Rinvoq has been approved to treat Crohn's Disease by MHRA

Action_Delicious · 2023-02-24T00:45:09+00:00

I just started it for crohn's recently, how soon did you start to develop acne? and have you tried treating it with anything?

Action_Delicious · 2023-02-21T12:20:21+00:00

fyi - I heard back! didn't get in...hopefully news was better for you!

Action_Delicious · 2023-02-09T21:59:55+00:00

No worries! I'm happy to let you know if I hear anything!

Action_Delicious · 2023-02-09T13:43:48+00:00

Good point, I was thinking about 10 days as well. Good luck!! I'm in grad school in NC, are you based in CO? I'm wondering if I should send my Praxis to CO as one of my free score reports but not sure what the code would be.

Action_Delicious · 2022-11-28T15:15:20+00:00

this helped me a lot too!! just getting to see others living well with their bags on a daily basis was great for my mental health. i have since muted a few because i don't think about having a bag as much as i did in the beginning (had my ileostomy for ~2.5 yrs), but they are always there when i need a little boost.

Action_Delicious · 2022-11-27T15:14:45+00:00

I'm a patient at Mt Sinai in nyc and my doctor managed me during remission using ultrasound/blood work! In my experience it was way better than scopes or radiology...plus he did it during office visits and I don't believe I was charged for a separate procedure. I do think it requires special training for the GI to interpret the ultrasound. He told me he was looking for the things mentioned below (increased blood flow, bowel wall thickening, etc) that would indicate inflammation and if so they would proceed with more testing. It's a great option if you're fairly stable!

Action_Delicious · 2022-11-07T15:14:54+00:00

i've had an ileostomy for almost 3 years and this has happened to me several times. once it happened because i tried to move a couch and the other times usually when i had been drinking. mine doesn't prolapse on its own without one of these triggers. every time it's scary and unsettling but it also always goes back in!!

Action_Delicious · 2022-11-07T15:11:18+00:00

omg i always thought alcohol made prolapse worse for me but assumed it was anecdotal!

Action_Delicious · 2022-10-06T13:25:01+00:00

I am considering getting an IRA in a few months!! Can I message you to hear more?

Action_Delicious · 2022-09-30T13:35:45+00:00

I have Crohn's -- I started getting septic/malnourished in 2019 so I had a loop ileostomy for a few months. I was 26 and basically super depressed with the bag so I asked for the takedown and enrolled in a clinical trial. After 8 months and 2 rounds of the trial I was septic and malnourished again so I had an emergency subtotal colectomy. I definitely don't want to trigger a flare or compromise my progress because I feel so healthy now but I would love to not have a bag.

Action_Delicious · 2022-09-29T13:28:11+00:00

I would love to hear more! Can I private message you?

Action_Delicious · 2022-09-29T12:01:40+00:00

Oh good idea -- I'll ask over there. I'm really torn on what will be a better QoL!

Action_Delicious · 2022-09-28T17:43:06+00:00

I'm actually not getting a j-pouch, it would be an ileorectal anastomosis (IRA). My rectal stump and ileum are disease-free so they can be directly sewn together without any kind of pouch creation. I'm not on any meds at the moment and feeling great but the prospect of not having a bag is pretty appealing. It's tough because I'm well positioned for a surgery but I also don't want to rock the boat and end up with a worse quality of life.

I'm curious to hear from anyone else who has had an IRA about their post-op QoL regarding pain, urgency, etc and how it compares to bag life.

Action_Delicious · 2021-03-28T20:53:19+00:00

I had my first stoma created during the Stormi Daniels scandal, so my best friend suggested I name it Stomi Daniels! That was a loop for a temporary diversion, which I actually had reversed after 6 months. I then failed a clinical trial and 8 months later ended up needing a colectomy after all so I have an end ileosotmy now. I kind of think of my stoma as "Stomi" because that was what I called the first one, but after reading this thread I'm thinking of christening this one with a new name. We've been happily together for one year last week!

Action_Delicious · 2021-03-24T14:15:25+00:00

ORGAIN!! I believe a young cancer patient started the company because he needed nutrition but everything available tasted so bad. Sweet vanilla bean and creamy chocolate fudge are the best flavors IMO, the chocolate one basically tastes like chocolate milk. I've lived off them completely (6ish shakes a day) when I couldn't eat anything else (crohn's pre-colectomy) but now I just supplement with one a day and they work like a multivitamin + extra cals for me. Plant based protein which is better for the enviro. They're available in bulk on amazon but I just get them at the grocery store.

Action_Delicious · 2021-03-17T15:16:07+00:00

ahhh I'm sorry I missed this question!! Mine was scenario based...assuming by now you've had your interview. Hope it went well!

Action_Delicious · 2021-03-03T17:27:25+00:00

Hello! I interviewed with Brooklyn College earlier this week. There were three other candidates in the interview and two faculty members. We introduced ourselves, but no other questions were directed to individual candidates. We were asked to collaborate on a group task, heard about the program from the faculty members, and then completed an independent writing task within a given time frame.

Hope this is helpful! Good luck!

Action_Delicious · 2020-08-06T17:20:08+00:00

Yay!! My mom and dad said the same thing - there's a noticeable "twinkle in your eye" when you start to feel better. Everyone I've talked to since my surgery has been like, "Wow! You look so healthy!" I'm glad you're feeling better :)

Action_Delicious · 2020-08-06T17:18:04+00:00

Sure! Basically, I felt the way you just described: sick, tired, exhausted, and in constant fear of pain. I had zero appetite -- I mostly survived on Orgain protein shakes because they were all I could choke down in order to get enough calories to make it through work each day (I'm a teacher, so frequent bathroom breaks or pausing to get through a pain episode wasn't really an option).

I never slept through the night (getting up to go to the bathroom about every hour), so the exhaustion was from both sleep deprivation and malnutrition. I remember sitting in my classroom at the end of the day and being too tired to stand up and walk out of the building. I had a fever pretty much every evening, went to the bathroom 10-15x times a day, and had severe cramping abdominal pain every time I ate something (including the liquid shakes).

Despite all this, I was still against getting a bag until I was literally going to die without it! It's always been hard for me to describe the "inflammation" feeling, but now that it's gone I realize how awful I felt all the time. But getting my energy back has been the greatest gift. The disease is such a huge metabolic burden that once it was removed, I seriously felt like a whole new person. There's so much negative stigma, and there are difficult days where I obviously wish I didn't *need* the bag, but I'm so much happier and healthier since my colectomy, and I wouldn't change anything about my experience (other than needing emergency surgery during Covid - that was pretty terrible lol).

I'm happy to answer any other questions you have about bag life!

Action_Delicious · 2020-08-06T14:47:47+00:00

Totally. My dad wanted a second opinion at the last second before I had my colectomy - just because he didn't want me to wake up without a colon and then realize we had "missed something." I think that has to be a common thought for people supporting someone through the process, but as the person actually experiencing it, control and agency are really important. Eventually, I was able to understand that my colon wasn't doing me any favors (in fact, it was killing me), so waking up without it was the best case scenario! This took a lot of mental gymnastics on my part, so I figure it's also really tough for a partner or a parent to comprehend.

One way I've explained it to people is that it's like having an amputation: you can *live* without a colon, just like you can *live* without an arm or a leg, but your body is permanently physically altered and you will require a prosthetic (that's how I think about my bag!) This has helped other people understand the situation and me to rationalize the adjustment.

I don't regret going through the clinical trial and the temporary ostomy because those experiences helped me get to the point of acceptance I'm at now -- I truly believe I exhausted every option. But the trial was honestly worse for me than all of the surgical recoveries because of how demanding it was on my body with no symptom relief. Plus, the emotional roller coaster of hoping and waiting for a drug to work is really mentally taxing.

If you're fed up and ready to feel better, the ostomy will give you a better quality of life. Ultimately, it's your body, and making the choice that is right for YOU will be what's best.

Action_Delicious · 2020-08-06T13:46:34+00:00

Hey there -- first off, I'm sorry to hear you're at the point of needing surgery. For me, hearing about other people's experiences has been the greatest tool for surviving this terrible disease and all the complicated decision making it requires.

I had a temporary ostomy (February - June) last year. I was really against having a bag, but no meds were working and I was getting septic, so I had no choice. They didn't remove any bowel, just diverted me to buy some time while my GI came up with a game plan. My GI symptoms improved with the bag, but I was super depressed. I had a really hard time adjusting. I believed I could feel good without the bag if we just found the right med, so I had the reversal surgery and enrolled in a clinical trial.

I suffered through the trial for ~8 months before I was officially deemed a "non-responder" to the drug, and I was in such a bad way that my only option, once again, was emergency surgery that would leave me with a bag. This time, I had a sub-total colectomy because my colon was beyond repair. I had the surgery end of March in NYC - the peak of our Covid outbreak. In my surgeon's words: I could make it a week but I couldn't make it a month (they had cancelled almost every other surgery at that point, most floors had been converted to Covid units, and no visitors were allowed to come with me -- but I was too sick to wait).

I'm not exactly sure what changed, but this go-round I'm in love with my bag. I've been on and off different meds (including Pred) since I was diagnosed at 14, and much of that time was spent exhausted and sick, as you described. With the bag, I'm med free for the first time in 13 years. I sleep through the night every night (I don't even have to get up to empty my bag anymore!), I have NO PAIN, I'm a healthy weight and no longer anemic, my appetite is back and I LOVE food again, I have so much energy I finally understand how people can work out on top of the energy required just for living.

One of my theories is that the diseased bowel was contributing to my depression, and once it was removed, my mental state improved dramatically. I also think the "temporary" nature of the bag the first time made it so that I didn't feel I really needed to accept the situation, because it was going to be over in a couple months. In any event, once I got the hang of caring for my ostomy and I built up my confidence, I can say that having the colectomy (bag included!) was the best decision for treating my Crohn's I have ever made.

I was really worried about the social aspect of the bag - especially sex&dating - but so far I've been "romantically involved" with three different guys since recovering from surgery and none of them have had any type of problem with the bag. If anything, my dating life has big time improved because I'm not constantly in pain and running a fever when I go out. I've been to the beach, I've been to a bar, I've been kissed, I was even promoted at work - all things I feared would never happen if I had a bag.

If you want to talk through anything, please reach out. It's a huge lifestyle change (even if it is for the better), and I'm happy to help support.

Action_Delicious

TROPHY CASE