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4cm moderate flare - enemas not working...

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Ulcerative Colitis
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Posted 1/31/2021 2:35 AM (GMT 0)
Hi, just a brief intro. Had UC for about 3 years now since diagnosis. Pancolitis. Currently taking Azathioprine for the last 2 years and 4g Pentasa again for the last year.

I’ve been on enemas for almost 5 months now. Started off last year on nightly Salofalk retention ones for 1 month because of slowly rising calprotectin levels, then 1 month every other day. Things weren’t improving after also noticing blood on bm and paper. So it was back to nightly enemas.

During the time my GI did inspect the area and said there was a recent hemorrhoid and that was causing the gush of blood I had that morning and the dripping previous days. So there was a suspicion that the blood is simply from that.

In the middle of all of this I have been having genital issues (male) which my urologist diagnosed as prostatitis. After 4 months taking pills and herbs for that without improvement I saw another one who reckons its tense pelvis muscle and not prostatitis so Im on tranquilizers too nightly.

Problem is every time I have to do the enema I get that perineal pain provoked only from what I can imagine is from “holding it in” and tensing that muscle more, its like a vicious cycle.

Back to the colitis. I had a sigmoidoscopy 3 weeks ago and it turns out I have a moderate flare in the last 4cm. Rest that was viewed up to 30cm was healthy.

Salofalk retention enemas replaced with mesalazine 1g foam enemas for nights and intestifalk (budesonide) in the morning. Was doing that for about 10 days then had the checkup again, I was still seeing blood.

1 pill of Clipper 5mg (beclometasone dipropionate ) was added in the morning. Apparently this is a slow release steroid for UC. Been on that for about 10 days now and still seeing blood.

First bm in the morning is literally liquid. But feels like only whats in the rectum. Could this be the nightly mesalazine and doesn’t absorb like the retention ones did? I skipped it one night and it didn’t happen in the morning so I guess so...

2nd bm is maybe a bit better but still mushy, 3rd if I have one will be solid but thinner that usual and streaks of blood on bm and paper.

I notice a lot more blood if I push but on the sigmoidoscopy my GI said there was no sign of an active hemorrhoid.

Sorry for the long post. Im just lost and not understanding how after 5 months of enemas I have inflammation and blood going on..

Really appreciate any feedback.

Thanks.
1wish
Posted 2/9/2021 8:48 AM (GMT 0)
Hi, just want to update, also if anybody has any feedback or experiencing similar it would be great to hear from you.

Been on the beclometasone dipropionate for 3 weeks. Once daily, Still taking mesazaline 1mg foam enemas nightly and budesonide foam in the morning.

Every time I take the enema, especially the nightly one. I get the genital pain which I've been told is referred pain due to the pelvic floor muscle which I think I make worse every time with enemas because I try "holding it in".

Anyway, first BM is usually liquid which seems to be the previous nightly enema, sometimes I will evacuate the same night after 45 mins, most nights I keep it in.

Last 4 days I actually thought things were improving, no visible blood, solid BM's during the day.

Took the calprotectin sample yesterday, again no visible blood. But as soon as I came back from the lab today. Had what I thought was a great BM, solid, normal looking. Went to wipe and bam, bright red blood.

I'm really very frustrated and the only place I don't feel alone is on this forum..

I guess Ill have to wait for a week to get the lab results but fear the worse, likely a high calprotectin level possibly even influenced by the blood (even though I saw none yesterday)

1wish.
Posted 2/9/2021 6:35 PM (GMT 0)
Ask for suppositories.
Is there any way this could be a hemorrhoid Or a fissure?
q
Posted 2/9/2021 7:02 PM (GMT 0)
Do suppositories work better than the foam?

Thing is first time I started bleeding, my GI had a look in office and said it was a recently open internal hemorrhoid. Yet when she did the sigmoidoscopy after that day, there was no hemmie just moderate 4cm inflammation, so Im really unsure and cant really see for myself..
Posted 2/9/2021 10:41 PM (GMT 0)
I have a hemmie that bleeds sometimes and it always freaks me out. I use a steroid suppository for a couple days and that takes care of the issue. Worth a shot to give them a try.
Posted 2/9/2021 11:02 PM (GMT 0)
I am taking budesonide foam enemas in the morning which is a steroid one yet hasnt been much help it seems.
Posted 2/10/2021 3:31 AM (GMT 0)
Try mesalamine supps during day and steroid supps at bedtime.

q
Posted 2/12/2021 1:23 AM (GMT 0)
You're the first person with UC I've heard talk about the genital pain and I have something like this too! I haven't gotten an answer other than recently being told by my urologist that it's prostatitis and I should try Prosta-Q.

What are your symptoms? Mine does seem to correlate with my IBD inflammation at least a little bit. It's like the tip end of my genitals almost has a burning sensation and can burn when urinating. I've been tested for UTIs and STDs and everything was totally normal. It's not absolutely terrible but man even a 2/10 pain in the genitals can be awful.
Posted 2/16/2021 9:18 AM (GMT 0)
Hi @Quincy, cant seem to get hold of the suppositories lately here. I'm seeing my GI tomorrow. Unfortunately still bleeding even after 2 boxes of Budesonide foam enemas every morning, that's 28 doses. I read on here that it causes thinning of the colon?? is that true?

I haven't read that anywhere else and has me worried.

@David1991 so 2 urologists simply put it down to my meds I take and not enough water but then the 3rd said it was prostatitis so I took meds for that for 4 months only for another urologist to tell me my prostate is normal size and he reckons its referred pain to the genital area. I get the burning but its a short while after urinating not while. Then I get weird sensations in the perineal area.

He put me on tranquilizers for 3 months and stopped the prostate meds, I'm a month in and I have to say its a lot less, hardly ever. But I fear all these enemas I take just make it worse because I tense the muscle without realizing.
Posted 2/16/2021 6:17 PM (GMT 0)
Hi Wish...yes, long-term continual use of steroid rectals can cause more fragility in the rectum.
As stated in your other thread, it's definitely probable that if you have a hemmie, you are nicking it with the nozzle.

There are rectal suppositories called Rectal rockets that are compounded for internal and external hemmies. Look into them, and enquire at a compounding pharmacy what are usual meds used to treat hemorrhoids. Then request them and an rx from your doc so you can deal with them.

q
Posted 2/17/2021 9:53 AM (GMT 0)
Hi, I will bring this up with my GI.

I just got my lab results back and calprotectin is 400.. So I'm not very pleased about that..

Also a few other points worry me that weren't there before.

Low uric acid (3.1), high Sodium (147) and high TSH (4.48)
Posted 2/23/2021 1:19 AM (GMT 0)

1Wish said...
Hi @Quincy, cant seem to get hold of the suppositories lately here. I'm seeing my GI tomorrow. Unfortunately still bleeding even after 2 boxes of Budesonide foam enemas every morning, that's 28 doses. I read on here that it causes thinning of the colon?? is that true?

I haven't read that anywhere else and has me worried.

You might want to try morning and night. I recently finished 4-5 weeks of budesonide foam enemas as well. Once per day improved things, twice per day seemed to have me in remission.

Unfortunately, after having stopped 1-2 weeks ago I'm not basically back where I was


1Wish said...

@David1991 so 2 urologists simply put it down to my meds I take and not enough water but then the 3rd said it was prostatitis so I took meds for that for 4 months only for another urologist to tell me my prostate is normal size and he reckons its referred pain to the genital area. I get the burning but its a short while after urinating not while. Then I get weird sensations in the perineal area.

He put me on tranquilizers for 3 months and stopped the prostate meds, I'm a month in and I have to say its a lot less, hardly ever. But I fear all these enemas I take just make it worse because I tense the muscle without realizing.

How old are you?

Did the first 2 urologists give an explanation of how the meds could cause it?

What medication did you take for prostatitis?

Lastly, what tranquilizers were you put on?


For what it's worth, now that I think about it it did get more consistent/worse when I was taking 1 mesalamine enema + 2 budesonide foam enemas daily. Yes 3 enemas daily (1 a.m. and 2 p.m.). I remember having the thought that I wondered if they were related. I haven't really thought about it much since this thread but yes the genital pain/burn has gone down a lot / almost entirely since stopping the enemas. I don't know how to explain that especially since the enemas should be bringing inflammation *down* but just saying it seemed to correlate.
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