Coffee & Food Q

Best of luck WayneTX, hopefully this will do the trick.

Success with this disease comes in baby steps … and sometimes it’s 2-3 steps forward and then a step back. Chart your progress on a weekly basis instead of daily at this point. Seems you are definitely headed in a positive direction with decreased trips and urgency. Hoping you see more improvements after today.

And again, don’t worry too much if you have a slight increase in symptoms around the 6 wk mark since this will be your first 8 week stretch between infusions. I’m talking about mild cramping and a slight increase in frequency and urgency. But call your dr if things go downhill.

Are you starting to feel any better?

It can unfortunately be a slow progress to remission. Especially after suffering through the torture of this disease for so long and just wanting to have a normal life back.

Another Q for the Veterans here................my prednisone prescription ended on July 7th and my crazy appetite eating level has gone away now so I'd like to lose the 21 pounds I gained over the 56 days on prednisone. I received my third IV of Renflexis on June 28. I am not scheduled to have another consult with my Gastro Dr. until August 2. So basically I am just running now on Renflexis alone until at least Aug. 2nd. My next infusion (4th) is not until Aug. 23rd. I am still having bad days just not as bad on urgency level control as before. Still going at least 8x per 24 hours. I am wondering now if the urgency part will return again since I am no longer on prednisone? Anybody been there before? I am definitely not in remission yet.

Post Edited (WayneTX) : 7/9/2023 1:09:37 PM (GMT-8)

Yeah, your symptoms might return within a week or so if the reflexis isn't working.

I agree you could ask about Uceris (generic name is budesonide) instead; however, not sure it will work that well since even pred never took all your symptoms away.

Quincy,
That's ok. There are times when family is just family. She's alot older than I am and she is just different than I am. I'm not saying that's right or wrong... Just different.

She is opinionated but usually good hearted. The older she gets the more paranoid she gets though....and she equates willpower with a better outcome for almost everything. I've let it go for a long time but frankly I'm just tired of hearing "if I ate this or didn't eat that I'd be oh so much better...." Like my UC or Crohn's can be controlled by diet. This last poke just really bothered me.... So I just told her that when she's ready to play nice she can call me.

So far she must not be ready to play nice cause my phone is not ringing. Lol... I'm a patient person though so we'll see.

Clo

Aww Wayne. I hate to say this but it sounds like oral prednisone still wasn’t enough for you and you may have benefited greatly from the hospital stay with IV steroids. There is no way I would have gotten off prednisone if I was still going 8 times a day. I doubt budesonide would have any noticeable symptom relief if prednisone hasn’t helped too much either. It is much milder than prednisone. That poop number will most likely get worse if the new medicine is taking a while to kick in. Are you in pain as well/having bad cramping? How is your bleeding?

WayneTX,

No fevers, cramps, nausea? Has the smell changed...gotten worse? Are you having more mucus when you wipe? I know they are very personal questions...The green color sorta concerns me.

When I started pooping a lot of green it was because of something green colored that I ate or an infection. When it was an infection there seemed to be more of it being expelled, it was slimier and eventually the smell changed. I did not run a fever with those infections... But they did get bad enough to cause issues.

So please just be aware.

Also... The number of times you are going seems like a lot...

Clo

WayneTx,

It might just be you going thru the healing phase... I'd keep track of it and tell your doctor when you see them.

If you start going to the bathroom more, you can't make it to the bathroom in time, blood pressure changes, heart beat rhythm seems off, fever, nausea, pain, smell and color change keep occuring.... I'd call the doctor..

I just had occasional times where one thing would occur... I was still getting around, having good and then bad days...Then I suddenly my blood pressure dropped like a rock..and my heart beat got very slow. We made it to the hospital, but I was very ill and I was septic. It surprised me. I thought that I would have felt worse... I ignored the greenish mucus and the white mucus wrapped stools. (Which was from the deep infected ulcers from within my colon) This doesn't happen to everyone... But I don't want anyone else to go thru what I did.

So just be aware and watch yourself... And make sure you share with your doctor when you see them. They might want to do a quick in office scope to see what's going on. My GI and CRS have both done that. It's not comfortable but it only took a few minutes and then we knew...

Hope things keep improving for you every day. Hang in there!

Clo