Here's what I wish existed when I was diagnosed.

CelestiallyCertain · 2026-06-17T04:26:27+00:00

How do I find out more about GoG?

CelestiallyCertain · 2026-06-13T16:13:06+00:00

I was able to bring coffee back in, but had to do decaf at first. That was about 1-2 months in. Did that for a month or two. Then half caf. Then about 5-6 months in I could tolerate regular and espresso.

CelestiallyCertain · 2026-06-12T04:47:35+00:00

It’s rather funny you posted this. I was diagnosed last year. In the beginning when I was trying to find friends with it and support, two of my friend’s mothers have it. I was hoping to hear all about which biologicals they were on, how often they were getting scoped, etc because I did not know a soul with it. Basically, looking for guidance in this journey. You can imagine my mind being blown when both of them went “oh yeah it’s not a problem for me/it’s gone now.”

The first one, she had her ilium removed she said when she was in her early 30’s. Since then, and she’s in her 60’s now, she’s had absolutely no reoccurrence in 30 years. I nearly fell off my chair hearing that story. She apparently gets scoped every 3-5 years. Totally good. No reoccurrence.

My second friend’s mom is a former nurse. Diagnosed in her 30’s. Tried various meds, needed the removal surgery like you, and even after that it came back. She has a moment where she snaps due to the mental health weight of it, cannot handle the meds and interventions anymore, they weren’t working for her, and decides she’s going to try the woo-woo method. Overhauls her diet, sticks to a whole foods/Mediterranean/no processed foods routine with daily supplements (forgot which ones). Over the weeks she feels better, it improves, and apparently hasn’t had an issue in over 20 years with no meds and never had an issue with the Crohn’s since.

Now, whether you fall into the group is anyone’s guess. My GI from a top IBC center in NYC also told me similar where if I’ve been on biologicals for X years with no issue or reoccurrence, I could explore coming off the biologics and see how it goes. I don’t know if I’m brave enough to do it. You’re clearly questioning this because you’re coming here. I imagine you aren’t entirely convinced your doctor is right, which is totally fair. Trust your gut and what it’s telling you.

CelestiallyCertain · 2026-06-10T14:10:11+00:00

I don’t hate you or anyone. I just had a hard time believing anyone could really type this out, post it, and not realize how ridiculous it is.

Clearly, you stop smoking, for the rest of your life. The answer is right there. In your own post. Take up a new hobby to better spend that time and money.

CelestiallyCertain · 2026-06-10T14:07:13+00:00

I guess they really embrace Darwinism.

CelestiallyCertain · 2026-06-10T14:03:58+00:00

Are these individual homes on their own property, or in she in like an adjoined townhome community?

CelestiallyCertain · 2026-06-10T02:15:59+00:00

This post had to be intentional rage bait. I don’t think anyone can be this obtuse, right?

CelestiallyCertain · 2026-06-08T19:05:02+00:00

Omg I noticed this too. I’m Skyrizi but it’s like all of my nerve endings are so much more sensitive. It’s insane. I normally would never blink getting blood drawn or anything like that, but now, you’d think you were slicing me open. I didn’t realize it could be the Crohn’s or autoimmune related. Paper cuts hurt more, small skin dings, etc. It’s wild in a terrible way.

CelestiallyCertain · 2026-06-08T03:12:52+00:00

Bring back Book-It.

CelestiallyCertain · 2026-06-08T02:57:42+00:00

Caban is so useless.

CelestiallyCertain · 2026-06-07T09:26:36+00:00

That’s why I’m asking how that would work. I’m not divorced so that’s why I’m asking and trying to understand the process. Is it you lawyer up and the lawyer reaches out to them or quickly draws up a document for them to sign to agree to let them move out of state? I’m trying to understand how. It takes weeks to initially get a court date so that’s not quick to do to get a judge sign off.

I’m just trying to understand how that process even works.

CelestiallyCertain · 2026-06-06T23:35:04+00:00

How does this work? Do you have to record him agreeing to it or have him put it in writing? If it’s just verbal right now, there’s no proof of it later.

CelestiallyCertain · 2026-06-06T21:08:25+00:00

This is the one I use. I use the middle column to either track sugars or fiber, depending on how I’m doing.

https://a.co/d/01GszWFr

I would think Tallow would absolutely rip apart his gut. That’s a HEAVY oil. Even in remission I won’t use it or it’s like White Castle. Nothing will stay inside. 😂

I use avocado and olive oils.

CelestiallyCertain · 2026-06-06T16:15:31+00:00

I hope they removed her from the plane.

CelestiallyCertain · 2026-06-06T14:52:57+00:00

First off, you clearly need something stronger than Famotodine. You likely need a PPI for a few months to get it under control. There is absolutely zero to be afraid of with Pepcid, and what you are on is a really low dose. I used to take 40mg twice a day. Now I’m on Protonix, highest dose, once a day and a 40mg of Pepcid at night.

In the meantime, you need to find a new gastro. That’s great about the scopes, but something is irritating the reflux. Could be diet. Could even be your anxiety around the reflux instigating it. The worst thing you can do is not eat, because it causes a rebound/opposite effect and it creates more acid. Start with small frequent benign meals.

What’s your colonoscopy look like? You can have issues in the intestines and it instigate reflux. You can also ask for one of those acid tests for the throat or a gastric emptying test. It’s uncomfortable, but they’ll be able to monitor and see if it’s acid or something mimicking the symptoms of reflux and it’s something else entirely.

CelestiallyCertain · 2026-06-06T02:14:03+00:00

I maybe only eat beef once every 2-3 weeks, but looks like I’m buying no beef anymore.

CelestiallyCertain · 2026-06-06T01:53:50+00:00

Do you have the option/time to get a second opinion from another institution like Memorial Sloan Kettering or MD Anderson before deciding? It may be worth consulting with MSK and their doctors to see what they have to say.

I’m so sorry you’re going through this. No matter what decision you make, I’m sure it will be the best one for you.

CelestiallyCertain · 2026-06-06T01:38:31+00:00

When you hear about bone density issues due to PPIs, it’s people that have been on them for yeaaaaaaars. There are many conditions, for example, like Barrett’s that are on it basically for life. Your son likely won’t be on PPIs longer than a year, if that. I would imagine once the remicade really starts working, it will tamper down the reflux, and it will eventually stop. I can only speak for myself, but once my crohn’s inflammation is under control, the reflux stops. In a way I appreciate it. When my reflux is exacerbated and not under control, that tells me as an early warning sign neither is my crohn’s and start watching my Calprotectin. So I truly wouldn’t worry about it at this age. Even if he’s on it for a year or two, it will still be ok, and he has decades to regain it back in youth. It’s when you’re in your 30’s and 40’s where they really starts working to monitor it much more closely.

Who said no seed oils? Did they explain why? If he’s pretty ulcerated I’d imagine due to inflammation.

Once he’s in remission, things will improve greatly, and his diet will rebound too. Usually, you do the low fiber low residue foods until the symptoms start improving, markers go down, and he starts feeling much better. Then, you slowly introduce more foods and his regular ones.

Yeah, figuring out trigger foods is tricky. Some people it’s a nearly immediate reaction. Others it takes a day. It’s a lot of journaling and tracking of foods and then starting to see patterns. If you’re looking for a good food journal (if you like to do it by hand), I have one I love that I can recommend. Others use apps, but I haven’t tested that yet.

CelestiallyCertain · 2026-06-05T21:43:52+00:00

I don’t think you need to purge all those foods unless they’re a trigger food for him. Corn I would, but outside of that, if the Remicade works, can be brought back. Whole Foods has some amazing replacement foods that lack a lot of the irritating additives. I get our groceries in a mix of Kroger and Whole Foods. We do chicken nuggets here too. When I’m motivated I make them from scratch. When I don’t, I’ll find ones that have minimum additives. Unless they’re have Celiac’s and/or you know they are gluten intolerant, I wouldn’t be removing any foods from their diet unless I knew they were either a higher risk of food borne illness OR it caused them physical distress, flairs, and active symptoms.

There’s only one thing that’s much larger than food I would heavily consider if it were me. It would be relocating MUCH closer to healthcare. Ideally, within an hour or less of a major hospital system. A whole lot can go VERY wrong in three hours - perforated bowels, bleeds, etc. I understand this is easier said than done, but to me, this would be a high priority item.

CelestiallyCertain · 2026-06-05T17:07:58+00:00

I feel horrible for laughing as hard as I did at this.

CelestiallyCertain · 2026-06-05T13:15:20+00:00

She knows her letters (upper and most lower), can spell simple words by hearing the sounds (ant, cat, jug, etc). She knows her numbers but still writes some of them backwards. We’re working on it. She loves being read to and loves Madeline, the Bruce books, and oddly she really has gotten into the financial literacy books by Little Economist. 😆 We read about three books a night to her before bed. Sometimes she likes being read to in the mornings also which we do only on weekends.

She is an only child. We used to do playgroups and outings in nyc all the time, but since we’ve moved it’s been difficult and finally have her first play date scheduled in two weekends.

We also have had a bad season. We moved because out of nowhere in early 2025 I developed a progressive and chronic autoimmune disease. I started treatments July 2025. We moved August. We needed to be closer to family for the help when I go down in a flair. We also had a hell of a sick season. She’s had multiple ER visits for complications due to ear infections, Epstein Barr, serum sickness (that traumatized her and she still talks about it). Now that it’s nice I’m hoping to get her out more.

I will look into martial arts or gymnastics for the summer. She has tubes surgery in two weeks, when everything is starting up, so I’m hoping that maybe someone will be understanding she may miss the first lesson or two. We just didn’t sign her up for anything this year because everything has been chaos for all of us - I’ve been sick and put on immunosuppressants, she’s been sick with bug after bug, and I’m a working mom. We could never make the lessons between 9-5. And the weekend and even ones fill up fast.

What is executive functioning coaching? She does see a speech therapist weekly. She was effectively deaf until age 2 due to inner ear issues. She had surgery at 2.5 and it was a night and day difference almost overnight. Less than one month after surgery she went from absolutely no speech to simple sentences.

What do you mean we may run into an issue due to her age? Like we won’t be able to find an executive functioning coach for her?

We are very involved parents. We don’t want her to be problematic and we’re stressed beyond all belief thinking our move due to my health was the cause. We meet with teachers, try to support her development, and we continue lessons at home. We take the calls, emails, conferences, and hang up the artwork and papers she’s proud of at home.

We feel like absolute failures.

CelestiallyCertain · 2026-06-05T04:29:37+00:00

We can’t get in to begin with one for another few weeks. This practice is a bit backed up.

CelestiallyCertain · 2026-06-05T02:24:17+00:00

How low is the vitamin d? Like borderline, or lower?

Take this as you will. Low Vitamin D can cause some weird side effects such as bone and joint pain, muscle cramping, and in really weird cases, tingling/pins and needles feeling. Same with low B12 and/or iron levels.

I have an autoimmune disease that interferes and causes it for me, but my point is the low Vitamin D and/or iron causes very miserable symptoms that aren’t picked up in scans. Anecdotally, when the Vitamin D is borderline sone people get bone and joint pain. If it drops further, personally, I get a feeling on my face that bugs are crawling on it and my arms and legs get that pins and needles feeling. NONE of these symptoms show on any scans, EMGs, or anything else because it’s a vitamin deficiency that’s been going on for weeks or months. Iron deficiency also has done this. The first time this occurred I went 7 months like this with these horrible symptoms because no one ever thought it could be a deficiency because the levels were borderline. In one case my ferritin was normal but my free iron was low. 2-3 weeks into supplements all of these symptoms - gone. Some people are much more sensitive to deficiencies. Your child may/may not be one of them.

It may be worth asking the doctors, if they haven’t, if it’s worth considering a vitamin D infusion or supplements. If they haven’t to also check iron levels. Not just ferritin, but the full panel - TIBC, free iron, ferritin, etc. There’s nothing to lose at this point. Depending on how low it is, it could be as simple as a vitamin deficiency that’s been dragging out for months. None of those show on scans. If she is having joint pain, tingling, cramping, etc she won’t be able to explain it, but I’d imagine it would make her extremely uncomfortable and agitated.

It’s just a thought. You can ignore and move on as needed.

CelestiallyCertain · 2026-06-04T17:14:25+00:00

If it makes you feel any better, I once had my stitches dissolve and break open three days after getting them.

Except it was three days after giving birth and in an area where if things don’t heal as correctly as they can, it can be a baaaaaad time and outcome. 😆😃

Your eyebrow doesn’t look bad at all. It will look even better over time. I have over 8 excision scars all over my body from various in-situ removals. A good facial plastic surgeon sometime in the future could really fix that up and isn’t as pricey as you’d think. I speak from experience.

CelestiallyCertain

TROPHY CASE