HealingWell
Search Close Search
☰

Rowasa- the morning after...

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/15/2017 6:30 AM (GMT 0)
The only way you can tell if it's worse is have the doc take a look-see asap. Especially since he put you on the Rowasa in the hopes of getting you off the steroid.

Are there hydrocortisone foams? Lower dosage?

q
Posted 10/15/2017 11:39 AM (GMT 0)
I was just scoped 9 days ago. I will go again in mid November. Sooner if things don't calm down.

I've done cortifoam before but it doesn't reach the area. Cort enemas are pretty much all I have left rectal wise. And until I'm not pregnant I don't have options with med changing. Praying I don't need prednisone.

I guess I have to ride it out and hope the cort enemas can at least bring it under control. After the baby is here something needs to change. I need off steroids.

**yesterday I went 6 times with d, blood, pain, cramps, mucus. I did a cort enema last night and this morning I went 1 time so far, formed, no visible blood, minor cramping. I must be mesalamine intolerant. Or something in rowasa is an irritant for me. Hopefully it keeps getting better.
Posted 10/15/2017 4:39 PM (GMT 0)
Definitely highly suspect and seems consistent with intolerance, and you really are best to stay away from mesalamine and ilk completely.
Have you checked into salicylate foods that you might be consuming? It might be a salicylate across the board.

Have you tried using the cortenema every second day with nothing between?

Are you still on your probiotics?

What about FMT?

q
Posted 10/15/2017 5:16 PM (GMT 0)
It's 1 pm where I am and I've still only gone once. Just ate lunch so waiting if that triggers anything. It's bizarre for sure Quincy!!!!

I'm going to do a couple consecutive nights of the cort e and if things remain calm I'll attempt every other. I'll stay there until after my next remicade infusion and scope which is a week after infusion. Then discuss going to 2-3x a week for the remainder of the pregnancy. I would rather play it safe.

I am still on visbiome probiotics which is the original vsl3 formula. I'm on 450 billion. I always wonder if I should switch. Uc or not I think we need probiotics but I'm not sure of this brand/formula.

I've asked my gi in the suburbs and the gi and cr surgeon at upenn about fmt. No one had info for me on how to pursue.

That's interesting about salicylate foods. I never even knew this could be an issue. I need to read more about it but I do consume in light moderation some of these foods. Decaf tea and apples (peeled) seems to be my biggest offenders. I'll have to research.

Thanks for talking with me about this. Not many people get it in my "real" world.
Posted 10/15/2017 6:36 PM (GMT 0)
Hi....you're welcome. One thing on here is there are lots of pperspe tives! Your situation is complicated and with you being pregnant and not able to take mesalamine, there are now less options rectally in enema form.

I think maybe changing probiotics is worth trying. I've never used VSL....but what I do use is in my signature. I would suggest trying the GH Advanced Gut Health in 50 billion.....or start with the 15 and double them over a bit of time. If they agree, then try the 50 billion ....at night.

I definitely believe in the use of probiotics....finding what agrees is a process. It's possible you need to find something else. I've never had a problem with any I used.....but the Reuteri is amazing. Im grateful that pb4 suggested them so many years ago.

Regarding the FMT....i don't know much about it, but definitely worth a try after pregnancy if things aren't improving on certain levels.

Someone asked previously if you had the ulcer biopsied....do you have results of it?

There are other biologic and ilk meds that might be an option in the future. Its also possible that after pregnancy and once hormones settle, your symptoms will too.

q
Posted 10/15/2017 9:41 PM (GMT 0)
Thanks Quincy! I've got 2 months worth of the visbiome left and then was thinking of switching. So I will def try what you suggested. I've been taking them in the morning. Is bedtime better?

I did have the area biopsied. As far as I know it came back as chronic uc. I never asked if it was tested for infection. Im going to get flexed again in November specifically to have it biopsied for numerous tests.

I'm so tired of this fight. I've had uc for over 5 years...symptom wise. I've been in remission maybe 2 years and not consecutively.

We are discussing entyvio next. Everything is up in the air until after the baby. Post partum throws a wrench in too ;)
Posted 10/16/2017 5:57 PM (GMT 0)
Hi...I always take the probiotics at bedtime. Read that a long time ago, so that's what I suggest.....the digestive tract isn't as active during that time. I have info about that and post it when I find it.

I suggest you get copies of all your test results. Ask for copies of the past results....you will at least have them at hand for your info.

I can well understand the exhaustion regarding dealing with this crap. I think for you being pregnant and things being on hold exacerbates everything.

Keep in mind you have learned that you cannot and should not use mesalamines, you can use the steroid and are trying to adjust the dosage, and your symptoms are better than not using it.

Are you on vitamin D and whatever vitamins/ minerals you should while being on steroid?

q
Posted 10/16/2017 8:19 PM (GMT 0)
Good to know on probiotics. I'll start taking them at night. Thank you.

I have learned a decent amount and I'm grateful that I know my options without second guessing things right now.

I am on vitamin d and my prenatal and getting calcium where I can. I'll double check I'm getting everything I need.

Now if I can just accept being on steroid enemas for how ever long....until something is figured out.
Posted 10/17/2017 5:11 AM (GMT 0)
For sure keep me updated on how you're doing with the cortenema reduced shedule and bedtime probiotics.

I agree....a plan is good regarding having options.


q
✚ New Topic ✚ Reply
12