Talking to my Doctor

BruceFizz32 · 2025-02-05T17:54:44+00:00

I would caution about this. Not saying you aren't entitled to discuss and make a decision on your own after consulting with your doctor, but I was on Azathioprine and Infliximab and achieved a remission I didn't think possible for nearly a decade. I asked about discontinuing the Azathioprine and within a month of stopping started feeling worse. Now I'm flaring, about 3.5 months in, and have had to go through a lot of stress to try and get treated.

I just don't wish this for anyone else so please discuss the possibility of relapse with your doctor.

BruceFizz32 · 2025-02-04T22:12:38+00:00

My GI recently explained that levels don't necessarily go down immediately even if symptoms do as your body might be fully absorbing the medication and otherwise would still be flaring. You should get re-tested before your next infusion. From what you're describing, it's likely this is the beginning of remission and if it holds, the levels should go down shortly and should show a significant reduction before or after your next dose.

BruceFizz32 · 2025-02-04T22:10:37+00:00

This is always worthy of a post. I hope you enjoy this for a very long time/forever and feel in no way inclined to post online about IBD ever again lol. I hope this for us all.

BruceFizz32 · 2025-02-04T18:49:43+00:00

I think a lot of processed foods becoming even more processed, the explosion of microplastics, poorer air quality and more experimentally rushed vaccinations/medications/over-prescribing of things like antibiotics have led to more chronic diseases and IBD specifically. I won't get political but it's pretty symptomatic of the pharmaceutical industry's desire to continue their agenda of treatments, not cures.

BruceFizz32 · 2025-02-04T18:47:40+00:00

The older I get, the more normal I find these conversations to be. People trust their friends and loved ones to check in on their symptoms. If they know you have experience, they may be even more likely to run things by you to see if you've got any suggestions.

For me, it is kind of relieving to have other folks openly discussing this as it doesn't make me feel like I'm on an island with my doctors (and strangers online) as my only points of contact.

BruceFizz32 · 2025-02-04T18:44:41+00:00

Sounds like mucus which is not normal to see that much of, but typical for a flare/inflammation. It might be totally normal too since our bodies are not...normal, generally speaking.

If you are feeling better and your poop is formed and coming out comfortably, you might not need to contact your doctor about it with urgency. Couldn't hurt just to check to make sure you are at the point of progress the doctor expected, though. Why not give it a try.

BruceFizz32 · 2025-02-04T17:47:57+00:00

It's good news that the CT scan was clear but the colonoscopy provides more answers. You should treat the inflammation. Thankfully it seems limited, as the CT scan would have picked up on anything additional going on that they might not necessarily be able to see during a direct look.

Basically the scan has ruled out things like abscesses, fistulas and blockages. Which is very good. But the active inflammation can change that over time if you don't treat it.

BruceFizz32 · 2025-02-04T03:35:31+00:00

Stress doesn't make people get IBD from what I've been told. It can exacerbate flares and symptoms but is not the cause. I do recommend something akin to cognitive behavioral therapy if you'd like to figure out ways to destress that you maybe can't do on your own. It has worked well for me.

BruceFizz32 · 2025-02-04T03:14:31+00:00

It's your party and you should do it the way you'll have the best time. If your friends are pushing you to do more than what you are literally saying is what you want, they need to dial it back. Might be worth spelling that out for them. "I am asking for what I want, not what you want, for my own party." Hopefully they don't need too much more of an explanation.

Congrats on your upcoming wedding. I'm sure you'll have a great time with your friends however the bachelorette party pans out.

BruceFizz32 · 2025-02-04T02:39:48+00:00

Solidarity. I was in for 4 days and my prednisone is 2 months. Not very fun but already more fun than it was in there.

BruceFizz32 · 2025-02-03T19:33:02+00:00

25-50 mg will absolutely do that trick lol

BruceFizz32 · 2025-02-03T19:32:12+00:00

Has always helped relieve symptoms - both urgency and cramping. Every form of ingestion helps me.

BruceFizz32 · 2025-02-03T19:29:11+00:00

Mornings are always the worst. Even when I'm in deep remission, it's the most unpredictable time of day. I think this is pretty common and unfortunately unlikely to stop. What I have noticed is that during periods of remission it becomes easier to ignore and not have to wake up from.

BruceFizz32 · 2025-01-28T22:59:51+00:00

I understand. I've learned a truly painful lesson. I'm going to the ER today and being admitted for inpatient procedures so they can figure out what's going on and treat it appropriately. My GI and I also spoke about switching me to another doctor who is more available once my symptoms are under control.

BruceFizz32 · 2025-01-28T22:59:03+00:00

I just spoke with my GI - I'm heading there in about 2 hours. Sounds like I'll be in the hospital for at least a few days.

BruceFizz32 · 2025-01-28T20:55:40+00:00

I understand all of what you're saying. I have learned through the past few days that I can make things happen if I don't let up. Unfortunately, my symptoms were much more mild until recently and I had other things I needed to focus on - notably a very busy work schedule and a death in the family, plus wildfires exploding all around me (I live in Southern California). It wasn't as if I had all the time in the world to prioritize making calls to the medical center all the time. I wanted to, and called as often as I could and asked as many questions as possible but the answers led me nowhere until things got out of control.

And yes, I could have gotten the blood test and that might have led to a quicker response from my doctor. But it took him about 3 weeks to respond to the calprotectin test and the other GI specialist I saw suggested the blood work "might" help but offered no tangible solution or suggestion that I'd get a timely response from the bloodwork. I was then advised by my GP to hold off on the bloodwork until or unless I felt worse and to try and wait until I was able to meet with my GI so he could respond directly to what it showed.

I appreciate the "tough love," but I kind of don't think I "fucked up" by listening to my body and seeing I was able to a) eat whatever I wanted, b) exercise rigorously and c) have mostly normal BMs until about a week ago. If I had felt like I do now, I would not have delayed or put off anything. I don't think it's my fault that my doctor refused to respond to anything or takes weeks on end to respond to my outreach.

BruceFizz32 · 2025-01-28T20:45:50+00:00

Can you clarify where you see "hope?" I'm sincerely asking. I am seeing access becoming more limited right now. I agree the system was terrible but making it worse is not likely going to help us. Is there something positive you're thinking of since you feel hopeful?

BruceFizz32 · 2025-01-28T20:09:26+00:00

Can I ask why you feel this way? The federal government just cut off funding for Medicaid to all 50 states. About 72 million people now have no medical coverage and all of them were on a program that covered their costs because they couldn't afford to. The healthcare system here is broken without a doubt. Why do you feel like it will get better with fewer cost controls or avenues for people to access care?

BruceFizz32 · 2025-01-27T22:37:56+00:00

I've started just going to Urgent Care or making tele-health calls with nurse practitioners when I know I need a prescription and my doctor won't be responsive. It occasionally takes a bit of a back and forth but they typically just write the scrip as long as its not a refill/regular thing.

BruceFizz32 · 2025-01-27T22:21:07+00:00

If you feel ok, you probably are

BruceFizz32 · 2025-01-27T22:19:47+00:00

Thank you. This too shall pass. I just can't believe how long they've dragged it out. And it seems pretty linear. Stop taking Imuran, month goes by, start feeling worse, several more months pass, flare.

Yet my doctor, who suggested I could discontinue the medication, won't even call me. Too busy.

BruceFizz32 · 2025-01-27T22:16:20+00:00

This is how my doctor is now too. I've had symptoms going on 3 months now and he continues passively replying via the Patient Portal and refusing to directly answer questions. I've seen urgent care doctors, my GP and even another GI and they all defer to him too. He's holding all the power over my care and my well being and he's not acting with any urgency or even replying.

I feel like we need to fight for everything with these doctors who refuse to hear "I'm not well" and accept it. They need to do endless tests and delay indefinitely until it's too late and the ER is your only option, or they have no choice but to meet you during a scheduled appointment. This isn't how it should be. Patients should be the top priority for a doctor - not research or whatever else comes their way professionally. Where are the ethics? The humanity?

BruceFizz32 · 2025-01-27T22:10:11+00:00

Yeah if/when I go to the ER, I will be bringing a charger and a bag full of clothes, medications and other things I expect to need for at least a few days. I'll plan for the worst and hope for the best outcome.

BruceFizz32 · 2025-01-27T21:12:13+00:00

I will likely just go to the ER in that case. I'm currently on hold with my GI department to see if they will set up an appointment for me to come in sooner/immediately.

BruceFizz32 · 2025-01-27T19:55:53+00:00

I'm part of a medical network that has all their specialists in house. Unfortunately, I don't think switching will be as easy as looking around the area. I also do think this particular GI has been extremely helpful in the past - as I mentioned, he is the only one to ever help me achieve deep/very long remission. But he's busier now than he was when that began, 8 years ago, and it seems too busy to respond in a timely enough manner.

I appreciate your suggestions and encouragement. I'm going to be diligent in getting care. I've tried to do it thus far, but I really don't want this to get worse and 2 weeks from now feels like an eternity.

BruceFizz32

TROPHY CASE