Flare Plateau - Where to go from here?

Deleuze

Regular Member

Joined : Nov 2007

Posts : 22

Posted 11/2/2007 12:30 AM (GMT -7)

Hey everyone,

Diagnosed in April 2007 and have been in a flare ever since. I have been visiting these boards regularly and have really appreciated all the info. I felt the need to post because my progress has stagnating and I am looking for suggestions.

I have gone from 15 BMs a day with severe cramping to around 6 a day with no cramping. Fiber supplements along with colazal and cortisone enemas got me to this point.

The problem is I have hit a wall. My life is at least manageable now, but the blood is still there with every BM, and I still have urgency and unpredictability with the BMs. My condition has not changed in a few months now and I am beginning to worry that remission is simply not in my future.

Does anyone have any suggestions for medication/treatment to discuss with my Doctor in order to break through this wall I have hit and get me in remission?

quincy

Elite Member

Joined : May 2003

Posts : 31235

Posted 11/2/2007 1:53 AM (GMT -7)

Hi, welcome to the forum!

Is your UC limited or throughout?

Have you been on the Asacol and the 5ASA retention enemas as of yet.....or were the Colazal and steroid enemas your doc's first choice of meds?

You don't mention any probiotics....I would strongly suggest you start some.

Has your doctor done stool samples to make sure there's nothing else going on?

When was your last c-scope?

OK..enough questions for now... ;-)
quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg; Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Deleuze

Regular Member

Joined : Nov 2007

Posts : 22

Posted 11/2/2007 2:09 AM (GMT -7)

I have UC throughout the whole colon.

I started on the Asacol and switched to Colazal.

The only enemas I have tried so far are the corisone, they are called Colacort.

I am currently using the Reuteri probiotics.

My last scope was about a month ago, it was just a Sigmoid though. My last Colonoscopy was in May.

And yeah I had a stool sample taken.

quincy

Elite Member

Joined : May 2003

Posts : 31235

Posted 11/2/2007 2:24 AM (GMT -7)

How many Asacol were you on initially? Were you also on the steroid enemas at that time?

How long have you been on the Colazal with the enemas? are you doing the enemas nightly?

I suggest you maybe try Pentasa and switch or add the 5aSA retention enemas nightly and use a steroid foam enema during the day.

The Reuteri probiotics are excellent...I do use them sometimes in conjunction with mine.

What fibre supplement are you using (exactly)..and how often?

Do you consume any artificial sweeteners?

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg; Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

jujub

Elite Member

Joined : Mar 2003

Posts : 10415

Posted 11/2/2007 5:38 AM (GMT -7)

I can totally sympathize. I also thought I'd never see remission. I went through Asacol, Colazal, Pentasa and back to Colazal because it seemed to help the most. I was on steroids for a long time. I did Mesalamine and steroid enemas, which either didn't help or made me worse. I started on Imuran, which also helped a little. Probiotics had no effect, nor did other natural remedies. I was at my wit's end when I finally started getting better.

This is a very frustrating disease, and it can take a while to find the right combination for you. I'm so glad you found this forum because it can offer a lot of support, a wide variety of treatment options that have worked for us, and a place where you can discuss this DD and be completely understood.

Judy

Left-sided UC diagnosed 2001. Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years!

Now in remission for almost two years. Remicade has been my wonder drug.

"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."

princesa

Veteran Member

Joined : Aug 2007

Posts : 2204

Posted 11/2/2007 7:03 AM (GMT -7)

If you're not addressing the diet component, you should look into that. It can play a key role in your ability to achieve remission. Some folks find eliminating or cutting way back on wheat, dairy and sugars makes a world of difference. Some books I'd suggest are:

Breaking the Vicious Cycle
http://www.yeastconnection.com/yeast.html

The New Eating Right for a Bad Gut
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=pd_bbs_sr_2/105-1230798-0579644?ie=UTF8&s=books&qid=1194011880&sr=8-2

Listen to Your Gut
http://www.crohnsalternative.com/

I second the suggestion to find an effective probiotic. Many brands don't offer near the viable strains they claim. If what you're using now doesn't seem to be helping, try another brand. Natren and Custom Probiotics are two I trust.

L-glutamine and omega-3 supplementation are also good for gut healing and controlling inflammation. There are alot of things in addition to pharmaceuticals you can do to help support and heal your body. The book I mentioned above, Listen to Your Gut, explores a variety of approaches, in addition to dietary manipulation.

Diagnosed with ulcerative colitis spring 1999

C-scope confirmed UC diagnosis 9/18/2007

Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.

Post Edited (princesa) : 11/2/2007 3:58:21 PM (GMT-6)

Deleuze

Regular Member

Joined : Nov 2007

Posts : 22

Posted 11/2/2007 12:21 PM (GMT -7)

quincy said...
How many Asacol were you on initially? Were you also on the steroid enemas at that time?

How long have you been on the Colazal with the enemas? are you doing the enemas nightly?

I suggest you maybe try Pentasa and switch or add the 5aSA retention enemas nightly and use a steroid foam enema during the day.

The Reuteri probiotics are excellent...I do use them sometimes in conjunction with mine.

What fibre supplement are you using (exactly)..and how often?

Do you consume any artificial sweeteners?

quincy

I was on Asacol along with Prednisone and I was taking quite a few a day, I can't remember the exact number. I switched because I wasn't seeing much of a change and my dad and another person I know with Colitis both recommended Colazal.

I have been taking the Colazal with the enemas for a couple months now, it used to be nightly but now I am doing them on MWF.

I am taking a generic version of Metamucil fiber supplement. I am adding two tablespoons to a glass of water a day along with having a bowl of high fiber cereal or oatmeal in the morning and a banana.

I don't consume any artificial sweeteners.

I am assuming Pentasa is a pill that replaces Colazal, but the 5-ASA I am not familiar with, what name does it usually go by? Is that the Rowena enema?

Thanks to everyone for all the suggestions!

julee70

Regular Member

Joined : Oct 2007

Posts : 486

Posted 11/2/2007 3:12 PM (GMT -7)

There are a bunch of 5-ASA drugs: Asacol, Colazol, Pentasa, DiPentum. If one isn't working... and it sounds like you've given it a long, fair try, then you could ask your doctor about trying another.

With the enemas, if three a week isn't helping the bleeding, then you could try something like the Rowasa enemas every night. Rowasa doesn't have cortisone so you could potentially use this for a long time without harmful side effects.

The other rectal meds that people discuss here are Canasa suppositories and cortifoam. You could try different combinations with these. If I were having bleeding for a long period of time, I would up my dose of the rectal meds. You can use the cortifoam (and maybe the Canasa?) in the morning too and get double dosage that way.

I would ask your doctor about all these different choices and come up with a plan soon.

Let us know how it goes.

-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

quincy

Elite Member

Joined : May 2003

Posts : 31235

Posted 11/3/2007 1:42 AM (GMT -7)

Hi..I think you should consider to change the fibre intake in cereal form and have maybe more protein in the morning such as an egg and add the fibre by having a whole grain toast.

If you mix the Metamucil with just water....I'll guarantee you there's artificial sweetener in there somewhere. That could be a culprit.

Are you bleeding at all?

I wouldn't abandon the 5ASA meds yet...5ASA meds are what you're taking in pill form and in rectal form.

Start by changing your diet...I think you're actually getting too much fibre.

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg; Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Deleuze

Regular Member

Joined : Nov 2007

Posts : 22

Posted 11/3/2007 2:54 AM (GMT -7)

I just checked, the fiber drinks I am taking do have artificial sweetening. Looks like I am gonna switch off of those.

Yes, I am still bleeding.

I wasn't thinking about switching off the 5-ASA, but perhaps I should try something other than Colazal...I am definitely gonna ask my doctor about the 5-ASA enemas though, that sounds like a good idea in addition to the Coritsone enemas I am already using.

quincy

Elite Member

Joined : May 2003

Posts : 31235

Posted 11/3/2007 9:24 AM (GMT -7)

I think you should still look into the food change regarding the cereal....I think you're getting too much fibre and not enough solid foods.

What do you eat during the day normally?

One thing you might want to try is while you're doing the enema....insert it and then withdraw just to the edge of the anus (but still inside)...start squeezing the med from there while you're pushing it in for full insertion.
This will help with the urgency as well.

The capsules won't have any sweeteners in them....maybe a good option.

How many Reuteri probiotics are you taking daily? You can take up to 3.

With pancolitis...do expect healing to take a long while.

You have a lot of options...try not to be too frustrated. Regarding artificial sweeteners...all gum has it now (if you're a chewer)...and most of them can give gut symptoms.

You have improved a lot...it took me about 2 years to finally get it all worked out with the meds and to have a more consistent lack of symptoms.

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~Ranitidine,Pariet (reflux) Effexor XR 75mg; Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

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