Refractory proctitis and at my wit's end

TLDR; Can immunosuppressants worsen proctitis?

Refractory proctitis that doesn't respond to mesalamines, pred, budesonide, Entyvio, Rinvoq, Stelara. And many of these actually worsened the inflammation. Negative stool bacterial, viral, parasitic tests.

What could I be missing?

Iam due to see a surgeon soon, but I feel heartbroken because Iam considering removing a mostly healthy colon all because of a diseased 15 cm (the rectum).

.........................................

Hi there,

I really need some advice from anyone who has dealt with proctitis or a case similar to mine.

I have what seems to be refractory ulcerative proctitis. Confirmed by pathology. Initially I had pancolitis dx 2011 but that calmed down and for the past few years I have had this persistent proctitis which is resisting every drug Iam trying.

- FMT: remission for nearly 5 years then stopped working in 2020 which is when the most recent bout of trouble started

- pred enemas and oral budesonide, worked for 2020 -2021 then stopped working.

- late 2021 started Entyvio, then failed it in March 2023. But Entyvio never got me into proper remission and I was always recording high calprotectins even on it.

- Rinvoq for 5 months from April to September 2023: it worked like a charm at first but then failed very suddenly, literally over night I went from seeing occasional 1 cm of mucous on stool to bleeding and cramping like crazy!

- Stelara started mid October 2023. So far no response.

Symptoms at the moment:

- diarrhoea or just squirting what looks like straight water mixed with some mucous many times per day. Urgent and crampy and sometimes bloody. The amounts are small consistent with inflammation in the first 15 cm (rectum), and then formed stool passes through.

What I don't get:

- I flared literally the day right after the 11th Entyvio infusion, how can that be? I have never heard of someone going into a flare the DAY IMMEDIATELY AFTER THE INFUSION. I was having minor symptoms beforehand but the infusion pushed me into a proper flare with blood and mucous and the works

- pred enemas and oral budesonide make my bleeding WORSE!

- When I was on Rinvoq: we tried increasing the dose from 15 mg to 30 mg to get the flare under control and that made my symptoms, again -you guessed it-, WORSE. Like dramatically worse. The cramping became severe and the bleeding worsened 3 -folds.

Iam due to see a surgeon soon, but I feel heartbroken because Iam considering removing a mostly healthy colon all because of a diseased 15 cm (the rectum). And Iam worried that there is something my docs are missing; since I have had paradoxical reactions with immunosuppressants seemingly worsening my colitis.

Btw, just two weeks ago I had a complete stool MCS and PCR to check for bacteria viruses, inc CMV, and parasites, and they all came back negative.

Iam at loss.

Are these symptoms typical of those failing medications? or do you think I may have some undiagnosed infection or something else causing these symptoms?

Very sorry that you have this major dilemma. For a long time this forum had a moderator known as Suebear, who often mentioned that she needed a colectomy due to persistent proctitis only. You might be able to read her posts in the archive in case she wrote about some aspect of her condition that could help you. As I recall, she was a very active person who enjoyed hiking/backpacking a lot. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Oh and forgot to mention re the Isatis Cooling: yes Iam still on that. Only x3 capsules/day (full dose is 9/d). I tried stopping it twice but things get worse when I stop it. I think even in the Japanese studies some people developed a hypersensitivity response to it, but not all, which is probably why you reacted to it.

ConquetUC,

My CRP has been above normal for the last year. I started on 400 mg CQ10, 100 mg zinc and it finally lowered my CRP I to the normal range. It was running 11 to 29.... Now it's down to 9. Fistula has lower mucus output in my stump.

Am waiting to try dbhb--we are playing with Remicade, methotrexate and Prednisone....

Question... A lady in my support group swears that when she is "done" with a med it's almost like a sudden allergic reaction...and she complains of proctitis each time. I'll try to see what she's doing.

Clo

Old Mike,

Thanks for letting me know.

For some reason my body is not absorbing Potassium, Zinc, Vitamin D or E. My GI, PCP and Colorectal surgeon are monitoring closely. I'm taking large amounts of all. We are going to up my Cq10 to 600, vitamin D to 20,000 and lower the zinc to 50... The rest leave alone.

I should have put a disclaimer in the post. Don't do this without doctor knowledge and monitoring.

The ones that made the difference is when we added the Cq10 and even more with the zinc.

Clo

Clo: interesting what that lady in your support group mentioned, as this has been similar to my experience. I almost break out over night in a some kind of severe proctitis flare.
I second OM re the zinc, too high at 100mg and can cause copper absorption issues. It can even compete with other minerals for absorption.

Old Mike: Im glad you are doing well and hope you continue to feel good.
Which brand d-BHB do you recommend?

Conquer. You can get sodium or mixed salt BHB Amazon Vitacost. Pure brand potassium D-BHB.
Shift real ketones.
I can't recommend Bulk Supplements brand of BHB.
Just keep in mind any of these salts provide a lot of minerals if your system can handle them.

oldmike

Clo: Believe I read somewhere probably never find it again. Anyhow chew the vitamin D caps,
this mixes the D with saliva and digestive enzymes for better absorption, then spit out the cap.
Also might help to take during a meal with fat.

oldmike

Thanks for the clarification Quincy.

Old Mike:
Is this the brand you mentioned?
https://realketonesaustralia.com/collections/all/products/copy-of-weight-loss-d-bhb-ketone-powder-stick-packs

How many a day did you take?

Iam worried it will lower my BGL... did you feel hypo when you took it?

Just to clarify, you took this for the diversion colitis, not for the UC? But from research you think it should help UC too.

Post Edited (Conquer UC) : 1/4/2024 12:47:56 AM (GMT-8)

Conquer:Yes that brand will work,seems to be sold out on that site. I took Vitacost brand on amazon USA,
8 grams of sodium BHB/day,for diversion colitis. The sticks are also on amazon USA.

At the time also took acetyl L carnitine,and COQ10,the object is to get metabolic fuel into the cells,
and to help utilization.


Not sure what BGL is, blood glucose.
Did not feel different,other than fixing rectal pain, clots,and excess mucus.

oldmike

Thanks Old Mike, noted.

Thanks Joanna for the suggestions. The problem is I can't take 6 MP either. I took it years ago for over 3 months and during those months I became really unwell with EBV which wouldn't go away until I stopped the 6 MP. I was almost bed-ridden. It also sadly did nothing for my colitis at the time.
I have not tried Remicade or Humira. They were certainly suggested to me by my GI but I opted for the safest being Entyvio. Then Rinvoq and now Stelara.
I just feel tired of it all. Both Entyvio and Rinvoq worked really well at first then stopped working abruptly.
Remicade or some other drug may also work for me "at first". But that's not the problem. The problem is being in remission and going to sleep one night seeing just a sliver of mucous with some mild urgency, then waking up the next day to blood bath and cramping and pain and feeling like Iam dying. This is the problem that I feel done living with.
I want to be able to actually live without that fear. Because with that level of uncertainty it is very hard to plan and commit to anything fulfilling in life. This has happened atleast three times to me over the last 2 years. Each time on a different med (except the first one when I was not taking meds yet as I was still in a quasi remission from the FMTs) and each time more vicious than the previous. Calprotectin leaps from ~100 to 4000+ with little warning.
So unless there is a surefire way of preventing this overnight outbreak of misery and devastation, it seems like surgery is on the table for me.