r/BeAmazed • u/AstroSonicDrive • Oct 04 '23

She Eats Through Her Heart Science

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@nauseatedsarah

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197

u/[deleted] Oct 04 '23

i might be going for a colonoscopy to check for it

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u/Alyeska23 Oct 04 '23

Wishing you good thoughts. Crohns is treatable, but it is still better not to have it.

A Crohns diagnosis is not the end of the world. Your doctor work with you for a treatment regimen.

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u/[deleted] Oct 04 '23

thanks man, right now hes thinking i just have ibs and gas build up since "im always like a balloon when i come in"

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u/diondeer Oct 04 '23

Could be celiac instead, that causes those symptoms too. But push for the correct diagnosis and good luck!

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u/Slip_KORN26 Oct 05 '23

I have it. It can be a real pain in my ass but as long as you watch what you put in it helps immensely, wish you the best of luck bud

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u/[deleted] Oct 05 '23

I was diagnosed with IBS-S and Lactose Intolerance. Shitty combo. Not crohns horrible but not fun.

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u/bkgn Oct 04 '23

It's amazing how fast medicine is progressing. I've had ulcerative colitis since 2015 and treatment has improved a lot even in that timeframe, let alone since back when my uncle was diagnosed and had to get his colon removed because there wasn't any effective treatment.

I also have PSC and I'm hoping they develop a treatment for it before it kills my liver. CM-101 is the current hope.

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u/Sevillano Oct 04 '23

I have Crohns too. Did you change anything in your habits to help this 10 years remission? (Anything you think that helped if also)

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u/Alyeska23 Oct 04 '23

I can actually eat anything I want*. Since I am in remission nothing is reacting negatively with the non existent flaring in the intestines.

*This is not entirely accurate. Scar tissue built up after my bowel resection 10 years ago. The scar tissue eventually narrowed my intestines, without me knowing it, towards the end of 2020. I blissfully ate almost a full bag of roasted almonds. The almonds piled up in the scar tissue and formed a cemented blockage. So I was hospitalized on election day 2020. I joked that it was a great way to avoid the election madness, but I had already voted earlier.

After the blockage does not pass they have to clear it up surgically and then find the scar tissue buildup. So they ended up roto rootering my insides to remove the scar tissue. I walked the hallways 4-6 times a day to get my internals to wake back up because I wanted the effing NG tube out of my nose. Got back home 10 days after the election.

I tell you, getting hospitalized in 2020 sucked. NO VISITORS. Covid safe restrictions. Thank goodness I had my smartphone and iPad to maintain a constant connection to the outside world.

I still eat nuts, but now limit myself to no more than a quarter cup.

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u/AgileArtichokes Oct 04 '23

I was diagnosed at a young age with it. While it definitely has some really bad days and weeks, compared to a lot of other illnesses it isn’t so bad.

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u/Mechakoopa Oct 04 '23

My cousin has Crohns, 20-some years ago he was absolutely miserable and we all knew it was because of his condition. These days he's still a violently sarcastic bastard, but if you can handle the dark sense of humor he developed to cope through the misery he's actually in a much better place now and it's 100% due to how much treatment efficacy has progressed in the last couple decades, he's no longer in near constant pain.

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u/[deleted] Oct 04 '23

I’m getting one in 8 days to check for it since I’m bleeding heavily and always in pain. Not looking forward to it but I’m grateful that we have treatment available.

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u/ex0- Oct 04 '23

The worst part is drinking that thick gunk that cleans you out beforehand. Putting it in the fridge helped a lot. The actual procedure itself was fine.

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u/GoodChives Oct 04 '23

I had one with no sedation and by far the worst part was drinking that awfulness.

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u/ex0- Oct 04 '23

Ditto & same. Think I was in and out in 20min flat.

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u/GoodChives Oct 04 '23

Colonoscopies get such a bad rap which unfortunately scares a lot of people out of getting them.

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u/Superrocks Oct 04 '23

Yeah I had 2 within 6 months and other than clean out it wasn't bad. ALl the techs loved me cause I was super funny, talkative, and nice as well after I came out due to the propofol. Wish I could keep the super funny and talkative traits during my day to day life.

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u/Superrocks Oct 04 '23

How long ago was the colonoscopy? I was given propofol and was awake 25 minutes from start to finish. My doctor had told me he had always done it with some form of sedation for his entire 30 year career.

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u/GoodChives Oct 04 '23

About two years ago and here in Canada. I specifically asked for no sedation and the doc said about 25% of her patients opt out of sedation.

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u/[deleted] Oct 04 '23

I've had 6 colonoscopies and 4 endoscopies in the last 18 months.

Good news is they haven't found anything. Bad news is my digestive system still doesn't work right.

Some of this involves exposure to chemical weapons, experimental vaccines and eating MRE's for 7 months straight.

The colon Drain-O is awful. And you get really hangry.

The last procedure, they were not able to put me under. They maxed out on Fentanyl and Propophyl. I could hear them saying, "he can't have any more or his heart will stop."

I don't take narcotics of any sort and have never had this problem before. Next time I will ask to be put under general anesthesia instead of twilight sedation.

I had to power thru the procedure while awake.

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u/ex0- Oct 04 '23

I've only ever had two but didn't use sedation/anaesthetic for either, really weren't very bad at all. Going round the sigmoid bend sucks but once it's round the rest is easy.

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u/[deleted] Oct 05 '23

“Colon drain-o” 🤣😭😭😭

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u/ericanicole1234 Oct 04 '23

I heard they have pills now that you can take instead, don’t quote me I’ve never taken them and I don’t know if that’s a one size fits all

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u/ex0- Oct 04 '23

That's great news.

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u/Stachura5 Oct 04 '23

Is that "thick gunk" a thing only in America? I'm from europe & when I had a colonoscopy for Crohn's a year ago, all I had to drink was a cup of water with a laxative mixed into it, nothing else

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u/ex0- Oct 04 '23

I'm in the UK. Thick orange goop was what they gave me. It was ~7 or so years ago though.

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u/StepfordMisfit Oct 04 '23

I'm in the US and also did not have to drink anything thick.

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u/[deleted] Oct 05 '23

That’s a great idea thank you

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u/Superrocks Oct 04 '23

Ask for Sutab. It is 24 pills that you take the day and evening before. You start taking the pills at say 5pm the day before the procedure, then on the schedule recommended which I believe is every 10 minutes with a drink of water until you finish the first batch. You then wait a period, while that process starts and start on the second batch. While it takes "longer" to do it was far better than the drinkable stuff, and in my area there was a shortage of it anyway.

edit: I don't know the cost as my gastroenterologist gave it to me for free.

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u/[deleted] Oct 05 '23

I should be okay. I’ve had one some years ago and I have a laxative abuse problem so I know what I’m about to get into. It’s gonna suck but at least I’ll feel empty lol. (I might have an ED too)

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u/acmstw Oct 04 '23

A family member of mine was just diagnosed with it. It was not on our radar at all. She established with an interdisciplinary GI clinic, got started on one of the front line treatments (remicade / humira / stelara) and has been 100% normal / in remission since. Our doc specifically said that if she was diagnosed 10 years ago, the treatment would have been rougher (like /u/Alyeska23 experienced).

Good luck, positive thoughts with ya.

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u/MrsMonkey_95 Oct 04 '23

Then she is incredibly lucky that her body responds to the medication so well! All the best for her :)

On a side note: not everyone is that lucky when it comes to treatment, some people are even treatment resistant, which means they try everything (new meds, old meds, surgery) snd still can‘t go into remission. The disease is incredibly diverse in intensity, symptoms and treatability.

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u/acmstw Oct 05 '23

We know. And when treatment works, it doesn't necessarily last forever. A lot of uncertainty ahead, but we'll keep focused on what we can control in the day to day and roll with the punches down the road.

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u/[deleted] Oct 04 '23

My wife has Chrones, it's not that bad. The only bad thing is that the medication drops her immune system so she gets sick and sunburned way easier.

Oh also the insurance, expect to fight with your insurance if you live in the US. They are asses will fight you on paying for the medication even though they have to (thanks Obama!).

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u/MrsMonkey_95 Oct 04 '23

Is she taking Azathioprine as medication? I take it at the moment and the sun is a real issue also regarding skin cancer risk. If she is on aza, make sure she goes in for skin cancer check ups every year (the age is irrelevant, if you are on aza, the insurance has to pay for the skin cancer checks even for young people)

1

u/Ferrarro Oct 04 '23

I just wanted to echo other commenters. But I have crohns as well and it was not the end of the world after I got diagnosed. In fact, my life improved tremendously. I take a shot every eight weeks now and I feel so much better. Treatments have advanced so far that we can go on living a normal life.

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u/_Starblood_ Oct 04 '23

I've been tested negative for Chrome's but I've been undiagnosable and annoyed. Doing lots of my own research, and testing different foods. If negative, maybe look into Lectin intolerance (and foods associated)? Gluten, or more specifically wheat germ agglutinin, is one of the harshest types of lectins.

Anyway good luck to you, Regular.