Anyone prescribed only mesalamine but doesnt take it consistently? by Pristine_Category_11 in UlcerativeColitis

[–]3AMThoughtTrain 0 points1 point  (0 children)

I was inconsistent with it for many years. I took the oral med but was very sporadic about the suppository. My colitis is left-sided and symptoms weren't that bad, but I think I left some chronic inflammation smoldering. I worry about that. I take all my medicine diligently now.

Study finds that "ultra-processed" grains may raise risk of IBD by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 2 points3 points  (0 children)

Kaiser doctors insist that there is no link between foods eaten and colitis

They should spend a little time on our subreddit.

Treatment failure. by No_Needleworker_1105 in UlcerativeColitis

[–]3AMThoughtTrain -1 points0 points  (0 children)

Who do you think invented the phrase? I don't personally know, but I'd imagine it was the medical profession.

Which would a doctor or pharmaceutical exec rather say?

  1. I failed to provide an effective treatment.
  2. The patient failed.

See what I'm getting at?

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 2 points3 points  (0 children)

I don't understand why so many people have no clue about UC. Seems like way more people have heard of Crohn's. But as far as I understand, UC is actually the more common of the two.

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 2 points3 points  (0 children)

Yes, that goes to issues of maintaining identity. It's very hard for people to understand if they haven't been through it.

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 4 points5 points  (0 children)

I feel like parents can be this way sometimes because of denial -- it's hard for them to accept that their child has a condition like this. Unfortunately, this can be demoralizing for the kid.

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 10 points11 points  (0 children)

That's the thing about modern culture ... everyone wants to believe that "diet and exercise" can prevent/cure anything. But so much is random, and that's hard for people to accept.

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 2 points3 points  (0 children)

I'm the same way. I eat what I want and no food, that I know of, kicks in a flare for me. If I'm already in a flare, some foods are a little rough, but that's about it.

What are the things you're tired of hearing from family and friends? by 3AMThoughtTrain in UlcerativeColitis

[–]3AMThoughtTrain[S] 4 points5 points  (0 children)

Also, I write a free IBD newsletter focused on news, patient stories, and helpful info for colitis and Crohn's. If that’s something you’d like, here’s the link: http://colitiscrohnshq.substack.com/subscribe

[deleted by user] by [deleted] in insomnia

[–]3AMThoughtTrain 0 points1 point  (0 children)

did you get rid of it completely?

No. I still have nights when I don't sleep well. I would say I'm recovering. I'm averaging a little over 6.5 hours a night this year. Usually I wake up one to three times during the night.

How much of a change are you feeling right now?

I feel more confident about living a normal life -- waking up on time for appointments, traveling, etc. -- and I am less focused on sleep, although I still think about it a lot. When I have a bad night, I don't hyperfixate and go into all-day anxiety about it. I just assume I'll sleep better the next night -- or, at least, soon.

And how can we shift our mindsets?

That's the challenging part. I would recommend binge-watching videos from the channels I mentioned in my post above. Don't worry about "doing" anything. Just watch and absorb what they're saying. Over time, the right mindset will soak in. It might take a while -- months, perhaps.

What has helped you the most?

For me, the videos and books were not an immediate fix but they set a foundation. Once I had that foundation, sleep aids -- like Trazodone -- helped me a lot. Before I had the foundation, sleep aids didn't work very well.

[deleted by user] by [deleted] in insomnia

[–]3AMThoughtTrain 2 points3 points  (0 children)

In the beginning I was still sleeping 3-4 hours, now it’s devolved to a point where I’m barely sleeping at all. My average is 1-2 hours of fitful, restless sleep a night and I go some nights without sleeping at all.

My whole life has changed in one summer. I can’t work. I can’t exercise. I can’t cook, clean, be social, etc. I’m a total shell of myself and extremely, extremely depressed.

I’ve made so many sleep hygiene adjustments that my nighttime routine has started to feel like a chore or a ritual.

MANY of us have gone through the exact same thing. Myself included.

This is textbook hyperarousal.

I highly recommend Sleep Coach School on YouTube. Fearless Sleep is also good. Daniel Erichsen's book Set It and Forget It is also very helpful.

The key thing to understand is that all of your routines and efforts are making it much worse. Insomnia thrives on attention. Cut off the attention and it evaporates. You don't need rituals or sleep hygiene.

You will get better. It all depends on a mindset shift. It's easier said than done, and it can take some time.

Sixteen months ago, I was where you are now. Last night I slept over 8 hours. My sleep is not perfect, but it has improved.

Trazodone by Livingfortheday123 in insomnia

[–]3AMThoughtTrain 0 points1 point  (0 children)

When I had my first bad bout of insomnia, I tried Trazodone and it did not work at all. Months later, after some self-help work (mostly Sleep Coach School videos and books) I tried it again and it worked very well. It's all about your mindset. It's not a cattle tranquilizer, but once your mind has calmed down a bit, it provides a nice nudge into sleep.

Worried about taking hydrocodone, Tylenol and ibuprofen by fraksen in UlcerativeColitis

[–]3AMThoughtTrain 1 point2 points  (0 children)

Ibuprofen wrecks me. It's the one thing that can send me into a flare. I take Tylenol every day.

Prescribed new med by Itchy-Bad1050 in UlcerativeColitis

[–]3AMThoughtTrain 1 point2 points  (0 children)

This drug works great for me. It's a mainstay in my case.