HealingWell
Search Close Search
☰

Pregnancy & UC

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted Today 5:56 PM (GMT 0)
Makes no sense bleeding is a last symptom...maybe its an obvious one noted, however, one would still be flaring because of the progression and regression of inflammation.
Give that a thought...

q
Posted Today 10:05 PM (GMT 0)
I am in a similar situation getting out of flare. I seem to be moving in right direction but not there yet.

My tools are mesalamine enemas, hydrocortisone enemas and homemade vit E enemas with some supplements (from Briggs protocol). To make those I wash used bottles from mesalamine enema fill them with warmed distilled water, add vitamin E and supplements from the capsules, shake well and administer. It’s annoying to make them but I feel they are more effective for me than mesalamine enemas. This is in addition to 2.4 gr Asacol oral that I continue to take.

What really helps is hydrocortisone enemas. But I try to limit them because my recent dexa scan showed osteopenia. I am petite small frame 63yo female so I am at risk of osteoporosis even without steroids.

I am close to normal except some blood streaks in some of my stools. If I do hydrocortisone enema I don’t see blood the next day. But with any other enema see blood again as I tried to rotate them.

Maybe I am tapering too early? Is there “rule of thumb” how to go about it? I appreciate if someone could clarify that.
Posted 12/4/2021 7:18 AM (GMT 0)
Hello All,

Quick update- Still taking the steroid foam at night and suppositories during the day. Decided to give the enema a break as I felt I wanted to get more out of the steroid foam at night ie. 7/8 hours and taking the enema during the day I would think would be too difficult while walking around etc.

Anyway first stool is still watery/bleeding
Second stool bit watery still but slightly more solid at end (sometimes bleeding)
3rd stool is solid no bleeding & if I went a 4th time later that eve it would be solid no bleeding usually. Usually go approx 3 times a day. I find the noises in my tummy have increased also.

Anywho, I don’t feel like any of the meds are working so I spoke with my GI she advised me my stool sample (calprotectin) came back at 120!!! Here in Ireland, that’s considered a normal result anything under 150 is normal. She was quite surprised, think we may repeat it. She suggested I go on low dose of Pred to try get this under control particularly when pregnant as there’s a higher risk etc and I also don’t want to let this linger any longer so going to start in a couple of days and hope that I can try & enjoy the last 3 months of this pregnancy 🤞🏻
Both my GI consultant and maternity consultant reassured me that steroids are totally safe and it would be a lot worse if the flare got out of control for the baby than the meds itself.

She said unfortunately I’m on the max dose of the foam/enemas and suppositories.
Posted 12/4/2021 4:06 PM (GMT 0)
So the stool test didnt reveal anything else, or was it just calprotectin?

Could your GI take an in office look With a rectoscope? At least visually, it would state flare or not.

q
Posted 12/4/2021 4:23 PM (GMT 0)
Hi Quincy,

As far as I know it was just a calprotectin test but I’m not sure I must check. I really do think it is a UC flare, I went three times today mainly watery and blood and a lot of rumbling.

I am sending in another stool sample on Monday before I start the Pred and if it’s still normal il be requesting a mini scope which can be done in pregnancy to see what’s going on in there!

Its really frustrating! Trying not to overthink it too much but it’s all I seem to think about lately…Which probably doesn’t help with the flare itself!
Posted 12/5/2021 3:41 AM (GMT 0)
Hi...sounds like a solid and proactive plan. Hope you don't have to wait too long for the results.

You could also consider adding a fibre supplement with meals only.

Keep us updated.

q
Posted 12/5/2021 4:30 PM (GMT 0)
Thanks Quincy I will. Having a bad weekend of it unfortunately have mainly D and bleeding going 6/7 times.

So hard to get this under control, still taking all my meds.

Speak soon
Posted 12/11/2021 5:52 AM (GMT 0)
Hi Guys,

So I started Pred on Tuesday 7th of Dec 40mg tapering down for 8 weeks, I haven’t seen any improvement yet unfortunately. Have urgency/bleeding (quite a bit red blood) and loose stool diarrhea like. Going approx 5 times a day. Bleeding has definitely not improved.

Hoping I just need patience for this to kick in second time round, any words of wisdom?? I’m on the enema every night, and strangely enough I have zero issue holding it in, but I’m getting anxious with being pregnant all I want is to start to feel better. Cutting out gluten and dairy seeing if that will help..This flare was definitely better two weeks ago! So hard to get it under control…

Thanks guys
Posted 12/11/2021 7:53 AM (GMT 0)
Hi Susie....did you get the stool test results to make sure all is clear? I'm not meaning the calprotectin.

You've had a really rough go...I sure hope the pred kicks in soon. You need the break to somewhat recover before baby is born.

Hang tough,
q
Posted 12/11/2021 8:33 AM (GMT 0)
Thanks Quincy. Finding it hard to enjoy the pregnancy with this ongoing. No haven’t had the second stool sample back yet, what do I get them to check apart from Calprotectin, for infection is it?

The bleeding seems to drip down which I’m hoping is down to rectum inflammation. Seem to have a lot more than previous weeks. I have the Budenoflak foam and the enemas I’m choosing to use the enemas at night as that’s what got me into remission last time enemas and Pred, so fingers crossed.
Posted 12/11/2021 3:36 PM (GMT 0)
Susie far — your situation is almost identical as mine. I was dx 20 weeks preg. I’m 34 weeks and still dealing with this. It is sooo frustrating. I completely understand feeling like this has disease has made it really difficult to enjoy the pregnancy. Hang in there, hoping the pred kicks in for you! Just wanted to let you know you’re not alone.
Posted 12/11/2021 3:52 PM (GMT 0)
Hi Hmmisme,

Sorry your going through the same it is so frustrating isn’t it! Thanks so much for the message nice to know we’re not alone! Isn’t many with a flare mid pregnancy…I was feeling great before I got pregnant, most people seem to stay in remission as a result but not me. Are you newly diagnosed? Are you finding anything helping with your flare? That’s tough, I hope the last few weeks pick up for you!!
Posted 12/11/2021 3:59 PM (GMT 0)
Yes, I was diagnosed at 20 weeks pregnant. My flare is mild I would consider. I did great on nightly mesalamine enemas alone and my stool sample showed remission. Sadly, in the past two weeks bleeding and increased BMs started back up almost overnight. I stopped the enemas and my symptoms improved. I’m really hoping I’m not allergic to mesalamine. I am starting sulfite free mesalamine enemas next week to see how that goes. I may start oral mesalamine next week as well. It’s been really disappointing and hard to decide what is right when you have the baby to consider.
Posted 12/11/2021 4:56 PM (GMT 0)
Really? Your symptoms improved when you went off the enemas? I had a very mild flare early on but it was kept under control with the mesalamine enemas for a few weeks then at around 21 weeks, it started with diarrhea/loose stools increased BM’s and bleeding got heavier unfortunately so they put me on Pred the past few days plus the nightly enema.

Great that you were able to get on top of it asap while pregnant too, good on you! It’s so hard to know what is right and wrong, I feel like I’m trying to do everything right and yet not getting any relief!

So since you’ve been off the enemas your feeling better?? I hope baby is doing good and all the scans have been going well, I have a growth scan at 28 weeks.
Posted 12/15/2021 11:13 AM (GMT 0)
Hi Guys,

I’m on Pred the past week and the enemas at night not seeing huge improvement if I’m being honest but it may be slow. Just wondering can I include the Budenoflak foam during the day for even a few days?

Initially my GI had me on the foam during the day and enema at night and then added the Pred but can’t remember if she said it was okay to use all three medications or just the Pred and a nightly foam or enema.

Can’t get through to anyone at the moment, just a bit cautious as I’m pregnant.

Thank you so much
Posted 12/15/2021 6:11 PM (GMT 0)
I’ve used the budenoside foam while on steroids. They’re not the same medication and budenoside isn’t as a systemic medication as prednisone so doesn’t enter the bloodstream (of course there’s always a bit going across) — and I’m definitely no expert on medications! But I have used both at the same time. Not pregnant tho.
Posted 12/18/2021 7:20 AM (GMT 0)
Thanks for the reply FlowersGal unfortunately the Pred doesn’t seem to be working this time round, crazy as it sounds I feel like my symptoms have got worse.

Anyway my GI is doing a flex scope on me Monday so we can go from there, here’s hoping I won’t have to stay overnight! Nothing seems to be working..The bleeding has definitely got worse, it frightens me every time!
Posted 12/18/2021 5:37 PM (GMT 0)
So sorry! Let us know how the scope goes

If you do need to step up the dreaded medication ladder, for most of us, the fears we tend to have beforehand turn out to be quite minor compared to the relief from symptoms afterwards
Posted 12/19/2021 12:27 PM (GMT 0)
Thanks FlowersGal will keep you guys posted. It’s such a strange one I actually feel since going on Pred and continuing with the nightly enemas or foam I’m a lot worse.

I only used Pred once before and it cleared things up pretty fast. This time round the bleeding/nausea and knots in my stomach have increased in the last two weeks of being on Pred and I am now unable to hold in the enemas when I take them at night I’m up 2/3 times going to the toilet. Once the night/morning is over with come afternoon time I’m a lot better.

Could they be making things worse for me?? It’s so frustrating as I’ve always been so regiment with my meds.
Posted 12/19/2021 5:48 PM (GMT 0)
Nightly enemas worked great for about 2 months and then out of no where made my symptoms much worse. I went off of them and am doing better. Could be the mesalamine or sulfite used as a preservative. Might be worth taking a few days off of them and seeing. Took me a full 4 days to see dramatic improvement.
Posted 12/19/2021 6:35 PM (GMT 0)
Yes...try stopping the mesalamine enema and see if that improves, you haven't done that as of yet.

q
Posted 12/19/2021 6:58 PM (GMT 0)
No I haven’t gave them a break at all, thanks guys! Will let you know of my updates 😊
✚ New Topic ✚ Reply
123