapes for different body parts. Sending wishes for wellness.

https://www.amazon.com/Thermacare-Heat-Wraps-Lower-Back/dp/B003YOW3FE/ref=asc_df_B003YOW3FE/?tag=hyprod-20&linkCode=df0&hvadid=459565948985&hvpos=&hvnetw=g&hvrand=128398060508989706&hvpone=&hvptwo=&hvqmt=&hvdev=...

When I was having my fistula surgery I used this:

Donut Pillow Tailbone Hemorrhoid... https://www.amazon.com/dp/B07KF9P5FZ?ref=ppx_pop_mob_ap_share

It’s extremely comfortable. Highly recommend!

I’ve had it for a few years and don’t remember where I got it, but it looks pretty similar to this except for the snap. There’s nothing connecting the ends on mine. Being a thicker memory foam is the most important part, I think. It compresses as needed but doesn’t smash too flat.

I haven't had to do that one yet, but I almost always carry wag bags with me. I've used them on decently trafficked trails before and carried it back home with me.

Those bags are pretty good about containing smell though.

I’m much more of the constipation and hard stool type and found Colace. I use the clear stool softener now and it works within twelve hours or so but i take 2-3.

If your trying to make it happen i would try this version though. They sell it at store too. It worked too well for me lol

https://www.amazon.com/Softener-Stimulant-Laxative-Tablets-Constipation/dp/B005R3VXEC/ref=mp_s_a_1_1_sspa?crid=TUMB0DB2HWJZ&keywords=colace&qid=1665363825&qu=eyJxc2MiOiIzLjQwIiwicXNhIjoiMy4zMyIsInFzcCI6IjMuMzIifQ%3D%3D&rdc=1&sp...

I wish I had tips. Instead, all I can do is commiserate. I've never found a permanent solution for facial acne.

One thing that helps my body acne is to use a chlorhexidine wash like Hibiclens. (I normally use the store brand instead, and it seems to work just as well.)

Don't get live vaccines while you're on immune suppressants, but you can and definitely should get the flu shot. Over on r/medicine, they were talking about how bad the flu season was in Australia this year, and now the CDC says we're in for it as well: https://weather.com/health/cold-flu/news/2019-02-26-cdc-flu-new-strain

I would say I have moderate Crohn’s, as for biologic side effects v prednisone side effects I don’t think I’m really qualified to answer that question.

Here are corticosteroids long term side effects: https://www.mayoclinic.org/steroids/art-20045692

Here is Humira side effects: https://www.humira.com/crohns

If I had to choose based on effectiveness between the two I would choose Humira. I had been off and on prednisone for years prior to diagnosis and it always seemed like after the taper (or towards the end of it) I would flare really bad. At least with Humira I can inject myself every 2 weeks and (so far) haven’t had a flare and have seen continual improvement.

Edit: just wanted to add that my biggest long term worry with Humira I would say is when I do want to start a family how and if I would be able to be on the medication while pregnant/ breastfeeding or not.

Sounds like a migraine aura. I'm a life long migraine sufferer. I don't get auras, only warning I get is a headache, which I never know until too late wether it will be a migraine or not. Worst pain in the world, I would choose to cure my migraines over my Crohn's if I had a choice. Luckily I only have a few attacks year now vs multiple every month when I was younger. I still get ones that last up to a week though.

*Spelling edit

About 10 years ago the Luxe Bidet Neo was recommended by Reddit people, I (female, non-crohnie) bought one and it's a life changer. I wish I had it when I was younger.

When I had my first colonoscopy, the bidet made the clean-out a "no big-deal". And when there was a toilet paper shortage, I bought a pack of cheap washcloths - cleaned with the bidet, dried off with a washcloth.

It's a little weird at first, but after a few days you get used to it (and the cold water isn't really felt)

Below are the two I’ve been taking. My position is, they might help and can’t hurt. Primal defense https://www.amazon.com/dp/B002HEAPZC/ref=cm_sw_r_api_i_28Q2N33TZKDPHHTZPFS3_0?_encoding=UTF8&psc=1&pldnSite=1

And I just started trying nexabiotic. https://www.amazon.com/dp/B0050FKPU0/ref=cm_sw_r_api_i_EMP2RP2YH1AFH8JM3WP0_0?_encoding=UTF8&psc=1&pldnSite=1

Hi everyone! My name is Mihai, and I am an Android developer.
Years ago, by blind luck, I’ve discovered that my horrible anxiety and brain-fog were caused by a few ingredients and allergens in the food I was eating.
The process of discovering exactly what was causing my suffering was a long and arduous one. It consisted of me going through an elimination diet, where I slowly re-introduced individual foods, and manually kept track of all their ingredients. This took me several months before I had a rough idea of what were my triggers.
Being a developer, I’ve decided to make it easier for other people that find themselves in my position, and hopefully save them a few months of effort. This is how I came up with the idea for MoodBites - a Food Journal that’s built with finding Trigger Foods in mind.
The app has been in development for a few years now, but I’ve finally decided to take the leap and work on it full-time. I am planning to add a lot of new features that I think you’ll love - I’m currently working on a scanner feature that tells you how well you’d tolerate a food, based on your own, personalised data. This way, you don’t have to spend time in the grocery store, worrying whether the biscuits you’ve bought would make you sick for the next 5-7 days.
Anyways, here’s the download link. It’s currently only available on Android, but I am thinking of ways of porting it to iOS as well. Let me know what you think!
Download MoodBites

Works quick… no crash or side effects https://www.amazon.com/MEG-Military-Caffeine-Increase-Performance/dp/B0017O19Q2/ref=mp_s_a_1_1_sspa?crid=3N44R8PFM03CP&keywords=military+energy+gum&qid=1659401252&sprefix=military+e%2Caps%2C271&sr=8-1-spons&psc=1&spLa=ZW5jc...

For whatever reason, pea protein doesn't sit well with me at all.

I like Quest protein powders (Whey Protein Isolate, Micellar Casein), and Naked Rice (brown rice protein).

A lot of people swear by Kate Farms but they're also pea protein.

If you’re on vacation with no bidet handy, you might be able to pack a peri bottle and fill it up at your destination. This might be a similar solution. Amazon has some ranging from $5-$15.

I also recommend flushable/biodegradable wipes of some kind. They can be really soothing and make you feel clean/fresh sans bidet if that’s not your thing. Here are some good ones:

https://www.amazon.com/Goodwipes-Flushable-Biodegradable-Botanicals-Dispenser/dp/B08CVV45H4

My crohns has made me iron deficient as well. My gi doctor has had me taken this vitron c supplement to combat that Vitron-C High Potency Iron Supplement with 125 mg Vitamin C, Dye Free, Vegan, Gluten Free, 60 Count, Pack of 2 https://www.amazon.com/dp/B07HCXZDLP/ref=cm_sw_r_cp_api_i_BB4NGE9MX9XZMKTKH7VS this supplement contains vitamin c to get the most iron absorption possible. At first it turned my stools a bit darker but overall it has given me a huge energy boost and helped with my iron deficiency. I would recommend giving it a try since it claims to be gentle on the digestive system.

I'm trying daily probiotics and digestive enzymes. I read somewhere that probiotic supplements that have many different active strains in them are more effective for Crohn's patients. Most probiotics only include one strain of bacteria.

For example, the probiotic linked below has 6 different strains.

https://www.amazon.com/dp/B09M9617KV?psc=1&ref=ppx\_yo2ov\_dt\_b\_product\_details

Hubby has been using these to help with fistula drainage. They've got the width and the absorbent material is front to back and side to side unlike a disposable brief. They also come in different absorbency levels and can be worn under tight fitting underwear. FitRight Liners

I finally tried the low-Fodmap diet and have been super pleased with the results. The book I usedtakes you through the whole elimination diet and then slowly adds back in foods. I didn’t realize that wheat flour caused me issues until I tried this.

I have some family out that way west of Santa Rosa. I've always been based in Sac but the bay area was where I "lived" so to speak. Different crowds were more inviting, anyone was always welcome to hang out with Jack Herer but the Ed Rosenthal folks though they were hot shit. Dennis Peron was somewhere in the middle, he was writing a book about it all when I was hanging out there in 2012 and it's a pretty good read

>how come you don’t like the hemp wick?

hemp-wick is a last resort because it's still a form of fuel like the butane is.

best option for lighting a pipe/joint is probably one of these things: https://www.amazon.com/Electric-Rechargeable-Windproof-Flameless-Retractable/dp/B08QYTF3ND/

They do "burn out" after a while but they're pretty nice overall.

I’ve also found that butter & sea salt Cosmos are a FANTASTIC alternative. The flavor slaps!

Cosmos Creations Nuggets, Sea Salt and Butter, 7 Ounce (Pack of 2) https://smile.amazon.com/dp/B071FPF6FN/ref=cm_sw_r_cp_api_i_2512QA7CKW6JJKVTHYAC

Side sleeper here with ileostomy. My biggest issue was getting lower back pain, so I bought a knee pillow (https://www.amazon.com/gp/product/B07TX582XL/) to help with that. It makes me more comfortable staying on my side but also is easy to flip from side to side with. Not sure if that's an issue, but thought I'd throw it out there!

This brand.

Amish Country Popcorn | 6 lb Bag | Medium White Popcorn Kernels | Old Fashioned with Recipe Guide (Medium White - 6 lb Bag) https://smile.amazon.com/dp/B00M9NLJWO/ref=cm_sw_r_cp_api_i_2ZGMXJXA6A5VD45Q6BTP

This is the stuff I use and I take about a spoonful every morning so one tub last me a little over a month

You inspired me to do a search on Amazon. Being on Humira has killed my dreams. I think the below medical thermos is the answer

4ALLFAMILY AUTO Shut Off USB TSA Medication Cooler Travel Case Keeps Fridge Temp 36F-46F + Biogel Ice Pack |Perfect Medical Cooler Diabetes Insulin Eye Drop Arthritis (BLUE) https://www.amazon.ca/dp/B08J6WQZ2P/ref=cm_sw_r_cp_api_i_G8SZX7R6X1DNNECF937R

I am really sorry for your loss, I send my condolences. I'm not great at offering advice for stress since I struggle with it myself, but I can hopefully offer you a couple of things to ease you a little.

​

There is a book that my counselor recommended to me which I think may help here. The book is called "I Wasn't Ready to Say Goodbye" by Brook Noel. It goes very into detail about how grief is normal, the different ways a person may grieve, and teaches you how to take care of yourself. They also have a workbook here if you're interested.

There is no right or wrong way to grieve, and the stress you feel is completely normal and valid, so just make sure that you're being gentle with yourself. This book has helped me a lot with establishing boundaries while I grieved about the sudden passing of my Mom back in October of last year.

​

If you don't have an appetite for foods that help during your flare-up, eating something is definitely better than eating nothing. One thing I've had to purchase for myself every now and again is Ensure when my appetite hits low levels. It offers nutrition and can be substituted for a regular meal too (although, it is expensive, so I understand if you are unable to get any).

All the best to you, OP! Remember you are not alone.

This is the best of I’ve foundhttps://smile.amazon.com/dp/B06XDBD9T9/ref=cm_sw_r_cp_api_glt_i_P7Z48QE8A7A8NP9S1KB0

Orgain Organic Vegan Plant Based Nutritional Shake, Smooth Chocolate - Meal Replacement, 16g Protein, 22 Vitamins & Minerals, Dairy Free, Gluten Free, 11 Ounce, 12 Count (Packaging May Vary) https://www.amazon.com/dp/B00JTX7SH2/ref=cm_sw_r_cp_api_glt_i_Y4WFYV48N3DVCKPV7V3D?_encoding=UTF8&psc=1 I swear these shakes saved me. I use the dairy ones but I have heard the vegan ones are also good!

https://www.amazon.com/dp/B097TBVHRS?ref=ppx_pop_mob_ap_share

This is what I ended up going with. I might buy another because the battery does take three hours to charge. Otherwise no complaints, it really helps melt away excruciating abdominal pain while I'm wearing it!

Definitely take some pre-workout with a lower caffeine to other stuff ratio. (I use this one https://www.amazon.com/gp/product/B07DR95J4X/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)

​

Not sure about why weights made u flare up. Ab workouts make my guts hurt but doing other stuff isn't as bad. Also maxing out on squats messed me up as well.

Cutting sugar out of my diet helped, but if that’s not possible this stuff is great

Yes. I think the worst is when people offer "have you tried...?" suggestions. I think we can help by sharing resources about the disease (think links to a podcast on your type of Crohn's) and relay the best way they can help is often just to listen and support as asked.

I read this book last year written by a Crohn's patient that also can be a good gift/recommended reading for family and friends: https://www.amazon.com/What-Doesnt-Kill-You-Chronic/dp/1250751454. Just caveat it with the fact that everyone's disease is different but I think it could help some "get it" more.

Cool, cheers!

Without Their Permission: The Story of Reddit and a Blueprint for How to Change the World by Alexis Ohanian

Start paying a lot of attention to what you eat, and how you feel later in the day, as well as the next day. You can't control Crohn's strictly by eating this or that, but certain things are a huge no-no and as time goes by you'll see patterns associated with how you feel, how you poop, and it'll have a lot to do with what you've eaten. Personally, when I have a really bad flare, I eat plain mashed potatoes. Its not like I can live off them, but it keeps me from being hungry and it doesn't add fuel to the fire, in my case.

Another huge factor is stress. You have to try and get a grip on stress and not let it weigh on you. Stress will send my Crohn's into a fury like no other, so I always do what I can to avoid being stressed.

Eating and your emotional state help a lot. They're just tiny things that won't really cost any extra. As I said in a comment, though, I just recently applied for insurance here and based on my income (which is low) I'm able to get a program that covers the meds I'm on, and keep copays really low.

btw, it seems broccoli fiber is could actually be pretty good for us

Broccoli and Plantain Fibers Prevented E. Coli Movement by 45% to 82% in Study

It depends on the person and what makes them flair up. My boyfriend likes simple and basic things. Grilled chicken with salt and pepper, peas, corn, mash potatoes, rice... etc. Anything like beef or milk makes him go crazy. (Lactaid pills work amazing, btw).

Since mine loves chocolate but has to limit milk. I love making him http://www.instructables.com/id/The-BEST-chococlate-cake-ever...that-happens-to-be/. There is some really awesome recipes here. It just all depends on his tastes and what makes him sick.

And from personal experience, they will still go for things that make them sick just cause they miss it. So every once in a while I'll make him steak. He knows he's gonna suffer, but he enjoys every moment of it.

Wow.. my Ferritin bounces between 5 and 15... can we split and both be normal?

Can you be referred to a hematologist? They can narrow down the cause.

In the meantime, here's a good slide show about iron, ferritin, and conditions around them. . https://www.slideshare.net/Siddz0312/1-clinical-utility-of-serum-ferritin-final Slide 16 lists causes of high ferritin.

WTF, I never knew this was a shared experience! I thought it was so weird how it's been such an issue for me, but never ever thought it could be related to Crohns or my treatment (on remicade).

I initially only used neosporin to help heal some of the open wounds in there, but then realized that it would be bad for my sinuses to get foreign stuff in there (I don't want to cause sinus issues on top of this issue).

For daily maintenance of this issue, I recommend using saline nasal gel (I'll link it below). I just take a q-tip and coat the inside of my nose (not too far back) in the morning and at night and it's helped a ton to keep the inside of my nose moisturized. If I still get some open cuts in there, I'll still use neosporin from time to time.

​

https://www.amazon.com/Ayr-Saline-Nasal-Soothing-Ounce/dp/B0010NSC1U/ref=sxts\_rp\_s\_a2\_0?crid=3H069G5FDYCS3&cv\_ct\_cx=Ayr+Saline+Nasal+Gel&keywords=Ayr+Saline+Nasal+Gel&pd\_rd\_i=B0010NSC1U&pd\_rd\_r=37ca480f-46c5-4e71-a292-64c...

Sure! It is truly a miracle. I'm considering ordering a couple more for days when there's also joint pain!

Weighted Heating Pad, Comfytemp 12x 24" Electric Heating Pad for Back Pain Relief with 9 Heat Settings | 11 Auto-Off | Stay on | Backlight, 2.2lb XL Heat Pad for Shoulders and Cramps Relief, Washable https://www.amazon.com/dp/B08QZK68BY/ref=cm_sw_r_awdo_navT_g_74V51J7Y6350VZZ25QZF

I am still working through the diagnosis and treatment with my doctor. They want more tests, but I bought a brace that keeps my thumb from being used and it works well. I wear it all the time pretty much if it’s hurting. Here is the Amazon link

Mueller Reversible Thumb... https://www.amazon.com/dp/B004YIFA2C?ref=ppx_pop_mob_ap_share

I used this while I was figuring it out. Has good diary aswell as ability to track various symptoms, including bowel movements.

symptoms tracker

https://www.amazon.com/dp/B07H2DWVMK/ref=cm_sw_r_cp_api_glt_i_MYDMBM6B188WS57BERR6

My SO and I have this model, it’s been good to us, I do like the ‘female cleaning’ option for different angles and it’s great for any menstrual related messes.

Would a heated one be nice? Yes. But the price goes up dramatically when you add in the heating capabilities.

I’m so sorry you’re going through this right now. You won’t feel like this forever. Fatigue is especially challenging because it makes everything else you’d like to do even harder. I know it’s hard, but try to put your limited energy toward addressing your fatigue instead of beating yourself up. You’re not a pile of shit, you’re doing your best to deal with a chronic illness, and that is fucking tough. Digestive tract inflammation can inhibit B12 absorption so you may not absorb it even if there’s enough of it in your diet. This oral spray will help til you can get B12 injections scheduled. Hope you can transition to a longer term treatment soon. All the best to you