How Long Do Wait Before seeing a Dr for a Flare

Hi all, it’s been a while! Hope you are doing well!
This is a question I always struggle with and am looking for your experiences. How long do you wait to see how your symptoms are playing out before getting it checked out? It’s been a month of on and off issues and a week where they have definitely been impacting my day to day, urgency, having to go immediately after eating, moderate abdominal pain/discomfort, and nausea/vomiting but the last thing might have been a new migraine symptom because I had that at the same time.. who knows. I’ve been in remission for about 6years now and this might be the worst blip in it I’ve had so far. I’m really not sure yet if it’s a flare though but I fear the day this disease re-emerges on me.

Labradorite,

I try diet modification, additional rest and relaxation first and if after the end of the month I am staying the same or worsening I reach out to my GI via the portal and I make an appointment.

I'm unsure what meds you are on or when your last scope was. They might need to order blood and fecal tests prior to your appointment.

Please let us know how you are.

Clo

Labradorite,

I've had what I consider "mini" flares where I've had difficulties. They've lasted up to 10 or 11 weeks. I had a scope during one of those times and my intestines looked pretty good...so we decided to let it run it's course for a little while unless there was a fever, blood, more pain than normal, or multiple vomiting episodes. It was a little nerve wracking... And it did set a precedent.

When I flare..depending on nausea levels and how I feel...I sometimes increase my methotrexate for a few weeks. Maybe you could increase your 6mp? Sometimes increasing my mx helps.. but if I wait too long... It's not an option and I continue with my normal amounts and try to wait it out.

I also reverted to the SCD diet for a couple of weeks and sometimes it slowly improved.

I hope you feel better soon...

Clo

Lab,

I'm glad that you have stayed on top of your labs and scopes. So very important.

The flares did just sorta run their course. I too would eat pureed and the SCD diet to help-but after a week or so if I still had nausea I'd reach out to my GI so he could try to get the Remicade level increased. Depending on how bad it was we'd start pureed/SCD diet, raise MX see if that helped, then petition to raise Remicade, and finally add in the dreaded Devils Tic Tocs Prednisone. That would usually happen fairly quickly.. But if there was any improvement even one step forward two steps back... Well I tried to play it out a little longer and tried to let my body respond. That's worked a few times and it's been a bad decision a couple of times too. It's a balancing act. I really would reach out and have my GI try to raise the next infusion amount though. Has he checked for antibodies? Sometimes when I'm reacting like that it's because my antibody level has gone over just a little.

MX affects me the way your MP does. I take it on Friday and am sick all day Fri after I take it to Sunday. But there are a lot of people that get the shot once a week or take the pills and they do not have my issues. We finally raised my folic acid intake to 3 mg a day and it's gotten better. Still... I understand why you don't want to raise the 6mp.

Are you seeing any improvement? How/when was your last scope?

Clo

Lab,
Did the forum just repost your response or are you needing clarification?.

Clo

Wondering about an obstruction. Esp. since you feeling nausea and like throwing up after eating. The cycle of rapid healing from Remicade, can unfortunately cause scarring that can result in obstructing. I think you need to get this checked out as well.

Lab,

So glad you are getting it checked out.

I've had 3 surgeries now because of the scar tissue in my colon and obstructions. 1st was the obstructions and a colostomy and the other two were due to inflammatory obstructions that were not "hardened" but they refused to stay open. That's why my GI changes my Remicade dosage...10 if I am showing any obstruction distress... And then he lowers it back down.

I was taking Milk of Magnesia daily for awhile.... But when they started me on 4 tablespoons of flaxseed daily I didn't need to do that any longer.

But I have after wondered... If the quick response to Remicade causes the excess scar tissue won't the raising and lowering if the amount be part of the issue? My GI said no because we are stopping the disease before it does as much damage.... But I still feel like a long tailed cat in a room full of rockers... Very watchful and uneasy.

Please let us know how it goes. Crossing my fingers and toes that it goes well!

Clo

So went for my scope the other day and it was all good! No sign of active disease!! So thankful for that! Though I’m still nauseous when I eat and confused why I still don’t feel right :/

Lab,

I have that happen too. We haven't found out why.

I hope you feel better soon.

Great news about no active disease though! Congratulations 👏👏🎉🎉

Clo

Lab,

Just a thought. When I am going thru these episodes I increase my fiber intake... (I use oatmeal, flaxseed l...), increase my hydration, and take 30 mL 9f Milk of Magnesia nightly. It gets everything "flowing" better which for some reason decreases my need for anti nausea meds.

Clo

Great news Labs',

Always good to hear good news indeed. Wishing you continued success.

Lab,

So glad to see you are in remission! Hopefully your "glitch" has worked itself out.

Clo