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Posted 7/8/2019 11:07 AM (GMT 0)
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Post Edited (pine88) : 6/27/2023 11:29:29 PM (GMT-8)

Posted 7/8/2019 12:06 PM (GMT 0)
Remicade can work even if Humira hasn't. I think there's people here who had that happen.

There's still other options for you. After remicade you could got to Entyvio which is a different medicine and has a different mechanism than both humira and remicade. Then there's Xeljanz. Flaring 2 years straight and still being that bad isn't ideal though.

I flared for 1.5-2 years without remission and went through remicade, and entyvio, and ultimately had surgery. Life is great for me now.
Posted 7/8/2019 12:25 PM (GMT 0)
For myself never had Remicade but both Humira and Enyvio never worked that well for me.
Now Xeljanz is working fantastic for me,
I guess we are all so different in our conditions and how things work on our nasty UC.
Posted 7/8/2019 12:28 PM (GMT 0)
If you had high humira levels within your blood, then why are you trying remicade? I'd wager you failed the TNF-alpha-blocker class of biologics already (humira and remicade are sister medications). So, going on to entyvio or xeljanz would be a better option as they have entirely different mechanisms of action, so I would ask about these instead.

I'd wonder if any of your supplements are making the mucus like that. Mucus is generally our least concerning symptom.

You're flaring, and various pains are common during them.
Posted 7/8/2019 12:29 PM (GMT 0)
Have you tried mesalamine enemas? Couldn't tell from your post. This was a big benefit to stop bleeding and begin healing, especially since you say your inflammation is at the very bottom. Enemas could be your ticket to remission.

Even though you did not respond to oral 5ASA's give enemas a really good try (a month) before trying anything else. It takes commitment to use them, getting over the "it's not a pill" and dealing with learning to how to use them. Search the forum for "how to" threads.

Good luck. I had no benefits or improvement with oral 5-ASA's but the enemas worked for me. There are also steroid enemas available but that is a short term use, mesalamine enemas can be used long term with few side effects (I had none).
Posted 7/9/2019 1:08 AM (GMT 0)
I was pretty much the same at one point, Stelara is what fixed me up eventually. It’ll be approved for UC soon. But even the Remicade or Entyvio might work. Lots of options. Many people have to find which one they need so please try not to worry. Best of luck!
Posted 7/9/2019 3:51 AM (GMT 0)
I developed Humira antibodies in less than 2 months, but Inflectra (Remicade biosimilar) is working. Granted, I am at the max dosage/closest timeframe bc my body metabolizes quickly, but it is working.
Posted 7/9/2019 7:43 AM (GMT 0)
The water that you see coming out, there is an explanation. The colon's job is to absorb water from food and when it's not functioning - like during inflammation - water passes through the bowel. People with IBD have faster bowel transit time so water is less likely to be absorbed for that reasons as well.

Inflammation itself is a type of localized edema, which is a swelling of the tissues. The swelling comes from fluid inside of the body, and if you have open ulcers then that fluid is going to come out. Usually it's mixed with blood but not always.

That's why it's easy for UC folks to get dehydrated. We are absorbing less water and we are passing more water with all our electrolytes mixed in it!
Posted 8/5/2019 2:04 PM (GMT 0)
When I had a really bad flare I went on CBD oil and colloidal silver, I felt better within weeks. Also Boswellia Serrata seems to help me.

Drink loads of coconut water when loosing so much fluid!
Posted 8/5/2019 2:11 PM (GMT 0)
I think it is very important to confirm the inflammation. Many people have persistent symptoms (usually not including blood) after inflammation is resolved. Scoping or even flex-sig is unpleasant, but it is the gold standard to ascertain inflammation.

If the inflammation is resolved, then it is hopeless to expect new/different anti-inflammatories to help. Humira and Remicade are anti-inflammatories - they are not remove all symptoms magic bullets.

If you can confirm persistent inflammation, then other classes of biologics or rectal anti-inflammatories might be the way to go. But, if inflammation is resolved, then IBS meds or other therapies might be the way to go.

The advice in prior posts is accurate, but all are predicated on ongoing inflammation. I'm just suggesting that that fact be confirmed.

good luck
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