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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/19/2021 5:35 PM (GMT -6)
Hi everyone.

Im feeling very lost right now. I had been on retention enemas since last November until January due to calprotectin rising. Had no blood or mucus at the time.

Transferred over to foam enemas nightly and budesonide in February due to the inflammation being last 4cm.

Still wasn’t helping after a month and I asked for suppositories instead due to pelvic floor issues with holding in enemas. Urologist gave me tranquilizers for that too which Ive been on for 2 months.

about a month and a half ago I started bleeding, colorectal surgeon saw me and said the blood was a cut probably from inserting the enema incorrectly. Gave me Flagyl that completely destroyed me and I still have diarrhea some days 3 weeks later.

He saw me again, had a look and said no hemmies and the cut had healed, didn’t see signs of inflammation. I also didn't see blood because every time I went it was diarreah.

Continued with supps and started seeing bleeding again last week, went back and he said no hemmies or cuts and is probably the colitis. 4 days later Im still bleeding and for the first time in a long time, I went today and only mucus came out... so now Im even more worried.

I go 2-3 times a day usually. Ive been on Imuran for 2 years. Pentasa since late august, recently changed to 4 big pills a day vs the pellets, 1.2 each pill. Also on clipper 5mg x2 daily for 3 weeks now (type of steroid).

Im very frustrated because I don’t understand how I still have inflammation after so many months of rectal therapies + all the other pills.

Do you have any advice?

Thanks
1Wish
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/19/2021 9:58 PM (GMT -6)
Hi... your inflammation seems to be very limited regarding your symptoms. I take it your doctor didn't check your rectum or he would have noted inflammation? I don't know the original location extent of your UC was... but if beyond, it seems your meds have been working if your symptoms are much improved overall.

Since the enemas tended to create an injury in the anus, they're are probably out for the time being.
What about trying steroid and mesalamine suppositories daily. When do you usually have your bms?

q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/20/2021 3:24 AM (GMT -6)
Hi Quincy,

So the colorectal surgeon performed a rectoscope in the office the first time, which detected the cut he thinks from the enema and was worried of infection so gave me flagyl which gave me diarrhea for 3 weeks which probably helped in healing the cut as no solid bm was passing through.

A week later he did it again and saw the cut had healed and said he even saw no signs of inflammation.

Fast forward about 10 days and I had to see him again because I started bleeding again and he did the scope again and said no cuts, no hemmie but the mucosa looked a bit inflammed therefore he reckons it is the colitis and said to mention foam enemas again to my GI next week.

If I do have to go back I guess I will have to be very careful..

I didn't know there were steroid suppositories.

Im worried about steroid suppositories and enemas since I saw on here the post about how it can permanently thin the colon walls.

My original diagnosis was pancolitis and recent rectoscope by my GI said it was limited to 4cm. That was about 2 months ago.

I usually have bms in the morning. Thing is, if I have the supps nightly I usually will go in the morning but lately its been loose and I go couple times morning and maybe afternoon, this is since taking the antibiotics.


If I dont take a supp, some days I dont go, Im never frequent or always go at the same time. Its like I go from multiple to constipated quite often.

Last couple of days Ive started to notice intestinal noises.

1Wish

Post Edited (1Wish) : 3/20/2021 3:31:46 AM (GMT-6)

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geezernow
Regular Member
Joined : Nov 2017
Posts : 256
Posted 3/20/2021 4:35 AM (GMT -6)
SEEMS to me, you need to consult with a gastroenterologist instead of a surgeon. Have you ever had a colonoscopy? Hope you feel better soon.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/20/2021 5:01 AM (GMT -6)
Yeah Ive been with my GI for years, it was her that referred me to the colorectal surgeon to determine where the blood was coming from as it was suspected hemorrhoids, turns out it wasn’t.

Had plenty of colonoscopies, last one she did was a sigmoidoscopy and determined 4cm inflammation
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/20/2021 11:17 AM (GMT -6)
4cms is tough to deal with, but suppositories are the best bet for you at this point...as to not anger the previous injury.

Yes, steroid comes in suppositories. I dont know the dosage variations tho, but you can ask for the mesalamine supps to be used up to 3x daily. Or one steroid and 2 mesalamine or one steroid and one mesalamine. Regardless...you have to treat that area.

I suggest probiotics, and maybe try a fibre supplement with meals to fluff and soften stool since you mention up and down regarding consistency.

q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/25/2021 8:59 AM (GMT -6)
Hi Quincy. I mentioned the steroid suppositories to my GI but it seems in Spain those don’t exist. Just the foam enemas.

Anyway my recent calprotectin is 505 up from 400 a month ago so now I have a colonoscopy on Monday.

Back on the 4g retention enemas at night and budesonide foam in the mornings until then and after my GI takes a look, will let me know what to do..
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/25/2021 11:22 AM (GMT -6)
Hi...didn't realise you were in Spain. It's awesome your scope is on Monday! Let us know the outcome and med plan.
Ask him to take a pic or two for you...unless youre awake to see what's going on in there.

Thanks for the update...
q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/25/2021 11:25 AM (GMT -6)
Oh I hope Im not awake, looking forward to the fuzzy sounds and then zzz, Ive had about 5 now and I remember the first one where I was sedated but still kind of awake and could feel the air and tube move around. Not nice!

I will get the pics after though.

Hopefully it will be a good diagnosis.

Cheers
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/25/2021 5:45 PM (GMT -6)
Yes...those fuzzy sounds!!!
Good on the pics...hope prep goes smoothly 😊

q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/27/2021 4:04 AM (GMT -6)
I had some blood before but the abx definitely messed me up. In fact almost a month after Im still having diarrea everyday.

I was starting to get sort of solid again last week, then my GI put me back on Salofalk enemas and Budesonide foam in the mornings. Ever since starting I have diarrea again.. I don’t know if its that Im reacting bad to the enemas, still bad from the abx or is the colitis...

When I put the enema in, I can hold it and sleep no problem.. I understand that means theres not much inflammation? Or maybe I just got used to it...
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/27/2021 11:45 AM (GMT -6)
Hi Wish! I second the probiotics.
Regarding the enemas...maybe try one type for a few days then the other and see which one seems the offender. How many times a day are you going?

Hopefully, the scope will reveal what's going on.

q
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1354
Posted 3/27/2021 3:43 PM (GMT -6)
I’m one of those who doesn’t tolerate flagyl well. It makes me extremely nauseous and sickly to where I can’t eat. I refuse to take it orally any more. Unfortunately I am prone to diverticulitis attacks. Previous one dr put me on levaquin and the last one it was Augmentin.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 3/28/2021 11:39 AM (GMT -6)
Since starting the nightly enemas and morning intestifalk (budesonide) Ive been having diarrea, 2-3 times a day. Today has been the worst. Diarrea like a tap, same as I was on the antibiotics... I haven’t even started the colonoscopy prep yet and been 3 times..

I start taking the 2 pills in one hour then the sachets for the prep.

Really don’t know why all of a sudden I have this terrible diarrea.

Starting to worry me what the outcome of the colonoscopy will be, trying to stay positive but its hard sad
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 3/28/2021 8:05 PM (GMT -6)
Discuss with your gastro doc before the scope that you've had diarrhea since the flagyl, and that the enemas haven't helped at all. Ask him if biopsies would show if you have a bacterial infection.

Hope prep went OK....let us know how tomorrow goes.

q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/11/2021 9:42 AM (GMT -6)
Hi, quick update.

I had the colonoscopy couple weeks ago and the diagnosis was the same, inflammation of last 4cm, rest of the colon looks good.

Treatment was to stay on 1g Salofalk suppositories nightly and 2mg Intestifalk (budesonide) foam enema in the morning.

So far Ive seen 0 improvement.

I go 1-3 times a day, mushy or diarrea, sometimes its an “attempt” at a solid but ends up being mushy and loose. Then drips blood at the end even with the mildest push

Ive not had proper solids for more than a month and blood all the time.

I don’t understand what else I can or why the budesonide is not stopping the bleeding?

I worry Im taking this with no improvement and potentially worsening my colon with the steroids.

Any suggestions?

Thanks
1wish
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1487
Posted 4/11/2021 10:37 AM (GMT -6)
Have you been tested for C diff?
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/11/2021 10:41 AM (GMT -6)
I did a few weeks back before the colonoscopy and it was negative. I think if it was c diff I would ba having a lot more diarreh and very watery?

Day before yesterday I had diarreah and was the only bm, then yesterday no bm, then today mushy twice so its a bit random but no solid
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quincy
Elite Member
Joined : May 2003
Posts : 33224
Posted 4/11/2021 12:44 PM (GMT -6)
Thanks for the update.

It's great all above the 4cm is without inflammation.
What exactly were your biopsies pathology throughout?

It doesn't seem match your bm consistency... wonder if you cut out the Omega (if you're taking it?), added probiotic and low amount of fibre supplement?

q
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/11/2021 12:52 PM (GMT -6)
So Im still waiting on the biopsies or haven’t heard at least. I have an appointment with my GI Wednesday so Ill hopefully find out.

Ill cut out the omega vitamins, you think that can cause blood and diarrea? Always thought it was good for us being anti inflammatory.

Currently taking 1 probiotic pill every morning called Aflorex, cant really tell if its helping.

I have a big tub of psyllium husk powder that I tried once but the stuff wouldn’t dissolve and was kind hard to drink...

Oh and taking Spasmoctyl before meals because my GI said diarrea may me because my colon is constantly tensing and therefore this happens so this is an anti spasm pill.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/14/2021 11:41 AM (GMT -6)
Hi, so today I had a solid BM this morning with a gentle push and loads of blood, dripping and all. I saw my GI also this afternoon and she said I should do a Prednisone taper, start at 30mg for 5 days, then 20mg for 5 days, then 10mg for 5 days and then back onto the other type of steroid called Clipper which is 5mg until I see here again in 3 weeks.

The idea is to hopefully get me out of this flare by jump starting it via Pred since the rectal meds are really doing nothing.

I was a little worried about Prednisone and the current covid situation but she said I shouldn't be worried and its only going to be for 15 days.

Wish me luck,
1Wish
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2107
Posted 4/14/2021 3:58 PM (GMT -6)
If you still have blood at the end of your 5 days on 30 mg, you probably should check with your doc before tapering. Usually the pred taper starts @40 mg for 1-2 wks and then taper 5 mg a week. I have tapered every 5 days in the past too. But it's usually best to see improvement before you start to taper otherwise pred won't help and it's likely you will have to do a pred taper all over again.

Even with Covid worries, better to get the flare under control than to continue to flare.

Did your doc suggest a different maintenance med since what you were using clearly isn't working?
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/14/2021 4:03 PM (GMT -6)
I will bear that in mind about seeing improvement before tapering, she recently did a colonoscopy therefore I believe she doesn’t think its that bad even though I drip blood hence the quick taper.

My maintenance meds are azathioprine and mesalazine and the nightly 1g Salofalk suppository.
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/17/2021 5:21 AM (GMT -6)
So I started the 30mg on the 15th. Yesterday was the first day I went twice with no blood!
Today however, on the 2nd BM, there was a little blood at the end which has brought down my high. Took the 3rd pill today.

I know its only the 3rd day but since I saw no blood yesterday and today I have, has me a little worried. Is this normal though?

1Wish
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1Wish
Regular Member
Joined : Mar 2018
Posts : 264
Posted 4/24/2021 11:53 AM (GMT -6)
Hi, looking for some opinions as I cant get in touch with my GI today, I’ve been tapering prednisone from 30mg, tapering every 5 days and Im on my last day of 20mg today and supposedly going to 10mg tomorrow.

I have had no blood for the past 4 days BUT today at the end of the BM I did... some drips and on the toilet paper..

Would you suggest staying on the 20mg a couple more days before going to the 10mg? Would it even help at this point? Would it mean I would have to be on 10mg more after?

Thanks
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