Why did I listen to the Doctor?

Well after a looooong absence I’m back.
DX’ed with UC back in 2005ish.
Got the initial flare under control in about 6 months and have been pretty good since. A few minor speed bumps along the way but nothing really that bad at all.
I’ve been on Colazal since the original flare.
Dose was only 3 tablets a day. Originally was 9 a day. Cut to 3 many years ago. Everything was fine. All scopes came back totally normal.

about a year ago my Dr retired. Stayed with the same Gastro group but now was handed over to a different doctor.

When I told him I was only taking such a low dose of maintenance meds he said “Stop taking them. Your dose is so low it most likely isn’t really doing much”.
At that time I decided NOT to follow his advice. I stayed on my 3 tablets a day. All was fine.
about a month ago knowing I was due to see him for my yearly exam I decided to cut the dose to 2 a day and slowly come off the meds before I saw him again because I knew he was going to ask.

That was a mistake!

It took about 2 weeks and I noticed things had changed. I was dealing with constant constipation. I immediately suspected Inflammation had set in somewhere. Rectum??

I immediately upped my dose of meds but it appears the damage has been done.
I was fine for many years until I listened to the doctor.

As of now no D, no urgency, no pain, no blood or mucus but something is off.
I’m dealing with “pebble poop” which I think points to inflammation.

I call Dr office and first appointment is end of JULY! I explained my situation but it didn’t matter.

Why did I listen to the Doctor??

Yes, I went up to 9 a day.
Hopefully I can get this under control before it gets worse.

We shall see!

Post Edited (Pooper Bowl Champ) : 6/8/2023 10:50:00 AM (GMT-8)

Can you ask for rectal meds? Doc should be able to give you a prescription without waiting until the end of July.

I would give it a couple of weeks.

UPDATE;

Still battling constipation.
Called my Dr’s office twice to see if I could be seen ASAP. Told them my situation and both times I was told there were no appointments earlier.
I just don’t understand how after telling them I was having issues I was told I can’t be seen until July 17th.

Sorry, just needed to vent.

Glad you're seeing some improvement, sounds like you need a new doctor.
Just remember, rectal meds can only treat about 12" into your colon, if that's where the problem is then great, if not you're wasting your time and putting things up your bum for no reason. Personally, the less things going up my bum, the better

Post Edited (beatUC) : 6/29/2023 2:04:08 PM (GMT-8)

You shouldn't have to wait to get a script for something to help you until you are seen. If the doc has a patient portal send them a message. Describe your symptoms and ask for rectal meds. They are very helpful with constipation when flaring. The constipation is because the rectum is inflamed and narrowed. At the very least get some hyrocortisone suppositories if you can.

If it were me I’d stay at the max mesalamine tablet dose indefinitely and add Rowasa enemas every night for at least a month if not longer. At least give the rectal meds a college try if you haven’t before. I’ve stayed on both for a couple of years and they’ve kept things fairly quiet down there. I honestly don’t see the reasoning behind lowering the oral dose if it’s working. Why do docs suggest this?

Person I spoke with at Dr’s office said NO meds will be given without seeing the Dr first.

When I called (twice now) and just about begged to get an earlier appointment I was told that they had no appointments earlier.

Actually I was told I could get a LATER appointment if I wanted. Now how dumb is that?

I have no choice but to wait until the 17th and let the Dr know what took place as I’m sure he has no idea how his staff handled my situation.

I’m holding steady with my symptoms. Not getting worse physically but mentally I’m going nuts over how I am being treated (well….. not being treated)

My motto when it comes to UC is: if it ain’t broke, don’t fix it.
Meaning: if things are going well, DON’T CHANGE ANYTHING!!!!

I remember once reading a story of someone on HW who was in remission for many many years, like 25 years, and then he had to see a different GI/doc who told him to stop drinking coffee everyday.
When he stopped the coffee, he started to flare!! And apparently the flare became viscous very quickly and the coffee never helped again.
That’s the crazy thing about this disease, everything works for a while until it doesn’t. And going back on said thing won’t help again. That’s one aspect of this disease which I would absolutely love to make sense of, scientifically, one day.
How does it make sense that something that helped for long doesn’t help anymore just because you stopped it for a few days???
But that’s UC for ya!
Anyway, I hope you can get this back under control asap. With just the colazal. Consider rectal 5ASAs as other suggested.

Saw my Dr yesterday.
Making a long story short I explained EVERYTHING I was going through to him.

He looked over the results of my bloodwork. Everything came back very normal. No concerns there.

I kept stressing how I was dealing with constipation that was not improving.
I had no doubts I was heading for a colonoscopy.

BUT…..his advice was take Metamucil. I said I was taking it. Wasn’t helping.
He then said take Miralax. Again I said I was using that also.
He again turns to my bloodwork and says “Well your thyroid is fine. Have you been tested for Celiac Disease?”
I said no.

He gives me a script to be tested and says “See you in 6 months”.

Never examined me in any way at all.
No blood pressure, never weighed me, never laid a finger on me. Just asked questions and was gone.

Time to find a new Gastro Dr!!!

What Sara said. I drink 1 litre of (homemade) vegetable juice nearly every morning and definitely have more bowel movements on the juice days.

Re blood tests... they are not always sensitive to UC. I remember having a CRP of 0.1 (normal is anything less than 10) while my sigmoidoscopy showed severe ulceration in the rectum...

PBC...did you ask about rectal meds?

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