Advice/comment needed from Quincy & other Rowasa/Salofalk veteran users

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Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 3/24/2009 10:30 PM (GMT -6)   
Around March 10 I started into a flare-up, symptoms were urgency & expelling mostly watery mucus. I upped my usual Colazal maintenance med & added nightly generic Rowasa. I've had a problem with retention that never happened before-- so I'm wondering if anyone else has had to deal with this. I insert the fluid without problems while lying on left side & stay in position for recommended 30 min. Then I turn over & fall asleep for 3-5 hrs. The next thing I know, I suddenly feel an urgent need to expel everything, apparently because I rolled back on my left side. So-- it's 4-5 AM, & I have to waste sleep time you-know-where! (Had flex-sig to 30 cm. last week, which showed "moderate" ulceration on one side of sigmoid colon, with lesser inflammation below.) This result was what I expected-- because (TG) I had not experienced tenesmus. Do you think the solution is to hang tough with my current meds-- or should I try to get Rx for stronger med????? The essential problem is feeling tired/cranky from loss of sleep + 2 or 3 too many throne sessions between 4-10 AM. (Some bleeding off & on.) / Old Hat (30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 3/24/2009 10:55 PM (GMT -6)   
Hi...well, yesterday was the FIRST day of feeling completely normal....so that's 3  weeks of nightly enemas (after the yo-yoing of tapering/reflaring) and I'm going till the end of the month for sure (especially till the hemmies completely heal as well). Remember my flare was extremely mild.

I'm uber impressed with your being able to hold the enema for 4 - 5 hours, and would think it normal if there's inflammation in the sigmoid/rectum to trigger a bm when there's something in there. I would qualify 3 ounces of fluid to be something. I think you're doing pretty good for considering the amount of inflammation and only 2 weeks of nightly enemas.

I wouldn't even consider to taper them for at least another month or more...

If you have dicyclomine, you might consider to take it before bedtime. Maybe don't eat after suppertime and take a fibre supplement to help bulk the stool a teeny bit to help slow it down a bit.

I wouldn't consider you in a place that only after 2 weeks of enemas that you'd need stronger intervention unless you were getting worse.

My take on it anyway....it could also be that the increase of Colazal has increased some of the bowel activity and it might ease once the moderate ulceration quiesces.

Hang tough.....but it does get a bit much when things change on us veterans, doesn't it?

Are you on probiotics as well?

quincy


*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 3/25/2009 5:13 AM (GMT 0)   
Old Hat,
I have the same problem. I've become less tolerant with Salofalk enema. I can't retain it for more than 2 hours. My solution is to use Salofalk suppositories (2 at a time) at night, so that I can have a good night's sleep. And I use Salofalk enema in the morning after my morning runs.
I need to go soon after administering it. It seems like a waste but I think it's better than nothing.
I also use Entocort (steroid) enema on 2 nights a week instead of Salofalk suppositories.
I had no problem retaining the Salofalk enema when I was diagnosed with UP in 2006. I don't know why I can't tolerate it now.
Hope you will feel better soon.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema, Salofalk tablets 1000mg x 3/day, Entocort enema (tapering).
Supplements: Calcium with Vitamin D, Vitamin B Complex, Vitamin C and psyllium capsules (Metamucil).


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/25/2009 4:39 AM (GMT -6)   
Must be the in problem as i am having trouble am on asacol foam 2g nightly and dont seem to be able to hold it for longer than 30 mins before rushing to toilet only once in the week since starting have i managed more than 2hrs before going to toilet like burnabygirl had no trouble when first dx but was on pred foam then.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed
  Asacol foam 2g nightly 19/3/09
  Prednisone 60mg 19/3/09 tappering after2wks


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 3/25/2009 4:49 PM (GMT -6)   
Interesting replies-- thanks very much, all. You're so right, Quincy, change can upset veteran UCers, too! I'm trying to hang tough-- so I appreciate your encouragement. So far what seems to be helping most is Colazal + bland low fiber diet. My usual probiotic is a 4-strain natural yogurt, but I suspended it the past week as it was apparently adding to the expulsive problem. One concern I had about the generic Rowasa: maybe its preservatives are bothering my ulcerated part. (Potassium metabisulfite, sodium benzoate) ??? Sorry to read that you're also having problems, Burnaby Girl & Lambkins. / Old Hat (30 yrs with left-sided UC; presently fighting off flare in sigmoid colon)

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 3/25/2009 10:01 PM (GMT -6)   
hi Old Hat- you're always so helpful to me-your advise is always thoughtful-knowledgeable, when my daughter had recent symptoms on her way to england
i told her to up her colazol and to take the xifaxin-she recovered in a few days and so far so good- i don't know if you've tried the xifaxin but it's always been used
by my daughter when things start stirring up -so i always wonder if it's that or the colazol increase-also it was used until her 6mp kicked in during her 1st flare along with colazol.
she went off the xifaxin when she felt better. just a thought -thanks
Mom to 20 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 2 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned-done started again
today 2/13/09
mircette birth control pill for cramps started around 2003


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 3/25/2009 10:30 PM (GMT -6)   
Hi, Rey-- many thanks for your kind words. Actually, my gastro did Rx Xifaxan after the flex-sig last week, when I was purely obsessed by having to take sick leave from work. However, that drug comes with a warning that says it can trigger "a strong urge to evacuate"-- words that immediately fill me with terror! So I've been staying with mesalamine & hoping not to need steroids. Whenever I develop ulceration, though, it seems to require a lot of rest to heal, regardless of which med(s) I take. Last night went a bit better & if that continues I should be over the worst by the weekend. I'm hoping not to need Depends when our weather warms up! (Glad your daughter's study abroad has worked out.) / Old Hat (30 yrs with left-sided UC; presently fighting off a flare in sigmoid colon)

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 3/27/2009 10:52 PM (GMT -6)   
Old Hat,

How are you doing? I don't have any advice, but wanted to check in. Hope you are improving. I'm starting to flare worse right now too. Is Xifaxan an antibiotic?
25 years old; diagnosed March 2007
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen; persistant rectal inflammation


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 3/28/2009 9:49 PM (GMT -6)   
Thanks, Sara, today I feel that the flare is turning around-- I hope! The 4-5AM expulsions really were the pits + it seems that my use of the plumbing repeatedly around that time caused some neighbor to complain to our apt. bldg superintendent that "a toilet is running overnight". LOL!!!!!! (Didn't it occur to them that somebody might feel sick?) Thankfully, my gastro has been keeping in touch, being concerned about my symptoms dragging on & causing anemia. There is a possibility that the generic Rowasa disagreed-- because I seem to be improving w/o it & on full-dose original Colazal alone. (I had used 2 bottles of that older Israeli-made stuff, then 7 bottles of Perrigo, finally 2 from Prasco in Cincinnati-- but I felt the worst at the point after I used the last Perrigo.)

To answer your question about Xifaxan, it's a non-systemic antibiotic that was used against Montezuma's revenge for many yrs in Europe, as it treats e-coli. But some UCers seem to get relief from it. Today my gastro said there's no need for me to try it if the Colazal alone is helping me-- so I'm just as glad if I don't have to! Sorry to hear that you're feeling worse. Original Colazal may be a possibility for your treatment because you have proctosigmoiditis, right? It helps a lot of us left-siders more than Asacol ever did. Keep us posted as to how you're doing. / Old Hat (30 yrs with left-sided UC ... [etc.])

Post Edited (Old Hat) : 3/28/2009 9:13:20 PM (GMT-6)

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