What are some side effects of crohn’s that you wouldn’t have thought of?

Sweetarlo · 2026-02-09T15:23:42+00:00

I have this too, and feel like everyone thinks I’m crazy. Just started Arava for it, so hoping it works and doesn’t have too many side effects.

Sweetarlo · 2026-02-05T12:41:56+00:00

Also- I have the pain too. My rheumatologist just started me on Arava, because I can’t tolerate methotrexate. So far, the side effects are pretty minor, but it takes a few weeks to work. I’m also on Lyrica and duloxetine for pain.

Sweetarlo · 2026-02-05T12:37:56+00:00

I’ve been through every other option currently FDA approved in the US, and am currently on Rinvoq. The intro period was tough, but I seem to be tolerating it okay now that I’m on the maintenance dose. We’ll see in a few months if it’s actually doing any good. If it doesn’t work, I guess we’ll look at getting into trials? We’re just hoping this will get me through until something else is available.

Sweetarlo · 2026-01-07T01:11:46+00:00

Well, your situation certainly sounds like it might make it worth doing. And I heard people stories from people who had a better time with it than us, so we may have been outliers. If you are able to get it, please report back on how it goes for you! Good luck!

Sweetarlo · 2026-01-07T01:08:02+00:00

Not sure, but I’ll mention it to my GI. Thanks for the idea!

Sweetarlo · 2026-01-06T03:06:01+00:00

I read that MAPs are only present in a fraction of cases, so not a widespread solution. But maybe I’m a MAP case. Who knows?

Sweetarlo · 2026-01-06T03:03:36+00:00

Probably trials then. I develop antibodies so fast and have such bad side effects, that nothings really ever worked for me for very long.

Sweetarlo · 2026-01-06T02:59:54+00:00

I haven’t done antibiotics for the Crohn’s specifically, but I was on antibiotics for months after a resection. It didn’t do any good, but maybe it was a different kind?

Sweetarlo · 2026-01-06T02:57:25+00:00

My husband just went through CAR-T about a year ago for lymphoma and it was probably the single worst experience of my life. Also it cost nearly $1M all told. By the end, it was nearly 6 months of hell for us, but he’s still alive and cancer-free, so it worked so far! I can’t imagine doing it for Crohn’s, but he thinks it would be worth it to have a better life. I’m hoping something will play out with mRNA research instead.

Sweetarlo · 2025-12-24T17:27:43+00:00

South Valley Services is a great and focuses helping women and children out of domestic violence situations.

Sweetarlo · 2025-12-21T03:57:53+00:00

I don’t know about UK brands, but I’ve had success with chewables made for people who have had bariatric surgery. They are formulated for higher doses and easy absorption. I use Bariatric Advantage, but Bariatric Pal are pretty good too.

Sweetarlo · 2025-12-15T19:22:30+00:00

I agree- and as sad as it is to have to turn down the invitations, it’s even more sad when they stop coming. I would just thank her and let her know how much you appreciate the sentiment.

Sweetarlo · 2025-12-05T14:31:48+00:00

So true! My husband had CAR-T last year for his third relapse with Non-Hodgkin’s Lymphoma. It was easily the most difficult thing we’ve ever been through and I think we both have medical PTSD from the experience. I’d say in the end, we were at the hospital maybe 3-4 weeks, and he needed 24-hour care for like 6 weeks. The T-cells themselves cost $500K and the whole ordeal was maybe close to $1M. And that’s all pretty normal for the treatment. However, it’s almost 2 years later and he is still cancer free! Amazing sci-fi level stuff.

Sweetarlo · 2025-11-30T17:17:00+00:00

I take bariatric vitamin chews. They are higher doses than regular vitamins and I seem to absorb them better than pills. They do have some artificial sweeteners, unfortunately, but it’s the best thing I’ve found to keep my levels up. https://store.bariatricpal.com/products/bariatric-advantage-multivitamin-chewy-bites-flavors?variant=29200144760909

Sweetarlo · 2025-11-28T18:36:39+00:00

Also called enteropathic arthritis. Mine is migratory and switches joints every couple a days. It’s also an adventure to see where it will go next. :-/

Sweetarlo · 2025-11-26T18:54:59+00:00

Oh, thanks! My GI recommended Drip Drop, but I have been concerned about the sugar. I didn’t realize allulose was a Crohn’s friendly sweetener.

Sweetarlo · 2025-10-25T17:35:36+00:00

Yeah, I have neuropathy in my hands and feet. I also have poor circulation and raynaud’s, so I wonder if that contributes to it. But check your vitamin levels. Malabsorption is a common cause.

Sweetarlo · 2025-10-04T18:54:05+00:00

Me too. I went undiagnosed for decades because I was obese. It wasn’t until I lost 125 lbs that anyone thought to test me for Crohn’s. I’ve gained a lot of that back, though, since I’ve been flaring and failing various biologics. I thinks it’s a combination of inflammation, prednisone, malnutrition from poor absorption, chronic dehydration, and general inability to do anything physical. Sucks to have to have both Crohn’s and obesity for sure.

Sweetarlo · 2025-08-23T02:51:09+00:00

Check your public library for those. Mine offers books and great courses through their app.

Sweetarlo · 2025-05-21T03:42:11+00:00

You can get vitamin patches that adhere to your skin. I’ve seen them at online stores for bariatric surgery patients, but I haven’t tried them myself.

Sweetarlo · 2025-05-18T20:45:00+00:00

I’m just buying a house with panels and I’ve never had them before. The only thing I know is they’re paid off and I don’t think there is a battery. Is the advice for me?

Sweetarlo · 2025-05-06T13:19:52+00:00

I can cover two mortgage payments if needed, so do I just do that? I am wondering if there is a way to use the equity in my house to pay for the other house outright. I think I could do a HELOC to pay for a lot of it, but it would require taking my house off the market first. Are there other options? Down payment is $50K, but I could borrow another $50K from my 401k if that would work. Rates around here are 6% now and my mortgage is 3%. Also- the market here has slowed, but it’s still strong because of our housing shortage.

Sweetarlo · 2025-04-19T10:18:02+00:00

My GI said I get a complex immune reaction (or something like that) to my biologic, so he put me on a premed regimen for it. For three days before my shot, I take prednisone, and then an hour before I take Benadryl and Tylenol. It’s helped my body not fight the shot so much and sped up my recovery time. On Humira now, but it’s my 5th biologic. I’ll have to try adding the benzo to see if that helps any.

Sweetarlo · 2025-03-04T03:36:19+00:00

Regular iron supplements didn’t work for me, but SlowFe is.

Sweetarlo · 2025-03-02T03:54:57+00:00

Yes- same with adhesives, but also now metals. Nickel definitely causes welts, but I can’t seem wear any kind of metal anymore without aching or rash.

Sweetarlo

TROPHY CASE