Emory.....how are you feeling??

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WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 10/16/2008 9:10 PM (GMT -6)   
Been trying to find you here on the forum. How are you feeling?
ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/17/2008 1:31 AM (GMT -6)   
I second the motion, How's things treating you?
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC, first 70 cm of intestine back in May '06
MEds & supplements:  Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema every other night, Prednisone (down to 5mg, YAY!), recently added Omega 3, 6, & 9 from flaxseed oil 2 pills 3x.  Also trying out glucosamine, 1 pill 2x.  Bowels have been fairly happy lately. 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 10/17/2008 8:16 AM (GMT -6)   
Yes, I would like to know as well! Hope your doing wonderful!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/17/2008 9:56 AM (GMT -6)   
I fourth this motion! :)

Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/17/2008 10:13 AM (GMT -6)   

Yes, emory - been looking for you also - how are you?

Hope you are doing something fun instead of being here! (you know - like vacation, etc.)  Let us know.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/19/2008 9:25 PM (GMT -6)   
Hi everyone!

Sorry to have been away so long; I think it's been over a week since I managed to log on and see how everyone's doing. Have been doing a quick scan and got caught up with how everyone's doing, except for ComedyDork -- how are you?

I am doing pretty well. I hate to even type this because I get all superstitious and think I'll jinx myself! But I really haven't seen any bleeding for almost two weeks, and mucus only occasionally. Urgency is pretty much gone, but I still do have multiple BMs per day, so maybe I'm still flaring. ??? Some weird gas that I think is caused by the twice-a-day suppository regimen. I'm planning to call the doctor (well, the nurse) in the next couple of days and see if I can go to every other day on the hydrocortisone suppository. Don't have any plans to go off Canasa for the foreseeable future. I will also start tapering my clonazepam tomorrow night.

The amazing thing is that about two weeks ago, I suddenly got my energy back. What a wonderful feeling! I helped a friend of a friend organize for a yard sale (she really needed help!) and received some fun antiques in return. (I love vintage stuff...) This past week, my daughter had Thursday and Friday off from school, so we all went on a little adventure. Stayed in a Forest Service cabin in the Bull River valley of northwestern Montana. Absolutely gorgeous fall colors. Did a little nature hike into a grove of giant cedars, and another one down to Kootenai Falls, which was one of the loveliest places I've seen. Also got to stop at a few thrift stores and found some treasures, and went to a hot springs. Definitely a nice time.

Would love to hear opinions on whether or not I'm headed toward remission. Also would love to hear more of what you've all been up to!

Best,
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/19/2008 9:33 PM (GMT -6)   

So happy you had some fun!!  Nice to hear from you and certainly sounds like towards remission if not already there.  I would be very happy to be where you are anyway!

Take care, relax and enjoy!!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/19/2008 10:11 PM (GMT -6)   
I hope you're also on your way, Elaine! Sounds like the Lialda is giving you some trouble. Am sorry to hear it, and think you're a pretty tough cookie to stick with it until your next scope, which of course I hope will show excellent progress.

I know proctofoam did nothing for you -- it didn't for me either! But have you considered the hydrocortisone suppositories (25 mg steroid, 3 times as strong as proctofoam) in the a.m and Canasa at night like I'm doing? I know your UC extends a little farther up, but the lowest is the last to heal, and maybe the suppositories would prove a helpful addition to what you're already doing.

Take care, yourself --
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/19/2008 11:15 PM (GMT -6)   
Okay, I did jinx myself. Out of the blue, a mucus plug with a little blood. Bummer!
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/20/2008 9:30 AM (GMT -6)   

Oh no, emory! Don't get discouraged. When I was in remission last year, I would have a couple days with blood and mucos, and then it goes away.

Thanks for asking--I've been doing better, but not great. Alternating the rectal meds have decreased the bleeding, but I still have to run to the bathroom about 5 times/day (I end up stalking my bathroom from the end of breakfast to about an hour after lunch). When I was in remission last year, I only 2-3 BMs/day which were predictable. So I'm not in remission yet, but hopefully getting there.


Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/20/2008 10:12 AM (GMT -6)   

emory and all,

Ok, what is a mucous plug?

As for the other rectal meds - I will do whatever is suggested by my doctor.  He already does not like me coming here for "advice" (he said that -I didn't) so I will not ask too many specific questions.  I will just ask what else I could try.  I wish he would come here and see how great everyone is and the support we all get.  He is just afraid I will try some stupid "cure" or something on my own.  I do exactly as he says and let him know what is going on.  He is a good doctor with lots of experience.

Hope you continue to feel better.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/20/2008 3:45 PM (GMT -6)   
ComedyDork, I'm not letting it get me discouraged, but I am wary... "Better, but not great" is better than "awful", I guess -- hope you keep improving.

Elaine, I just made up the term mucus plug. Sometimes I get these little things that are obviously entirely mucus, often with blood mixed in. They often make their way out with much fanfare (i.e., loud gas). I count them as a BM because obviously my bowels moved, but they're their own species in my mind.

I can understand the approach you're taking with your doctor; makes perfect sense. I also try to do exactly as told and keep the doctor posted. But I ask an awful lot of questions along the way! (I know I must be labeled a nuisance patient with all my doctors...)
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/20/2008 3:50 PM (GMT -6)   

I don't think we are nuisance patients - I believe we are informed and proactive just the way it should be.  I have a call in to my NP - sweet little girl who goes between doc and I and I am sure is uncomfortable at times!  Just want to ask about what I should do for the next week before the scope.  I really don't want to quit medicine and be a lot worse by then.

By the way, don't think I have ever had a mucous plus - good tern though. 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/20/2008 5:22 PM (GMT -6)   
Emory -

I'm glad to hear that you've been feeling better, which is the reason you haven't been active on the board. Having energy is a grand thing isn't it? I'm willing to bet that you were able to keep yourself busy doing all the stuff you've been putting off for the few weeks. Sorry to hear about the mucous plug (interesting concept that), but I don't think it was a jinx. Two steps forward, one step back is what you said once. I think you made five steps forward, and a half step back. Whatever you've been doing lately, keep it up because it seems to be working for you. Stay in touch, good or bad.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements:  Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema every other night, Prednisone (down to 5mg), flaxseed oil, L-glutamine.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 10/20/2008 6:51 PM (GMT -6)   
Mucous plug -- is this about the size of a pea - usually a few of them together and sometimes hairy? sorry for the graphic
sometimes I get these whit=-ish things with brown hairs on them, like spiders.
Liver transplant 2004 -- liver is only healthy part of me
Prograf 1mg bid for transplant
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/20/2008 7:13 PM (GMT -6)   

There is a lot of graphics talking about UC.

I have a question about your Imodium.  As many state here they don't think Imodium should be used much - did you doctor prescribed/approve the use when you need it within instruction guidelines as mine did?

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/20/2008 7:43 PM (GMT -6)   
Neednewbody, that about describes it. Sometimes larger than a pea, sometimes singly but often in groups. Kind of hairy/feathery, but sometimes more pellet-like. Always yucky.

Brandon, thanks for the encouragement. Five steps forward, half step back is about what i was thinking, too. Good luck with that last 5 mg of prednisone --
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/21/2008 9:49 AM (GMT -6)   
emory--Are you doing any better today? Hopefully the mucos was just a short fluke.

Elaine--I'm pretty sure you can take your meds up until the day of the cscope, or at least that's what my GI had me do.

Brandon--Does the flaxseed oil or L-glutamine help?
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/21/2008 10:22 AM (GMT -6)   

I know I CAN take the medication but it is making me so sick I wanted to find out what to do - only one week but I don't want to be sick every day like this week - mostly overnight.  Last night very little sleep - gas, sweating, chills, restless, aching, etc.  Getting old doesn't help either.

Maybe Rachel will call today but I have to go out for my flu shot and prescription to another clinic.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/21/2008 11:23 AM (GMT -6)   
Comedydork - I honestly have no idea. Only been doing them for a week or so now. I've taken fish oil in the past and it didn't do anything for my UC symptoms. This time it was a total impulse buy while I was at the hippy-mart. It could also be that I've been reading enough positive reports here that I thought I'd give it a try again. Without realizing it, I bought flax seed oil, and it claims to contain omega3s, 6s, and 9s.

The glutamine ended up in my basket because the hippy pill lady asked if she could help me, and I actually said yes. I gave her a little background on myself, and she pulled out the herb/supplement bible, found glutamine in it, and I liked what I read. So I'm giving it a try. I'm willing to do just anything to get off the prednisone! I do think the glutamine might be helping, but I think it is too early give it a thumbs up yet.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements:  Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema every other night, Prednisone (down to 5mg), flaxseed oil, L-glutamine.


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 10/21/2008 9:46 PM (GMT -6)   
Brandon,
I am taking flaxseed oil pills and fish oil as well. I heard they are both good for inflamation.

Emory,
So good to hear from you! I am glad you got your energy back and are feeling in better spirits. How was today?

Eliane,
I am sure you are looking forward to your scope next week. I hope you find some answers!

Questions...got my bone density results back...I have Osteopenia now. My last scan showed my spine lost 7%. My doc told me to double up on my calcium. Guess I wasn't taking enough. She also wants me to do a vitamin D test. IS this something I should be concerned about.

I just want to thank prednisone for that lovely gift!!

I have had 2 days of "no blood"...knock on wood.

Comedydork - how ya doing?

Just wanted to pop in and keep this thread going :>)
ulcerative proctitis - march 05 diagnosed
current status - trying to see what works - still bleeding!!!!!
hospitalized - 3/08 for 6 days of IV steriods
colazal - 9 pills  asacol - 12 pills, canasa 2x per day, nightly hydrocortisone enemas
VSL#3 Primal Defense Ultra Probiotic (2x per day)
fish oil, flaxseed oil, calcium w/ vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/21/2008 10:39 PM (GMT -6)   
So much I want to respond to here!

Brandon, "hippy-mart!" Love it! I too bought some flaxseed oil, but several weeks later, it's still sitting in the frig unopened. Keep us posted on the glutamine.

Elaine, SO sorry you're feeling so sick!!! Hang in there... I sure hope this time they realize mesalamine just isn't for you and suggest cortifoam or something like that!

ComedyDork and WishfulMA, the mucus plug seemed to be a fluke, and no more blood, at least, but I still feel just a little off. Not quite as well as I had felt, but still pretty darn good! If I can maintain at this level I'll feel lucky.

WishfulMA, yes, I'd be concerned about osteopenia, but not panicked. How old are you? Do you have other risk factors for osteoporosis (family history, thin/light frame)? Take your calcium (and vitamin D if that's the best way to make sure it's absorbed), do weight-bearing exercises, and remember, your bone density can improve. Mine did!

Take care, everyone --
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/22/2008 9:29 AM (GMT -6)   

Maybe you saw the post about doctor prescribing Reglan for nausea I guess.  NP called it in. Won't get it until tomorrow to try. I just don't think anyone gets it that I probably can't take mesalamine medication - at least not in big enough doses to really get in remission. I skipped the Lialda yeseterday because of the way I felt - took one this morning.  My UC is not much worse - maybe a little more blood this morning = YUCK!! We will see on Tuesday.

Glad you guys are doing well!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/22/2008 10:31 AM (GMT -6)   
Brandon--I'll have to look into those, maybe make a trip to the whole foods market.
 
WishfulMA--I'm doing okay UC-wise; not any better but not any worse. I am having horrible ear pain so I'm going to my PCP later.
 I think I'm on the borderline for osteopenia and I've never been on pred (but I have a very thin frame)! I was told to take 1200 mg of Calcium and 600-1000 IU of Vitamin D per day.
 
Emory--I am SO glad that it seems to be just a fluke!
 
Elaine--I hope the nausea meds help; I always have a bottle filled just in case. I'm sorry that mesalamines are giving you so much trouble. Is it just the oral mesalamines or Canasa as well?
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/22/2008 11:24 AM (GMT -6)   
"I'm sorry that mesalamines are giving you so much trouble. Is it just the oral mesalamines or Canasa as well?"
Well, not sure - right now on both - but only one Lialda every other day - just got too sick with taking two or even every day.  So far tried a lot of 5ASA's so depending on my scope probably go to the next step whatever doc says.  I have never taken any pills for nausea.  MY primary care always said it was "nerves" as in anxiety and I take Xanax now which does help some.  As many times as I tell the doctors (all of them including the NPs) that I ONLY have nausea early morning - around 4 - does not matter what medication or what time I take it.  I have had it for YEARS off and one - mostly on!  I sweat, sometimes have cramps and chills, no vomiting since I had my gallbadder out but close sometimes.  I always took pepto bismall for it - now that is not really good when bleeding.
Soooooooo, could be UC, could be medication and (I am sure some think it could be in my head !! I just know I am very tired of it and want to feel better.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 

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