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Bleeding again :(

Chronic Illness Forums
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Ulcerative Colitis
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Bleeding again :(  
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/3/2019 4:15 AM (GMT -7)
So this morning I had blood on the tp when I wiped. Was still on 35mg pred but it just doesn't seem to be doing much. The only change is that I've skipped my mesalazine foam enema past two days as on holiday... Could this be the reason for the blood? Feeling very depressed this morning.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2159
Posted 2/3/2019 10:17 AM (GMT -7)
That stinks. I would for sure go back to the enemas and see what happens. You could also alternate 37.5 and 35 mg for a couple of days and see if that also makes a difference.
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda, prednisone, Imuran (sfRowasa nightly)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri). Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.
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quincy
Elite Member
Joined : May 2003
Posts : 31459
Posted 2/3/2019 10:47 PM (GMT -7)
Yes....alternating taper....not that it hasn't been suggested before.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14284
Posted 2/4/2019 6:17 AM (GMT -7)
When was the last time you had endoscopy? Given your struggles it might not be a bad thing to have a flexible-sigmoidoscopy or colonoscopy to see exactly what is going on up there.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Even Superman couldn't hold back the insurmountable force of UC urgency. But I bet those spiffy spandex shorts would at least hold in the mess!
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/4/2019 6:23 AM (GMT -7)
Only had one in November when diagnosed...
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14284
Posted 2/4/2019 6:29 AM (GMT -7)
They might ask for endoscopy before long. If the bleeding continues at 35mgs of pred, then I believe you are going to have to go for either thiopurines (azathioprine, imuran, or 6mp) and/or biologics (remicade/humira). Biologics are the faster of the two, by far. Bleeding at that high of a dosage of pred, means you have some pretty severe underlying inflammation going on and you need MUCH stronger maintenance meds to get off of the pred (the mesalamines solo aren't enough for you).

Certainly keep your gasteroenteroligist up-to-date on the symptoms you are experiencing. I wouldn't mention one-day episodes, but I would mention new trends (like if the blood is consistent for the next several days).

Slower pred tapers aren't miraculous. Neither are alternative dosing day-to-day. Those techniques are most helpful when you're 12mgs or less a day of pred, and trying to wean off the very last bit of it.

Oh, and could you do us all a favor and add a signature with your current meds? Click the My Profile link (purple bar near the top of the page). Click Edit Profile. Enter the meds and dosages you are currently on within the Signature box and then click Submit. I had to to some digging in your post history, just to remember those things smile

Post Edited (iPoop) : 2/4/2019 6:32:42 AM (GMT-7)

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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/4/2019 11:32 AM (GMT -7)
thanks ipoop. Haven't had any bleeding today but have had an increase in bms although they appear fairly normal and solid...

I had blood tests recently which showed my inflammatory markers were almost normal so I don't know. Who knows what's going on/ I'm going back to the enemas tonight now I'm home from my holiday.

Have added my meds in signature smile
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4347
Posted 2/4/2019 2:50 PM (GMT -7)
it is possible any isolated day of bleeding - especially just on TP - is a small tear for a recent stool, or a hemorrhoid. Or it could be 2 days w/o enema, or it could be drop in taper. Hard to know which.

I would monitor situation and see if bleeding becomes more of a pattern.

Overall inflammation could be low and still have a patch of bleeding irritation near rectum.

If there is a pattern of bleeding, then treating as if it is inflammation and doing enemas, or doing look-see to see if it is inflammation become the two choices. You might do enemas and not worry now if bleeding stops.

good luck
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/4/2019 3:50 PM (GMT -7)
thank you. I've started the enema again tonight. Just finding it's giving me awful cramping pain but i will try to persevere. It just seems strange as had a lot of bms today but been solid and well formed, no blood.
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 4644
Posted 2/5/2019 6:27 AM (GMT -7)
I'm bleeding again, too. Sucks. sad I agree with what iPoop said. Is this the first time you've been on pred?
35 years old; diagnosed UC March 2007 (prob. pancolitis; couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking again May 2018. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Singular & Allegra; Xanax. 40 mg Pred 2/1/19; 50 mg 2/4/19
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/5/2019 6:38 AM (GMT -7)
Been on it continuously at varying doses since middle of November... What dose are you on? So sick of it
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/11/2019 3:29 AM (GMT -7)
So am feeling very discouraged sad I'm starting azathioprine tomorrow but am still not in remission. stuck on high dose of pred and still have symptoms...my IBD team are useless and hard to contacts and I feel like I'm never going to get out of this flare. I've already been on pred 3 months and I don't know whether to continue to taper despite symptoms or go back up to 40mg....I feel like the aza is going to take ages to work...
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14284
Posted 2/11/2019 6:25 AM (GMT -7)
How bad are your current symptoms (#bms a day, how bad is urgency, are you seeing blood in toilet water or on tp when wiping)? I wouldn't continue a taper until the aza is confirmed working in a few months time,
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Even Superman couldn't hold back the insurmountable force of UC urgency. But I bet those spiffy spandex shorts would at least hold in the mess!
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/11/2019 6:33 AM (GMT -7)
Thanks ipoop. So at the moment I'm mainly having issues in the morning ..going 3-4 times in first hour of getting up. Some urgency. had small amount of blood on tp only this morning which is first time in a week. Pain wasn't as bad this morning. Usually rest of day I'm ok. Sometimes tummy starts to make noises again in evening. Still doing the foam enemas.
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14284
Posted 2/11/2019 6:36 AM (GMT -7)
I'd not panic over what you describe. If it is limited to the morning, and your first hour of being awake, then that's quite manageable to live with (given annoying and frustrating). It could be a lot worse. Stay the course for a while.
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/11/2019 7:11 AM (GMT -7)
Yes you are right. It isn't too bad. Just worried about tapering the pred and starting aza.
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2159
Posted 2/11/2019 11:01 AM (GMT -7)
If it makes you feel any better, I have been on pred (started at 20 and had to go up to 40 plus cortenemas) since the beginning of November and am still going between 30 and 27.5 mg every other while my body "adjusts" to the lower dose of pred. I started tapering the cortenemas the second week of January and worked my way down to the pred dose from 40 after I was able to switch back to sfRowasa.
I started Imuran just over 3 weeks ago, I did two weeks at 50 mg and am now at 100. I also want off the pred so badly, but the last thing I want is to start bleeding like crazy again, too. The amount of patience required is excruciating!
I am generally only going once or twice a day now, sometimes only in the morning and sometimes morning and some other random time of day (generally evenings but not always). I haven't seen any major bleeding since December, although I did have some tiny, freckle sized specks of blood in otherwise clear mucus yesterday morning. I see my doctor Wednesday and hope to get a little bit more focused with my taper schedule. Initially he said 5 mg every 7-10 days, but to pay attention to symptoms and adjust if things look/feel like they are getting worse. I tried to go to 25 mg and had a big uptick in frequency for a few days, so I went back to 30 and am now working my way down again. My big thing has been pain lately, not a constant ache in my sigmoid, but these funny, on again, off again pinching sensations that really hurt! So frustrating, I wish there was an easy answer to this.
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda, prednisone, Imuran (sfRowasa nightly)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri). Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/12/2019 2:21 AM (GMT -7)
It's so frustrating and difficult. how are you finding imuran? I'm worried about taking it. Do you think it's helping yet?
I'm still stuck on 30mg pred and having bad cramps every morning sad how are you doing today?
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2159
Posted 2/12/2019 5:40 AM (GMT -7)
I have a miserable headache, but I blame it on the storm system blowing through at the moment. I decided to take 27.5 of pred again today, I felt well yesterday and i do think imuran is helping, but it won’t reach a true therapeutic dose for a couple more weeks. UC wise things look good so far today, but that can always change. Hang in there!
43 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda, prednisone, Imuran (sfRowasa nightly)- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri). Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/12/2019 8:40 AM (GMT -7)
That's positive. I'm starting tonight on imuran and I hope I will be ok!
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14284
Posted 2/12/2019 8:49 AM (GMT -7)
Good luck, let us know how it goes.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Even Superman couldn't hold back the insurmountable force of UC urgency. But I bet those spiffy spandex shorts would at least hold in the mess!
profile picture
ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted 2/12/2019 10:02 AM (GMT -7)
Thanks ipoop. Hoping for a good outcome but I'm very sensitive to meds...
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted Yesterday 2:08 AM (GMT -7)
So I've done 3 days on 50mg imuran...seem ok so far. Just wondering when to increase to 100mg..think they said after 5 days but this seems quite quick?
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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poopydoop
Regular Member
Joined : Dec 2018
Posts : 169
Posted Yesterday 2:25 AM (GMT -7)
I started on 100mg from the first day, if that helps...
F36, DX pancolitis 2015
Last remission 2016
(Moderately severe) left-sided colitis since 2018
Have tried nearly all drugs and quack options available; considering surgery
Currently meds: xeljanz + mesalazine +/- entyvio
Probiotics: vsl#3 and mutaflor
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 136
Posted Yesterday 2:51 AM (GMT -7)
Thanks. How long did it take before you saw improvement?
current meds: 30mg pred, 4.8g mesavant xl, 1g salofalk foam enema
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