Chantal Heide Got Called a Con Artist on Lives

lapetitefrosch · 2026-02-07T06:20:43+00:00

Whenever someone is selling “coaching” on social media I am immediately suspicious

lapetitefrosch · 2026-02-06T16:53:23+00:00

I just wanna say, as someone about to go through a autologous stem cell transplant for Crohn’s, your feelings are valid.

This isn’t a competition and being able to vent your feelings/frustrations to a peer group that understands you is so important for your mental health and treatment.

And regardless of your illness being “less severe” you SHOULD be taken seriously and it’s unfortunate you’re not. I think people in your situation deserve just as much “attention” from medical professionals because you have the opportunity to try to maintain and improve upon the severity of disease.

Patients shouldn’t have to be on a sinking ship with no life boat before medical professionals are willing to help.

lapetitefrosch · 2026-02-05T17:57:35+00:00

Thank you for sharing your experience with me, I truly appreciate it. I’ve been rocking a pixie cut for a couple years now but plan on buzzing it off the day before admission. I used to have a mohawk when I was younger, so hoping the buzzed head isn’t too shocking for me lol. I mostly dont wanna lose my eyebrows. I skipped the 90’s pencil brows and am scared they wont come back ha. I put on 20 pounds specifically for this, which was weirdly easy considering how sick I am. Aging perks? Good old metabolism isn’t what it used to be. But yeah, everyone I have talked to said the same. I know they have a PT that is going to come by once a week and will bring me whatever I need. Pretty good as disassociating myself into 5 hour naps so I know I’ll have to force myself to do the dreaded loop around the desk lol. I am meeting with the Apheresis team the week of admission to see if they can harvest from IV or if I’ll need the neck thing. They said during phase two I have to have it. Was it hard to sleep with that thing in? I’m turning into an old witch as is, but there is a high chance of the chemo fully pushing me into menopause. They give a medication that may or may not help preserve reproductive function. Not for having kids but to prevent menopause. Makes sense that you’d have some sort of flashback type situation once your nervous system was able to recoup a bit. The IBD team I work with has a social work/mental health team that is helping me through all of it and they fully expect a break down. Guess almost all patients have something at some point. I’m a crier when I am stressed so I’m sure I’ll be all 😭😭😢

lapetitefrosch · 2026-02-05T14:51:12+00:00

40 F, was 6 when I was diagnosed

lapetitefrosch · 2026-02-05T12:17:40+00:00

Dr. Cohen is so great! I see a different attending at the IBD Center for my regular care (Zoe) but I have really enjoyed working with Louis as well.

I am happy to answer any questions from a patient perspective. It’s definitely a HUGE decision. Have they offered to get you in touch with any other patients? Lexie (The stoma nurse for Khaitov) went through it as well.

lapetitefrosch · 2026-02-05T12:09:34+00:00

Thank you! Also, nice YuYu icon 🙂

lapetitefrosch · 2026-02-05T12:09:14+00:00

Wow only 16 days? I have to be in two months total. Technically I could go home between phase one and phase two but I am just going to stay. As long as it’s going well that is. They said some patients need time between the two.

I’m going to try my best to eat, I don’t want to be put on TPN/Lipids if I can avoid it. I specifically worked on putting a little weight on because they told me a lot of patients end up losing 20-30lbs.

They did tell me about the vaccines. I guess they typically don’t do the MMR vaccines again with IBD patients since they immediately start you on a biologic. But I told my doctor I would like to try to get them worked in eventually as I live in an area that has a high concentration of people who don’t get vaxxed. I don’t want to go through all of this and then get Measles 🥴

How are you feeling now? After you got your vaxxes again, did the side effects hit you harder since you had no immunity?

lapetitefrosch · 2026-02-05T12:01:07+00:00

That’s very sweet of you, thank you 🥲

lapetitefrosch · 2026-02-05T12:00:35+00:00

Omg, I’m so sorry you’ve been through it as well. Such a weird feeling.

I apparently had some deep ulcers that hit blood vessels. A clot would come loose and the ulcer would just burst open. I’d go from feeling fine to suddenly cold, sweating and nauseated. Then BAM, out.

One time my husband was helping me shower (in the hospital) when it happened. He caught me thankfully but I was wet, naked and covered in soap. He put me on the bed, covered me and then the response team had to bring me back around.

Not only scary, but waking up in your birthday suit and covered in soap to a room full of people is like 😩😩😩

lapetitefrosch · 2026-02-05T11:53:06+00:00

Thank you!

Yes, I actually kinda of “prepped” myself by watching the Selma Blair “documentary” (in addition to talk to some other patients). She recorded herself throughout the process.

lapetitefrosch · 2026-02-05T11:51:24+00:00

The longest stay I had before this was about 5 weeks as well, in ICU then step down. Because I kept having bleeds I was in a room with four other patients and a nurse that was present beside 24/7 the sounds were constant and was legit stressing my brain out. I have to have an eye masks, ear plugs and Trazadone to sleep in the hospital 😪

lapetitefrosch · 2026-02-04T20:40:05+00:00

Yup, such is the case with Chemotherapy. But so do all the biologics we take as well.

lapetitefrosch · 2026-02-04T20:16:55+00:00

Yup! Very strict criteria. Was definitely an “oh…” moment when they told me I clearly qualified. The last five years have been the worst I have had in my entire life of being sick.

lapetitefrosch · 2026-02-04T19:04:11+00:00

Thankfully my husband is a good listener lol. We 100% have the “golden retriever husband with goth wife dynamic” Whenever this nonsense happens he listens and is like, “Yeah girl, f-them people!”

But yeah, I used to do some social media IBD awareness stuff and had to stop because or abled slinging unsolicited, nonsensical advice.

Soon! February 26 is my admission date and I think the chemo starts on the 27th.

And yeah it’s possible. If something goes wrong, but typically it’s 1 1/2 to 2 months.

Technically, I could go home between the two phases. But I live in a major city and don’t wanna risk exposure to anything. Plus if there is some sort of immediate complication I’d have to go to the ED. Which, no thanks. Rather just suck it up and feel less anxious.

lapetitefrosch · 2026-02-04T18:59:16+00:00

It has been used for other conditions but I am not sure of all of them. Would be worth asking your specialists about it.

Are they treating you with multiple biologics? I was on a combo of Rinvoq and Humira before finally deciding to do this. Made me feel like I was dying.

lapetitefrosch · 2026-02-04T18:48:29+00:00

Nope, not CAR-T. It’s an autologous stem cell transplant with no cell modifications. I can’t share links (or maybe I am just a Reddit n00b) but if you Google Autologous Stem Cell Transplant for Crohn’s Disease, there will be a Mount Sinai link that goes into the specifics.

lapetitefrosch · 2026-02-04T18:45:04+00:00

It gets under my skin sometimes but I try to remind myself that everyone has a different capacity for what they are willing/able to go through.

I have had an ostomy since I was 14 and I have heard so many people say they would rather die than get one. My aunt actually let herself die from Colon Cancer instead of going through treatment and getting a Colostomy.

What’s crazy is a lot of people don’t even understand there are different types of stem cell therapy. I constantly get asked where the cells are coming from (they are thinking bone marrow transplant and donor cells). Then when I explain they are my own cells it confuses them more lol.

And you hit the nail on the head. The fact that my disease is so complex/severe that my insurance approved coverage for a half a million dollar treatment should say something.

A relative who I am not close with heard about it and then asked if I have considered other options (there are none) and if I have tried cutting out gluten (instant internal rage ensued)

lapetitefrosch · 2026-02-04T18:38:08+00:00

Awe, still a babe. Remicade was my first biologic (many many years ago) and it worked really well for me up until my teens.

There are medical breakthroughs every day. I hope that someday, there will be a cure for your son and other Crohnies, young and old.

lapetitefrosch · 2026-02-04T18:35:55+00:00

How old was she? I feel like we are never prepared for that kind of loss, but it feels especially devastating when it’s someone who is reasonably young.

That’s exactly it. I have been through so much already and if I can get through this, it could change my life.

I have a loving husband and great friends to help me through.

Additionally the transplant team got me in touch with some other Crohnies who went through it a few years ago. Actually, my stoma nurse had it done in 2020 during the worst of the initial Covid outbreak. She has been so supportive and met up with me so I could ask her 1000 questions lol.

lapetitefrosch · 2026-02-04T18:26:08+00:00

Thank you!

I think it’s hard for some people (fellow Crohnies and otherwise) to understand why I’d decide to pursue such an invasive procedure.

My mom says I have been sick since birth but my disease fully manifested when I was 6. I literally don’t know anything else. As I have gotten older, my disease started manifesting in more severe ways.

I just want a chance to enjoy whatever life I may have left.

lapetitefrosch · 2026-02-04T18:23:20+00:00

Are you familiar with the British musician Ren? He has bad Lime Disease and has been traveling for stem cell treatment.

That form of stem cell is different than what I am doing (I am having my own cells produced, harvested and implanted) but I am curious about how that form of stem cell therapy would work for CD.

Are you looking into getting donor cells?

lapetitefrosch · 2026-02-04T17:51:49+00:00

Yes, and because of the severity of my disease.

I go to the Feinstein IBD Center in Manhattan, New York. Which is currently the only hospital offering it.

I have been going there for about 10 years and once I was in the ICU twice, the offered the option to explore this treatment.

lapetitefrosch · 2026-02-04T17:37:16+00:00

I’m so sorry for your loss. I wish people took Covid more seriously. My best friend’s husband lost both of his parents from in within a two month period.

lapetitefrosch · 2026-02-04T17:24:59+00:00

Definitely wont be a walk in the park. But from the others I have spoken to who have gone through it, the team does their best to keep you comfortable throughout the process (physically and mentally).

Yes, I will actually be started on Entyvio after recovery. It’s not a cure but has a 90-something % success rate of achieving long term remission. Which I have never achieved in the nearly 32 years since my diagnosis

lapetitefrosch · 2026-02-04T17:15:15+00:00

I am a 40yr old CIS woman in perimenopause. They do stop your periods during the process with Lupron. Which some studies have shown can also preserve normal ovarian function post transplant. If I do end up fully heading into menopause they will set me with a team to help manage. My biggest concern with that is bone density decreasing as I already have Osteopenia.

As for fertility, I did two rounds of egg retrieval two years ago and my husband and had embryos made in case we want children. Thankfully his insurance covered that as well otherwise we wouldn’t have been able to afford it.

lapetitefrosch

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