Help - months of sympoms-suggetions?

I've had months of symptoms but am now at the point where I get a few days of no symptoms then right back to the --nausea fatigue bloating slight fever-sometimes chills-burping and now and then PVCs with the bloating.

I am 84 and have had UC for 30 some years. I'm on sulfasalazine all these years and consider myself lucky to not have to advanced to anything stronger. I have advanced beyond the maintenance dose of 2000 mg to 3000 mg throughout the years. My flares were infrequent up to this year and could be helped by eating BRAT diet for several days and I'd get better.
This session has been ongoing now for months. I was beginning to think I had some kind of virus that just kept coming back. I went to the dr (not mine) and asked to advance the sulfa to 4000mg. My dr has never let me go higher than 3000mg, even though 4000 mg is the top amount according to Drugs.com Mayo and others.
Long story short---this dr "gave me permission" to go to 4000 mg for a week" ! Then come back for a follow-up --of course NOT to the same dr!
Started on 3500 mg -got better for a few days then back to the symptoms! Took 4000 mg yesterday. Any suggestions ?? I have never been to a gastro dr and haven't had a colonoscopy since the first one years ago. I know--Me bad ! but I try to stay away from drs and use the least meds possible. I'm to go to the new dr Thurs.
Any suggestions for me?

Post Edited (yo-yo) : 12/17/2024 7:36:04 PM (GMT-5)

I understand the aversion to doctors and drugs, but this is one area where I do what I gotta do to live normally. Part of the issue for you is going to be getting help without more diagnostics done to find out just what you’re dealing with. Ultimately I guess it will depend on what you’re willing to do. There are other “low level” meds you could try if a doctor will prescribe them. Rectal meds can be helpful. Do you take any supplements? Some vitamins are anti-inflammatory as well as curcumin. A good probiotic can help. Long-term dietary changes are helpful for some. If you haven’t tried these, they might be a place to start for you. But I would recommend just starting one thing at a time for a few weeks to a month and see what it does for you before adding something else or trying something different. I do believe natural things can help with IBD but unfortunately not often without stronger meds also. Good luck! Let us know what you do.

Quincy's reply hits on some good points. The symptoms yo-yo mentions are not typical for a flare of UC. I can't help but wonder if there's something else going on, or if it's not UC at all but perhaps Crohn's disease?

Thank all so much for your comments and suggestions. Sorry I haven't answered sooner.
I've been to the dr twice--Ist one upped my sulfasalazine to 8 pills (4000 ) and told me to come back in a week. I became decidedly worse.

Next dr visit( not with that dr but with another one that is in with my primary but I had never met before) He decided that I had a toxic overload of the sulfasalazine and the standard procedure is to cut back to half the dosage for a week and see what happens.

Three more days of nausea, fatigue and weakness, then finally yesterday. NO Nausea all day! Today, no nausea so far so I think we might be on to something here. My total sulfa dose is 4 pills (2000 gms) now.

I go to my regular primary doctor on Fri. I'm still weak as a kitten. The tests for docter # 2 came back with High liver enzymes and the Sed and A1C showing little inflammation.

Again, thanks for the input and I'll let you know what the doctor says.
YoYo

Hi...what liver enzymes are high? I hope you get further testing. It's good the sufasalazine was considered and the dosage lowered...however, your liver enzymes would still be a concern.

Definitely keep us updated.
q

Good to hear enzymes are improving...hope you feel much better in the New year!
Hugs,
q