still flaring?????

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huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 6/8/2009 5:56 PM (GMT -6)   
I don't post much on here but I do read alot of the posts and I think I get more info on here then I do from my GI doc. I was in a bed flare and ended up hospitalized for a week on IV steroids and antibiotics. I have been out for about 2 weeks and I am on 30 mgs of prednisone and 4 lialda pills daily. I also take vitamins and probiotics and other supplements. I still go about 3 times a day with some cramping throughout the day. I have awful headaches throughout the day and not sure if it is from tapering the prednisone. I also only occasionally have a little blood on stool, but have no hemmies. so my question is am i clinically in remission? also on my colonoscopy that I had 3 weeks ago, it showed that there was abnormal mucosa in my appendix. Has anyone else had this? Do I need to be concerned now about my appendix as well? Any input or insight would be greatly appreciated.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/8/2009 6:05 PM (GMT -6)   
I would say that you're not in remission, simply because you are still on pred and pred is not a maintenance med. Also, since you're still having some blood and some cramping, that says to me that you're not in remission. Is your poo formed? If not, then that's another strike against remission.

I don't understand how a c-scope showed anything about your appendix, though.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).


huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 6/8/2009 6:32 PM (GMT -6)   
I am having formed stools now. I wasn't having many stools at all before, just a lot of blood. I ended up wioth an iron infusion in the hospital cause my hematocrit level was 7. I had my colonscopy amd on the images I got back it said under one pic that it was appendix with abnormal mucosa. I also had some nodules in my cecum area with abnormal mucosa. I go back to the doc tomorrow and I am just wondering what everyones thoughts were about my whole situation

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/8/2009 6:38 PM (GMT -6)   
fruitgirl....The c-scope usually goes as far as the cecum (which the appendix is attached) as well as into the ileum, which is the last part of the small intestine.

huntersmom....did the doctor possibly mean the cecum and said appendix because it might be something you'd understand better? or do you have the written report or a copy which states your appendix has inflammation?

I wouldn't consider you in remission (you're still on prednisone and tapering)...but your symptoms have clearly improved, which is a huge celebration in itself.

It's seems that the headaches would be from the pred and probably the change in dosage from tapering.

Hang tough....you have a ways to go yet.

You might want to consider a fibre supplement, probiotics as well as asking the doctor for rectal meds while you're tapering.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 6/8/2009 6:54 PM (GMT -6)   
I have definitely improved amd I am terribly afraid that I am going to flare bad when I get off the prednisone. My colonoscopy pics show different pics for the cecumand the appendix. the cecum had nodular abnormal mucosa,(whatever that means)....assuming it was just cause it had little nodules sticking up...it was actually weird and GI said he wasn't sure what that was about. the appendix just said abnormal mucosa. I do take probiotics everyday, when I started themis actually when I started to see an improvement....when I was just on meds I was still having urgency and blood. I have canasa and cort enemas,neither of which seemed to help me. I have had this since Oct of 2008 and kept telling the docs that the meds weren't working but allmy blood work was coming back ok, so they didn't make a deal about it until I had a CT done that showed the inflammation spread through my colon...(originally diagnosed with proctitis). I am just confused and not sure what to ask doc tomorrow either. I ususally become so wrapped up in what they are saying,I forget all my questions

huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 6/8/2009 6:59 PM (GMT -6)   
I have pics that say cecum and appendix. I am definitely feeling better then I have. I take probiotics everyday and I didn't actually start to show a lot of improvement until i incorporated them. I have canasa and cort enemas,but neither of them seem to work for me. the pics on the c-scope said appendix-abnormal mucosa.I am just concerned as I still get pains in my abdomen. Maybe I'm just being paranoid,but I've never dealt with anything like this, so I really appreciate everybody's input. also have docs appt tomorrow and any suggestions of questions would be appreciated!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 6/8/2009 7:06 PM (GMT -6)   
Hi....oh, it's sooooo easy to forget questions and to remenber the answsers...for me, sometimes anxiety gets in the way.

Do make a list of questions.

OK...for the c-scope. was your entire colon affected? or just the rectum and the cecum/appendix..with nothing in between?
And the CT showed inflammation throughout, but that has not been confirmed via a c-scope...

You should still be using the rectal meds while youre on pred...that will help with some of the symptoms...

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


huntersmom
Regular Member


Date Joined May 2009
Total Posts : 50
   Posted 6/8/2009 9:48 PM (GMT -6)   
my sigmoid, rectum,and descending colon and cecum and appendix were affected,not sure if thats the whole colon or not. It was bad. The GI doc said I had severe ulcerative colitis and admitted me immediately. I am awful with anxiety at the doc, cause I am afraid they will think I'm crazy. They didn't listen before when I said it was getting bad. I made alist and I am also taking my mom with me. as far as the rectal meds, I was still bleeding on them and the day after I stopped them ,the bleeding stopped.....I was confused. I'm on the highest dose of lialda right now as well. thanks for all the input and support! this really is a great site.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/8/2009 9:53 PM (GMT -6)   
Best of luck getting well. You could give a 5ASA enema a shot to see if it helps. I use rowasa and it really helped me.

Thanks for the info, quincy, about the appendix. I had no idea they could view the appendix during a c-scope! Do appendix (what's the plural of appendix?) usually get inflammed when one is in a flare?
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).

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