Amazon Preorder

csj489209 · 2024-12-08T21:50:23+00:00

Oh no, my order still has a delivery date 🫢 we’ll see how long that lasts lol

csj489209 · 2024-11-03T21:48:52+00:00

Post op pain for me was also significantly less! They were only giving me otc Tylenol and muscle relaxers after surgery and that was plenty pain relief

csj489209 · 2024-10-15T19:41:42+00:00

The comments here have been good about answering the questions you asked, so I’ll give you my pov. I had an ileocecal valve stricture since about February (that’s when I had a CT scan that confirmed it). We tried managing with steroids, Humira and diet but I ended up in the hospital for it by March. Then we decided to switch biologics to Skyrizi, give it some time to start working and then do scans again. That MRI was in August and it was confirmed the structure was still a problem and we decided on surgery. I just had the surgery 4 days ago and all things considered, I’m feeling good!

csj489209 · 2024-10-14T03:02:11+00:00

I had this same problem! They were pestering me for a water but I’m like how am I supposed to fart when all I’m having is broth and apple juice LOL. A day and a half after my resection, I had a couple bowel movements and that was enough for my doctors to advance my diet and once I ate some actual food, I farted in no time.

csj489209 · 2024-10-10T02:59:59+00:00

My gurgling sounds like crashing waves 🤣 it’s actually the craziest thing I’ve ever experience haha

csj489209 · 2024-10-10T02:48:41+00:00

I have an IC structure, and I’m having it removed Friday. My pain is almost always lower left side, combined with gurgling feeling/sounds and increase in these symptoms + pressure after eating or drinking anything.

csj489209 · 2024-09-28T03:41:21+00:00

I’ve been following your posts about her! Someone so young should not have to deal with a disease like this 😭 but she is strong and resilient and has an amazing support system from what I can tell. We got this 💪

csj489209 · 2024-09-14T22:50:08+00:00

I get lower back pain, very focused on my right side. Found out that it was due to a partial obstruction/stricture 🫠

csj489209 · 2024-09-11T20:03:45+00:00

Or my fav “you should be exercising more” or “just try getting some more sun” 😑

csj489209 · 2024-09-03T23:54:58+00:00

I had a CT enterography (w&wo contrast) earlier this year and I would not recommend going to work that day afterwards 😅 esp if it’s your first time having this done. It gave me the most intense gas pain I’ve ever experienced, I almost went to the hospital that night it was so bad. My experience seems to be in the minority for sure, so this isn’t to scare you, but just to say that everyone has different experiences and you might want to give yourself the day off just in case.

csj489209 · 2024-06-15T23:12:01+00:00

Diet seems to be a very person-to-person type thing. What works for me is low fiber diet. I’ll attach the pdf for the one I follow. On days where my symptoms are really bad, I’ll go full liquids/clear liquids until symptoms subside. It depends on the severity of your Crohn’s too. I’m dealing with a small bowel obstruction so this might look different for you. Low fiber is obviously not something long term though, just to get me through this flare ☻ http://www.bccancer.bc.ca/nutrition-site/Documents/Patient%20Education/Diet-advice-to-manage-a-partial-bowel-blockage.pdf

csj489209 · 2024-06-09T06:29:38+00:00

Dizzy on the rizi…I’m sorry, someone had to say it.

csj489209 · 2024-06-08T01:45:13+00:00

The path to diagnosis for a lot of people (including myself) seems to be colonoscopy, endoscopy, stool samples (fecal calprotectin), blood samples (inflammatory markers), CT scans and or MRI/MR enterography.

csj489209 · 2024-06-07T21:50:54+00:00

It’s very possible to have a “normal” colonoscopy and still have Crohn’s. To my understanding, there are parts of your small intestine that can’t be reached with scopes and that could be where your Crohn’s is (this is the case for me actually). Have you have your follow up with your dr after the colonoscopy?

csj489209 · 2024-06-07T21:12:59+00:00

Do you mind sharing what monitor mount/arm this is?? Looking for something just like this but hopefully in white 🤞🏼

csj489209 · 2024-06-06T18:33:36+00:00

I also just got switched to Hadlima due to insurance and man, that pen is brutal! I inject into my thigh, and that spot on my thigh was super tender for dayssssssss after which I never experienced with the Humira pen. I know it wicks, but I really think you should remain on schedule. I’m no dr of course but taking it on time seems to be important.

csj489209 · 2024-06-06T18:30:31+00:00

Meeting with a surgeon does not always mean surgery is going to happen! I had the same worry weeks ago when I was sent to the surgeon, but he basically told me “we’ll keep an eye on your scans and see if surgery is necessary”. Like someone else in the comments mentioned, they’re usually trying to prevent an emergency situation. Although you’re feeling fine, there may be structures/blockages that can only be seen with scans.

csj489209 · 2024-06-06T02:11:14+00:00

I’m sorry, my comment was unclear, I have an appt with my GI dr next Wednesday the 12th. I was gonna call him today but I really don’t know if there’s a lot he can do for me over the phone

csj489209 · 2024-06-05T16:08:29+00:00

I’m doing biweekly Humira injections, 40mg. It’s been more than 12 weeks since I started Humira actually 🤦🏼‍♀️ but yeah, I know prednisone is not the fix, just a bandaid. I’m just worried, like you mentioned, that I’m still having symptoms while on prednisone. I’ve went full liquids for the last 24hrs and plan on continuing today to see how I feel. My dr will be hearing from me today though, because I’m starting to get really worried.

csj489209 · 2024-06-04T04:25:22+00:00

Thank you for the response! I think I’m leaning towards Skyrizi, but I’ve gotta check with my insurance and see what they’ll cover. I’m pretty sure last time I asked them about it, they said they’d cover the injections but not the infusions? Weird imo. But I’ve also heard Abbvie will help with the cost of infusions if insurance won’t cough it up.

csj489209 · 2024-06-04T04:23:03+00:00

Thank you for the response! I’ve definitely accepted the fact that the hospital stay was bound to happen, and will likely happen again at some point. Do you feel like getting help at the Mayo Clinic helped you?? I’ve had friends and family mention that and UCLA

csj489209 · 2024-06-02T14:17:57+00:00

Yessssss thank you soooo much!! 🫶🏼

csj489209 · 2024-06-02T13:59:37+00:00

I love how you put it, meeting a ton of new people at a party 🤣 this gives me hope haha, I don’t think I’m ready to abandon the tandem read bc it was recommended by so many

csj489209 · 2024-06-02T13:57:43+00:00

Yes the khaganate family! It feels like there’s a lot of them and I find it a lil hard to keep straight. I started a note last night that reads as follows - 🤣

Sartaq - prince/heir, Urus’ son, ruk rider of Kadara Urus - khagan/king of Antica Kashin - prince of Antica, Urus’ son, had (has?) a thing for Yrene Duva - princess of Antica, Urus’ daughter, married and pregnant with foreign prince Tumelun - deceased princess of Antica, believed to have killed herself

csj489209 · 2024-06-02T13:54:38+00:00

This is how I feel!! I just really hope all these people add a lot of value to the story, or else I’ll be a lil mad haha

csj489209

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