What shall I ask for next?

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

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.

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

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

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

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

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

     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.