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Ulcerative Colitis
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Posted 6/20/2021 8:08 PM (GMT 0)
So after 92 days of a nasty flare of proctitis and constant blood I have zero blood and normal stools the last 4 days.
Of course I am thrilled but I wonder after all I am doing what is helping me?
1. I am taking Stelera for 6 weeks and still have entyvio in my body. Started 10 weeks ago.
2. I have been doing hyperbaric oxygen therapy for 20 sessions the last 45 days.
3. I started tacrolimus supps last week. But I had taken tacrolimus enemas for 10 days early on in my flare and it did zippo.
Maybe it is the combo therapy?
My GI had me scheduled in for a colonoscopy for Friday but I am very hesitant. I find any scope irritates me and after 92 days I sure would like to focus on healing. Thoughts anyone?
Posted 6/20/2021 8:25 PM (GMT 0)
That's interesting. I didn't know tacrolimus suppositories and enemas were an option for UC.

I've used pimecrolimus successfully when my face swells up (due to an allergy) but I've never been offered tacrolimus suppositories or enemas. I'll ask my gastro about it in my next appt.

I'm glad to hear you've had some improvement.

I'd probably be wary of a colonoscopy just after I'd started to turn a corner too. Is it overdue? If it is it's prob best to go ahead, but if it isn't there's no harm in asking your GI if you can delay it.
Posted 6/20/2021 9:05 PM (GMT 0)
Tac is a powerful immunosuppressant that is powerful and can be given orally which is more systemic. I can work quickly but what I find surprising it is that it never worked as an enema format 80 days ago.
Posted 6/21/2021 1:33 PM (GMT 0)
I treated my ulcerative proctitis with hydrocortisone retention enemas and continued Xeljanz. It took me a bit longer than 10 days just to be able to retain my first enema. When I was finally able to retain it overnight, I improved quickly. I think the entire process took me about 5 weeks. --- As you know with this horrible condition, 10 days feels like years. --- I would absolutely reschedule the colonoscopy for a later date.
Posted 6/21/2021 2:49 PM (GMT 0)
That is what I think. Finally I have a response from something. Every time I even go in for a flex sig it seems to exacerbate my symptoms.
Posted 6/21/2021 5:35 PM (GMT 0)
Scopes often make me get way worse, too. Hard to know what's helping you since you changed several things at once. That's frustrating. Maybe it's the Stelara kicking in?
Posted 6/21/2021 11:00 PM (GMT 0)
What’s the purpose of the colonoscopy right now? If you’re not having symptoms, then the inflammation is improved. And if you are having symptoms, then the inflammation is still there. One thing I really liked about my husband’s GI is that he was comfortable assessing the situation based on symptoms as opposed to always jumping to the invasive approach. Sitting tight for awhile and letting your gut rest probably isn’t going to hurt. If things get suddenly bad then you can reassess. Don’t be shy about pushing the doctor to explain the basis for the test and timing.

Hopefully the improvement sticks for awhile.
Posted 6/21/2021 11:45 PM (GMT 0)
I was having symptoms for 90 days with little improvement so I think he was nervous. I emailed him and he agreed to hold off. If I don’t see continued improvement I will get back to him.
Not like we can decipher what is causing the positive response by doing a colonoscopy. Appreciate the feedback.
Posted 6/22/2021 1:50 AM (GMT 0)
That's great that something is helping. Maybe you can push back the scope? 4 days is a good sign but you really never know with this illness... Would your GI let you do a calprotectin instead of a scope?
Posted 6/25/2021 10:37 PM (GMT 0)
Thanks notsosicklygirl. Officially a week of no blood. Had my second Stelera injection yesterday and seemed to help me even more this am. I am hoping it is not the tac enema. I do find it hard to believe that the Stelera could kick in that quickly because my first infusion sure was slow to assist me
Posted 6/26/2021 2:47 AM (GMT 0)
Stelara can definitely be helping by week 6. It is fairly fast acting compared to a lot of the biologics.
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