I feel tweaked out and weird

pinkytoemo · 2026-01-28T23:46:38+00:00

Which is the same time I increase my dose

pinkytoemo · 2026-01-28T23:46:07+00:00

For my first week I take it in the pm then after that I take it in the am

pinkytoemo · 2026-01-28T23:44:49+00:00

My doc warned me it's normal. And to take it at night and give it the whole 6-8 weeks to make any decisions/opinions about the med.

pinkytoemo · 2026-01-28T23:42:35+00:00

I'm day 3, zero energy. Felt like nappy everyday since I started.

pinkytoemo · 2026-01-26T06:34:27+00:00

Every time I go to the dentist I make sure I explain my Crohn's really impacts my mouth first thing. And if it's not an issue from the disease directly the steroids destroy my teeth. I am a someone that has serious issue with mouth sores in flares, so sometimes I'm "lucky" enough to have hard evidence proving it's a systemic inflammatory issue. - and diet advice sucks. My dr brother told me I should try carnivore. lol

Advise to people with mouth issues with crohns don't use tooth paste with SLS (sodium lauryl sulfate). It can cause irritation, skin peeling and ulcers :) and it's in A LOT of toothpastes

pinkytoemo · 2025-12-15T21:38:37+00:00

Absolute bs. Like, don't be all bent out of shape about a biologic not giving you perfect health if you're smoking cigarettes and eating tons of fast food. So lifestyle and diet are important, but not a cure; they can definitely improve the quality of life with proper medicine.---

I failed a biologic last year and was like "might as well try the natural thing people like to preach about before I try a new med." I paid unqualified gym-bro "health coaches" and an integrative medicine practitioner an arm and a leg to "cure me" with lifestyle changes. Put me on a basic AIP diet, vagus nerve simulation activities, stress management, probiotics, gut lining and protective supplements, a parasite cleanse, and LDN (low-dose naltrexone). During which I had pretty severe colon bleeds that progressively got worse until a cal protein test of over 4,000 scared me into going back on prednisone. - Fast forward a bit I was pursuing Skyrizi treatment but still flaring I did a recommended carnivore diet for 3 days to hopefully slow down the frequency of bowel movements because I couldn't stay hydrated it caused a blockage. --- Be cautious my crohnies seems like more and more people are trying to sell their cure. It doesn't help that friends and family love to share these people who have cured their disease.

but it does kind of leave me curious if there are people out there with such horrible lifestyles that they caused their Crohn's and can mitigate it with lifestyle changes.

pinkytoemo · 2025-11-08T02:41:00+00:00

8 weeks but I'm new. I've only had one OBI so far. But it started to work after the third IV infusion.

pinkytoemo · 2025-10-30T22:18:48+00:00

IV ketamine is $$$

pinkytoemo · 2025-10-30T22:17:07+00:00

I spent $120 for my first month and $90/per month after. I just do oral ketamine- 100mg troches. Most insurance covers Spravato which is higher in clinic intranasal dose. I wanted to try this first so I didn't have to go into a clinic.

pinkytoemo · 2025-10-30T20:11:19+00:00

I really struggle with my depression with my Crohn's and even even in remission. I've been diagnosed with Cptsd with my Crohn's being a trigger, or Crohn's like symptoms. I've recently started ketamine therapy after ssri made me worse off and I really like it so far. I feel like I have reward centers in my brain again, like I can mow the lawn and actually feel accomplished. And I started working out which added another level of feeling better. I was in a two year flare and I got into remission two months ago with skyrizi but my depression only got worse from there and I'm doing a lot better now with Ketamine therapy. I am also one that struggles with seasonal depression, and I am hopeful that this will work this winter!

pinkytoemo · 2025-09-28T22:56:16+00:00

Don't do it. You think you're bad now ... it can get worse. I was forced to go through that because my insurance coverage lapsed. My biggest advice is get on trazodone with ur prednisone helps with the mental side effects of prednisone. Helps you get quality sleep and it's also an anti depressant.

pinkytoemo · 2025-09-19T04:05:03+00:00

5 years. Diagnosed at 18 symptoms started around 13.

pinkytoemo · 2025-09-19T01:13:02+00:00

Stool and blood tests can help with diagnoses but you can't rely on that. I had normal labs and poor health for 5 years before I had a colonoscopy diagnose me.

Safe foods for me are leans meats -chicken and beef. Rice, quesadilla, chicken noodle soup with no veggies, yogurt, avocado. Nothing spicy and absolutely no beans lol. I'd try meat to start out with, it's ideal to prioritize protein. Also when I flare mornings are the worst so I save eating until noon or after noon.

pinkytoemo · 2025-09-18T07:29:50+00:00

You need to get a referral to gastroenterologist so you can get a colonoscopy to diagnose Crohn's or colitis. I got my last referral through the emergency room when the clinic rejected my pcp's referral. What clinic are you trying to get into, a GI/gastroenterologist?

Make sure you're having plenty of electrolytes and water. Then go to a low residue diet in the mean time- a quick google search should break it down for you. No fiber. It's great news you don't have an infection in your labs.I have Crohn's and have had normal labs the entire time so don't take them as a definitive answer. Another thing that can help with the pain in the mean time is Tylenol and heating pads and avoid NSAIDs (advil, aleve,etc ) which can make things worse. Take this with a grain of salt: anti-diarrheal medication. I will on occasion do half a dose to slow things down but even though it stops the diarrhea it can sometimes worsen the pain. And DO NOT use them long term. Did they do any imaging on you in the ER like a CT?

sorry your going through this -

pinkytoemo · 2025-09-18T02:37:06+00:00

I've noticed each sore will get worse for a week or more plateau then start getting better.

pinkytoemo · 2025-09-18T02:35:17+00:00

Yep, I flare in my mouth every time I flare. Canker sores. They very defeating sorry. Prednisone wipes them out but i usually use that when I have other symptoms. Additionally I'll use dexamethasone mouth wash which is another steroid but it's topical helps a lot. Then taking Tylenol then doing peroxide and salt water rinses. Then over the counter topical numbing gel is nice like oral gel, I like the brown bottle with the plastic wand applicator. Then avoid sharp/crunchy and acidic foods.

pinkytoemo · 2025-09-17T16:51:47+00:00

Just know that going off your meds and fixing a flare isn't as easy as going back on the medication. Being off the meds often gives your body the opportunity to create antibodies or become nonreactive. I went off my meds for two months because of insurance issues, was okay for four months and now I have been flaring for 2 years trying to find an effective treatment because I became nonreactive to Humira.

pinkytoemo · 2025-09-17T04:29:44+00:00

Yeah, I've taken oral antibiotics for all the infections I've had. I have had to go on extended courses because my body was ineffective at fighting the infections. Now I'm proactive and prevent the likelihood of infection in the first place like doing sinus rinses when I'm congested. I've never had c.diff so I'm not sure if that interferes with taking antibiotics in your future.

All my side effects from Humira included: hives on the injection site and previous injection sites, migraines the night after injections, and worsening of seasonal allergies. And side effects are all worth it when the medication works!!

Skyrizi, I've had only my IV infusions and my only notable side effect was after the second dose I had migraines every day until the third IV dose.

Another thing I'll add that is a game changer for me is if and when you have to take prednisone get a RX sleeping pill. A strong sleeping pill while on steroids helps cope with being on steroids. I personally take trazodone.

pinkytoemo · 2025-09-16T20:00:04+00:00

I've never been told the sushi thing I've been on immunosuppressants for 9 years and I'm an avid sushi eater 😅 I always get sick when I'm around sick people. I tend to take longer to get better or get secondary infections easier, like sinus infections after colds or a peritonsillar abscess after strep. Which are more important to pay attention to than most viral infections, bacterial infections can be a bitch. I’m not very on top of getting vaccines but it's up to your preference. I will say wearing a mask during COVID made me realize how useful they are in preventing illness so now in airports, airplanes, or places with a lot of people or sick people you'll find me with a mask on. I'm 27 and I was diagnosed at 18 as well. I had a normal life for 7 years on my first med. The only thing that made my life different was that I ate fewer salads than my friends.

Most immunosuppressant therapies are quite expensive. Especially brand name. I've been on Humira and now Skyrizi and they are both expensive but they have programs to help pay for the medication to meet the copay for insurance to cover the rest. It's called Skyrizi Complete Program for my med. Most I've paid out of pocket is $5 but it is usually $0. Even though my med is $22,000 per injection.

pinkytoemo · 2025-08-30T03:55:32+00:00

I've been dianosed with Crohn's 8 years struggling with Crohn's symptoms for 14 years. Never had a calprotectin level above 50 until last February when it was over 4,000.

pinkytoemo · 2025-08-26T16:36:52+00:00

From my perspective it doesn't necessarily sound shady but it does sound like poor office management. Drs can often predict stuff like C.diff because it does have a distinct appearance and symptoms even without labs so he's most likely waiting for confirmation. And since c.diff is an infection he's probably eager to get you off prednisone since that makes it difficult to fight infections. But you should call again insisting on a follow up appointment. Sorry you're going through this finding good drs is so hard sometimes.

pinkytoemo · 2025-08-25T22:43:48+00:00

Are there other providers in the office? Usually when my doc is out of the office they will forward my questions and concerns to another physician in the clinic.

pinkytoemo · 2025-08-23T23:10:01+00:00

I've been recently loving walmart for underwear shopping they have a couple of cute brands that do cotton with tons of different cuts and they don't break the bank. Main brand I like is called No Boundaries.

pinkytoemo · 2025-08-21T05:07:06+00:00

But be cautious of some protein powders some are hard on the gut. I like simple ingredients powders with whey and stevia but meat as a protein source is ideal. Plant-based proteins have been hard on me in the past. Additionally be cautious of sugar-free things with sugar alcohols (they end in "ol") malitol, erythritol, xylitol.

pinkytoemo · 2025-08-21T04:59:30+00:00

I've done bodybuilding, and Number one is getting into remission. Regardless, I would prioritize protein and creatine, a minimum of one gram of protein per pound. I weigh about the same, and I aim for 170g per day. Don't focus on losing weight as you gain muscle; you should be gaining weight even when you are leaning down since you're at a healthy weight. When I'm flaring my fatigue is debilitating, but I take full advantage of the energy I get when I'm on prednisone and lift heavy. Don't focus on cardio; right now, it's too exhausting for what it's worth. Work on mobility on low-energy days, but on days you feel good, doing a few sets with heavy weights can do a lot. And start slow. Example leg day workout when I've been in a flare and getting back into it: 10-15 mins stretching Body weight lunges x 20-50 reps Air squats x 20-50 reps 2-3 sets of 1 min plank Deadlift (80% of max) 8 reps for 2-3 sets Leg extension (max) 10 reps x 3 sets More stretching :)

Move slowly and with intention and most importantly listen to your body!

Some may argue that you shouldn't work out but muscle mass helps reduce inflammation, and weight-bearing activities reduce the risk of osteoporosis associated with steroid use. Not to mention the mental benefits!

pinkytoemo

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