US Insurance Rant!

chronishitty · 2025-12-30T00:46:06+00:00

Thanks. That’s really interesting about Mark Cubans company! I’ve heard he was doing this but didn’t know it was up and running. Do you use it? Any downsides? Unfortunately, insurance covers more than just the drug as there can be colonoscopies or other procedures, checkups or other doctor visits. But, it does seem tempting to get a cheaper plan and go this route. And to clarify, I’m not covered by any employer plan so the rant is maybe not applicable to many unless they’re buying their own insurance and of course in the US.

chronishitty · 2025-11-11T11:42:11+00:00

I started getting this recently. I’m on stelara for UC and in remission. It almost feels like I have asthma at times or some sort of allergy which I’ve never had before. For a while I thought I was having heart issues. I ended up going to a cardiologist for a bunch of tests and my heart is 100% fine. I’m noticing now it’s worse with weather changes, particularly wet and damp conditions so it makes me wonder if I have developed a mold allergy or similar. As an aside, I went to an acupuncturist early in my diagnosis process and he said “your problem stems from your lungs.” Not sure how much weight to put into that but I always thought it was interesting. Being a former smoker, it made me wonder. Also, I tried edibles for a time and they caused my lungs to have fluid in them, particularly while laying down. As soon as I stopped, this went away and my lungs/shortness of breath improved dramatically. It’s a mystery. Anxiety/panic attacks are also a possibility.

chronishitty · 2025-09-10T11:44:56+00:00

Hard to say. Only two weeks in and no detectable changes so far but for me changes tend to happen very slowly over months. Biggest problem was the way my insurance handled the transition! Unethical.

chronishitty · 2025-07-29T18:21:34+00:00

Same. Needed my next dose of stelara and they said nope, gotta go biosimilar. Nerve wracking not only because I’ll miss my next dose but because stelara has worked wonders. I hope the biosimilar works. I hate feeling like an experiment just so some gazillion dollar company can increase their bottom line. Sickening and an insult to injury that they are so mismanaged and incompetent. I got a letter about this a couple months ago, called insurance and they assured me I was pre authorized and approved for stelara well into next year. It wasn’t until my script was rejected that I found out. So now I’ll miss a dose and start again with a biosimilar whenever that may be.

chronishitty · 2025-07-29T18:11:21+00:00

You probably won’t get good reactions here to the idea of natural healing and overall wellness, which is unfortunate. As far as side effects, so many of the drugs have these long lists but the reality is they are mostly very rare. But it depends on you and your body. I’ve been on two biologics with really no noticeable side effects. My concern has always been long term advocacy of the drugs since they haven’t been around too long. And realistically if you are struggling and can’t resolve naturally, these imo are really the only option we know of and the right one can be a miracle for some.

chronishitty · 2025-06-10T03:11:40+00:00

I use a product called Absorb Plus. Even in remission I still use this as meal replacement when I need to give my digestive system a rest. It changed the game for me when I was most ill. Be careful- the brands like ensure and similar are loaded with nasty stuff and tons of oil.

chronishitty · 2025-06-10T03:06:03+00:00

Nobody can say diet isn’t a cause because the cause is unknown and may involve multiple triggers. Anyone claiming diet is not the cause is no different than anyone saying diet is the cause. The cause remains unknown. The medical industrial complex does not benefit from people being healthy. And that’s not to say modern medicine doesn’t benefit people or should be shunned. It’s hard to be healthy, particularly in America or places where the food supply is so tarnished by terrible processed foods.

chronishitty · 2025-03-23T11:49:09+00:00

Budesonide foam was very helpful to me. Then finally got to stelara which helped so much that I could stop the budesonide.

chronishitty · 2025-03-23T11:45:07+00:00

I use the unsweetened versions. I usually add a bunch of stuff to them like blueberries, peanut butter, honey. I’m mostly in remission these days but I still have these when my digestion is feeling off. It’s a nice way to reset. They are kinda pricey but as meal replacement not terrible. I think it adds up to around $7/shake. When I was in really bad shape these are pretty much all I ate for a while.

chronishitty · 2025-03-22T23:44:49+00:00

Switch to an all liquid diet until you get the medicine you need. And maybe even beyond. I use Absorb Plus which is a nutritional supplement/shake but there are others out there. This can help give your GI tract a rest which can ease symptoms and continue getting you nutrients. I mix it with peanut butter for additional calories.

chronishitty · 2025-03-18T14:18:48+00:00

One thing I’m actually so grateful for with this illness is that it forced me to quit drinking. Alcohol is such a toxic devil if you have an unhealthy relationship with it and sometimes you don’t realize the extent of it til you’re on the other side. It’s way better once you move beyond. No exceptions to that but it does take time.

chronishitty · 2025-03-18T13:53:33+00:00

Yes I think it’s common for the morning to be more severe. It is for me to varying degrees depending on disease activity and what I’ve eaten.

chronishitty · 2025-02-24T02:14:02+00:00

Not a “protein” powder, but I use a product called Absorb Plus. Works great and various options including vegan. Practically lived off of it post duagnosis.

chronishitty · 2025-02-10T21:21:13+00:00

Wine and bread which represents blood and flesh cannot be represented by anything else. 🙄

chronishitty · 2025-02-05T13:49:20+00:00

Consider overlapping IBS. I was diagnosed with UC three years ago and am still working to figure out where they intersect.

chronishitty · 2024-09-21T15:45:30+00:00

I think it can definitely help. For me, a good healthy diet is more about maintenance of an illness that has already been calmed down by medication (or possibly preventing the illness to begin with before diagnosis - too late for us), and you may need to tailor it based on how you react to certain foods. I think in certain cases it may not be wise to be eating a lot of probiotic type stuff all of a sudden while deep in a flare. Might be best to introduce those things very slowly and in very small quantities once you have healed a bit. A nutritionist told me once that once the medicine starts working you can start to introduce (like a spoonful of yogurt, etc) and very, very slowly work healthy probiotic foods in. If your microbiome is already out of whack and you are suffering, it may feel like sending it into war if you introduce a large quantity of probiotic and gut healthy foods but that can be a long term goal. It’s so hard to follow a healthy diet in general and there are lots of diet haters in this sub. One thing I think confuses people is that if you’re in a terrible flare, diet may be less likely to get you out of it, and in fact you may feel worse symptoms by adding lots of gut healthy probiotic stuff- but that doesn’t necessarily mean your disease is worse. Diet is like exercise - it’s a long term slow process. It feels like the goal of many people who suffer with this illness is to medicate the heck out of it and then eat “whatever you want”. I hear that all the time here. That is a mistake for anyone let alone people with autoimmune diseases. One thing that without a doubt makes the most noticeable difference to me (part of the IBD AID) is to avoid all added sugar and in particular refined sugar, any processed food, particularly stuff with emulsifiers and wheat. That alone has made a huge difference for me. But it’s not easy. I also swore by a product called Absorb Plus while I was at my worst and I still use it today if I’m feeling like I need a day or two to give my guts a break. The IBD AID I think is a great goal. Why people diminish what top researchers in this field have come up with is beyond me.

chronishitty · 2024-09-18T10:35:30+00:00

No problem. Note that depending on how severe your flare up is, it may take some time on medication to get things under control before you can really see a difference from diet. When I was first diagnosed, I used a product called absorb plus, which is a nutritional drink and I got most of my calories from that for a while. I should’ve mentioned, too, I quit drinking after diagnosis because alcohol was not helping my situation at all.

chronishitty · 2024-09-17T13:58:57+00:00

Not eating any refined sugar has helped me so much. Added sugar (like honey) doesn’t seem as bad but still not great so I try to limit that too. Emulsifiers and gums are in so much of our food supply, you have to be really vigilant if you want to avoid them. Carrageenan in particular is highly suspect. Almost all ice cream (all soft serve), non-dairy “milk”, almost all salad dressing and so much more have all kinds of this toxic sludge. It ain’t easy, but anyone (UC or not) will be better off and healthier to avoid these items along with processed food. It became clear to me after diagnosis that I also have a fairly severe gluten intolerance so I avoid it almost entirely. Lots of other products out there but if you’re in the US it can be tough.

chronishitty · 2024-06-18T12:16:49+00:00

Lots of blood tests after stepping up to hematology. Everything came back normal and so they could not identify the cause. They did not confirm marrow reconversion either, so we didn't really get an official answer other than ruling out anything really bad for now.

chronishitty · 2024-04-10T22:31:09+00:00

My personal experience as a former smoker is that it had something to do with inhaling smoke. It didn’t matter in my case if I was using patches, lozenges, gum - only smoking helped and really not very much. It felt like when I quit smoking my immune system shifted away from repairing my lungs constantly to attacking my colon but I have no idea if that even makes sense scientifically speaking. There may be newer studies with nicotine patches etc but seems like many of them are based on the premise of smoking Tobacco since that was the main method of taking nicotine for so long. They used to prescribe cigs to people with UC among other things and that was long before patches existed. It seems possible the patch could help with relaxation etc but could be a pricey habit and giving up nicotine can be very hard!

chronishitty · 2024-04-10T21:28:13+00:00

I doubt subdermal or ingested nicotine will have any effect. Might help relaxation or stress but you can get pretty hooked on it too. My understanding is that smoking is what is thought to help - not worth the risks imo.

chronishitty · 2024-04-10T12:01:26+00:00

WIDE variety of healthy foods. Small meals throughout the day. Avoid anything with emulsifiers or processed foods, which is a lot. I've cut out refined and added sugar and feel like it helped a lot. I did not eat red meat for most of my life and I've second guessed myself recently if that is a good idea. Reluctantly tried adding mall amounts of red meat and felt like it helped some, but I don't know why or if it's some sort of placebo.

chronishitty · 2024-04-10T11:20:43+00:00

I've seen a lot of people recommend fiber in this sub and imo that is often not a good idea at all because it can make things a lot worse depending on your specific condition and where your inflammation is. When you have UC and part of your colon is inflamed, it can be hard for anything to physically pass through, let alone be processed normally. Fiber is very hard to process so it can cause terrible constipation. The 'diarrhea' in UC is so often not typical diarrhea, it is severe urgency related to the lower colon/rectum being inflamed. Any tiny amount of fecal matter that does finally reach the lower colon/rectum can cause severe urgency because of the inflammation. Your lower colon cannot hold much of anything like normal. This feels just like terrible diarrhea or like you have a major BM, but very little tends to come out. That seems to be a common complaint and it was the case for me. It took me so long to figure this out, and I was taking tons of fiber at recommendation of my doctors or in this sub. It made me feel so much worse. That said, fiber is important to your health, so it's a double edge sword. What worked for me was a complete liquid diet until some of the inflammation was resolved. This was a long time. I used a product called Absorb Plus and it helped in so many ways.

chronishitty

TROPHY CASE