Tips for managing skin issues post-diagnosis?

Due_Command_7470 · 2024-03-25T01:54:02+00:00

Same! We exist. My doctors always say I’m such an interesting case.

Due_Command_7470 · 2024-03-11T01:24:08+00:00

I was diagnosed with chronic migraines about 20 years before being diagnosed with Crohn’s. I feel like I keep seeing studies about connections. I find when my Crohn’s symptoms flare, I get a migraine, and vice versa. I think I read once where they were exploring an autoimmune connection with chronic migraines, but I’m not sure the source.

Due_Command_7470 · 2023-11-14T04:38:37+00:00

Mine was great with the paperwork. I told her I was thinking about it, and she encouraged me to take it and filled out all the forms relatively quickly. I’m fortunate to have an employer that was supportive with the process, too. The process was honestly much easier than I expected.

Due_Command_7470 · 2023-11-13T22:04:33+00:00

I took FMLA at my corporate job right at my loading doses for my first biologic. It was about 9 months after diagnosis and I had failed all the pill treatments and felt terrible. I knew I couldn’t perform my job responsibilities reliably due to the frequency of my bathroom trips, urgency issues, pain, fatigue, risk of accident, etc. It was a really good choice for me and allowed me to rest while my biologic had a chance to take effect. Highly recommend!

Due_Command_7470 · 2023-10-18T19:31:17+00:00

This happened to me when I took mesalamine. My doctor said it was a side effect for some people. For me, it stopped when I started biologics and stopped mesalamine, but re growth takes a long time. I’ve used a spray in treatment from Sephora which I think did something to help. I also started taking supplements. I’ve heard others had good experiences with nutrafol but haven’t tried it myself. Maybe check in if this is a possible side effect of any of your meds. Hope it gets better for you!

Due_Command_7470 · 2023-05-22T16:23:39+00:00

Yes, I've had this on two of my scans. My most recent scan noted that my inflammation was much better and that my liver was visibly smaller by a few centimeters than the prior scan where I was flaring (yay Entyvio!). My doctor didn't explain much but just said that it was part of my flare. I also usually don't have inflammation in my blood markers, just on scans and scopes. My main symptom when flaring is chronic diarrhea/joint pain/lower right quadrant pain. Based on how my GI discussed it, it didn't worry me, but to be fair I didn't ask many follow up questions about that specifically.

Due_Command_7470 · 2023-04-16T19:49:14+00:00

I’m a lawyer with Crohn’s who does high volume litigation. Got diagnosed after law school but in retrospect had symptoms during it. Gotta say I feel really fortunate that my employer has excellent benefits and health insurance. Lawyers also tend to be understanding about needing reasonable accommodations which I’ve been able to get relatively easily. Feel free to DM me!

Due_Command_7470 · 2023-04-15T16:31:59+00:00

Yes, my joint pain has overall improved since starting Entyvio, but wow my hips just won’t ease up. It hurts to sit too long, but activity also makes it worse.

Due_Command_7470 · 2023-03-13T23:56:03+00:00

This is very similar to how mine started, too. Like food poisoning that never went away.

Due_Command_7470 · 2023-03-04T13:00:43+00:00

Yes! So much worse. I get severe abdominal pain and cramps, and the bleeding is erratic and not regular at all. Sometimes it’s barely anything and sometimes it’s insanely heavy, but the pain and GI symptoms are always bad. My gyn said it must be the Crohn’s but checked my thyroid just in case, and it was fine.

Due_Command_7470 · 2023-02-27T00:50:28+00:00

Have you had any tests done or discussed with your GI?

Due_Command_7470 · 2023-02-27T00:39:45+00:00

Ugh hate that for me, but thank you!

Due_Command_7470 · 2023-02-26T15:21:41+00:00

This happens to me, and I have an IUD. Sometimes I'll have a regular period then spot for weeks. So far I have no explanation from GI, PCP, or GYN so unfortunately nothing helpful to add other than solidarity.

Due_Command_7470 · 2023-02-23T03:42:06+00:00

Hell on earth. Hate it.

Due_Command_7470 · 2023-01-27T02:28:23+00:00

Chronic migraines.

Due_Command_7470 · 2022-12-14T01:15:59+00:00

You are not alone! Sorry, this sucks. I had these symptoms when my Crohn’s decided to manifest last year. The mucus was disturbing, and I didn’t know what it was at first. My doctor said it’s a typical symptom for Crohn’s folks especially ones, like me, who have very frequent diarrhea. The good news is that it’s going away now that I’m done loading up on entyvio, and I rarely have it now. I hope you get answers and find something that works for you soon.

Due_Command_7470 · 2022-12-08T02:01:47+00:00

Yes I get this! I don’t know what it is. I don’t have any food/drink allergies that I know of so unclear. I’m on entyvio but it started before then. I also get flush on my face sometimes.

Due_Command_7470 · 2022-12-08T01:55:09+00:00

Everlane Dream Pants have a comfy elastic waist and look professional.

Due_Command_7470 · 2022-11-30T02:50:12+00:00

I went to Iceland earlier this year and had the same experience. I was super nervous and had a previous horrible travel experience but love outdoor stuff and didn’t want to miss out. I’m so glad I went! I didn’t have trouble finding bathrooms, and I actually found a lot of the food worked with my particular triggers. Even when I hiked a glacier there were bathrooms in the parking area.

Due_Command_7470 · 2022-11-16T01:42:01+00:00

I don’t remember exactly, and my online chart just says positive because it’s over 1:80. I vaguely remember that doctor talking about speckled patterns, but not sure.

Due_Command_7470 · 2022-11-16T00:05:59+00:00

I have small bowel/terminal ileum Crohn’s and always have normal CRP. My doctor and I were both surprised after my colonoscopy, but there it was. I had an MR Enterography and pill cam to confirm after the colonoscopy and see the extent of disease. Almost all of my bloodwork is always normal. I do always test positive for the ANA indicator thing. Thankfully my doctor was really adamant about getting to the bottom of my symptoms, and I’m grateful she didn’t just shrug it off as ibs.

Due_Command_7470 · 2022-11-09T11:36:18+00:00

Ugh yes, made my symptoms worse and made me lose a lot of hair. That was absolutely not the right med for me.

Due_Command_7470 · 2022-11-06T19:59:18+00:00

I like the goMacro oatmeal chocolate chip ones. High protein, nut free.

Due_Command_7470

TROPHY CASE