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noodlesnoodles

HealingWell Forum
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Member Profile
Display Name
noodlesnoodles
Profile Created
11/11/2015 11:00 PM
Last Seen
4/14/2021 1:16 AM
Total Posts
383

Last 50 Posts

Surgery objections - can you counter these?

Gut Flora Gut flora issues occur when you have an imbalance. If you have no colon, you can't have an imbalance. A GI on Twitter explained it that way - the issue just no longer exists. This is backed...

4/14/2021 1:16 AM

Ulcerative Colitis
Stelara experiences

I just wanted to come back and provide an update to say that at 16 weeks I started having clinical response to Stelara. So don't be too discouraged if you don't see results right away....

4/14/2021 1:05 AM

Ulcerative Colitis
Canasa suppository disaster

Sounds like an unrelated bout of stomach virus....

2/20/2021 3:03 AM

Ulcerative Colitis
Do you ever feel completely alone?

Biologics are proven safer than azathioprine. I'd look into starting a biologic and using Uceris to get you through until your maintenance med kicks in....

2/7/2021 1:30 AM

Ulcerative Colitis
Black Mucus/Slime ?!

Mesalamine suppositories turn a dark purple (almost black) after being in the rectum a while. That's all it is!...

2/1/2021 8:47 PM

Ulcerative Colitis
Humira Question

There are people that have been in remission on biologics for decades....

1/26/2021 2:51 AM

Ulcerative Colitis
uceris making things worse? Please help

No tapering of Uceris unless you've been on it more than 6 months and even then they often don't taper it. It isn't making it worse - the hypersensitivity reaction that can occur with mesalamine...

1/21/2021 11:49 PM

Ulcerative Colitis
58% of IBD biologic patients with positive covid19 serology had no symptoms

With only a 19 patient sample size, this could easily just be a fluke and mean nothing. Will be interesting to see larger, more significant studies....

12/1/2020 1:34 AM

Ulcerative Colitis
Nervous about starting biologic

Your risk of getting cancer (colorectal cancer) from untreated IBD is higher than the risk of cancer (lymphoma) from Remicade....

10/31/2020 11:23 PM

Ulcerative Colitis
Stelara experiences

I started it in September. I've had my loading infusion and do my first at-home injection tomorrow. No results yet (it is early) but no side effects either. I'm comforted knowing that the data shows...

10/30/2020 11:47 PM

Ulcerative Colitis
8 Myths about Ostomies Debunked - by the CEO of the Crohn's & Colitis Foundation

https://ibdpartners.org/blog_topics/11309 ...

10/24/2020 1:33 AM

Ostomies
Question about folks on Imuran being immuno-compromised or not

You are most likely immunocompromised but the level of immunosuppression that is referred to on the Florastor label is kind of a whole separate category of immunosuppression. I would check with your...

10/14/2020 12:16 AM

Ulcerative Colitis
Colonoscopy today, and no good news. :(

If you aren't scared to be on prednisone you definitely shouldn't be scared to be on biologics as they are so much safer. Entyvio especially is SO safe. But it does take a very long time to start...

10/14/2020 12:11 AM

Ulcerative Colitis
After 20 years - how often do you c-scope?

The recommendation from the Crohn's and Colitis Foundation of America, and my GI/colorectal team, is annually unless you've been in remission a long time and then every 2 years....

10/14/2020 12:00 AM

Ulcerative Colitis
Can a detox diet cure C-diff bacteria?

A detox diet won't cure you of anything. Ask your doctor about Dificid....

9/22/2020 2:09 AM

Ulcerative Colitis
Mouth ulcers and IBD

I get them pretty bad. I use SLS-free toothpaste, and injectable MTX keep mine mostly at bay now. Prednisone can also help if it gets really severe....

9/22/2020 1:58 AM

Ulcerative Colitis
Xeljance questions

My doc said I'd stay on the higher dose for 16 weeks, if necessary to attain remission. Normal for Xeljanz XR to come out appearing whole but not the immediate-release version. Pretty much every...

9/22/2020 1:54 AM

Ulcerative Colitis
Difficulty Tapering Off Hydrocortisone Enemas

I wouldn't worry about getting off the Uceris foam until you are all the way off the hydrocortisone enemas. My gut is that it is a maintenance med issue and not a tapering issue, but time will tell....

9/7/2020 1:15 AM

Ulcerative Colitis
Pregnancy - 5-ASA tablets constipation?

Very common to experience constipation during the transition into remission. It isn't the 5-asa....

9/4/2020 9:34 PM

Ulcerative Colitis
No Medications are working for my UC - looking for advise

Tacrolimus and cyclosporine are not the same thing. I'm surprised they'd put you on tacrolimus before trying Remicade....

8/21/2020 1:26 AM

Ulcerative Colitis
What's working? What's superfluous?

Have you had a colonoscopy to assess whether your current meds are working? If not, it sounds like one is in order. Then you can go from there. (Also, constipation is a side effect of Zyprexa.)...

8/17/2020 2:50 AM

Ulcerative Colitis
Adding Meds - Immunomodulators

Well, there is no way to definitively say someone has UC (there is no presentation of UC that rules out Crohn's, unlike the other way around). So, it could still be Crohn's but since the drugs are...

8/15/2020 12:37 AM

Ulcerative Colitis
Cramping/ burning stomach

It sounds like either upper GI tract Crohn's or a peptic ulcer. Either way, an EGD would not be a bad idea. In the meantime, speak to your doctor about doing 2 weeks of a PPI like Prilosec or...

8/15/2020 12:25 AM

Ulcerative Colitis
No Medications are working for my UC - looking for advise

In this case, I would try Remicade as a last-ditch effort and if it is not working after the 4th dose and escalation to the highest dose, I would plan for surgery. Skyrizi should be approved for UC...

8/8/2020 11:53 AM

Ulcerative Colitis
Prometheus Blood Test & Insurance

It is unusual to only have one in-network lab. Labcorp is offering a lot of the biologic therapeutic drug monitoring tests now - you might check into that. Additionally, Prometheus has a patient...

8/4/2020 1:04 AM

Ulcerative Colitis
Adalimumab Question

It would be worth trying weekly dosing before giving up on it....

8/1/2020 12:04 AM

Ulcerative Colitis
I'm not doing good

You can't 'become immune' to any biologics. You can develop antibodies to a biologic but that is primarily anti-TNF drugs. I think the likelihood of developing antibodies against Entyvio is 3% and...

6/25/2020 12:02 AM

Ulcerative Colitis
Do I really need Humira

Your chances of getting cancer from uncontrolled disease is higher than your chances of getting cancer from Humira....

6/19/2020 9:39 AM

Ulcerative Colitis
Low MCHC

Low MCHC in combination with low hemoglobin just means you have iron-deficiency anemia....

5/3/2020 9:39 AM

Ulcerative Colitis
Can ultrasound detect UC?

No, ultasound cannot detect ulcers. It could theoretically detect bowel wall thickening but is very limited in that ultrasound can only see some loops of bowel, not the whole thing. I've had an...

4/14/2020 8:44 AM

Ulcerative Colitis
Entyvio

Entyvio takes about 13 weeks to start working and 6 months to see full effect....

4/13/2020 2:57 AM

Crohn's Disease
Uceris headaches

If the headaches are from coming off Uceris then the prednisone will make them go away....

3/25/2020 12:47 AM

Ulcerative Colitis
Surgery

Just want to make sure you understand that the surgical pathology on your colon cannot definitively rule out Crohn's....

3/12/2020 9:06 AM

Ulcerative Colitis
My UC that my GI now calls Crohn’s disease.

There are NO histological features (things they can see on the biopsies) that can distinguish UC from Crohn's. There are SOMETIMES histological features that definitively distinguish Crohn's from UC...

3/12/2020 1:24 AM

Ulcerative Colitis
C. Diff Positive

Ask your doc about Dificid if Vanco doesn't work....

2/11/2020 12:51 AM

Ulcerative Colitis
Allergic Reaction - Remicade

Why would getting your test results on Jan. 30 prevent you from getting your next infusion? You said your last infusion was Jan. 20? Are your infusions less than 10 days apart?...

1/26/2020 11:35 AM

Ulcerative Colitis
Allergic Reaction - Remicade

If you did develop antibodies to Remicade, that means you had a primary response, which is a good thing in the sense that it means Humira or Simponi is likely to have an effect. And it is less common...

1/25/2020 7:05 AM

Ulcerative Colitis
Entyvio vs. Xeljanz

UC can cause tears in the intestines. Again, you aren't really putting yourself at risk for something you weren't already at risk for....

1/25/2020 1:35 AM

Ulcerative Colitis
Allergic Reaction - Remicade

You almost certainly have antibodies to Remicade and that's why you experienced anaphylaxis. This is very common. You should not have another dose until they have tested you for antibodies. If you...

1/25/2020 1:33 AM

Ulcerative Colitis
Entyvio vs. Xeljanz

I'd go for Xeljanz. My insurance forced me to do Entyvio first and I was worried the whole time I'd lose my colon before it started to work (it never worked). Xeljanz can start working in as little...

1/23/2020 11:41 AM

Ulcerative Colitis
Stelara question

I did not read every reply so sorry if some of this is repeat: 1) Obviously need to get tested for anti-drug antibodies before restarting Stelara 2) You'll need to re-do from the beginning, which...

1/7/2020 2:20 AM

Ulcerative Colitis
Rowasa enema

If you finish the month of Uceris and are still not seeing significant improvement I'd ask your doc about switching from Rowasa to hydrocortisone enemas (which are usually done for only 2-4 weeks)....

1/5/2020 3:47 AM

Ulcerative Colitis
Getting Entyvio infusion with cold symptoms, OK?

Your infusion nurse will have the final say but usually if you don't have a fever or symptoms of something bacterial, it is OK to get Entyvio....

1/5/2020 3:43 AM

Ulcerative Colitis
Wondering what happened to VSL#3?

https://www.gastroendonews.com/In-the-News/Article/01-19/Probiotic-Maker-Loses-False-Claims-Case/53851?sub=46E34BC468AA42105FBFEB39A554DC4977EE2D415596C5B71CFB24B34418180&fbclid=IwAR3wSAgNWKslAr0nth5...

1/2/2020 11:26 AM

Ulcerative Colitis
Severe cramping in rectum after ostomy surgery

The hydrocortisone suppositories did not work (steroid refractory) but I just switched back to Canasa and I've gone from 10 BMs a day to 0-1. Which is good because I'm not getting a J pouch and I...

12/27/2019 11:39 PM

Ostomies
Ileostomy Life - 1 month post-op

I wanted to come on here and provide an update since I've been sporadically active here since before my diagnosis. I had surgery just before Thanksgiving and while there have been complications, I am...

12/26/2019 9:07 PM

Ulcerative Colitis
Severe cramping in rectum after ostomy surgery

My surgeon put me on hydrocortisone suppositories. Not sure if they are helping or not. The anal fissure has since healed but still a lot of blood so it's definitely coming from my rectum. I go to...

12/20/2019 9:11 PM

Ostomies
Severe cramping in rectum after ostomy surgery

I have an ileostomy but still have my rectum. Anyone been in this situation and have terrible rectal cramping that feels like your rectum is going to turn inside out? It happens 1-3 times a day and I...

12/5/2019 7:17 AM

Ostomies
Water goes into bag

Have you tried taking your water + meds with a salty snack like potato chips? (With regards to potassium, that is normal to pass the tabs whole - ask your doctor for liquid potassium instead.)...

12/5/2019 7:12 AM

Ostomies
Having my total colectomy/ileostomy surgery tomorrow (Monday)!

I am having my colectomy with end ileostomy tomorrow! The plan is, barring unforeseen circumstances, for the ileostomy to be permanent (getting a proctectomy/barbie butt later on down the line). I've...

11/24/2019 8:25 AM

Ostomies
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