Share Facebook


 
02-03-2013, 05:53 AM   #1
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Proctitis Questions

Hi. I had a flex sig done this last wed 1/30 and was told that I have Proctitis and at that time was put on canasa supps for 3 weeks. Originally being diagnosed with UC, I've already been on a few meds of the 5asa family. Been doing some reading just to refresh myself and educate myself of this new challenge. Am supposed to see the GI in a few weeks for him to see how I'm doing and to talk meds. But, in the meantime I still have a couple of questions and was wondering if you guys might be able to answer them for me. Thank you

-Can you please tell me what kinds of meds you currently use for your proctitis whether in remission or not?

-Do you have any idea as far as how long it might take once the Canasa is in you usually before it's safe for a bm? (I've needed the toilet about 1/2 hour afterwards once and didn't see the supp)
__________________
Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday, Canasa Suppositories (when needed) 1000mg 1xday

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
02-03-2013, 10:21 AM   #2
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
I can only speak for myself as we're all different as you know.I was dx in 2006 after a sigmoidoscopy and biopsy.I'd had bleeding,mucus and urgency.I was prescribed Asacol supps.2 per day,and loperomide up to 8 per day.I was told by my IB nurse to try to keep the supps in place for at least an hour if possible,so decided to sit and read during that time.(any excuse)They worked for me within a week and I use 1 in the evening only now, as maintenance.occassionally I stop using them (to see if I'm cured haha)and usually have a mini flare.Then it's 2 per day until it settles.I still have varying degrees of urgency and thats when the loperomide is VERY useful,although I have never used more than 3 per day.I count myself very fortunate that my Proctitis is managable,but I do get stressed out sometimes.Please let us know how you get on.
02-03-2013, 02:14 PM   #3
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Thank you scottsma Yes, I know everyone reacts different to everything in life. That's why there's so many diferent things to treat along with many different types of challenges in life. Only been on the supps for a few days but, they do seem to be working and my symptoms are slowly going down. Will keep you updated.
02-03-2013, 02:30 PM   #4
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
Hey there!

-Can you please tell me what kinds of meds you currently use for your proctitis whether in remission or not?
I do not have proctitis (I have pancolitis) but the medications are more or less the same depending on the symptoms, and they follow a gradual ladder in steps.

1. Anti-inflammatory (5-ASA)
2. Immunosupressors (6MP/Imuran)
3. Biologicals (Remicade)
4. Surgery

Steroids can be added to any steps if a bad flare needs to be addressed, and sometimes multiple steps of treatment are given all at once. It depends on your doctor and the approach he/she prefers.

I see you've been on Pentasa and steroids. The Canasa suppositories is just another form of Pentasa meant to deliver a more bioavailable dose to the problematic area.

The next step for you are immunosupressors, my guess is this will be discussed at your next GI apointment.


-Do you have any idea as far as how long it might take once the Canasa is in you usually before it's safe for a bm? (I've needed the toilet about 1/2 hour afterwards once and didn't see the supp)
30 minutes is the rule of thumb for most suppositories if you are unsure or if the pharmacist didn't say anything. They're absorbed very quickly.

Last edited by FrancisK7; 02-15-2013 at 03:16 PM.
02-03-2013, 03:12 PM   #5
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Thankyou Francis! That does help alot I knew some of this having been diagnosed for a bit. But, it's always nice to refresh!

I've been on these since I've been diagnosed in '96
-Sulfasalazine (Azulfidine)
-Canasa Suppository/Enema
-Famotidine (Pepcid)
-Mesalamine/Rowasa Enema
-Prednisone
-Asacol
-Azathioprine
-Hydrocortisone Enema
-Pentasa
02-03-2013, 03:19 PM   #6
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
Azathioprine is an immunosuppressive drug so all that is left are biologicals (Remicade) and surgery. It looks like you tried just about every type of 5-ASA medication there is.

Remicade has a ridiculously high success rate, it is extremely effective. If it is an option for you (it's expensive so not all insurance carriers will cover it) your GI will probably talk to you about this.
02-03-2013, 03:23 PM   #7
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Yeah, I know how expensive Remicade can be. He mentioned trying Aza again. But, wanted to actually see what was going on with me before discussing meds. I'm curious to see what he's got up his sleeve. Just got to wait for the next appt though...
02-03-2013, 03:24 PM   #8
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
Why did you stop taking the Aza?
02-03-2013, 05:15 PM   #9
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Original doctor pulled me off telling me that my liver counts were too high. Made it sound like it was a dangerous number. Got a second opinion because she wasn't helping me any and all she wanted to do was push drugs rather than actually help to see what was going on. My second opinion looked at the same results the first doctor looked at and mentioned that the results weren't as high as the first doctor made it sound. Then said that because of that I could try the Aza again if I wanted to.
02-03-2013, 05:24 PM   #10
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
If that's the case then I would definitely get back on Aza. Immunosupressors actually treat the disease whereas anti-inflammatory medications only treat the symptoms.

If your colitis isn't flaring and 5-ASA are enough to keep what little inflammation is there in check, like it is the case for many people, then all the better.

But when the disease goes in overdrive, it has to be addressed.

The toxicity and side effects of drugs like Imuran/Aza/6MP almost seem desirable compared to steroids. I'm on prednisone right now and I cannot wait to throw the bottle out the window.
02-03-2013, 06:11 PM   #11
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Yeah. That's why we're waiting to see what this doctor has to say. I too am on pred right now and am tapering. One thing I liked at my appt was that this guy admitted that he didn't want me on pred and said that I was too young to be on it so often.

Have to admit that the more that we talk the more anxious I am for this next appt with my new GI!
02-03-2013, 06:21 PM   #12
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
Hopefully you are anxious in a good way Stress is toxic to most people but it is even more so for people with this disease.

I've been waiting over a month for test results so I can begin Imuran. I cannot wait. I'm allergic to 5-ASA so my options were more limited. In my case MJ saved me from going insane from the pain but I'm looking forward the next step of my treatment, which I hope will be effective because I've been flaring for almost a full year now.
02-03-2013, 06:36 PM   #13
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
No, I've got enough stress in my life. I can't wait for the doctor's appt. So far the couple of times I've seen him he and the clinic where he's at have been really good to us.

I hope your time goes by more quickly too and that you'll be "back to normal" soon.
02-03-2013, 06:40 PM   #14
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
Were you ever given painkillers in all your years?

In another thread someone mentioned how they were put on morphine and steroids IV for a left sided colitis. I was just flabbergasted. I haven't so much been prescribed ibuprofene let alone any potent painkillers.

I think the US handles pain management a lot better (perhaps with some slight overkill).
02-03-2013, 06:47 PM   #15
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
No, I've never been on painkillers. I have been prescribed for tylenol 3 before. But, it was for girl stuff not IBD. Plus, I only took the stuff when absolutely neccessary. Was sent home from work because of my stomach pain one night though...
02-03-2013, 10:25 PM   #16
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Hey Francis, don't take ibuprofen...even if it is prescribed.
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
02-03-2013, 10:35 PM   #17
FrancisK7
Forum Monitor
 
FrancisK7's Avatar
 
Join Date: Nov 2012
Location: Montreal
I switched to paracetamol which is sad because ibuprofene has always been a lot more effective at removing my headaches or small pain.

On Friday I had one of these splitting headaches, spent the night under the shower. I was ready to go to the guillotine.
02-04-2013, 02:47 AM   #18
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Hey Francis, don't take ibuprofen...even if it is prescribed.
I won't take ibuprofen either, it would mess me up too much.
02-04-2013, 05:25 AM   #19
sickinlk
Forum Monitor
 
sickinlk's Avatar
 
Join Date: Jul 2012
Location: Donegal, Ireland

My Support Groups:
francis have you ever tried solphodine or codeine for pain. it wipes any pain I have right out.
may I chime in. I had proctitis at the start when I was dx'd. it was very stubborn. I bleed everyday for 18 months. I tried lots of the 5asa's. pentasa, asacol, mezavent and salofalk. I was on 2 rounds of steroids also but it was drug and steroid resistant.
when I came of the 5asa's it spread very quickly. in 2 wks it spread to 50cm up the left side. boy I had a sore bum, going up to 16 times a day.
anyway, I ended up on remicade and it halted it overnight. what a relief.
the only advise I have is to try putting the supps in after you've had the morning rush out of the way or put them in at night. that's what I used to do. usually night time the bowel is quieter and it would get a chance to work properly. in saying that not all gets absorbed so there will be residue that will come out.
best of luck.
ju
02-04-2013, 05:46 AM   #20
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Thank you for your input sickinlk Wow. I do feel your pain! How awful!! For the moment the 2 supps I'm on is twice a day. Once in the morning and once at night for 3 weeks. Not sure after that. Hopefully I'll have my next appt about that time.

Doctor wanted me off the pred and it's not doing anything for me anyway. Was going down every other week. But, looked at the calendar and I wouldn't be off it until april if I continued that schedule. Pharmacy mentioned going down every 7 days so, starting in the morning 2/4 I'll be trying that. By my calculations my first day off the pred will be on the 4th of March which is my husband and my wedding anniversary!
02-04-2013, 06:23 AM   #21
sickinlk
Forum Monitor
 
sickinlk's Avatar
 
Join Date: Jul 2012
Location: Donegal, Ireland

My Support Groups:
the dredded pred. I made up my own taper with the pills I had left once I knew they weren't working. I went down by 5mg every 5 days. maybe you could try that yourself. it wont do you any harm as long as you are tapering slowly enough. it would be nice to be off them well clear of your anniversary.
ju
02-04-2013, 02:13 PM   #22
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
I agree on both accounts. Trying to go from 25 to 20 today. See what happens first. I know the new GI wants me off this stuff about as much as I do. Keep you guys updated...

Be wonderful to get rid of this ahead of time. Cause we're flying to Maui on the 4th of March. All I know is it'll be great not having to pack the stuff to take with us
02-05-2013, 06:43 PM   #23
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Been having a bit of headache yesterday and today. But, also caught the cold that is going around at work so not sure which one the headache is from. Pretty conjested today. So, just going to wait for the moment to see how I do. Did go from 25 to 20 yesterday though. We'll see what happens first before deciding to go lower at either 5 or 7 days...
02-11-2013, 05:21 AM   #24
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Went down to 15mg on sat 2/9 without any problems. Will continue decreasing every 5 days till done
02-11-2013, 07:52 AM   #25
sickinlk
Forum Monitor
 
sickinlk's Avatar
 
Join Date: Jul 2012
Location: Donegal, Ireland

My Support Groups:
yea you are better of them if they're not doing you any good.

ju
02-12-2013, 08:13 PM   #26
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Got a call from the clinic today. Have an appt with the GI tomorrow so won't have to wait till after we get back from our trip in March He had a few cancellations and was able to get me in. Will update with info when I have more news...
02-12-2013, 08:16 PM   #27
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Good deal!!!
02-13-2013, 07:40 PM   #28
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Staying on the Canasa and Pentasa for the time being since it does seem to be helping. But, am to keep a watch since for now the inflammation is in the rectal area. If I see any problems we discussed or seem to be getting worse am to get my rear into the office. Otherwise, am supposed to have a follow up appt again in a couple of months.
02-13-2013, 07:48 PM   #29
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Sounds like a plan!

When I had first started treatment, I asked my GI how long should I wait before calling him if I thought things were getting worse. I was surprised when he told me, "Don't wait at all! I always see my IBD patients right away." It definitely boosted my confidence that I was finally in the right place.
02-13-2013, 07:58 PM   #30
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Yeah, it's nice to have someone who's wanting to treat you like that! He got my records from Kaiser and was able to take a look at them. But, admitted that it's easier for him to touch it and feel it so to speak rather than just look at pictures. Kind of nice to have a hands on type of doctor!
Reply

Thread Tools


All times are GMT -5. The time now is 02:45 PM.
Copyright 2006-2017 Crohnsforum.com