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Got a B on my colonoscopy. Doc says he’d like to see an A

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Ulcerative Colitis
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Posted 7/9/2024 10:24 AM (GMT -5)
Hi

61 years old. Male.
UC and PSC since 2016.

Taking Stelara every 4 weeks. Budesonide 6 mg every morning.
In remission since I started this treatment. October 2023.

Had most recent colonoscopy early June 2024. Had follow up office visit yesterday.

Before I woke up from the colonoscopy doc told my wife “he got a B”.

Yesterday, he said, I’d really like to try and get that to an A.

I said “I’m concerned about tweaking things. If it ain’t broke don’t fix it”.

He said I understand where you are coming from. But if we can reduce your inflammation some more, the odds of you having a flare, down the road severely decreases. You got a B because I still saw some inflammation during your colonoscopy and inflammation is never a good thing and I’d like to try and reduce that.

He wants to add 2 pills a day of 6MP.
He said he believes this will get me to an A on my next colonoscopy (“in a year and a half, if you stay in remission”).
He wants to give it a try. I said ok. He also said “your liver PSC will also really like you being on the 6MP.”

I didn’t ask him to elaborate.

-

What do you guys think?

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Post Edited (Rusty Barr) : 7/9/2024 7:27:22 AM (GMT-8)

Posted 7/9/2024 11:06 AM (GMT -5)
Listen to your dr, adding 6MP should get rid of the inflammation, definitely worth trying. They will order lab work to make sure that your liver enzymes stay in the normal range. Lets see if this takes care of those twinges you are having.

Good luck.
Posted 7/9/2024 5:56 PM (GMT -5)
FYI, Rusty-- Staypositive21 recently posted about taking Stelara + 6MP in the thread Mesalamine Enemas Rule, in case you haven't read it. Good luck with your Rx decision, always helpful if a UCer can get actual med user advice here. / Old Hat
Posted 7/10/2024 12:07 PM (GMT -5)
6MP works great!
Posted 7/10/2024 1:32 PM (GMT -5)
Rusty,

They should check your labs at least every 12 weeks... Then depending on you and your doctor they may extend that timeframe.

Id definitely try the 6mp. I believe I read It's much safer for males to take 6mp vs. methotrexate.

The inflammation has got to be brought under control. Inflammation can cause scar tissue, which leads to narrowing... Then structures/obstruction and then surgery. It doesn't happen to everyone but personally... I would not take that chance.

You were having so many issues and you are getting it back under control. You need to not forget what it was like when it was "bad". Sometimes when I feel a little hesitant to try something I have to force myself to remember those times.....it helps motivate me.b

Congratulations on the B and your doctor thinking they can get it to an A.

Clo

Clo
Posted 7/11/2024 1:46 PM (GMT -5)
Thanks everyone.

I’m a little nervous. I tried imuran in the past and I broke out in a red rash all on my scalp. I didn’t even know it was there until I went for a haircut. Then the young lady that cuts my hair said “what’s going on with your head?”
‘You’ve got red splotches all over your scalp”.

Immediately went to my dermatologist after that, who asked if I had tried anything new, medicine wise. She said it’s the imuran. “Come off it.”
So…I Stopped taking it and the rash went away immediately. Messaged my GI doctor. And He said, “I doubt that caused the rash, but ok, come off it”

Now, here we are probably almost a year later, and he wants me to go on 6mp. He Didn’t tell me about any similarities to imuran.

I go and pick up the 6mp at cvs, and then I learn, from the pharmacist…as he hands me the bag…”do you have any drug allergies?”

I tell him Imuran. He says…”hmmm, well, the 6MP is in the same family of drugs as imuran.”

He gives me the drug anyway.

So…I get on the internet…
One website said, some people have a reaction to one and not the other. Hmmm.

I’m going to wait a few days and then start the 6mp. 1 pill a day for a few weeks before upping to 2 pills a day.
2 pills is 100 mg. This is what the doc said to do….start with 1 pill. He probably knew the possible allergic reaction and that’s why he told me to start the drug slowly.

I wish he would have told me all this in his office.

Sigh.
Posted 7/11/2024 10:58 PM (GMT -5)
Yikes.

Just a suggestion... I'd keep some benadryl around and maybe an inhaler for a just in case.moment. The majority of allergic reactions are usually headaches or rashes...and sometimes your body adjustes to the medication and sometimes it doesnt...so there's even more possibilities down the road on what you may have to decide.

Be watchful Rusty. Any issues call your doctor.

I'm sorry that you are going thru this--and it would have been nice if your doctor had told you everything in his office.

Please let us know how it goes..

Clo

Post Edited (clo2014) : 7/11/2024 8:03:54 PM (GMT-8)

Posted 7/12/2024 9:59 AM (GMT -5)
I’m thinking I’ll start this at 1/2 of one pill a day for a week. Then. Slowly increase if I tolerate.
Posted 7/12/2024 7:29 PM (GMT -5)
Yeah, it's not nice that your gastro was kind of flip, saying he wants you to go from B to A on the scope when you've finally been feeling well. Plus you had the negative Imuran reaction in the past. So I can understand why you want to start the 6-MP at the lowest possible dose-- do you own a pill cutter? It's your body and your right not to rock the boat unnecessarily. Good luck and try not to stress over having this tossed at you, but you might want to find a different gastroenterologist at some point, depending on who is experienced with IBD treatment in your area. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/16/2024 3:58 PM (GMT -5)
Rusty,

Checking in... How's it going?

I forgot to remind you that individuals heal at different speeds. Getting into remission and then healing is sometimes a one step forward and 2 steps back dance. So a B.grafe on a scope, instead of an A, can happen -- but please keep in mind that long term slight inflammation can also be occurring. Hopefully this additional medication will help with that....and perhaps lower the possibility of antibodies.

Hang in there!.

Clo
Posted 7/19/2024 8:32 PM (GMT -5)
Bumping this back up to the top....

Checking in to see how you are doing.

Clo
Posted 7/23/2024 4:01 PM (GMT -5)
Hi.

Thank you.

No news because I haven’t started the 6mp yet.
I’m a big chicken.

Work has been very busy. And I thought I’d wait a bit before I start that.

Right now my plan is to start with half a pill of 6mp this coming Friday 7/26

I’m due for my next 4 week injection of Stelara this coming Monday. 7/29.

I had my first real blip since October of 2023 last Thursday. Woke up in the night with watery diarrhea. Caused by what I ate for dinner. I’ve been a little wonky since. Today I felt the urge to go in the afternoon and it was just a blop of mucus (some light pink tone to it) in the bowl and on the paper when I wiped. Sigh.

Post Edited (Rusty Barr) : 7/23/2024 1:08:41 PM (GMT-8)

Posted 7/23/2024 5:44 PM (GMT -5)
It can take 6MP about 3 months to work. Probably best to start taking asap, especially with the "blip" you are experiencing. It sounds like you may have a flare starting. Having a "B" sounds like there is lingering inflammation. Hopefully the 6MP can knock that out, but you need to take it for that to happen lol
Posted 7/24/2024 2:59 PM (GMT -5)
Rusty,

I don't know that I'd wait for the weekend. If there are any issues you may need to go to the doctor or hospital and weekends (for me) are the worse time to try to get help when I have any type of reaction.... BUT if the medicine has any side effects that will impact you going in to work and your PTO... Well that makes you lean towards using Thursday night or Friday for the first dose.

It's complicated I know.

Please remember that many people take meds with no difficulty, but be cognizant.

🤞🤞🤞crossing my fingers that things go well.

Clo
Posted 7/26/2024 8:35 AM (GMT -5)
Hi

I started the 6mp yesterday. Thursday 7/25/24 at noon. Took just 25 mg. (He wants me to work up to 100 mg a day.)

Going to stay on the 25mg for a week. See what happens.

No allergic reaction so far. But it’s only been a day. I’ll keep you posted.

Also I don’t see any benefit yet. Probably have to get the dose up to see that.
Overall I’m still on the Stelara every 4 weeks and the 6 mg of budesonide every day.
Since October 2023.

I’m doing ok. First movement, 6 am upon waking, usually stools or stools that look normal, but are a little loose. Some urgency in that I need to go, but I’m not running to the toilet.
Second movement usually within an hour of that. More loose than the first movement. But chunky.
Sometimes a third movement about an hour later, after that movement, usually that one is very small in volume, kind of little brown and sometimes tan/brown pieces down in the bottom of the toilet.
After that I’m usually good for the day without urgency. I don’t have to go again until the next morning, at 6 am, right after I wake up.

Thanks for all your support. I’m exceedingly grateful for each of you.

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Post Edited (Rusty Barr) : 7/26/2024 5:42:29 AM (GMT-8)

Posted 7/28/2024 12:02 PM (GMT -5)
Rusty,

I think that it takes awhile for it to build up in your system.

Glad you haven't had any reactions. Building up to a dosage works well for some. Sometimes when you increase the dosage it can be a little "bumpy" until your body adjusts.... For example you might have moments where you feel bloated, have gas or even feel nauseous.

I know methotrexate isn't the same... But with it, when I go off it for a little while and have to start back up... It takes me a while to get back to the prescribed dosage, and there are times where I have to stay at my current dosage for awhile or return to the previous dosage. (It's sorta like my Prednisone journeys only in reverse... Lol)

When I may have those bumps in my horizon I buy some mint tea --spearmint, peppermint or a blend, 7 up or Ginger Ale, and individual packs of Lays plain chips... Plus Zofran. I don't use them very much but they are there.... Plus at work everyone thought I just liked those drinks and the chips. (For some reason my coworkers associated crackers with illness--unless they were graham, fish shaped ones or the other cheese based ones... I just didn't feel comfortable with coworkers knowing about my health issues..)

🤞🤞🤞🤞Hoping it goes well and things improve. 🙏🙏🙏🙏

Clo

Post Edited (clo2014) : 7/28/2024 9:08:03 AM (GMT-8)

Posted 7/29/2024 5:42 AM (GMT -5)
It’s Monday morning. And I’m not feeling any effect… positive or negative. No red rash.

My plan is to bump up to 50 mg of the 6mp this Thursday.
Posted 7/29/2024 7:44 AM (GMT -5)

Rusty Barr said...
It’s Monday morning. And I’m not feeling any effect… positive or negative. No red rash.

My plan is to bump up to 50 mg of the 6mp this Thursday.

It takes awhile for the 6mp to kick in. When I took it, I believe it took around a month to see results.
Posted 7/31/2024 6:50 PM (GMT -5)
Tomorrow I’ll bump up to 50 mg of the 6mp.
He told me to start at 50 mg a day for 2 weeks, then go to 100 mg.

I’m just now getting to the 50 mg dose.

I’ll check back in later with an update.

Post Edited (Rusty Barr) : 7/31/2024 3:53:30 PM (GMT-8)

Posted 8/2/2024 12:24 PM (GMT -5)
Interesting his timing on getting me started with this 6MP.

I’m starting to slip a bit. Last two or three days…frequency in the mornings is up from 2 or 3 early each morning to 5 or 6 throughout each morning. A little urgency, but not crazy. Definitely looser. Not seeing the normal stools movement first thing each morning either…like I was. Sigh.

I was so great from October 2023 until July 2024.

Very discouraging that I’m slipping.

Praying the 6MP puts me back where I was sooner than later.
Posted 8/2/2024 1:10 PM (GMT -5)
Hi all: Have been in remission for about a year. Had to take an antibiotic due to Urinary tract infection. One week later, major diarhea, stomach issues. Anyone else had a reaction to an antibiotic which caused a flare or just my imagination?
Posted 8/3/2024 7:28 AM (GMT -5)
These drugs…you read online about side effects…yikes!

6mp.
Sheesh. All kinds of bad stuff.

He’s got me on 50mg a day and then after two weeks I am supposed to go up to 100mg a day.

If I get there, I think I’ll ask him for blood work before I make the jump from 50mg to 100mg.

-

I’m praying that while I’m doing this 50mg a day…I get back to where I was just a few weeks ago.
I miss the mornings where I get up and do normal stools.
Posted 8/3/2024 9:20 AM (GMT -5)
@Deecee, some people can take antibiotics & not have a problem. Try getting on a good probiotic to see if this will quieten things down. Any time I take an antibiotic my dr tells me to take a probiotic.

Good luck.
Posted 8/3/2024 9:22 AM (GMT -5)
@Rusty, there isn't a medication on the market that doesn't a list of potential side effects.
Posted 8/3/2024 9:36 AM (GMT -5)
Had mild symptoms on antibio but week after finish, got spots on legs, diarhea, body aches, etc. Thought I had the flu until red dots showed up on legs. Have been on a probiotic daily for years. Just wondered if antibio knocked my system out of kilter and therefore, into a flare.
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