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Proctitis Questions

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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)
 

scottsma

Well-known member
Location
Tynemouth,
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.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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.
 
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.
 
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Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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
 
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.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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...
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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.
 
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.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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!
 
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.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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. :dance:
 
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).
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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...
 
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.
 
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
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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!
 
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
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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:)
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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...
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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...
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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.
 
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.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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!
 
Looks like you are well covered :) Good news all around.

@sickinlk: I have never taken anything stronger than paracetamol or ibuprofene for pain. I'm sure codeine or vicodin would do wonder. If anything I would only need to have half a dozen pills on standby for those rare, awful nights when I feel like I'm going to die. You're not the first to talk about the effectiveness of Remicade. Unfortunately nobody will give it to me here... too expensive and I'm not critical enough (aka. my 5-ASA allergy and pancolitis is not enough, I have to be dying to be eligible).
 
that's tight Francisk7. (tight means it sucks)
I wonder if the insurance companies will want me of remicade when I get to Canada.
also, do you know that ibuprofen is a big no no.

Common adverse effects include: nausea, dyspepsia, gastrointestinal ulceration/bleeding, raised liver enzymes, diarrhea, constipation, epistaxis, headache, dizziness, priapism, rash, salt and fluid retention, and hypertension.[15][citation needed] A study from 2010 has shown regular use of NSAIDs was associated with an increase in hearing loss.[16]

8)
ju
 
If you already were on Remicade my guess is that yes they will permit it. I understand you receive full health benefits as long as you receive your resident status.
 
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.
Sulphasalzine drugs cause colitis.
 
Copied from Admin Dave's response:
On the Lialda website located here it states:
Quote:
Mesalamine has been associated with an acute intolerance syndrome (3% of patients in clinical trials with mesalamine or sulfasalazine) that may be difficult to distinguish from an exacerbation of ulcerative colitis.
Depending on the study (there have been many) you'll see around 2-4% AIS for the various mesalamine formulations.
 
Acute intolerance syndrome does not equal "cause colitis". It's an allergic reaction. One I did experience, but as it says, we're the 3%.

Millions of people all over the world take mesalamine without any side effects to keep their colitis in remission.
 
In the medication pamphlet it lists colitis as a side effect. That's all I know. It digested poorly and caused pain, bloating , and urgency for me and a friend who has crohns.
 
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