Update after colonoscopy

It sounds like you need to find a more available, better informed gastroenterology practice. If your current one allows a PA to prescribe Zeposia, that is actually frightening! Because of private insurance pressures to cut costs, it's now happening more frequently in the U.S. that medical office support staff take on some of the physician's traditional responsibilities, such as issuing prescriptions. However, yours is going too far, assigning that to a PA. (Unless this person is at least a nurse-practitioner with experience in chronic care issues.) Your progress in managing UC successfully will be more threatened by this office's conduct than by your taking mesalamine long-term to achieve and maintain remission. I'm telling you this from personal experience. We need to connect with medical practitioners who understand that UCers require reliable, knowledgeable, and caring treatment to achieve positive outcomes, not fly-by-night personnel picking Rx meds out of a pharmaceutical company's latest brochure, sheesh!!!!! That Zeposia business is truly outrageous. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Update - had two bms today that were both large volume & appeared normal. I last went three days ago, so feel like I was making up for not going in so long.

I just got a call from the PA who got the results of the pathology and spoke with the gastroentetologist. She said he didn’t mean to put Zeposia on the list of treatments. She said the pathology came back as mild UC (though visually it looked moderate) & that he agrees with the mesalamine oral & enemas approach. So she put in for those and I hope to pick them up this afternoon. She said over time if I’m in remission, I could cut back on the level of mesalamine, but the fear is if I go off of mesalamine & get a flare, that it might not work next time & I’d be stepped up into other medications. I told her I was in full remission for almost the entire 5 1/2 years with no medication and hoped to be able to stop again at some point. She said I could try stopping mesalamine at some point down the line & it’s iffy if I’d flare as a result. In my message box, the gastroenterologist reiterated mild UC on left side and that mesaliamine will be used for treatment. Then it says we'll monitor for improvement, and "if none, then may require strong immune suppressive medication."

So my question to you all is if, assuming all goes well over the next month or so of full 4 pill mesalamine with enemas, do you think I should stay on a lower dose of mesalamine indefinitely in the long-term, or after some time of low dose mesalamine, can I try to stop and rely on diet - probiotics & prebiotics, apple cider vinegar, etc. to keep another flare from occurring? I know everyone responds different but just trying to gauge opinions.

Post Edited (dmger14) : 11/10/2021 10:52:08 AM (GMT-7)

Thanks. I agree it’s better not to risk going off mesalamine if the chances of a flare are high, especially if doing so increases the risk that mesalamine won’t work again. I was hoping my past remission success was the best guess as to what would happen this time but guess the progressive nature of UC indicates otherwise. I consider myself lucky either way, and would sooner take scaled back mesalamine in the long-term & occasionally eat fried foods & pie, etc. than no medication & strict diet.

Regarding the Zeposia, could be a mistake or drug rep pressure prompted it & he’s backing off the recommendation when pressed. I’m assuming error & it doesn’t really matter now that it’s behind me. I’m just grateful to have all of you to push me to insist on mesalamine.

Post Edited (dmger14) : 11/10/2021 12:06:24 PM (GMT-7)

What probiotics and prebiotics?
Eat as balanced as possible.

Meds are not a cure, and you will still flare. Best to have control as to when to increase meds and use as long as needed...taper...maintenance. the butt rules the process, not what you wish. A process that many are not compatible...grateful I've done it.
q

Thanks & I will look to get the pathology report. Point taken- I may have had mild inflammation at times during the last five years and never knew it, further justifying use of mesalamine for the long term going forward (albeit possibly at a lower than high dose if I can get away with it). Still waiting for the prescriptions to be filled so I can pick them up, & hope they’re not out of it or at least I can get them in a day or so.

dmger14...ive never been on highest dosage. The goal is to be taper to maintenance. The process works to find that dosage. It's not all or nothing.
There is a lot of wiggle room regarding options.
My goal is to stay off pred and all the other other meds (except topical steroids).
q

Keep us updated.
Diet doesn't set off flares, unless there are specific issues with certain foods, it could coincide with a flare. Inflammation is progressive, and we aren't alerted until symptoms are obvious as a flare... subjective, and the phases of learning can be quite confusing. I had a lot of help from my GI, thankfully.

Let us know what meds and dosage once you get them, and how you're doing on them.

q

No, I didnt mean that...hence the balanced diet, probiotics, varied fibres (because they aren't all the same). We all micromanage to a point...and it's easy to underestimate how long food digestion to evacuation can actually take. Anything that's wonky, but with increasing consistency, is time to say hmmm. At least, those are my basics.
q

Not good - had some mucus this morning after more than 2 weeks of normal stools Just got my prescription for mesalamine pills and enemas filled after a delay to get the enemas in. I hope they stop the symptoms.

Post Edited (dmger14) : 11/12/2021 9:38:18 AM (GMT-7)

Thanks & I will. Regarding pred, today is the start of the second week and first day of taking 20 mg. down from 30. Next week it goes to 10 mg. then the fourth and last week, 5 mg.

So far, so good. 1 or 2 BM per day with volume and they’re soft but formed. Just back from 2 1/2 day trip to see my mother who went into cardiac arrest and needed 2 minutes of CPR. I ate rather normal bc we were on the go the whole time to ER & ICU but had probiotic pills and some tuna & oatmeal. Just tapered to 1 prednisone & steady with 4 mesalamine oral and nightly enemas. Now that I’m back home for a bit at least, I’m doing the prebiotic and probiotics. Keeping fingers crossed.

Post Edited (dmger14) : 11/19/2021 9:01:26 PM (GMT-7)

Thanks quincy! Unfortunately, mom passed last week. At least my brothers and I got to see her every day for the week she was in hospital and she was on a morphine drip, so not in pain.

I am on the last week of 1/2 prednisone pill per day. I’ve held off of enemas on two days in the past week, but will stick with maintenance when I renew the prescription. I’ve had a bm once a day with few exceptions since the last update, almost all loose/wet but mostly formed. When I renew the oral mesalamine, should I keep with 4 a day or try scaling back to 2, or 3 for a week then 2, depending on symptoms? I’ll ask the PA but want to know your thoughts.

Post Edited (dmger14) : 11/29/2021 9:17:14 AM (GMT-7)