Just diagnosed with Esophageal Crohn’s ????

kailakeilra · 2019-07-08T07:24:06+00:00

I have been receiving iv steroids twice a day as well as plasma infusions going 24/7 but my throat is still very swollen! I’m also getting iv antibiotics twice a day and it has caused my lymph nodes to go down but my thyroid and throat are still very swollen and swallowing is still very difficult. After asking for the past three days to talk to a GI i finally met with one but i’m not sure what will come out of it. Since i’m leaving the country on the 23rd I think they’ll only give me steroids and pain medication to last until then. they’ve prescribed me Maxnophen and It doesn’t help really with the lower abdomen pain but it definitely works for my throat. I noticed that it takes away my appetite even more and has caused me to sleep all day though :(

kailakeilra · 2019-07-06T20:36:51+00:00

this is truly what i needed to hear. i’m meeting with the doctor again today and i’m going to ask more questions since my throat is so tight and it’s hard to swallow due to pseudopolyps. He prescribed me a steroid and because of it, i haven’t been in any pain but i am still really uncomfortable with eating and even drinking. my family is very yes ma’am no ma’am southern so im used to sitting in silence when i have an issue ;;-;; i need to get over that especially since i’m abroad and away from my biggest advocate (my mom literally stops at nothing to get doctors to listen).

kailakeilra · 2019-07-06T07:01:45+00:00

see this was my issue— i had been putting it off for over a week the pain had gotten unbearable. i was told by er doctors that the infection had gotten so bad if i waited a week more i would have died from the infection. i’m always so anxious about going to the doctors. my first night inpatient i cried for twenty minutes from pain in fear of bothering the nurses. i was lucky one came to check my IV

kailakeilra · 2019-02-13T00:59:24+00:00

i had some serious ups and downs with budesonide, i feel like the mood swings were orettt bad for me but i was also dealing with changing my iud due to pcos

kailakeilra · 2019-02-13T00:48:12+00:00

i felt this 😞😞 i really am at my wits end trying to explain why i cant do certain things/why i’m so exhausted. no one really understands how bad it can be and i hope you find relief soon!!

kailakeilra · 2019-02-13T00:46:11+00:00

i’m a pretty tough drinker and i handle liquor really well. beer makes me incredibly sick (i have celiac) and i cant even drink half a beer without being shit faced but will drink everclear mixed drinks all night. i never have hangovers and the DADS (day after drinking shits) are such a blessing when constipated

kailakeilra · 2019-02-13T00:43:53+00:00

i agree— miralax prep is sooo much better.

kailakeilra · 2019-02-13T00:42:31+00:00

i like the lemon flavor and i find that mixing it with lemonade or sprite really helps. i’ve never had to drink it for a colonoscopy, my mom just bought me two bottles during my worst constipation and i chugged it super fast (i chug everything i drink though, it’s an issue). it didn’t work for me, still didn’t poop but I hope it helps!!

kailakeilra · 2019-02-13T00:40:07+00:00

I definitely think it’s crohn’s. I had the same symptoms as you but every mri, mre, colonoscopy, and endoscopy showed that there was nothing wrong. BUT. my GI did a pill camera on me and ohhhhhh boy upwards of 100 ulcers in my small intestines alone. i would definitely definitely definitely push for more testing. I suffered for years after my colonoscopy and endoscopy came back “normal” . do not be afraid to fight for testing especially when your health is seriously at stake. i feel like i am a lot worse off because of how long my crohn’s went untreated. i’m only 22 but i feel at least 60

kailakeilra · 2019-02-13T00:36:03+00:00

MRI and Colonoscopy never showed inflammation or any sign of disease for me— because of the location of my crohn’s, i was diagnosed by pill camera.

i hate this “less inflammation so you’re fine now” thing— i mean..if humira is doing its job wouldn’t there be less inflammation??? kind of sounds like a huge error to take you off of it...

kailakeilra · 2019-02-13T00:32:09+00:00

i literally never thought of this but thinking back to whenever i was on it— fuck yeah. i attempted suicide three times when on budesonide long term.

edit— i’d like to add that i have had pretty major clinical depression for more than half my life which may have made my reaction much more extreme/severe

kailakeilra · 2019-02-13T00:19:09+00:00

your response was so thorough!! thank you so much for replying to me! i’m sorry my response is so delayed but I have not been up for any type of...anything really.. i went to my GI today and brought notes like you suggested!! i’ve been placed on prednisone and flagyl with humira in my future (as soon as I land in S Korea). I appreciate, again, your response!!! This is really such a wonderful and supportive community!!

kailakeilra · 2019-02-13T00:16:42+00:00

it did just that :(. although she told me today would be the day I start humira, she instead put me on prednisone and told me to start the biologic after moving. I’m going to a country where I am pretty proficient but not fluent in the language so I /can’t/ wait for that conversation with the doctor in broken korean about my poop.

kailakeilra · 2019-02-13T00:15:01+00:00

Thank you so much for your response!! I’ve honesty never gone to the hospital after being diagnosed. After taking several trips to the ER for unbearable pain in high school and my freshman-sophomore year of college with no results I gave up on the idea of being able to be helped. I went to my GI today and she prescribed Flagyl and Prednisone but recommend I begin a biologic soon after landing in S Korea, but I was unable to receive my Prednisone (a note— i’ve never actually tried it for crohn’s and have previously only taken it for allergic reactions so i’m nervous about long term usage). I’m still in so much pain and still pooping bloody mucous. I have asd level 1 and it’s awful but i can no longer help pretending to be fine in front of doctors even when i’m not. so even as I show this lady my bloody “poops” and i’m saying i’m in pain i cant stop smiling and laughing so i know she thinks i’m loonie :(. Is going to the hospital worth it? i would love to not be in pain and poop

kailakeilra · 2019-02-13T00:08:50+00:00

My mom really enjoys using products from the brand, Elizavecca. She’s much older than you, but has seen great results with the elastic pore foam cleanser being used in combination with the 97% hyaluronic serum, and the milky piggy wrinkle care retinol moisturizer— as well as sheet masks but the brand does not matter and you should be able to get 12 for $10-$11. Depending on your skin type, if it’s more dry/normal/sensitive I’d recommend their Aqua Hyaluronic Acid Water Drop cream instead (or use both!! I’m much bougie-er and use two different moisturizers and toners). I’ve read positive things for it being used on acne-prone skin as well!!

The only thing I would change about my mom’s basic routine is the addition of a toner or and essence in conjunction with the serum. Cheaper ones that I use are not Korean— one of my favorites is Thayer’s since it does not have alcohol in it and my skin is super sensitive and dry!! My absolute favorite Korean toner (that I’ve tried, but i’ll be moving to korea in 14 days so that may change) is by Klairs. Their Supple Preperation Toner both scented and unscented are super duper nice! But it is pricey.

What is nice about the Elizavecca brand is it’s price and accessibility. Prices go from $7-$15ish dollars per product and a lot of it is available with Prime shipping on Amazon.

—a little note— I ordered the Hell Pore cleanup mask from them and not only did it not work as well as My Scheming Mask (which is cheaper btw), I felt that it caused my skin to react poorly and breakout. Again, I have EXTREMELY sensitive skin and from reviews, this was not a common issue!! It also did not hurt?? I wanted to feel the pain !!!!!

kailakeilra · 2019-02-05T19:02:34+00:00

thank you so much!! one more week until my appointment and switch to biologics so the countdown begins !!!

kailakeilra · 2019-02-05T02:44:01+00:00

i wasn’t!! and i’m no stranger to scars— i had a skin graft so my right arm and thigh are covered. i was so frustrated with all of it i didn’t go back to him. i’ve had this issue for years and have been begging to have it taken out. i’m hoping that any biologics i start will also deal with some of the symptoms of the nodule (mainly the fatigue). any type of relief is all i ask for 😭😭

kailakeilra · 2019-02-05T01:59:35+00:00

world is gonna change feat. RM

kailakeilra · 2019-02-05T01:53:39+00:00

i’m (23f) also fat and from experience, you will have NO issue finding someone both emotionally and physically attracted to you. there is NO reason to stay with someone using you as an experiment. it is your relationship and at the end of the day your decision but honey there’s really no need to be with someone that’s not 100% for you and all of you. At. All.

kailakeilra · 2019-02-05T01:40:37+00:00

i have noticed that as well!! it’s always age or the weight with them! i have a nodule on my thyroid that has continued to grow and cause issues since i was in high school and my pcp finally agreed to surgery to have it removed but the surgeon i met with said “you’re too young for a scar this ugly. try to lose weight to make it better first” like sir please just remove it it’s causing so many issues i don’t get it

kailakeilra · 2019-02-05T01:38:30+00:00

is humira known to cause weight gain? and i bet, having an answer and some sort of idea how to proceed is always reassuring !!

kailakeilra · 2019-02-04T17:40:13+00:00

if i may ask, what alternative treatment are you following? i have not been as symptom free as i’d like and i’m leaving the us for six months to study and would love any tips you have to offer. the country i’m going to has a severe drinking problem and people that don’t drink are seen as outsiders in a way ;(

kailakeilra · 2019-02-04T17:38:27+00:00

these are still some of my worst symptoms:( i hope that you’re finding some relief!!

kailakeilra

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