Wheat, Quinoa (or bulgar wheat?), Rye

Barley, Rolled Oats, Millet, Rice

tombom24
1
Pancolitis | Diagnosed 2017 | USA

When the other medications can't control your UC anymore. There isn't a hard rule or severity level that you need to reach. I have pretty mild disease activity and symptoms, but mesalamine and steroids stopped working so they put me on a biologic anyways.

However, don't freak out; there's a lot of stronger options in pill form now such as azathioprine, 6-MP, rinvoq, xeljanz, zeposia, and velsipity. If you're in the US, it might be real tough to get those approved but that depends on your insurance.

tombom24
2
Pancolitis | Diagnosed 2017 | USA

Like you're wiping a marker? 

I bought a bidet seat attachment and this is simply no longer an issue (unless I poop outside my home of course). Less friction, cleaner, less TP used; I highly recommend.

But the others are right - it's probably due to fiber/diet.

I should be working but suddenly hill climbs seem very interesting to me.

The Ocho strikes again...

tombom24
1
Pancolitis | Diagnosed 2017 | USA

Wow, that's a detailed biopsy report, I'm almost jealous - they usually just show me a summary. I could be wrong, but my understanding is that colitis=inflammation of the colon, and ileitis=inflammation of the ileum. Not really a separate disease, it's just describing where they found inflammation.

...however at the bottom they say "Histomorphological features in correlation with endoscopic findings, raise the possibility of lymphocytic colitis." There's also a line near the beginning about a lack of crypt abcess/ulceration, which is usually a tell-tale sign of Crohn's/UC.

Lymphocytic colitis is a distinctly different diagnosis from UC, but I have no idea if they can co-exist (didn't know about it before today). Unfortunately I've seen a bunch of posts here about misdiagnosis, that's the nature of IBD; sometimes it's a bit of guesswork because UC/Crohn's/Lymphocytic have some unexplained crossovers.

tombom24
1
Pancolitis | Diagnosed 2017 | USA

Long-term progress is more important than short-term symptoms. It's totally okay to have ups and downs, as long as you are improving generally.

tombom24
3
Pancolitis | Diagnosed 2017 | USA

Okay it sounds like you can't avoid your family sometimes. I would give them a warning like a toddler when they first bring it up, then just casually put in earplugs when it's clear they aren't going to shut up. Don't even say anything, just smile and nod while you zone out or start blasting music. Even better if they're really a bright color, or massive safety earmuffs! I've seen some cool pink and camo hunting ear pro, or you could go with the classic blaze orange..

I'm sure they'll get offended and emotional if you do this every time, but if they won't listen to you, then don't listen right back at them! Only half serious, however the reflection technique can be very effective with stubborn people.

Go ask a local brewery for base malt, they probably won't charge you MSRP plus there's no shipping costs.

I use two 60lb vittles stacked horizontal. Someone mentioned buckling, and while the plastic is a bit flexible when fully loaded, it hasn't collapsed or damaged it in any way.

For small grains, I bought a bunch of these containers from Wally World. They hold ~2lbs of grain and also sell larger ones that hold a full 5lbs. Not completely airtight however it's pretty damn good for the price (or you can get really frugal and reuse peanut butter filled pretzel containers). I put up really cheap shelving that fits a row of large containers in the back with the 2qt ones in the front.

Pretty sure I have the exact same mill, it just rebranded slightly. It's basic but has worked for 6 years. Only thing I'd recommend is getting a extra o-ring that goes around one of the rollers - it's just there to help it start spinning, it broke on mine after a few years and would jam if the grain didn't quite feed perfectly. I ended up rigging up a 16" bike wheel with an old lathe motor and v-belt.

tombom24
8
Pancolitis | Diagnosed 2017 | USA

Not eating will just extend your flare - your body needs nutrients in order to rebuild and heal the damage in your intestine. Depriving it of those necessary building blocks means it takes longer and you will lose more weight.

Some people compromise by intermittent fasting. But if you REALLY can't tolerate any food, ask your doctor (or even better, a dietician) about exclusive enteral nutrition (EEN) - basically just drinking formula for adults. Don't buy ensure or other ones in the grocery store, because they tend to have artificial sugars and emulsifiers that can harm the gut.

tombom24
3
Pancolitis | Diagnosed 2017 | USA

I love the laser lettuce, but struggle with moderation and the mental health side effects (does not reduce my anxiety like it use to). High CBD ratio edibles are a better balance for me personally - just as effective for UC symptoms but easier to go about my day and doesn't hurt my lungs.

tombom24
3
Pancolitis | Diagnosed 2017 | USA

Yeah, I only buy golden beets because of this

tombom24
3
Pancolitis | Diagnosed 2017 | USA

It sounds like you're currently on the recovery roller coaster - UC flares don't always heal in a linear way, you could have a bad week or two and then improve again. Or is could be a bit of a rebound from the steroid wearing off. If it gets consistently worse then tell your doctor and they might adjust your medication dose and/or schedule.\

The urge to go is coming back but nothings comes out

This is called tenesmus, it's a common symptom. I get it after I've had a bowel movement and it feels like there's more. Don't strain too hard when this happens especially if you have hemorrhoids.

tombom24
3
Pancolitis | Diagnosed 2017 | USA

I hate to burst your bubble but vinegar pickling isn't a true fermentation - it needs to be a salt/water brine in order for the bacteria to stay alive and ferment. Still very easy to make at home though!

That being said, I've noticed the same thing about both types pickled foods. Kimchi is surprisingly safe for me unless I get a really spicy batch, pickles are no problem, sauerkraut. I have no idea why.

Hell yes, I love macro shots!

Fourth is my favorite I think

tombom24
5
Pancolitis | Diagnosed 2017 | USA
10dLink

I can assure you, if you name it - we have tried it.

Challenge accepted:

Ozanimod - Zeposia
Tofacitinib - Xeljanz
Upadacitinib - Rinvoq
Etrasimod - Velsipity

Adalimumab - Humira
Golimumab - Simponi
Infliximab - Remicade
Ustekinumab - Stelara
Vedolizumab - Entyvio
Mirikizumab-mrkz - Omvoh

These all target a different piece of the immune system and/or inflammatory response. Unfortunately the only way to figure out which one works for someone is to check them off the list one by one. Also, some of these take months to fully kick in and take effect - I started Stelara last September, didn't see results until December, and finally feel like I'm close to remission now in May...but it was worth the wait.

Keep doing what you're doing and try to focus on things you can control - sometimes you gotta just embrace the suck and wait for appointments/test results/medications. The hardest part of UC for me personally is the mental health side of it, because it feels like I'm watching life pass me by in a blur; all my social activities and hobbies get instantly put on pause in a flare. So even just being around your wife and doing little things together will really help to distract from that reality.

Anything is possible in your mind - close your eyes and go find him in the spirit world!

Simpsons Double Roasted Crystal (DRC) is hands down my favorite dark malt. It's not as harsh as others and gives similar but more intense flavor to Special B, along with lots of darkness.

Learn from my mistake: adding a ton of chocolate/coffee malts will not create those flavors without a well-rounded grain bill, correct water chemistry, and the right balance of bitterness/sweetness. I tried that a while back and it tasted like slightly burnt toast because I went overboard with choc & coffee malts.

tombom24
3
Pancolitis | Diagnosed 2017 | USA
11dLink

We can't tell you that without the biopsy results, and your doctor is in the same position. Those results are the only way to confirm ulcerative colitis and will show permanent cell damage even if you have no symptoms or inflammation in your intestine.

I wasn't allowed to say Jesus Christ in exasperation as a child because that's considered a sin - it's one of the ten commandments. I was even scolded once for saying "jeez" because it's a shortened version...

...so now that I'm a fully grown adult atheist, I say it more than ever! I'm making up for lost swearing time. Jesus zombie christ on a bike, cursing is fun!

tombom24
3
Pancolitis | Diagnosed 2017 | USA
12dLink

First of all, was that colonoscopy result the actual biopsy sample analysis? Or just visual results? Because the ONLY legit reason you would stop medication is if they found microscopic evidence of a non-IBD cause, and determined that you were misdiagnosed. Even then, I'd still request every possible blood/stool test to confirm before making drug changes.

If your new doctor won't refill your prescriptions, go find another one ASAP. It's appalling that they would suggest stopping maintenance meds...

It's everywhere, see this guy's comment.  There's a lot of focus on fertility since that's a big unanswered question and it seems to correlate (though to be fair, a lot of modern things correlate with lower birth rates).

tombom24
2
Pancolitis | Diagnosed 2017 | USA
12dLink

I mean it is technically blood loss, and the body needs to repair the vein slightly too. And if nutrients/resources are already stretched thin from intestinal damage, then fatigue makes perfect sense to me.

But I have no facts to back this up either - just seems logical that small injuries become larger issues when the inflammatory/immune response is messed up from UC or medication.

tombom24
2Edited
12dLink

Currently BMW water pumps are $240 on FCP Euro, so that's not outta line, but the 5 other brands are between $35-75; 4 of those are listed as OEM replacement parts. That's a huge difference.

In fact you can get the whole timing belt replacement kit with pump included for $150 (lol we're all trying to get you to just start turning some wrenches - only one way to learn!)

tombom24
2
Pancolitis | Diagnosed 2017 | USA
13dLink

No that doesn't sound right - time to call the doctor...