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Well, back to daily enemas. Advice please

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Ulcerative Colitis
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Posted 1/6/2019 12:26 PM (GMT 0)
I tried to taper after a month of perfect stools and on daily enemas and I guess my body isn’t ready sad

I went to every other day and my stools aren’t the same. I also have my period so I understand the looser stools but I also see a tiny bit of blood today so back to daily enemas it is.

I’m worried that this will have to stay this way. I’m worried that I won’t actually get better and need more harsher drugs.

The unknown of this disease is truly horrible. Is there anyone who has experience like this where they went back to daily enemas, felt improvement then tapered successfully to twice a week?

What does the little blood mean?It’s streaks of red. Not too much and on the pieces after the first few.

ETA: my bottom is a little sore. Like it feels uncomfortable and like it’s sort of swollen slightly.

sad
Posted 1/6/2019 2:57 PM (GMT 0)
I'd get back on daily enemas for 2-weeks minimum and worry about the rest later.
Posted 1/6/2019 3:54 PM (GMT 0)
It's not unheard of to have to use the enemas every night indefinitely. I gave up trying to stop them as my symptoms would always start to come back when I tapered. Sounds like you don't live in the United States, so the cost should be reasonable.
The enemas have allowed me to stay in remission for years at a time, so I just continue to use them every night. If I start to get symptoms again, I use a second enema temporarily in the morning until I get the flare under control, and then taper off.
Posted 1/6/2019 5:43 PM (GMT 0)
Thanks for the replies. Yes I live in Canada. And thankfully have a good plan with work too.

I have been lucky thus far in my UC history. Dx in 2003 and really just minor blips along this ride with only meslamine orals and at certain points rectals. Last scope a year ago was totally clear.

Anyways, I will return to daily. Hoping that everyother day is least in the cards do me as I feel that then I have somewhere to go if I start to get symptoms again. I’m on max oral tablets as I never tapered even when I’m solid remission as I was too scared.

I see lots of people say that one bad poop ruins their day. How do we not do that to ourselves? I really admire those whose attitudes are positive and less doom and gloom as mine seems to be when I have a bad day.

My hubby is awesome listening to my poop talk so much!
Posted 1/6/2019 6:48 PM (GMT 0)
When should you start tapering? My doctor prescribed me 2 weeks of Pentasa enemas to get rid of some bloody mucus I was having, but the first 2 weeks on it my symptoms were worse half of the time and only now after 4 weeks I am finally feeling okay (but really just pre-Pentasa state and gassier) (my other doctor gave me 6 months prescription of Pentasa, so I've been using that). Do I keep using every night until I have no more symptoms? What if it's not reaching far enough or my disease is affecting more than the enema can reach?
Posted 1/6/2019 7:35 PM (GMT 0)
k1002....start a new thread for your question..
q
Posted 1/6/2019 7:44 PM (GMT 0)
kweeks.....your healing isn't fitting in with your mental schedule. One month of nightly enemas is really a short time with a flare.
You're back on the nightly enemas and stay on them for another month (since you have blood again) and see how it goes. Then consider every second night for equally as long.

Regarding your sore butt....do you mean externally? Call your doc and ask for Proctocedyl ointment.... generic I have is Proctol.

Hang tough.....please try to be patient. It is what it is, and you will know when you're ready to taper. Periods don't help, so if all is good after your next period...start to taper then.

Keep us updated.
q
Posted 1/6/2019 10:42 PM (GMT 0)

k1002 said...
When should you start tapering? My doctor prescribed me 2 weeks of Pentasa enemas to get rid of some bloody mucus I was having, but the first 2 weeks on it my symptoms were worse half of the time and only now after 4 weeks I am finally feeling okay (but really just pre-Pentasa state and gassier) (my other doctor gave me 6 months prescription of Pentasa, so I've been using that). Do I keep using every night until I have no more symptoms? What if it's not reaching far enough or my disease is affecting more than the enema can reach?

Ideally, you should be symptom-free for 2-months minimum before tapering anything. Don't rush it. It takes at least 2-months for the immune system to shut off attack mode, and go onto a quiet state.
Posted 1/6/2019 10:50 PM (GMT 0)
Hmmmm ok. I was only on them daily for a month. I’m going to do another month and fingers crossed, I get back to normal and then start to taper.

Thanks for this. My GI suggested a month and I did feel all was well but perhaps the inflammation wasn’t fully cleared.
Posted 1/6/2019 11:56 PM (GMT 0)
I max out at 12 salofalk tabs when I am starting to flare. Meslamine has been magic for me, and I only flare when I am FORCED to take antibiotics for whatever reason. Don't forget you can do an enema in the morning to beef up your remission regimen.
I'm currently on the IBD AID diet, and that really seems to be helping (after about 6 months of it). In the last week there have been 2 days where I only had a BM in the morning, and nothing at night. I still put an enema in just for safety. I may try tapering the nightly enema VERY SLOWLY here and there. My symptoms are pretty much non-existent at the present time. Apparently for me diet was an issue, as I must have been eating too much added sugar and flour.
I have been travelling a lot over the holidays, and have a trip to Florida in a week, Remission is awesome.
BTW, I am a Canadian living in the U.S. for work, that's why I knew about Salofalk.
Posted 1/7/2019 12:54 AM (GMT 0)
Thanks all.

Yes, I know I need to be patient. Thanks for reminding me. It’s hard but I know it’s best.

I’m also very ok with staying on the ememas long term until I am sure I should try to taper.

So I’ll let you know how the week goes. The positive support here is priceless.
Posted 1/7/2019 4:48 AM (GMT 0)
The suggestion of a month is basically to start.....think of the turtle and the hare.
As well, you're new at this again.
And reconsider maintenance enemas. They will serve you better in the long-run.

q
Posted 1/7/2019 8:58 AM (GMT 0)
Kweeks hang in there you can come and talk poop here as much as you like. Periods often mess with my UC, hopefully it settles down again.
Posted 1/12/2019 1:12 PM (GMT 0)
Hello, I wanted to update. It has been about 5 days nights of daily enemas and also my period has of course finished too.
My stools are normal with a enemy coating. Once a day in morning when I wake up.

I did see maybe a couple thin lines of red on the last piece of stool today. I assume blood, maybe from a delicate rectum as it was a little hard coming out or maybe from tomatoes.

If blood, where would it be coming from if it’s only seen last piece and looks like a couple lines on stool?

I will stay on these for at least another month but I am thinking longer daily and then taper.

If you have been successful at tapering enemas to everyother day, how long did you initially stay on them?

Thanks
Posted 1/12/2019 4:41 PM (GMT 0)
Thin line could be internal hemmie....considering you mentioned hurt coming out. Was it more from rectum (throbbing) or more at the anus (sharper pain)?
It took me as long as I wanted or needed regarding symptoms. I did fast tapers, slow tapers and slooowwwwer tapers.

I suggest you see how you do in a month and taper for a month or so every second night. Just don't taper between ovulation and period....after is good. You could also add suppositories to the between days if you are wanting to taper gradually dosage-wise.

Its a varing process....the butt basically rules the game.

Awesome to hear you are doing better.

q
Posted 1/12/2019 7:19 PM (GMT 0)
Thanks. I felt a little pain as the hard part of the BM evacuated. So I guess anus? It could be internal hemmie but I didn’t have any at my scope I had a year ago.
Posted 1/12/2019 7:45 PM (GMT 0)
One of my docs told me that blood is always the last symptom to disappear. 1x BM per day is a very positive sign!! smile)
Posted 1/13/2019 5:26 AM (GMT 0)
Blood isnt a last symptom to disappear. That would friable fragile tissue. Inflammation doesn't disappear once the blood does....there is still a bit to go.

q
Posted 1/13/2019 5:27 AM (GMT 0)
Kweeks...could also be a fissure.
q
Posted 1/13/2019 10:14 AM (GMT 0)
I am just repeating what the doctor told me......i figure as an ibd specialist she's seen a few cases of colitis in her time. I only had a remission once since i got colitis and my experience was that blood was the last symptom.
Posted 1/13/2019 8:23 PM (GMT 0)
pd....I understand your point. My docs say some things that are more surface fact....i want to know more about some things. Think about how things heal....that statement isn't helpful.
But in saying that, many only view bleeding as flaring. But bleeding stopping is an increment in healing (in this situation).....doesn't mean all is good. I haven't bled in eons, but I still flare. That's my point in using rectals and hoping it adds to perception of flaring and healing.

Respectfully,
q
Posted 1/14/2019 1:39 PM (GMT 0)
I think blood can be a last symptom to go away for some, myself included (can be a small patch of inflammation). There are no absolutes with UC.

I'd stay the course and not worry.
Posted 1/14/2019 4:45 PM (GMT 0)
Are you bleeding now, ipoop?

q
Posted 1/14/2019 5:30 PM (GMT 0)
Yes, have been off-and-on for a year+ now with 2, solid bms a day without urgency. My FCP and CRP tests show normal levels for inflammation. So, we're not talking severe inflammation here. Rather it is very mild. So, I directly contradict that "bleeding must mean very bad inflammation" statement you repeat lol.

Mild inflammation can bleed. It can be a last or lingering symptom when everything else is okay. I am more suggestive of a mild proctitis flare than anything else (purely based on symptoms) smile

I am getting a scope within the next month to see what's going on, and make sure I am not totally delusional.
Posted 1/14/2019 9:52 PM (GMT 0)
Conversely, unless you stick your head down the toilet after every BM it can be difficult to see blood. I've had flares where i thought there was no blood until the diarrhoea subsided, then it became easier to see the blood with solid stools as it was more separated from solids. I am much more scared if i have diarrhoea than if i see a bit of blood - because as long as you are having solid BMs it means at least a part of the colon has healed.

Have seen a few proctitis patients on ths forum say that blood is their only symptom. But what would i know about it ;) ;) ;)

Post Edited (poopydoop) : 1/14/2019 3:00:29 PM (GMT-7)

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