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LondonRed
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Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 4:52 AM (GMT -6)   
The bleeding and proctitis isn't going away. I don't get D, or pain but get streaks of blood on my stools and dry looking blood in with the stool. The GI says this is pooled up proctitis blood. I am really scared of hard drugs and currently take Asacol Suppositories at night.
 
I hear there is Pred Suppositories and other Steroid ones but the GI is worried I might become steroid dependent on them, can someone give me advice on what to do next? I have a feeling the GI wants to put me on harder drugs and I am worried that I might start to feel unwell using them. I feel 100% well at the moment and don't want to become unwell trying to get well!
 
What is a safe drug to take that is pretty effective for rectum bleeding?


Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.

Post Edited (LondonRed) : 9/12/2008 4:12:01 AM (GMT-6)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 7:29 AM (GMT -6)   
Well, when I went from Canasa suppositories to Proctofoam and still had bleeding - doctor put me on Rowasa.  Even though I had to stop because of side effects - assume sensitive to 5-ASA medications - the bleeding has stopped and I used about 1/2 one every night for about two weeks before having to stop.  Bleeding stopped quickly.  ElaineNY

68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 8:16 AM (GMT -6)   
Is Rowasa a steroid? What is it's medical name?

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 8:21 AM (GMT -6)   

It is a 5-ASA - melasamine - same as the suppositories but gets up further.  I am at this point willing to try the steroid enemas as I understand very little actually gets into your system like the pills.  I will write what I find out today!

ElaineNY

 


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 8:22 AM (GMT -6)   
I am thinking about steroid enemas too but don't want to become dependent. I use the Asacol Suppositories, maybe the Enema will help?

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/12/2008 9:38 AM (GMT -6)   
How long have you been on Canasa? It could take some time to work. Or you could use Rowasa which is the a liquid form of Canasa and goes further up the colon.
 
I've been on steroid rectal meds before (2 months on Proctofoam, one week so far on Anucort) and I have never had any side effects. Steroid rectal meds will mostly stay in your colon and very little will enter the bloodstream, so that's why side effects are way less than oral steroids.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


daniella510
Regular Member


Date Joined Apr 2008
Total Posts : 48
   Posted 9/12/2008 12:23 PM (GMT -6)   
I agree, you will be less likely to be steroid dependant if they are in the form of rectal meds rather than oral.  They are usually my first go-to med when I feel a bit of a flare coming on. 

Danielle  26/F
Dx: Pancolitis for 12 years
Meds: Asacol (400mg x12 daily)
         Prenatal vitamins + extra calcium supp.
         Fish Oil
         Culturelle x2 daily


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 1:53 PM (GMT -6)   
He has asked me to try the ASACOL suppositories first and if they don't work then go with the steroid ones. He isn't concerned as he says some blood is normal with IBD and I don't have any other symptoms.

He thinks 4 days is too soon to give up in the rectal meds.


Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 2:14 PM (GMT -6)   

Just got back from the NP.  She ask me to try the Rowasa every other day and don't take the Colazal (which obviously caused the side effects of nausea, ringing in ears, dizzy spells, sweating, etc. to get worse).  From what I told her I have no other real symptoms of UC at the moment except occasional dry/thick blood - little bit with BM.  I have no cramping, D, and nausea/sweating is less. Since I have had IBS for years many of my problems are caused by that - like gas, heartburn, etc. She told me she will talk to the doctor and call me regarding any other treatment now. She also said "do not obsess over blood in the stool - this is not a serious problem - diarrhea, BLEEDING, pain, etc. is a problem".  She said next medication would be immune suppressant and I said NO because I am trying to get into remission for knee replacement surgery.  She agreed!  I will let you know what doctor says.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 2:30 PM (GMT -6)   
If you are only having just blood and no symptons, is it worth going on hard drugs Elaine?

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 2:34 PM (GMT -6)   

What do you mean by "hard drugs"?  Sorry I don't understand what that would be - steroids maybe! 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 2:43 PM (GMT -6)   
Not rectal steroids, they are relatively safe, I mean Immune Suppressants.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/12/2008 3:40 PM (GMT -6)   
I am so nearly going to go for the rectal steroids, this mucous and traces of blood on it's own is freaking me out.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/12/2008 8:14 PM (GMT -6)   

Well, I saw the NP.  She said since I don't have diarrhea, cramping, urgency and I do have regular BM or two a day, tiny left-sided discomfort that I should not worry about the dried looking blood end of my BM.  I am off Colazal because of side effects (like the flu) but am going to try the remaining Rowasa enemas every other night and talk to her next week.  In the meantime she is consulting the gastro doctor.  I rely on both and their educated recommendations.  I ask all the questions I have and research here, etc.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30704
   Posted 9/13/2008 1:49 PM (GMT -6)   
LR....you haven't even given the 5ASA meds ENOUGH time. Ask the doc for the enemas..Salofalk retantion enemas or Asacol or Pentasa I believe the ones in UK.

You're definitely not in the category of needing more. Your impatience is causing you way more distress than necessare....leading you to desperate medication choices.

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/13/2008 2:33 PM (GMT -6)   

Red- I so agree with both you and quincey.  She has a lot of apparent experience which we should consider.  I, too, am frustrated with the symptoms especially blood and the side effects of the medications.

Looking over your background, diagnosis, etc. possible a 5-ASA in pill form would help you.  I had to quit them because of side effects but we are all different and I know it helped "from both ends" while I could take them.

I am working with my NP and gastro doctor to find wht works for me.  I think you and I are lucky not to have a much worse condition!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/13/2008 3:38 PM (GMT -6)   
I was on the pill form before my flair and last time they got me into remission in 3 days. This time nothing is working, I still bleed with each BM, sometimes a little, sometimes a moderate amount. I know some of it is piles and some inflammation but I am not seeing much improvement. I will give it a month and then try the enema. And then go for the streroid ones....

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/13/2008 4:04 PM (GMT -6)   

You know a year ago August (2007) I had a colonoscopy due to blood in my stool and diarrhea.  I was given Rowasa but never used it because my husband was having radiation and chemo and I could not deal with everything.  I was not in a lot of pain or anything - went to doc because of blood - took Imodium to control D.  It cleared up in about 2 weeks on its own so I never went back until this May when blood returned and I wanted a knee replacement and had to tell doctors about bleeding.  I believe the stress probably made the flare.  Anyway, seems every flare is harder to control - just maybe!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 9/13/2008 5:12 PM (GMT -6)   
Hi,
     Been reading all these posts.  I, too, still have rectal bleeding, urgency, etc..  The whole nine yards of Ulcerative proctitis.  I was diagnosed in 1998 and have suffered flares every one to two years.  This flare has been going on since late March.  I was hospitalized for ten days in early May.  The bleeding has had me concerned but reading these posts and also seeing a colorectal surgeon last month has more or less put my mind at ease.  I know that Remicade is NOT an option for me.  Hopefully, the Colazal, 6MP, Prednisone (10 mgm at the moment), and Canasa...not to mention fish oil capsules, probiotic, flaxseed oil capsules....did I forget anything else...will "kick" in and I will find remission once again.
     Londonred...by strong meds..could you have meant something like 6MP?  It's an immunosuppressant and I have been taking it for at least four years.  It really hasn't kept me in remission like I feel it should but the colorectal surgeon said I may have had even more flares had I not been on it.  I do have to have my blood count taken every two months or so to make sure my white count doesn't drop too low.
     I even have bought some turmeric and sprinkle it on my food.  Is anyone taking it in capsule form with any success?

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/13/2008 6:23 PM (GMT -6)   
 Colazal, 6MP, Prednisone (10 mgm at the moment), and Canasa...not to mention fish oil capsules, probiotic, flaxseed oil capsules..
Now that is some list of medications.  Since two of those give me terrible side effects I can't imagine what all the rest might do.  I do take Align (probiotic) which I KNOW helps a lot.  I guess my next try will be 6MP if the Rowasa every other night does not help.  By the way, Christine, can you tell me why the fish oil capsules?  I took that a few years ago for my chloresteral but could not find one that did not mess with my GERD.
My son puts flaxseed on his food - is capsules ok - same?
Ok, one more question - my husband took prednisone a couple times and my dog (hee hee) and they were both so hungry, thristy and "ugly".  I hate to think what they would do to me as my husband handles medications quite well.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Rowasa every other night for now.
 
 
 
 
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/14/2008 2:08 PM (GMT -6)   
Christine by hard drugs I mean steroids. I bleed with virtually every BM and it freaks me out. My stools are also getting smaller and looser. Other than that I feel well.

I am so frustrated with it. Only 2 months ago they thought I had nothing wrong with me and now this.

I am trying AloeElite, and other herbs. And have just ordered BeePropolis. I will also look at other herbs. I am so sad and down. It turns our life upside down.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 9/14/2008 2:53 PM (GMT -6)   
Hi,
     If you mean steroids (hard drugs), I have been on prednisone since April.  The beginning of April was when this flare started.  At the time, I was on Colazal and 6MP.  Don't know exactly what triggered this flare but it was one of either two things...the crabcake I ate for dinner the night before I noticed the mucus in my stool...or...a bubble bath with cheap bubbles from the dollar store.  Believe it or not, the GI doctor thinks it WAS the bubble bath.  The ulcerations started to appear on the outside of my vagina but since my immune system is so compromised, it swiftly traveled up into the rectum.  Doc put me on 30 mgm of prednisone then and Flagyl.  However, I progressively got worse, terrible cramping right down into the insides of my legs to my knees....never had that before.  Wound up in the hospital on May 3rd with BP of 216/96 and severe ulcerative proctitis.  My amylase and lipase readings were off the wall and the doctor took me off the 6 MP because he thought it was affecting my pancreas.  Was hospitalized thru May 13th, the morning the took the PIC line out.  The only tests they performed in the hospital were CT scan and colonoscopy.  Other than that, they had a heck of a time bringing my BP under control and the UC.  I was still sick as a dog when they released me but I think they were afraid if I stayed any longer I could develope a staff infection.  Hospitals aren't known for their cleanliness.  I made sure I questioned every pill they gave me and everything going into that PIC line.  I must have been a real pain in the tush, but hey, my friend died in the hospital with Sepsis and I sure didn't want to go that route.  Made sure I sanitized everything in there too..lol.
     Okay, bring you up to date...I was only able to get off the prednisone for three short weeks before I started to exhibit symptoms again after taking Cipro for a tooth abscess last month.  I've been slowly tapering and am now down to 5 mgm of it.  I am wondering if any of these drugs really DO anything because I still am bleeding too London.  I don't get upset over it because I read a lot of these posts and it seems like most UC sufferers do bleed.  I have seen a colorectal surgeon along with the GI doctor and the surgeon said the colitis is not "that bad".  It is located in the rectum and not further into the colon.  My amylase and lipase quickly returned to normal levels by the fifth day I was in the hospital, so no idea what set them skyrocketing.  The GI doctor did put me back on the 6MP when I came out of the hospital, but I have blood tests every two months to check my blood count, CRP and amylase and lipase.
     Any no, kops2, I have no after tastes with the fish oil or flaxseed capsules.  I put a tablespoon of GROUND flaxseed on my cereal every morning too.  Last night I tried the Cort enema again and think I will alter that with the Canasa and see if that works.
     I better sign off, this is beginning to look like a freakin novel. rolleyes

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 9/14/2008 2:56 PM (GMT -6)   
One more thing....the prednisone does NOT make me hungry.  I know it does that to a lot of people, maybe they are on higher dosages, but the highest dose I was on was 40 mgm in the hospital and they had a PIC line in me at the time.  When I came home, I was down to 30 mgm.  I know my neighbor was on 60 mgm and she ate like a horse.  I watch my sugar intake because both my parents were diabetic and prednisone usage can lead to diabetes (that's all I need).  I already have high blood pressure for it and osteoporosis.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/14/2008 3:19 PM (GMT -6)   
All this makes me wonder if we are all better off looking for a natural remedy: Boswellia, Aloevera, Tumeric and Bee Propolis etc and really give them a few months to work. It just seems like all these hard drugs do is suppress for a while and give nasty side effects.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Mesalazine Suppository at night.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 9/14/2008 3:22 PM (GMT -6)   
Yeah but my daughter's brother in law is treating himself with some kind of cockamanie herb he read about over the internet and he isn't getting any better either.
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