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Rowasa- the morning after...

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Ulcerative Colitis
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Posted 10/10/2017 12:39 PM (GMT 0)
I think I've asked this before but I can't find the thread. I started rowasa last night for the first time in over 2 years. I stopped because it was making things worse and have been using cort enemas ever since.

I'm trying to get off cort enenas so right now I'm going every other night cort/rowasa.

Anyway I used rowasa last night, I was fine retaining it. No issues thru the night but some rumbles and gas. This morning I went to pee and some white liquid came out. Is this normal? Am I not absorbing it?

Then about 30 minutes later I had a bm. Solid but covered in white/tan. I'm now pretty crampy. The crampiness has gratefully been gone the last couple weeks. Is this normal?

I don't have this with the cort enemas. I never expel liquid or have discolored stool because of it.

I just want to make sure this is ok. I'm praying to switch over to rowasa completely.
Posted 10/10/2017 3:00 PM (GMT 0)
Normal....you will NOT absorb it all.
I have crampiness based on what I eat sometimes and how quick my peristalsis is before a bm.

Try them every second night for a week and taper the steroid by 2 rowasa nights then one steroid night...etc.

Let us know how it goes.

q
Posted 10/10/2017 4:40 PM (GMT 0)
Thanks Quincy. I was hoping you would see the post and give your input. I was going to stay at every other night for 2-3 weeks then drop cort and see if I could stay on every other night rowasa.

You think a week or so of swap then 2 rowasa 1 cort? I just want to do whatever is best to heal right now. I'm tired of this 2 inch patch!

Not sure what is best taper method anymore.
Posted 10/10/2017 10:53 PM (GMT 0)
I always see it covering my stool the morning after. I think q's protocol for tapering the cortenemas is a good idea. Hope this treats those 2 inches for you.
Posted 10/11/2017 2:25 AM (GMT 0)
Totes....your plan is a good one. All you can do is try it, see how you do and adjust accordingly.

Keep us updated for sure.

q
Posted 10/11/2017 11:42 AM (GMT 0)
Thanks so much guys. I'm going to see how the next week goes and then evaluate. I think I need an extended period of nightly enemas so I will taper accordingly.

Knowing that my body is handling rowasa is a huge plus. Maybe I'm one step closer to getting off the cort enemas.

I'll keep you posted. Thanks again!
Posted 10/11/2017 4:15 PM (GMT 0)
😎
Posted 10/12/2017 12:26 PM (GMT 0)
Morning ;) So last night was a rowasa night. I retained ok again with some gas throughout the night.

When I woke up this morning my stool was extremely loose and have the feeling I will need to go again. The patch of inflammation hasnt given me d or loose stools in 2 years...just blood and mucus.

Is this because of the way rowasa works vs a steroid enema? I just want to make sure the rowasa isnt making things worse again. I'm really not used to having unformed stool...I don't want to be going backwards. Do I need to give it time?

Sigh.
Posted 10/12/2017 2:33 PM (GMT 0)
The only thing consistent about UC is inconsistent bms. Try not to worry about a single day episode.
Posted 10/12/2017 2:47 PM (GMT 0)
Thanks iPoop. The rollercoaster can be so disheartening.
Posted 10/12/2017 5:12 PM (GMT 0)
I wouldn't base stool consistency with no healing.
Stick to the plan and see how you do.

If your bms get much worse, increase, you can't hold the enema...then its the 5ASA you cant handle most probably.

Is the steroid enema liquid?

q
Posted 10/12/2017 6:51 PM (GMT 0)
Quincy - I really think I have issues with the 5ASA which is why I stopped it 2 years ago. I rarely ever have diarrhea (maybe twice in 2 years) because of the location of the patch of inflammation. Its 5 cm right above my rectum/sigmoid juncture in my sigmoid. The issues I've had for the last few years have been blood and mucus.

After starting Rowasa my frequency has increased, cramping all day, upset stomach, etc. Then I do the cort enema and I am fine. But steroids work differently right? Yes the steroid enema is liquid. I don't have an issue retaining either.

My biggest concern at this point is I think the patch is steroid dependent. I have been mostly on them for 3 years and every time I stop the patch comes back. I was hoping the rowasa would get me off the steroids. Not to mention they affect me mentally because I am so sensitive to any steroid.

It can't be good to be using topical steroids for so long can it? I feel like if I give up on rowasa I am dooming myself to never get off the steroids. This is besides the pregnancy...its been on going for years.

I'm on such heavy hitting drugs that the fact that I have 2 inches that wont heal kills me. Especially since I'm still on steroids for it.
Posted 10/12/2017 7:59 PM (GMT 0)
Longterm steroid use, regardless of route, does have undesirable affect on us. Rowasa does have sulfites as preservatives (an allergen to some) and mesalamine (an allergen to some).
Posted 10/12/2017 10:49 PM (GMT 0)
Does it sound like a med refractory, steroid dependent type of situation? My gi is making me feel crazy by thinking it is.
Posted 10/13/2017 10:25 AM (GMT 0)
Yes, you are "dependent" on a steroid but it's not an addiction like with nicotine or an opiod. It just means without that steroid your symptoms get worse, which you already know. I guess by mild, he/she means it's very low dose, just rectal-route steroids. Waay better than being steroid-dependent at 20mgs of prednisone like I was before remicade.

Has this stubborn area been biopsied? Is it truly UC and not an infection?

Have you talked with the folks at Mayo or Cleveland clinics? Just wondering if there's anything out of the box you can through at it should rowasa not work (or your reaction to rowasa become unbearable).
Posted 10/13/2017 11:16 AM (GMT 0)
Yea that's exactly what my gi means by mild. He doesn't think it's too bad (right now) because it's cort enemas.

It was biopsied during my colonoscopy in January 2016 which is 6 months after it started. As far as I know it cane back as active uc. I'm getting another flex nov 15 and will push for a current biopsy and testing for anything else it could possibly be.

With mayo and Cleveland do you have to go there? Do they phone consult? I'm in Philly area now. I was going to go for another second opinion with a gi at u penn.

How long do you think I should give rowasa and with what symptoms before I give up? Last night was a cort night. I'm curious to see if things firm up and how I feel during the day.
Posted 10/13/2017 1:57 PM (GMT 0)
I'd give the rowasa 2-3 weeks or at most a month, when it works it is generally pretty fast. A research hospital like uPenn might be good too. I now go to the university of Vermont hospital gasteroenteroligy and they have suggested new things my old more traditional GI never did before. I haven't consulted with mayo/cleveland, myself. It's just a tough call, what do you do when the dependency is so darn mild? You hate to make big changes (like switching biologics) for such a small patch... Dunno.
Posted 10/13/2017 2:10 PM (GMT 0)
Thanks John. I feel the same. It's such a tough decision. And an awful spot to be in. I hate steroids if any kind. I'm making an appt with a gi at upenn that I met with once before. Hopefully she has some new insight.

I did cort enema last night. Solid bm this morning. Just my regular patch symptoms of minor cramping before I go, mucus and blood on tp.

Are you thinking the reactions I'm having to rowasa are just from rowasa and the inflammation? I'm doing rowasa tonight again. So I will see if this is a pattern. Even if I skip a night with no rectal I don't have d. It's so confusing.
Posted 10/13/2017 2:38 PM (GMT 0)
Seems plausible the rowasa doesn't agree with you, although intolerances are on the extreme end of the spectrum (not just gurgling and just one loose bm). Or maybe it just isn't getting absorbed enough.

When you take the rowasa tonight before bed, try and fall asleep and stay on your left-side for optimum absorption of the enema fluid. Rowasa instructions says lay on left-side as it absorbs within 20 minutes, but I've found that to be only true if the inflammation is well managed. Otherwise, it can take me 40 minutes, an hour, or much longer to absorb the bulk of the liquid. When we sleep on our back, tummy, or right-side the fluid tends to pool within the wrong areas and may never absorb in bulk. Thus you could wake up and have very loose bms as a consequence. A theory that's easy to test, I suppose. Maybe you don't toss, turn, or roll over a lot in your sleep and it's easy to stay on your left side all night. If you flop around all night like a fish out of water, like I do, then you can always put a few extra pillows around you to increase the odds you'll stay on that left side.
Posted 10/13/2017 2:50 PM (GMT 0)
Thanks for the tips. I'll give the pillow barricade a try smile

I put the enema in about an hour before sleep time. So I put it in and lay on my left side for at least an hour. I do toss and turn so I try to let it absorb as much as possible before then. I retain all night. My belly is also pretty big so I'm either on my left or right side when I wake up.

Maybe you're right that I'm just not absorbing it. I even tried sf. It's weird tho. I had zero issues w rowasa until my second child. It kept me in remission til I was 26 weeks last time. Since then the liquid is never absorbed. Nothing can ever be easy. Lol.

Thanks for talking thru things with me. It's hard talking to people who have never used these meds. Especially suspension enemas!!!! Ha.
Posted 10/13/2017 6:20 PM (GMT 0)
Thanks Connor. I'm going to swap a couple more nights. I felt so much better today after a cort enema.

I think I just don't mix with 5asa anymore. It sucks.

I get flexed in November. See another gi in December. Can't cover my bases anymore than I am. Hopefully something shakes out.
Posted 10/14/2017 4:42 PM (GMT 0)
Another night of rowasa and another morning with terrible symptoms. Retained it all night. Woke up to cramping and d and blood and frequency. My first bm was basically the enema liquid. Yesterday I went once with no blood and minor cramping. I only have really bad symptoms the morning/day after I use it.

I guess I have to give up on it. There must something in it that just doesn't agree with me.
Posted 10/14/2017 5:22 PM (GMT 0)
Sounds like an intolerance, sorry :-(
Posted 10/14/2017 5:29 PM (GMT 0)
Yes, confirmed. 😣

**Rectal (enemas/suppositories/foams)

Hydrocortisone (Cortenema)
Methylpredisolone (Medrol)
Hydrocortisone acetate (Anucort-HC, Anusol-HC, Cort-Dome, ProctoFoam-HC)
Budesonide (UCERIS Rectal Foam)**

Worth looking into another type of steroid methinks?

q
Posted 10/14/2017 6:06 PM (GMT 0)
This makes me so sad. I feel like I am succumbing to being steroid dependent...I guess I should be grateful that its only cort enemas and not pred...and hopefully stays that way.

Thanks Q. Yes I am going to have to use the hydrocortisone enemas. I will start nightly to hopefully get/keep this under control.

I've done all of the above...cort enemas are the only one that works. I've tried canasa and cort supps...and I leak when I use them. Just attempted uceris foam for 8 weeks and the patch increased in size. Cort enemas seem to be the only thing that works.

I'm terrified I've made the inflammation worse. Can that happen or is this just my body reacting the rowasa? I've gone 5 times so far today. Pain, blood, mucus, weird stool. I haven't gone that much since last summer when I started 6 mp. I'm scared for me and the pregnancy. I knew things could be rocky but after the same symptoms for so long and staying mainly stable that I wouldn't get to "hospital level". But this is how it started last time...like a freight train.

My head is spinning sad
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