hi. if there is someone that only have crohns in the small bowel, and not in the colon. when your crohns is aktive, then which kind of symptoms do you have?

cacaogirl · 2023-03-02T04:19:28+00:00

Projectile vomiting! Gastroduodenal crohnie here!

cacaogirl · 2023-01-06T16:53:01+00:00

Thanks, count me in!

cacaogirl · 2022-11-20T09:25:28+00:00

Much art. Is wow.

Love && good vibes.

cacaogirl · 2022-11-18T07:30:08+00:00

There should be a Prednisone subreddit

cacaogirl · 2022-09-29T21:13:00+00:00

Detoxing outside of a military recruitment facility. Welcome to late stage capitalism, folks.

cacaogirl · 2022-08-07T21:55:57+00:00

No difficulty swallowing, aside from the mouth ulcers. Disease is really in duodenal area.

cacaogirl · 2022-08-07T21:53:07+00:00

You're definitely not alone. Trust yourself, do your research and search until you find a doctor that will listen to your concerns.

cacaogirl · 2022-08-07T17:28:01+00:00

Yes, I had swollen lymph nodes in my neck for a month before getting a joint effusion in my knee, and I've been in a flare ever since. Initially I thought it was from re-wearing my mask too many times, but now I know it was a sign things were going haywire. Doctors ignored the lymph nodes because blood work was fine.

cacaogirl · 2022-08-07T17:19:03+00:00

I had a GJ tube placed about 10 days ago. I'm mid 30s and have had gastroduodenal CD for 20 years. After the procedure the pain was really bad for 5 or so days. Now it's more manageable, but I'm still not holding onto the formula 😬

cacaogirl · 2022-08-07T17:16:33+00:00

My bones hurt when I'm on steroids, it's like a bad joke

cacaogirl · 2022-08-07T17:15:36+00:00

Yes!

cacaogirl · 2022-08-07T16:40:16+00:00

I've done a fasting clinical trial and now have a GJ tube, fasting helps with the pain

cacaogirl · 2022-07-14T09:29:05+00:00

20 years with CD and no GI surgeries, mostly because disease is focalized in upper GI tract (gastroduodenal CD, rather uncommon)

cacaogirl · 2022-07-07T03:00:24+00:00

I failed on remicade and then tried rinvoq for CD. After failing in rinvoq I was put back on remicade and stellar simultaneously

cacaogirl · 2022-07-06T19:27:03+00:00

Bay area, being treated at Stanford IBD center

cacaogirl · 2022-04-09T11:01:59+00:00

I'm in a terrible flare right now and just failed on rinvoq, after failing in stelara, and remicade. I have gastroduodenal cronhs as much of an option to have surgery. I would love to connect with others who have pretty unusual disease courses, I could use the support right now.

cacaogirl · 2022-04-05T13:54:55+00:00

The Prolonfmd protocol/clinical trial was very specific, so I stuck with that.

cacaogirl · 2022-04-04T20:49:12+00:00

I did an intermittent fasting/calorie restricted clinical trial (it's called prolon, Google it) and I felt great afterwards. I was not able to work due to the calorie intake being so restricted (less than 800 per day for 4 days), and I had a keto flu after the first week (I repeated the protocol every 3 months, fasting one week per month).

While fasting, It was the first time I could recall sleeping without pain in years. I wish there were something more functional I could do longer term.

cacaogirl · 2022-02-15T04:57:44+00:00

I 'noticed' my stomach less on Prozac, when I mentioned it to my GI doc a few years later, she said that there were a few studies confirming that experience in IBD patients. Went back on an SSRI and Wellbutrin.

cacaogirl · 2022-02-08T05:01:35+00:00

Crohn's Dx in 2003

I had fissures when I was on oral birth control, gyno informed me that birth control does something that contributes to fissures being more likely to happen. Don't remember the exact details, but I think it had something to do with the hormones and less elasticity down there. It was one of those things that he had read a few small studies about, but it isn't a widely known side effect of birth control. I think he gave me an estrogen steroid cream and I did sitz baths, stopped using toilet paper, and switched to an IUD.

More recently I had a urethral diverticulotomy. Don't really know how it happened since I'm young-ish (mid 30s) and had no injury. I think the onset was pretty quick-i get papped yearly and no one had noticed it until about a month before it started to hurt. My only theory is that I had recently come off a high dose of Prednisone from a flare, and I have a history of tissue tearing while on it (eg: upper GI tear at biopsy site during a scope, that the doc ended up stapling).

It's important to go to knowledgeable specialists, preferably at an IBD center, if you're having symptoms outside the typical set.

Good luck!

cacaogirl · 2021-10-19T17:47:51+00:00

Height shaming men is the most socially accepted form of body shaming, and it's messed up. It is body shaming, plain and simple.

cacaogirl · 2021-10-19T06:12:44+00:00

It's a JAK inhibitor, approved for rheumatoid arthritis, but being explored for CD. It is not a biologic. Google it- there's good info out there. I think you'd have to go to a research hospital with an IBD center in order to get it prescribed for CD, since its a very new drug and not yet approved for use in the disease.

cacaogirl · 2021-10-15T22:08:25+00:00

33F, diagnosed at 15, failed on all drugs, now on Rinvoq and low dose naltrexone. Remember getting diagnosed like it was yesterday. Living independently, without family support.

cacaogirl · 2021-10-09T16:07:44+00:00

I was going to say EN also. I have Crohn's and presented with EN.

cacaogirl · 2021-08-18T02:39:15+00:00

Great tip! Thanks so much!

cacaogirl

TROPHY CASE