? for those in remicade remission

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Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 9/8/2008 7:31 AM (GMT -6)   
hi folks! I am finally able to say I am in remission- a little hesitant about it, but it is what it is. My question in this- for those who also have achieved remission thru Remicade, do you still have to allow yourselves 2 hours in the AM before leaving the house? I do- I get up, drink my coffee, do my morning stuff, & go to the bathroom about 4-6 times every day. If I don't have at least 4 bm's before I leave, it's anyone's guess as to what may happen! Although I haven't had any accidents in a very long time. So is this what I have to work with for the forseeable future?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 9/8/2008 8:04 AM (GMT -6)   
I still give myself a couple hours in the morning, although I only have to go twice usually and once in the evening.
The only thing that I would suggest is that I had to reduce myself from 12 asacol per day to 8. I talked to my GI about it first of course.
I also still watch what I eat, low residue diet mostly and low fat with not much red meat.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day - Probiotic twice daily - Methotrexate 3 pills once a week - Actonel once a week
Calcium supp. - 1 mg Folic Acid daily - Omega-3 once daily
13th Remicade infusion End of April


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 9/8/2008 8:21 AM (GMT -6)   
I go 2 to 4 times in the morning when in remission...depending on what, or how much, I've eaten the previous day. The more veggies I eat, the more I go. The more meat I eat the less I go. If I eat too many carbs I'm going all day. Even though my stools are normal.
.....Squattie


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 9/8/2008 9:12 AM (GMT -6)   
I found that coffee KILLS me. It makes me go almost instantly after i drink it. So no more coffee or capps for me =[ lol
Katrina, Senior in high school! =]
Dx with UC March 18,2008
 
Methotrexate shot once/weekly
15mg Prednisone,Iron,Multivitamin,Folic Acid
                                                     
"I can drop bombs with the best of them"
   hahah Can't we all?
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 10:56 AM (GMT -6)   
Why the heck do people talk about being in remission when they are still going 4-6 times a day? This confuses the heck out of my. I can have formed stools 4-6 times a day and they still come with urgency and whatever other happy-meal-toy style side effect that I get that day, but that is NOT remission to me. It's better than now, of course, but remission, as I understood it, was no symptoms. Zero. Normal.

Someone please explain?
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 9/8/2008 11:15 AM (GMT -6)   

I've been on Remicade since February of this year. I would say I gained remission within a few weeks. Formed stools only going once a day. I still have to be careful what I eat. Now, however, I am back to going 3-4 times a day with stools being anywhere from loose to mushy. It's been that way for about 2 weeks now.

V


31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp, probiotics
metamucil wafers, tumeric


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 9/8/2008 12:01 PM (GMT -6)   
Lucky777 said...
Why the heck do people talk about being in remission when they are still going 4-6 times a day? This confuses the heck out of my. I can have formed stools 4-6 times a day and they still come with urgency and whatever other happy-meal-toy style side effect that I get that day, but that is NOT remission to me. It's better than now, of course, but remission, as I understood it, was no symptoms. Zero. Normal.

Someone please explain?


Well if they were having that many bm's pre disease, than they can still be in remission. Some definitions say remission can also be a lessening of disease symptoms which this may be. Remission for me is no symptoms whatsoever, which would be the state I was in my early 20's. Remission is different for different people.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Starting Immuran
Hydrocort/Rowasa/Vitamin E Enemas rotated
Probiotis/MSM/GreenTea/VitD+Ca/SuperDHA


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/8/2008 12:02 PM (GMT -6)   
Sean- yes, clinically I am not in remission- last scope there was about 10" of inflammation. However, my current UC symptoms do not interfere with any part of my life- I eat what & how much I want, I work out of my home daily, I have not had to pull over while driving in months & months, I sleep thru the night nearly every night, I do not limit myself at all. The only "symptom" I have is urgency, which only comes in the morning along with my 4-6 formed, expected stools. Why do I consider that remission? For well over a year, I could barely work, weighed much less than 100lbs, could not eat/drink, was having bloody D 15-20x day, & have been hospitalized for UC/Remicade complications. Sooo.... I highly doubt I will ever have zero symptoms, my colon will never be like it was before the onset of UC. So to me, I am in remission. What about you- are you only having 4-6 formed bm's a day? If that's true, I'd be cancelling that remicade consult if I were you!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/8/2008 12:57 PM (GMT -6)   
Eva, I've been on Remicade since March, 2006. Before Remi, I was going 15-20 times a day, bleeding at least four days a week, etc. After the second infusion I had less frequent stools and rare blood. Over the next year I continued to get a little better each week. Now I go once or twice in the morning and usually once in the evening. I can get up and leave the house in an hour if I need to.

Remember, even though the Remicade may be blocking new inflammation and ulcers, the old ones still have to heal, and this takes time. So I think you can likely expect more improvement as that happens.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/8/2008 1:14 PM (GMT -6)   
I usually have one or two bm's in the morning, and then one at night, sometimes two. This I consider remission....before I had terrible bloody bms, urgency, and complete fatigue; really I could hardly move. My boyfriend and I joke because he always seems to have more bm's than me a day now!
Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 6:40 PM (GMT -6)   
I understand your opinion of your remission Eva, and I can see where someone can get to the point where a level of acceptance of quality of life is key. I guess I just get a little confused when people talk about normalcy and remission when it doesn't fit my definition, which is "Normal and Remission means that I am back to like I used to be before having UC". And I will accept no other answer for myself. Normal is normal.. not just simply better than now.

And no, I will utterly NOT stop my consult for remicade for that specific reason. I am not normal. My insides hurt, I can have 3 BMs to 20 BMs a day, blood, mucous, gas, pain, and immediacy - all or any combination, light or heavy. And I do not get to pick my good days from my bad days. It's like a coffee machine that something in my colon presses buttons and says "I'll take the double espresso.. with 2 sugars.. and non-fat creamer today please." It makes no sense, and there is no rhyme or reason. I wake up everyone morning and dread the first 10 minutes of wakefulness, as it usually sets the tone for my entire day. Today while walking downtown to an appointment I actually had to walk into a women's fitness and health center and ask them to use their only bathroom - I normally do not get embarrassed, but that was embarrassing. I have not been normal for the duration of this 7-month flare. And I want normal. If remicade can give me normal, I'll take it. If it can help, I'll take it. If I am not satisfied with my quality of life after months and months of remicade, I will likely opt to go sans-colon.

I digress. This disease angers me and is a cause of serious depression and anxiety, so my apologies if I seemed curt. I went to my first acupuncture treatment today, and it did give me some clarity and relaxation - but it was only a few hours lived.

I hate this friggin disease.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 10:07 PM (GMT -6)   
Everytime i took Remicade my remission periods got shorter and shorter :( now im down to flare up 2 weeks after a remicade dose, but i can only take it once a month..

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/9/2008 6:04 AM (GMT -6)   
Good luck, Sean..... I highly doubt I will ever get back to "normal", like I was pre-diagnosis, having one, maybe 2 normal bm's a day. no urgency, no mucous, no blood..... It surprised me to hear about your remicade consult- when I went on Remicade, I was extremely ill & unable to leave the house, really. So for someone like yourself, who appears able to live a fairly normal life, it just took me by surprise. Although they are saying that Remicade is gaining popularity as a first-line drug. Even if you choose surgery, it won't be like it was before. Yes, it can be depressing, but you will ALWAYS have this disease. Always, forever, 'til death do you part.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/9/2008 7:16 AM (GMT -6)   
My GI always said remission = 1 or 2 bowel movements per day.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/9/2008 7:22 AM (GMT -6)   
I suppose I never thought about how many bm's a day "normal" was before I was dx'd. After being so sick, I think having three to four bm's a day with no urgency, bleeding, or mucous...normal. As I stated before, my boyfriend who doesn't have UC sometimes has more bm's than I do a day; is he not "normal?" I think not being in remission or not "normal" really has to do with the many urgent bloody or mucous type bm's. Just my opinion though for what it's worth.
Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/9/2008 7:33 AM (GMT -6)   

yeah, me too...it's not the actual number of bm's per day, it's how they come out! My GI always claims that D is the big factor in determining flares- for me, going 4-6x a day, but definite formed stools, no D, is considered remission enough. And yes, the # varies depending on how much & what I eat. But it generally stays right around that 4-6. That's acceptable to me- I don't lose sleep, I'm able to go out & do whatever, I work.... I just have to allow myself bathroom time in the AM. And be able to get to a bathroom within 5 minutes if I get the urge. Which is better than in the past 2 years- I'd be in the backyard, or at the mailbox, & not be able to make it into the house & bathroom on time! This is my new normal- that's a concept that can be hard to accept- you need to deal with the fact that you now have a new normal, it will never be like it was "before". But once you do accept it, I find it to be liberating.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/9/2008 8:02 AM (GMT -6)   
I think remission for each of us is whatever we say it is. Grieving for the loss of our pre-UC selves is necessary and normal, but if this DD makes us sick enough for long enough, our concept of what is acceptable changes.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 8:58 AM (GMT -6)   
Eva, forgive me, but that sounded eerily like you were comparing the depths of your discomfort, symptoms, and pain as being more than mine, and I find that highly offensive. I think you should reevaluate how you compare yourself to others when using such very limited information. I have no idea where you determined that I had a fairly normal life.

And as far as accepting that one can never be as well as they were before the disease, well, I think that's hogwash. If someone accepts the limitations and changes their concept of what is acceptable quality of life, then that is fine. It is a decision for each person to make. But to, as a rule, give up hope that you can ever be as you were before the disease, and that someone should just accept that out of hand and it will be easier - that to me, is the most cynical and jaded perspective someone can achieve.

Call me a dreamer, but there's enough people out there that enter remission with that classified as being a return to normal for me to believe it can happen to me.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/9/2008 9:53 AM (GMT -6)   

no, you got me wrong, Sean- what made me "assume" you had a fairly normal life at the moment was that you talk about walking into town for appt's & such- simply having the ability & energy to do that means that you are not bed-ridden in agony with UC at this moment. I don't compare my suffering with anyone's- except when we compare symptoms & the like on this forum. No one can say "Oh, I'm in more pain that you are!". But obviously, some here who are basically house-bound or hospitalized may be able to say with some certainty that they are in worse shape than one who can go out for walks. You can't argue that. What do you mean when you say "before the disease"? Is that what you strive for, with current treatments? Because I'm saying you will have this disease the rest of your life, there is no "like it was before". Even post surgery. Which I don't think is cynical or jaded- it's a healthy attitude. I can even tell you exactly when I finally realized that... it wasn't a pretty moment! But you take what you can get- my 4-6 bm's a day is a small victory, true, but it's a victory nonetheless. Let's not fight- I wasn't implying anything. I dunno.... the whole remission issue- it'd be interesting if all of us asked our GI's just how many UC patients they've had that have gone into a clinical remission & stayed there. I'm betting not many- it seems like once the bodies immune system is out of whack, it's awful hard to get things right again.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/9/2008 9:57 AM (GMT -6)   
 
Judilyn said...
Grieving for the loss of our pre-UC selves is necessary and normal, but if this DD makes us sick enough for long enough, our concept of what is acceptable changes.

I forgot to say, this is one of the truest, most succint, & yes, saddest things I've ever read on here.... but SO well put! Kudos to you, Judy!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/9/2008 10:26 AM (GMT -6)   
I'm actually in clinical remission, Eva. My last colonoscopy was absolutely normal - no signs of UC whatsoever. I am not, however, exactly as I was before the disease struck. Instead on once a day, I go about three times. Maybe some of that is because my brain has been retrained to get my feet moving toward the bathroom as soon as I feel the urge, I don't know.

I spent about three months in anger ("Why me?") before I went into denial ("I'll be one of the few who goes into remission and never has any more problems") for about ten months. After the first 13 months of going to the bathroom at least every 45 minutes during my waking hours and at least every 2 hours all night, I was forced to give up the denial and admit that my life had changed forever.

You know what? Change is okay. My normal now isn't what it was ten years ago, but it's okay. I live a very functional life, basically do what I want and enjoy each day to its fullest because I never know what tomorrow will bring. My UC is in remission now, the Graves disease was successfully treated 'way before I got the UC, the Remi is actually making my arthritis amazingly better. So now my immune system has turnd in another direction and I'm developing excema. I just have to laugh. I've developed a view of my immune system as being a super-hero type set up to defend me. Unfortunately, it's one of those flawed types that flies into walls or fells building with its laser eyes or can't tell the difference between me and what it is supposed to be defending me from. So, while I deplore its aim, I have to admire its strength and persistence.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 11:20 AM (GMT -6)   
Yes Eva, you assumed most incorrectly - and apparently missed the part entirely about me ducking into the women's health and fitness to attack their commode (this was across the street from my appointment and about 5 car lengths away from my street parking). And I quite understand that the disease incurable. I am acutely aware. I'd bet all of us are. But remission means zero symptoms, and that is clinically obtainable - to advocate otherwise to me -is- cynical. I could care less if I hit the can 3 times a day, but had no blood, mucous, excess gas, or urgency. God, at this point I would just beg that if I could just hold it for 5 minutes no matter what stage I was in, I would be ok with life. But I am not. And I can't make it down the hallway of my own house most times - there is no stopping it, here it comes.. dang it, not quite at the toilet yet. So remission means none of that. Remission means I can have a job that isn't home-based. Remission means I can have a social life and leave my house for anything other than work (dear god if I didn't have a bathroom right outside of my office) or appointments. Remission means I can go camping with my family and tolerate the 2 hour drive into the mountains. Remission means I can take my dog for a walk around my neighborhood. And currently I have none of that, and quite frankly will accept nothing less.

I accept that you have accepted a tolerance level, and a quality of life that you can praise, and I am happy for you. The fact that you can say that you are comfortable with what you have to deal with and can manage to have a life with it is outstanding. I can only hope to get to where you are when I receive remicade, but I want more than that, and I believe it is possible. I want to plan my day, my week, my month, and my year. And right now I can't plan the next hour. I am seriously considering purchasing adult diapers for my car rides.

Judy, that is an interesting view of your immune system - I actually chuckled when I thought of the bumbling super-hero type. I do ant to say that I don't think I am in denial, I completely accept my current reality, but I have studies and a GI and people who I work with that profess clinical remission, so I know it is obtainable. You yourself included in that list now, and others on this site. I also would venture a guess that people who seek help in areas such as these do not always stay regular members once they do reach clinical remission, and that would be one reason why people like Eva might have such a viewpoint that it is rare. I do not believe it to be that rare, and my GI thinks that me NOT being in remission is rare.

I just don't think it ever helps to tell someone "you're screwed kid, get used to it". Man, I wonder if someone ever said that to Lance Armstrong, and what his reaction would be. Or any other cancer survivor.

I apologize if I seem confrontational, I do not want to come off that way, but I am being defensive. I just want to experience my life again.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/9/2008 12:07 PM (GMT -6)   

Look, I just don't think having to use the bathroom at a women's health club is that big a deal, regardless of how far you were from your car. And go for the adult diapers, tons of us on here, myself included, have used them. All the things remission means to you, from your last post, I have.... and don't forget that you initially jumped on my claim to be in remission, not the other way around. I'm not advocating anything for anyone- even Judy, who is in clinical remission, is not the way she was "before"! That's ALL I'm saying.... nothing more. And frankly, to look & look & look for something that will get you back to the way you were "before" is a waste of time- I don't think it'll happen. Deal with the cards you have & make the best of it. I'm not saying to be happy with the way things are for you now, not at all. Of course you will experience your life again- it just may include more trips to the toilet on a daily basis! And some of those trips may be at a womens health club. but anyway- I do wish you luck with the Remicade consult- is it with your GI? And do you plan to start it right off, or just talk about it with your doctor? whatever happens, it will get better for you.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/9/2008 12:12 PM (GMT -6)   
Okay, forum mod stepping in.....remember we all have different interpretations of remission and what we believe is an effective treatment to help us battle this darned illness. I think this is spiraling into something we don't want it to; not intentionally I'm sure because opinions do matter around here...we just want to keep in mind how different we all are.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/9/2008 12:14 PM (GMT -6)   
Wow.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.

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