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Proctitis Mayo Score 3 in the Hospital

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Ulcerative Colitis
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Posted 10/12/2020 10:09 AM (GMT 0)
Hello folks, I am currently in the hospital from a spontaneous hemorrhage that was quite frightening. I have had Proctitis for about 10 years which was well controlled with Lialda and Canasa with the occasional use of Rowasa and the now discontinued Cortifoam (RIP). 2 years ago I had a flare when insurance switched me to Apriso. Went back on Lialda and added Uceris (which didn’t work) and then hydrocortisone supposed and enemas and seemed to come thru. In September of this year (the day before my wedding) the blood came back and another flare started and the proctitis advanced up the left side of the colon. It was a doozy of a flare and my doc put me on steroids for a 2 month course and Entyvio beginning in December. No real response at first and we went from 6 to 8 weeks. I felt about 85 percent better but still had blood on the tissue with about half of my movements. Had a colonoscopy in May and Entyvio healed the colon, but the rectum was a mess. I had been using Canasa twice a day and Rowasa every night for the whole flare so we added Uceris foam and Entyvio to 4 weeks. However, I was still having light blood in most movements (I average 3 well formed stools per morning).

Thursday morning I wake up feeling fine, go to the bathroom and suddenly it’s the red wedding from Game of Thrones. I am basically giving birth to jellyfish (sorry if this is too descriptive). I head to ER and am admitted. FlexSig showed Mayo 3 score inflammation in the rectum only. I am doing well on the rescue steroids, solemedol (sorry don’t know how to spell that). They are sending me home today with Prednisone and a switch to Remicade when approval comes from insurance.

My question is can this inflammation be put into remission with that level of disease? I do think that Remicade can help with proctitis but am feeling so defeated. They sent a surgeon up who said that I won’t need surgery now and believes Remicade can help, but I know surgery could be in my future. I am okay with that, but am hoping to get back to sweet sweet remission.

Anyone with any experience with this level of disease that came through? Anything I should be asking the doctor? Do I continue the rectal meds even though I seem to have lost response? Anyone experienced in good old Remicade? Thanks!
Posted 10/12/2020 11:59 AM (GMT 0)
I've previously had severe inflammation in the rectum which neither entyvio nor remicade could touch (whilst they did work on the rest of the colon) but xeljanz did work. So to answer your question, yes absolutely remicade can work for this, it's probably not a question of disease severity but whether it blocks the right inflammation pathway. On the other hand re rectal meds - I am a non responder to enemas when inflammation is severe but do respond if I catch the inflammation at an early stage. Good luck
Posted 10/12/2020 12:16 PM (GMT 0)
Thank you, that gives me some hope!
Posted 10/12/2020 2:03 PM (GMT 0)
I have also been known to pass bloody blobs like jelly fish and it is terrifying. I was able to gain control of that flare up (fall of 2018) with prednisone, rectals, and Imuran as well as Lialda but I started having issues with the generic form of Lialda from North Star and switched to colazal. Things have been great for me since then. By the time I was scoped it was 4 months after my flare up started and things didn't look very inflamed but I had also been on pred for 3.5 months at that point. It took a long time to come off the prednisone and I was on a pretty high dose for a while, 40 mg for a month before I could taper down very slowly. Hope remi and pred work for you!
Posted 10/12/2020 3:58 PM (GMT 0)
Thank you Momtoboys! Just saw the on call GI and I am to continue the rectals, Lialda and add
Pred while home. 40 mg and a slow taper, while they attempt to get insurance to approve the switch to Remicade. Quite a scary little jaunt. My colon has such a bad attitude. Thanks again for the info and reassurance.
Posted 10/12/2020 6:12 PM (GMT 0)
Sounds like a sound plan. Good luck and do keep us posted on how it goes.
Posted 10/17/2020 1:53 PM (GMT 0)
Hi folks, I have been home for a few days and am awaiting my first Remicade infusion on Monday. I was sent home with 40 mg Prednisone. I was doing better for a few days - no blood (my main symptom this flare) and very infrequent trips to bathroom. In fact, I have only pooped twice in the last 3 days. I have had minor mucus maybe 2 times a day. This morning, I felt that I was going to go but it was only blood again. A couple of dark red clots and a red bowl of water. Of course, it is Saturday and I can’t get in touch with the doc. Question-is this due to the lower dose of prednisone? I was getting 60 mg of Solu-Medrol in the hospital and that stopped the blood quickly.
Should I up the pred or just wait until my Remicade? Obviously, if the blood gets very bad again, I will go back to the ER.
Posted 10/18/2020 7:49 PM (GMT 0)
That’s a tough one. My experience is that healing is never a linear process for me, some days are worse than others. If the bleeding gets worse I would reach out to your doctor or head back to the hospital but if the bleeding isn’t terrible I would give it a couple of days. Keep us posted!
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