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Ulcerative Colitis
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Posted 8/14/2012 8:41 PM (GMT 0)
So been on cortenema since aug 8 ... Improvements noted:

Less rectal pressure

Stools are formed and turned brown, instead of black...

Only a minimal stain on tp still and it's pretty much maroon colored.

Every day mid day squirt of about quarter size brown blood tinged liquid. Better than last week which had the rectal pressure along with it.

So I' m still new to this but I see this as a good thing...


Things I'm doing:

Vsl#3 2 tabs three times a day

Tbs ground flax with yogurt ( thank you Quincy, I am off the oatmeal)


Phellostatin pills 3, 3 times a day

Canasa am and late afternoon

Cortenema every night



Questions:

I'm supposed to use cortenema for 10 days but he gave me 14 in case I needed them before he came back from vacation.

Do I use 10 then the last 4 alternate every other night?

Are you supposed to taper?


I think i am ready to start metamucil... Tablets or powder and should I start low dose?

I think that is why I still have the squirt mid day? I use flax in the am and it probably lasts only a few hours which is why I think if I take a Metamucil caps or powder in the afternoon it may help with that squirt?


Any suggestions, ?

Would love to hear what you think...I beleive this forum has the most amazing suggestions and ideas !!!
Posted 8/14/2012 8:51 PM (GMT 0)
Woohoo!!! you're doing so much better!

Didn't know you were on another supplement. I suggest you stop it for a few days to see if you improve in some comfort symptoms. Again...just trying, for not all supplements agree with everyone, no matter whether they're touted for digestive improvement.

The fibre, I use the capsules, but start slowly. I added one capsule with a meal for a day or two. Then added one capsule to another meal...etc.

Will you be seeing the surgeon at the day 14? If not, I would suggest you taper them anyway. I always suggest taper. That allows you to use the Rowasa on the days you're not using the steroid enema. If you get worse, the Rowasa might be a problem or you're not ready to go off the steroid enemas.

What you're expelling during the day is what's pooled from the friability and mucous production or what's downloaded from the sigmoid from your first bm, or a combo of the two.
No biggie....just says you're still inflamed.

q
Posted 8/14/2012 9:09 PM (GMT 0)
So you're saying to use the cortenema until day 10 then day 11 rowasa day 12 cortenema etc.. ..? And still use the canasa twice a day right?

That's what I was thinking too.

He comes back on the 27 th ...and I am calling tomorrow to schedule the follow up.

I'm scared to stop the steroid but with that plan I stop completely the weekend before he gets back...

So nervous about flaring again


Ok im excited to start the Metamucil

So the liquid squirt that I'm still having is pretty much ok at this point?
Posted 8/15/2012 6:55 AM (GMT 0)
Yes, that's what I was thinking regarding the taper since it's better to fill in the between day with what your goal is (to get back onto the Rowasa). If you get worse, then it might very well be the Rowasa....you could ask the doc for the sulphite free to see if that will improve the symptoms.

You also take the Canasa in the morning, Just thought of this (d'uh) the squirt could be in part from that (5ASA mixed with some stool, mucus and maybe blood). Since it's just a bit, seems not a huge worry...just note it. That might improve with the Metamucil or if you make any changes regarding suplements just to see if it makes a difference.

You do have lots of options regarding changing up some of the meds. If the Rowasa is OK you might be able to change one of the Canasa with a steroid suppository. You might not need the other Canasa....
Again...options to find the right balance for what your needs are.

When I have a bm in the morning, I sometimes have a small bit of stool about an hour later. I asked the doc about it and he said it's probably what's not come out during your first bm...remained in the sigmoid and then a bit slower to come down with the initial evacuation. . I do push it out with a bit of "force"... not that I feel it as needing to go...just that I "know" it's possibly there. Of course, it's not helping my fissure or hemmie if it's flared...but it's a routine to use the toilet regardless before I have my shower.

As usual, let me know how things are going.

Oh, don't be scared of going off the steroid enema...just think of it as "well, if this happens, then I have other options".

You have a good doctor who is willing to offer you prescriptions that can help. That's how my doc was, he always made suggestions of what to try.
Steroids weren't in the mix, but I didn't need them, because I always responded to the 5aSA positively.

Just wanted to add that when I started the Metamucil, I could feel "some" discomfort as it made its way through by me having a bit of gas discomfort.  The day I didn't feel it is the day I added another one to another meal.  Since I eat only 2 main meals a day, that's when I take them.    One can take 15caps daily max...so that's 5 eventually with each meal if you eat 3x.  I take 12 daily..so there's room to add if I want, which I do on occasion depending on what I eat.
q

Posted 8/15/2012 10:11 AM (GMT 0)
What do you mean by change one of the canasa to a steroid supp?

So go from the cortenema at night to the rowasa, use canasa once int eh am and instead of the noon one, change it to a steroid?

I can't beleive I didn't think of the canasa mid day as a possible culprit for the squirt ...hmmmmmm.

Interesting ...definetly going to note that....

Today I'm going to take a metamucil tablet...

I think I will start with am dose and see if that helps with the mid day squirt..

So how many days did you do just one tablet ? I'm wondering if I should just start with two? You're supposed to take them with food right?

I only eat twice a day too, so I'm thinking that would work best...


My goal is to be on rowasa at night and canasa in the am the. I'm sure I will start oral when I see him for a follow up...

I know what you mean about the BM about an hour later...that happens to me at times too... And I hate to push even though I want to because it usually means I will see blood which freaks me out!

How do you treat your heemie? That must be so frustratin becasue I can't imagine how you know hemmies vs flare?
Posted 8/15/2012 12:21 PM (GMT 0)
Sorry to hijack thread....but Q-- I plan to taper my cortifoam (used in the am for about 10 days and I use Rowasa every night) by stepping down to steroid supps (which are usually very helpful to me but this time needed a bigger gun, hence Cortifoam)  How do you feel about that and also I noticed you reccommended to jfem4 to change one to steroid supp.  How do you feel about sort of using them for maintenance...say one or two times a week?(in addition to nightly Rowasa)  I know it is better to use asa but I can't use Canasa and Rowasa (even nightly) doesn't always totally cut it.  Thoughts?

thanks and again jfem4..sorry for the hijack.

B

Posted 8/15/2012 1:29 PM (GMT 0)
Glad you hijacked!!! I was thinking the same thing??

Since I'm using steroid enema at night and canasa during the day, my worry is that when I stop the steroid, and just use the Rowasa and Canansa, that I will flare again.

I was thinking maybe once a week to use a steroid supp to just keep things at bay..

I don't know if that's ok though?

Have you noticed any side effects from the cortifoam?

What are metamucil wafers??

Posted 8/15/2012 4:28 PM (GMT 0)
Thanks, I always feel bad when I hijack.  SO far no side effects from the Cortifoam (used for 9 days so far)  As far as understand...the most amt of rectal steroid is in the enemas, next is cortifoam,than proctofoam, than steroid supp.  I seem to always need something melting right in the rectal area..I can't use Canasa as I get a rash...so steroid supp is my thing.  I wonder too if I can use it like 1-2/ week.  I have used Rowasa nightly forever but still need  a little something extra.

Metamucil wafers are pretty tasty...almost like cookies..I get  cinnamin spice flavor but they have others.  I used to use the powder, but got tired of drinking it.  I know Q likes the pills....I just hate taking all of those pills...so in that way the wafers are good.  You can get it in Shoprite, Target, Walgreens etc... look for it in the fiber area. 

B

Posted 8/15/2012 4:38 PM (GMT 0)
Yeah, I heard that, too...I should have asked for the foam...but, I guess the MD thought the enema would work better for me.

So you use Rowasa every night?

I'm about to go back to them, hopefully as I taper the enema. I used to use them with no issues, until this last flare...I just felt like I couldn't hold anything by the AM, and felt liquid coming out of me for hours.

Now that I think of it, I wonder if I was just so inflamed that i couldn't hold it?

Do you think that's possible?

The flare before this was the worst for me, and I used it BUT, they also had me on oral prednisone at the same time, so I wonder if that was healing me, and that's why it wasn't an issue that time?

I'm on day 8, can't wait to start to taper and see what happens...I'm just praying that i can tolerate it.

I'm starting some sore of Metamucil today if I can get to the pharmacy, if not tomorrow for sure. I'll look for those...how many and when do you take them?

 

Posted 8/15/2012 4:55 PM (GMT 0)
The apple Metamucil cookies are good! More like cookies. Just started them yesterday. 2 to a package. I started with 2. Afraid of gas
Posted 8/15/2012 5:14 PM (GMT 0)
That's what I'm afraid of...I'm thinking I will start slowly, too!!!

Do they come in chocolate :)

 

Posted 8/15/2012 5:24 PM (GMT 0)
Yeah, def. start slowly w/ any fiber is a good idea. I wish chocolate..I have never seen that. Just make sure you are not sensitive to any of the ingredients in the wafer. I take 2 packs/day and there are 2 wafers to a pack. I take one between breakfast and lunch and one pack after dinner. Make sure to take it 2 hours away from any meds. Drink alot of water with it.

I use Rowasa every night and have been for well over a year. It healed me mostly but as per my last scope...I still have very mild inflammation left over in the rectum. I am hoping that the foam will push me over the edge --I was considered mostly in remission. I did however get worse after the scope probably from all the fooling around w/ prep, biopsies etc...

Just a note...the enema (steroid or Rowasa) will reach further than the foam (into the sigmoid--foam-just rectum) I think it is likely that you were so inflamed and that is why you were having trouble holding the enema in. Cortifoam would be a good help w/ that from what I understand. This is my first time on Cortifoam. It is very easy to retain...but I thought the applicator took a little getting used to. Once you get the hang of it though, no problem.

Ok, good luck and I also agree w/ Q that you should be on an oral asa. FYI, I am on Lialda---I take 2 in the morning and I am done for the day.
B
Posted 8/15/2012 5:33 PM (GMT 0)
Apple crisp and Cinnamon spice! Having one now:)
Posted 8/15/2012 5:58 PM (GMT 0)
jfem4....I don't have time to answer this thread, but I, personally, wouldn't suggest the wafers to start.

They're not straight psyllium and have other products in them that could cause you some symptoms. If they don't work or whatever, your conclusion could be....fibre supplements cause me pain.

Start with the capsules if you're fine with them or mix a drink that has no sweeteners, etc...use your own drink. But again, I'm suggesting something to add to your meals without anything else.

q
Posted 8/15/2012 8:12 PM (GMT 0)
Quincy,

Yes I was thinking the same thing...not going to try anything that I could be potentially sensitive to.

Still having that squirt at 3-4 ish every day...do you think it's that I need the Metamucil? Knowing that it happens every day same time, at 3 what time do you or anyone suggest that I take the Metamucil to bulk up that time of day for me?

So strange,,,I even did the am canasa later today, at 8 instead of 5-6 am...

The only thing I can think of is the ground flax that I take every morning at 8... Before the flare, whenver I would have the flax I would have a nice formed BM between 3-4 every day...

Is it possible that this is my normal time to go and I'm just not healed enough to start having the formed BM for that time?

Just strange because the am stools are formed....


So stumped by this one
Posted 8/15/2012 8:16 PM (GMT 0)
hateuc,

I think the same thing...that the inflammation was so moderate that I could hold the liquid. I mean, I could hold it all night, but in the am, it was all liquid...like it didnt absorb though the night...that probably sounds stupid, but it's all I an think of?

So why Lialda and not asacol? I
I'm curious why people are on one and not the other?
Posted 8/15/2012 11:51 PM (GMT 0)
Considering where your ulceration area is (ileum), but you haven't stated if it's terminal ileum, close to the cecum or farther up...Lialda or Asacol wouldn't be the appropriate choice.

Here's a list of most of the 5ASA orals, how the coating is dissolved and where they're starting to be released initially before going throughout the colon...

- Asacol is mesalamine that dissolves at pH 7 and releases in the terminal ileum and colon.
- Asacol microgranular is mesalamine that is encapsulated is small granules and dissolves at pH 7 and is released in the terminal ileum and right colon.
- Claversal, Mesasal, and Salofalk are mesalamine that dissolve at pH 6 and are released in the jejunum, ileum, and colon.
- Rowasa is mesalamine that dissolves at pH 6 and is released in the jejunum, ileum, and colon.
- Pentasa is mesalamine that is time released and released throughout the intestinal tract.
- Salazopyrin is Sulfasalazine that is dissolved by colonic bacteria and released in the colon.
- Dipentum is Olsalazine dissolved by colonic bacteria and released in the colon.

I would once again suggest you stop the flax and see if that helps. It's an oily fibre, insoluble and could have an impact on how things come out. As well, you don't take it with a meal, only yogurt or as before...oatmeal. It has nothing to "grip" onto. Plus what you eat in the morning probably won't affect you by the 3:00 squirts, but the morning before could affect you then.

I still think it's the Canasa squirting, because it's not going to be absorbed fully..still will have some "residue"...and slippery at that. No other reason than that. Gas could be the force behind pushing it out.

I just found this..."Flaxseeds also contain compounds known as lignans, which are very similar in structure to estrogen", so you might be sensitive to it. I didn't feel good taking flax seed oil, could be that it doesn't agree. worth going off to see how you do.

I think we all need fibre, for various reasons. Psyllium is the most used and I must say it's been awesome for me. It's also a good food for probiotics to help them work better, helps the colon to remain "exercised", and helps regulate peristalsis. It softens and fluffs the stool. It bulks the stool. It helps protect the colon from invaders.

q
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