(Part 2) Best products from r/CrohnsDisease

I was in a somewhat similar situation a few months ago. My Crohn's was "in remission" but I was still having gut cramps. I did strict paleo for awhile and that helped some but didn't completely get rid of my cramping. I found the FODMAP diet online and figured it was worth a try and I was surprised by how much it helped me. I used this book as my guide and it's pretty thorough but not over-the-top crazy like some diet books can be. I had to cook all my meals for myself the first couple weeks to make sure I didn't accidentally eat something that is "not allowed" but now I can be a little less strict and not have bad symptoms. It did take the full two weeks of the elimination diet before I noticed a change in my symptoms so if you don't notice a change immediately it might still help!

The hardest part was cooking without garlic and onion but chives and green onion are decent replacements. For the most part, I base my meals around a typical "paleo" meal with more cooked veggies/potatoes and less meat and I make substitutions for the non-FODMAP friendly foods. I think corn is the only approved food that I have issues with sometimes...I'm pretty lucky in that respect. Of course, don't eat foods that you know don't work for you just because the diet says they're safe! I'm happy to help more if you have questions...just let me know! Best of luck to you and I hope you can find some safe foods.

Well, my capsule endoscopy came out clean (with no Crohn's) so I went ahead with the surgery. However, when I had my reversal in March my recovery went well until I got my first bought of pouchitis. Since my reversal my ESR, Liver Enzymes, CMP, etc. are all over the place and now we're worried about full blown Crohn's or Liver damage. I even was in the hospital for a really bad puking episode and upper right quadrant pain. I manged to get myself so dehydrated that I was passing out and not even keeping the zofran down a few weeks ago. I haven't been able to go to the gym and do a full hour and a half workout. With the ostomy, I was biking about 8 miles a day.

I also have remicade induced skin issues. The studies think it's a form of eczema/psoriasis and it loves my butt cheeks and lady bits. I also have it on my hands and patches show up on my arms and legs from time to time. The skin issues showed up right around the time that Remicade stopped working (antibodies).

However, when I had my ielo. The skin issues went to my belly around my stoma and cleared up around my privates. So though it was there around my pouch, it was easier to take care of because the skin prep kept it dry. I had the change my bag a bit more often than needed (mostly because my skin would start to weep when I worked out) but overall not a big deal because my ass hole wasn't on fire.

I also liked that with the bag that I could sleep through the night and kinda ignore it on the weekends around the house. My stoma shrunk down really fast so I had to go in to my WCRN several times to get the right type of bag so there was some leakage the first few weeks but after that, I was golden. With the jpouch, I don't have a huge issue with urgency. However, there are certain foods that if I do eat/drink (like a beer at a party), I have to wear a diapper to bed because the is a 50/50% chance that I'll poop myself in the middle of the night. This could be nerve damage or just my pouch learning how to fart.

Since you're a fellow lady, you too will love the fact that you can wear maternity pants. My stoma was above my belly button, thanks in part to my steroid gutt. So maternity jeans allowed me to wear my skinny jeans that I love without issue. It was also super cushy at work because it felt like I was wearing sweat pants. Pregnancy Belly Bands are also awesome for making normal clothing work. I like them a lot more than the belts because it looked like a tank top under my clothes.

The negative is that I had to sometimes go up a shirt size to accommodate my ostomy but all and all not a bad deal. I did one thing though, I got myself a surgery present. I went to the outlets and bought myself a coach purse. This bag has the center zip pocket which was the absolutely perfect size for all of my ostomy supplies and it made me feel better to walk down the street and have a sexy looking purse! The one I linked isn't the same one but it's close enough.

The first two weeks post op are the suckest. You just went through a major surgery and while you're still on pain meds you're going to feel weak and even a bit dizzy. So do make sure that you rest up. It's a good thing that you have a home nurse to help you with your bag changes. You're belly is going to be swollen for a few weeks and until you can see you stoma underneath your boobs, it's like your a pregnant woman unable to see your own feet. Or maybe it's just me and my big boobs (I am a /r/ABraThatFits worshiper).

The hardest thing is finding out which ostomy appliance brand and skin prep works best for you. I do have to say it is worth investing in a good make up mirror the little one that they give you when you're sent home from the hospital is good for an emergency kit but not so much when you're standing in your bathroom learning how to do the changes.

I even had a little camping chair in my bathroom for when I wanted to air out my skin before I took a shower. Sat in the bathroom, watched some netflix and then hopped in the shower.

When it came to the gym, I started walking for a half hour about 4 weeks post op. When I was still at home on disability, I would walk up and down the block between episodes of Doctor Who (defiantly recommend getting into the show). At 12 weeks post op, I started to try to run again. It didn't work so well with me because of where my stoma was. So I switched to a trail stationary bike and started at 2 miles a day and walking to 8 miles a day (sometimes 10). I ended up loosing almost 30lbs before I had my take down.

If you're really interested in how diet can affect auto-immune disease, I've been reading this great book called The Paleo Approach by Sarah Ballantyne http://www.amazon.co.uk/Paleo-Approach-The-Sarah-Ballantyne/dp/1936608391 She has a great website too, called The Paleo Mom http://www.thepaleomom.com/ and you can get a good flavour of what her book is about from there.

I originally came from SCD to try and manage my symptoms and had good success, but didn't stick to it longterm enough, and reverted back to normal diet, but then flared up again funnily enough. I'm following it again but with the bonus knowledge I've gained from The Paleo Approach so I've learned what foods are particularly vicious towards auto-immune disease and what encourages heeling. Bone broth being particularly great as you've found doing the intro, and boosting vit D3 and Omega3 foods as much as poss through food mainly, with a wee top up of multi -vitamins each day.

When you haven't got bone broth to hand, as its a bit if chore to make continuously, I have a couple of glasses of hot fruit juice with a spoonful of gelatine in. Gelatine has been proven to aid digestion, and is supposedly quite good at helping babies cope with consuming milk, so may help if you are finding issues with dairy related products. I only have hard cheeses myself and cope well with the SCD yogurt anyway, but the bonus effect of it suppisedly helping to heal the mucosal lining jn your intestine makes it worth a punt. This is gelatine made from animals products by the way.

On the idea of Paleo diet, there is also what's called the auto-immune protocol which is a bit like the SCD starter diet in a way, give that a google for more info.

That's fine, report away; I believe in the system. I'm confident I'll be exonerated as I know I have never done anything of the sort.

You'd have a hard time explaining why I wouldn't manipulate the 1, or I think at most 2, posts that are downvoted. You'd also have a hard time explaining why some of my most upvoted comments contain other regular users thanking me for a post. Yeah, you've a real penchant for interpreting empirical evidence.

It couldn't possibly be that, aside from these types of exchanges, many of my posts are informative, thoughtful, well researched, and scientifically accurate. Nah, people would never upvote posts like that. I know that idea really irks you. I will gladly concede that once it's evident to me during an exchange the other party is very clearly in the wrong, I will use more stern and harsh language with them, like in this case with you. You should have seen that I have never sworn, and while I probably come dangerously close to crossing a line, I don't actually cross it.

Anyways, no, it's not another attempt at insulting you. I made that explicitly clear when I said, "I'm actually trying to establish a foundation for a productive exchange". You genuinely cannot read.

So, this can no longer be a productive exchange as you don't appear to understand the words I write. You lack the mental acuity to understand the points I make, so we are "speaking" at each other. I offered to use a medium of communication where this will not be the case, and you have refused. Not only can you not read, but you are a coward. I have the courage to stand by my statements in a format where there is less room for ambiguity, and you do not. My offer stands whenever you're ready.

With that, I wish you good luck in achieving grade school level reading abilities. Maybe then you'll have the confidence to hash it out verbally. If you happen to have a P.O. box, or you feel comfortable in send me your mailing address, I will literally send you a gift to get you started. Again, good luck.

They really are the worst. Well, not the worst - if you ever get an external drain or a mushroom catheter drain put in, you'll know. But they are pretty rough.

I've been using pads as well - the ones I use are also from Amazon, but are an Always overnight brand (https://www.amazon.com/gp/product/B01IQXXUFO/ref=oh_aui_search_detailpage?ie=UTF8&psc=1) if you're ever wanting to try a different type. It's wild how something so basic can feel super different (I'm sure the women in this subreddit will laugh at me for saying that).

Have you noticed certain underwear being more comfortable than others? I pretty much go through a rotation of only a couple different styles of boxer briefs now because other types can put uncomfortable pressure / tugging on the setons.

Best of luck to you - this will never be an easy disease to deal with, but we adapt, we persevere, and most importantly - we survive.

hm, well short stories are generally my go to for lighter reading so I'll recommend a few of those.

Always looking to promote Italo Calvino; desert island picks would probably be Invisible Cities and Cosmicomics. The Baron in the Trees, while not resembling the first two in vignette formatting, also bears mentioning as a personal favorite. Calvino does what some derisively refer to as "magical realism" in the most elegant way. The word economy that he can employ in a description to give a character real depth is utterly stunning.

If that's not your jam, Etgar Keret is also fantastic - in addition to being woefully under appreciated in the states. He writes a lot of "sudden fiction," a vaguely campy term for really short short-fiction; it's dark stuff though, sort of like an Israeli Franz Kafka who watched the Simpsons and read Pynchon. Girl on the Fridge and The Bus Driver Who Wanted to be God are excellent collections to start with.

I mention him last because he's probably the most famous but Haruki Murakami is a perennial favorite of mine, The Elephant Vanishes being a lovely collection of short stories. Were I not in this subreddit, I'd forgo mentioning that this is one of the books that lives in my washroom on the toilet tank, but I'm sure my fellow crohnies will understand.

Hope there are a couple suggestions there that are new to you, happy reading.

Just a few more tips that might be helpful.

Big train stations and bus stations have toilets. But they usually charge. It’s about 20p (although can be more) So keep some change handy. They don’t usually take anything smaller than 10p (not 5, 2 or 1p coins) so get a few 10p and 20p coins.
Some trains have toilets. But these are only really long distance trains, you won’t get any on the underground trains.

If anywhere that sells food or drink, provides seating. They also need to provide toilet facilities. So pubs, clubs, restaurants, even things places like McDonald’s. if the door is locked. Ask a member of staff, the key will be behind the till. Pubs are a great option because 1. There are so many of them, 2. You can sneak in and out easily with out feeling guilty. 3. Your partner can sit and have a beer if they want, while you do your thing.

Big supermarkets always have toilets. They are usually at the front, by the customer service. Smaller supermarkets won’t have them though.

Shopping centres (malls) always have toilets.

Sometimes you get public toilets out on the street. They look like this. you have to pay to use them. So again keep some change on you. DO NOT flush the toilet before you are completely finished and are fully dressed again. Most of the time, when you flush, it unlocks and opens the door. And in some of them, it automatically floods to clean the floor. Flushing before you are finished can be messy and embarrassing.

Over here, we have things called radar keys. they are used to unlock disabled/accessible toilets. Most disabled/accessible toilets in busy public areas are unlocked. But if you are somewhere like a national trust property, on a popular walk somewhere, somewhere either more remote. Or sometimes places like bus stations are locked to stop people getting up to naughtiness in them. The toilet might be locked. And you need one of these keys. British people can apply for them. But you can also buy them online cheap. But I don’t know if you will be able to get it shipped to you.

There are a few apps and websites that will show you the closest toilet based on your location. It might be worth having a look for them.


And for some really good news. Us brits know how to build toilets that don’t have that weird massive gap between the door and the toilet wall, so everyone can see you. That seam so common in America. So enjoy the extra privacy.

Have a great time in England. It really is a great place to visit (and live of course).

I do cheat. At first I kept it strict but slowly introduced those "cheat" foods back into my system. I've found that wheat absolutely destroys me so I cheat on sugary foods such as chocolate. I'm currently in a chocolate hangover from Christmas and have the pimples to prove it! Dark chocolate is much healthier so I keep a bar of 85% Lindt cocoa in the pantry for those chocolate cravings.

As for social outings, it's not too difficult to find "safe" foods at restaurants. Most of them have some sort of low-fat menu and have things like broiled fish and steamed veggies. And don't be shy to ask! Ask what ingredients it's made with, which oils where used, ask if you can switch out the starchy bread for more veggies. You can never go wrong with more veggies.

My go-to social outing is some japanese/chinese food place that serves sushi. If we don't feel like cooking that night, it's usually sushsi for dinner.

Most of my recipes include meat, since it's one of basis of the diet. My favorite go-to's for something cost-effective and relatively easy is taco salad, all sorts of veggie soups, pork roast, breakfast of bacon and eggs, and roast chicken are a few. For snacks I often have fruits and nuts. Apple slices or celery with almond butter spread, greek yogurt with blueberries, pomegranate and honey, chopped up baby carrots mixed with almonds almost like a trail mix, fruit smoothies with frozen fruit and yogurt. Now I'm hungry.

A great website for recipes is everydaypaleo.com. Once you get the hang of cooking paleo, you can take any old recipe and "paleoize" it by substituting ingredients. This is also a great cookbook. It's so great I gave it as a gift for my BF and dad for Christmas and they love it!

if you're still on prednisone, well, there's your acne cause. 100%

whenever i go on bowel rest (i.e. stop eating food and just drink fluids), my skin clears up beautifully. i'm not sure if it's simply the extra hydration, or if i have dietary triggers. dairy and greasy foods have a reputation for causing acne, but i haven't read any science on that. (props on the vegan diet!) wash your face after you eat, if you get food stuffs or grease around your face. i use this, though there's also a foaming version that lots of people like.

wear sunscreen. hydrate by drinking lots of water and applying moisturizer. this stuff is good. with the pump so you don't get weird crap in your lotion. wear sunscreen.

these product recommendations are pretty reliably loved by r/skincareaddiction. good ingredients, unscented, work to rebuild your skin's protective barrier against infection and inflammation. but everyone is different, so ymmv of course.

also, i'm a huge fan of curology. it's 20 bucks a month. you send pictures of your face and problem areas, and a dermatologist is basically of at your beck and call to answer all your questions online. you get a prescription face cream to use every night, and recommendations for products, routines, etc. the prescription creams almost all use tretinoin, which treats acne and signs of aging. (wear suncreen!) but you'd probably get some other antibacterial and anti-inflammatory ingredients as well.

I'm in a similar situation - UC since 2000, had a flareup last fall, and never fully recovered my energy even though the flareup was controlled. Even though my bowel movements went back to normal, I was sleeping 12+ hours per night, and randomly falling asleep on the couch in the afternoon - and I was disoriented whenever my SO tried to wake me up.

Over the past few months, I've tried everything. I've been back and forth to my GI and primary care doctor, and also met with a rheumatologist, sleep medicine doctor, and a dietician. I was even sent for a sleep study, because they were worried that I might have narcolepsy (I don't)!

Of everything that I tried, these are the things that worked. I made each change one at a time, and each one improved my energy a little bit. I now feel almost completely back to normal:

1. Increased my Humira dose from every two weeks to every week. The theory was that I still had some residual inflammation making me fatigued, even though my other symptoms were gone. This improved my bowel symptoms more than I thought they could possibly be improved, so I guess there was some truth to that.
   
   
2. Cut back on my caffeine intake. I realized that I was trapped in a cycle of feeling exhausted, drinking more coffee, having restless sleep (even though I was sleeping the day away!), and feeling more exhausted. I stopped drinking coffee, which was incredibly rough at first - but I think I'm sleeping better now. I only allow myself one cup of black tea in the morning.
   
   
3. Re-read the side-effect profile for all of my medications, to see if anything I was taking could be causing drowsiness. I had been on an antihistamine nasal spray for years, and didn't think it was bothering me - but when I asked my allergy doctor about it, he said that drowsiness was a "very rare" side effect, and maybe I was more prone to it because of my underlying UC-related fatigue. He switched me to a steroid spray instead, and my drowsiness is gone - no more falling asleep on the couch! The fatigue remains, but it's more manageable now because I can now force myself to stay awake, even though I feel like crap!
   
   
4. Started taking a B12 supplement (this is in addition to my daily multivitamin). I bought the type that contains methylcobalamin, which is the easiest-to-absorb form of B12. It's a cherry-flavored lozenge that you dissolve under your tongue. However, if you have CD in your ileum, it might be physically impossible for you to absorb enough B12. Ask your doctor about B12 injections!
   
   
5. Increased my Vitamin D dose to 3000 IU/day (this is also in addition to my daily multivitamin). A few years ago (in a period of remission), I was extremely fatigued, and having difficulty getting out of bed in the morning. I was diagnosed with a vitamin D insufficiency - my blood level was 24ng/ml. I started taking supplements (2000 IU/day), and when the level got up to 56ng/ml, I felt awesome! I decided to stay at that dose indefinitely. With this last flareup, my vitamin D level dropped back down to 41, despite no change in my supplements. I'm now slowly increasing my dose, and my doctor is sending me for blood work periodically to make sure I stay in a healthy range (currently at 3000 IU, and might increase to 4000 IU after my next blood test).
   
   For some background on the vitamin D dosing:
   
   A lot of researchers are now suggesting that the currently accepted "normal" range for blood tests is too low, and actually represents the minimum level we should aim for - and that the current recommendations for dietary intake are too low to even get us to that minimum! There's also a link between vitamin D deficiency and IBD, though there's no definitive answer as to which comes first (there's a brief discussion, with a few citations, here.
   
   From what I've read, and what I've discussed with my GI and primary care doctor, it's a good idea to increase to whatever dose you need to get your blood levels between 50 and 100ng/ml - there are some tips here for how to do so. (Although the dosages might seem high, they're safe - many doctors prescribe 50,000 IU per week for patients with severe deficiencies!)
   

So, my fiancée and I had to cave and get a 1 bath (no kids any time soon). Been pretty good the last 3 years.


But...flair is starting...very much considering one of these.

Honestly the first 20 pounds just happened by themselves in the first four months. After that though, I had to exercise a ton (doing six days a week) and take a mass gainer. I’ve found this one works really well for me if I do half a serving in the morning and half at night.

I travel internationally for work and spend up to 3 months on the road at a time. I purchased https://smile.amazon.com/Prestige-Insulin-Temperature-Sensitive-Medications/dp/B00NA8SR8G/ref=sr_1_90?keywords=cold+medicine+travel+bag&qid=1557150858&s=gateway&sr=8-90 and a small lunch box sized cooler that will fit in my carryon. The medicine case has ice packs and then fits inside the cooler that i add one of the ice packs that ship with the Humira and that keeps the medicine cold for well over 24 hours. Long enough to fly across the globe and deal with rental cars / hotels. I travel with up to 8 pens at a time and this has worked for me so far.

I used silicone scar sheets, it seemed to help.

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I used this style: https://www.amazon.com/ScarAway-Silicone-Scar-Sheets-1-5/dp/B003DGWTXE?th=1

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I cut them to fit the width and length of my scar.

Terrible idea, unless your idea of a good idea is getting diarrhea spatters all over your tires, legs and shoes.

A 5 gallon bucket with a toilet seat lid and a biodegradable plastic liner would be a much better idea for a road trip.