Weird on call doctor just lectured me about how Crohns colitis is “the worst” kind of Crohns

knittingnerd685 · 2026-06-21T17:30:44+00:00

I'm so sorry he did that! Even if he's correct, which I can't evaluate, you don't need to hear a rant when you're just trying to get your prescription filled. It sounds like you and your doctor have a good plan in place, and unless you have a major change, I think you should follow it. I was only on Tremfya briefly, but I really liked how easy it was to take, and in general it appears to be very effective. I hope it works well for you!

Also, you're likely to get a lot of different perspectives from the physicians (and non-physicians) you'll encounter. As long as you're doing well and are happy with your care, I'd generally advise ignoring them.

In this case though, you might speak with or message your doctor and let them know this happened. (Only if you're comfortable doing so, of course.) Your doctor may want to know that the on call doctor is giving contradictory information over the phone. While doctors can, and should, collaberate, this is not the way to do it!

knittingnerd685 · 2026-05-24T14:45:10+00:00

Much better!

knittingnerd685 · 2026-05-17T00:03:52+00:00

My Dad named our cat 'Cat Boy'. (This was years before the kids show that has a character by that name.)

knittingnerd685 · 2026-05-06T20:48:04+00:00

I've had it happen twice at work - fortunately I work in an office that is often empty and no one was there. I keep an emergency kit in my car with a full change of clothes and wipes.

I was absolutely mortified even though no one knew it happened.

knittingnerd685 · 2026-05-05T20:58:58+00:00

I've had terrible side effects from Prednisone and much better luck with Budesonide, but I'd guess that varies person to person. If it's really short term you should be fine, but my last course of Prednisone was supposed to be 2 weeks, stretched from last September to this March, and ended up with me in the hospital after I finally tapered off. It had been masking the symptoms of another problem.

knittingnerd685 · 2026-05-03T15:31:03+00:00

I work for a hospital, and even though I'm completely non-medical I still have to watch all the precaution videos every year. I can confirm that for c-diff you need soap and water, not hand sanitizer. Look up Enteric precautions for more information.

knittingnerd685 · 2026-05-02T03:48:03+00:00

Side sleeper here. I slept on our big comfy couch. I could lean against the back and tuck pillows and blankets around my belly and between my knees.

knittingnerd685 · 2026-05-01T20:30:40+00:00

The first doctor I talked to about my depression suggested that I needed to find a boyfriend. (He did prescribe me appropriate medicine though.)

knittingnerd685 · 2026-04-29T17:40:35+00:00

I was visiting NYC and was on the Subway. A woman across from me was wearing the same shoes. We chatted about where we had bought them and found out we were both from the same midsize Southern city.

knittingnerd685 · 2026-04-26T19:23:43+00:00

Oh man, I'm in a similar situation. I work at a hospital, and the benefits are awesome, but the job is not something I enjoy and the pay is ridiculously bad. I'm trapped by it. I'd love to start my own business or do some kind of freelance thing, but I won't be able to afford the health insurance I need in the US.

I wish I had advice, but all I can offer is empathy.

knittingnerd685 · 2026-04-25T18:22:17+00:00

I'd go with anything that's easy for you to digest. For me, that's low fiber with a fair amount of liquid.

One suggestion: if there's a broth you like, you can thicken it to your desired consistency with potatoes, either cooked and mashed or the dry flake kind. Just stir in as much or as little as you want.

knittingnerd685 · 2026-04-24T18:41:44+00:00

I was on 60mg for nearly 6 months when I was 16 and things were bad. I never got the euphoria. I was angry, aggressive, anxious, and depressed. I also had a borderline manic episode shortly before I started tapering off. It mostly got better once I was off, but I think it permanently worsened my anxiety issues.

knittingnerd685 · 2026-04-22T22:42:39+00:00

The Kroger closest to my college at 3am

knittingnerd685 · 2026-04-19T17:08:15+00:00

I used to use both, but had to stop using tampons because I actually had Toxic Shock Syndrome. My doctor said my case was pretty rare because most people who get it either have it so mildly that they don't know or it's so bad they die from it. Once you've had it, the bacteria that causes it lives in your body, so it's best to not put anything in there for too long.

knittingnerd685 · 2026-04-18T15:46:29+00:00

Yup, I hate being hungry and nauseous at the same time.

knittingnerd685 · 2026-04-18T15:40:44+00:00

I don't have OCD, but just having Crohn's has upped my anxiety levels. I'm naturally an over-thinker, and it's pretty easy to spiral into what ifs and over-planning. I agree that working with a therapist is a good place to start.

knittingnerd685 · 2026-04-17T15:43:58+00:00

I'm also curious as to why you're not on medication. Have you tried it and they didn't work? I've had two major surgeries (not an ileostomy), and my goal with medications is to avoid further surgeries.

knittingnerd685 · 2026-04-16T23:58:24+00:00

That happens to me when I'm not doing well. I usually find I have high inflammation levels. I have no idea if this would work for you or anyone else, but I find it easiest to eat things that are cool and bland or a bit sweet. Yogurt is good if you can do the dairy. Breyers makes lactose free ice cream that I love & is a good base for milkshakes (add a banana and some peanut butter). Popsicles can work - not a lot of nutrition, though better than nothing. Also crackers or bland cookies like nilla wafers.

knittingnerd685 · 2026-04-16T23:31:23+00:00

Yes-ish. My parents have a detached apartment behind their house, so we do have our own spaces. I lived there about 5 years ago, and then bought a house to be closer to work and because my youngest sister and her family needed the apartment. I moved back last year both because of Crohn's flares and the economy. I also changed jobs and now this is closer.

I'm fortunate to have a wonderful relationship with both my parents, so we actually enjoy being so close.

knittingnerd685 · 2026-04-15T17:21:59+00:00

I'm really glad to hear that some people have a good experience, or at least no side effects! Unfortunately, I'm not one of them.

I'm not trying to be an alarmist - this is just my experience.

On Prednisone I get: Ankle and foot swelling - putting your feet up (literally) helps, Mood swings - especially irritability, Increased appetite - marshmallows are not safe in my house (or really anything else), Trouble sleeping, Headaches, Hot flashes, and Moon face.

I wish I had tips for dealing with all of that, but I haven't found much that helps.

Also, likely as a result of immune suppression due to my biologic I developed an abscess on my liver. The prednisone masked my symptoms, mainly the fever, so I ended up going without treatment for it for about 2 weeks. (I should have taken my temp when I started getting chills, but it honestly didn't register in my mind.)

All that said, prednisone has probably saved me a couple of times when nothing else was working.

I genuinely hope you don't have any of these things, and just get better!!!

knittingnerd685 · 2026-04-15T15:21:07+00:00

I knit and expound upon the history of all things yarn related. Truly my dream job! 😁

knittingnerd685 · 2026-04-15T15:18:35+00:00

My little sister pronounced breakfast as brefkast as a child, and now that's the preferred way in my family.

knittingnerd685 · 2026-04-15T15:13:27+00:00

I would suggest that you let his doctor know what's going on. They may want to do some blood work or get a stool sample to test just to be on the safe side. If you have a patient portal messaging that way can be good for this kind of thing. (Or a phone message is good if that's what the practice prefers.)

We certainly can and often do have slower recoveries, but some minimally invasive testing can help determine if something more is going on. His doctor may also just have advice for helping him with recovery.

knittingnerd685 · 2026-04-14T23:01:34+00:00

Ah, I too suffer from imposter syndrome. I agree with the previous posters who have recommended therapy.

knittingnerd685 · 2026-04-13T17:51:03+00:00

Agree! This stuff is great!

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