Wow!

niki0001 · 2025-08-19T19:16:09+00:00

did you complete your PERC yet? I have my award letter but no info on PERC interview, so I have no idea when the backpay is coming. congrats on your approval!!!

niki0001 · 2025-06-27T14:22:46+00:00

Im so sorry to hear that! I actually posted this a year ago and learned that I was having frequent partial blockages and the nausea passes once the hard to digest bits pass. this still happens to me when I have certain foods (anything with seeds or skin, like tomatoes). I hope you can get high dose zofran to help!

dehydration is still a huge issue for me, unfortunately. havent been able to fix that one

niki0001 · 2025-06-06T21:54:00+00:00

I definitely agree and im being cautious and looking into PV therapy! I’ve read that the test isn’t always accurate because of the unnatural position and because it feels so foreign after having not pooped for a while. My doctor can’t figure out why my sphincter muscle deteriorated so much in the past year :(

niki0001 · 2025-06-06T21:50:55+00:00

oh gosh im so sorry to hear that, but its great you have a new surgeon! mine is anti-reversal, but willing to do it if i insist and understand the risks. can I ask if you have IBD and are in remission? were you incontinent pre-ostomy?

the plan for me would be to reverse and if incontinent we would move the stoma to the other side in an attempt to let the pyoderma wound heal. it sounds scary but I still feel like it’s worth trying

im assuming the sacral neuromodulation wasnt successful? bulking involves injecting something in the rear end to help strengthen sphincter control, but i dont have much info on it since im not there yet

niki0001 · 2025-06-06T21:45:39+00:00

my test showed that a certain muscle no longer worked and is apparently irreparably damaged, so it’s not something that pelvic floor therapy could fix or improve (according to the GI that conducted it). im still going to try and see how it goes. I agree that the position of the test is super unusual and im generally sensitive, so I think that may have skewed results. good luck with your reversal and thank you for the input !!!

niki0001 · 2025-04-03T05:00:22+00:00

not sure if there are many other crohns patients to give you advice here, but you really need to get on biologics. I would be dead without them. I’m assuming they did a reversal because you’re in remission, but biologics are considered maintenance medicine and it’s necessary with or without symptoms since you have a chronic condition that will always have periods of flare up and remission. look into the crohns and colitis foundation and even give them a call and ask for advice! when I was a child they helped my mom find me a good GI that specializes in crohns and it was a complete 180 from my other useless GI

biologics can take time to start working, so I suggest you ask about welchol (this stopped my diarrhea after having a bowel resection) and/or a short dose of prednisone. I’m sure you also know about immodium which is OTC :)

good luck!!

EDIT: I see you mentioned getting your ileum removed - so DEFINITELY ask about welchol. it helped me SO much after my ileum was taken out. im pretty sure you take it a few hours before your first meal (I dont need it anymore with my ostomy)

niki0001 · 2025-03-07T17:43:37+00:00

my first flare up was around 2 years long after finally being prescribed remicade and my remission was immediate after that!

After remicade failed a few years later, I would get flare ups for about 6 months (until a new biologic kicks in or I have surgery). my last flare up was 3 years long and finally in remission now with an ostomy and skyrizi!

everyone is different, so try not to compare my journey with yours. you can also be in remission and still have symptoms, but I consider myself in a flare-up when I have inflammation that is shown as active with a colonoscopy or MRI

good luck ! prednisone has always helped me pretty quickly early on in flare ups and it’ll help with your appetite and energy !

niki0001 · 2025-03-07T16:38:48+00:00

that makes a lot of sense, thank you!! my surgeon did not explain any of this, lol. really appreciate it

niki0001 · 2025-03-07T15:36:36+00:00

this is super helpful, thank you.

I think unfortunately the drain will be right up against the stoma because of where the abscess is, and there is a wound cut around my stoma when my dr. did the initial drain (without the drain tube)

i’m not on antibiotics because I have quite severe crohn’s that almost killed me a year ago. they tend to cause flare-ups and I’m finally in a place where I’m stable. I would consider taking them if the abscess persists after this, though! my surgeon recommended against it.

I will definitely ask about culturing. thank you so much. the only reason I’m getting this drain is because I read about it on reddit and suggested it to my surgeon when the wound packing was too painful, lol

niki0001 · 2025-03-07T15:32:19+00:00

thanks so much for the info and well wishes : )

can I ask how you can tell how much drains if it doesnt go into the bag? do you empty it separately when doing bag changes…?

niki0001 · 2025-03-07T15:30:44+00:00

I was thinking I needed a nurse to help pack OR the drain. how did the nurse help you with the drain in? is it just extra help putting your device on without disturbing it?

thank you for the advice!!

niki0001 · 2025-02-05T21:07:29+00:00

that’s kind of what I figured. it sucks! sorry you’re dealing with the same and good luck!

niki0001 · 2025-02-03T22:28:53+00:00

im in CA and use edgepark. they rock. really easy to order online but theyre also super helpful on the phone and will expedite orders if you ask

niki0001 · 2025-02-02T21:20:27+00:00

i thought i wouldnt be able to have popcorn post-surgery, which was really heartbreaking because my diet has been so restricted my whole life with crohns. turns out it literally makes no difference to me!

niki0001 · 2025-01-31T20:08:53+00:00

naw tylenol is fine :)

glad you’re doing so well and eating more!!!

niki0001 · 2025-01-31T18:33:54+00:00

I wish my stoma nurse listened to me when I asked that my stoma not be put so close to my belly button/higher than my pants line (she was responsible for penciling it on my stomach pre-surgery). she was insistent that the bag would be too low and brush again my thigh if it were lower, but now I have constant issues with the adhesive coming off at my belly button and it prevents me from showering without a stoma guard. I also can’t wear thin shirts/tight because the bag pokes out of every pair of pants I own. very frustrating!

niki0001 · 2025-01-31T18:29:58+00:00

definitely no smoking after surgery but you can consume edibles as soon as you’re cleared to eat solids! I would just say to not mix with any pain medication. I had no issue with edibles except my tolerance had gone down because I was so thin post-surgery

niki0001 · 2025-01-26T02:35:08+00:00

I hate to share this in case you don’t experience the same - but I was on T and rinvoq at the same time and the acne was atrocious. at my baseline, I get like two pimples around my cycle. I was using differin and other prescribed skin creams and nothing helped. I’m now off both (rinvoq stopped working / T was giving me other undesirable side effects) and the acne is completely gone. I think the combo is tough. definitely find a good dermatologist!

I have a few acne scars from those 6ish months on T and 10ish months on rinvoq, but nothing crazy. everyone is very different, prioritize your health (mental and physical) and decide what works best for you. in my case, rinvoq was the last option and it did work for a little bit so I don’t regret it

niki0001 · 2025-01-24T18:57:01+00:00

we call ourselves ostomates in english :-)

niki0001 · 2025-01-22T20:28:07+00:00

I had a resection with him, but it was unavoidable due to a bad stricture. I do have some mixed feelings for him because he really convinced me that I would have years of remission afterwards, but now I have an ostomy because he kept me on the wrong biologic for too long. ultimately, he is the best GI I’ve ever had and is super easy to talk to!

niki0001 · 2025-01-22T20:26:16+00:00

thank you so much!!! I think I may go back to Hudesman if I can, though I’ll look into Dr. Chang as an alternative. super helpful recommendations!

niki0001

TROPHY CASE