afraid of remission

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/20/2008 11:11 AM (GMT -6)   
this may sound nuts - it certainly does to me - but I realized yesterday that I am having some anxiety about my greatly improved health that the rectal meds have been providing me the last week and a half. I don't know whether or not I am in "remission," technically, but I do know that I am afraid of this good health because I am afraid it won't last. I feel like I have gotten out of the danger zone, and then I remember that I will have UC the rest of my life and that my current good health could disappear this afternoon, and then I get nervous about believing in a healthy future. I feel like this good health reminds me what my life was like before UC, and the fact that I will never again not have UC (unless I lose my colon). Does that make any sense? have any of oyu ever felt this way? I am coming up on my one-year anniversary of my diagnosis, and the last 2 weeks is the best I have felt since getting sick, so maybe this gets easier with time, maybe this is strange for me, in part, because it is my first experienced with renewed health since getting UC? I don't know. Just wanted to know if any of you ever feel this?
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4509
   Posted 2/20/2008 11:23 AM (GMT -6)   
I just wanted to say you're not alone in feeling this way. I definitely have felt the same when I was improving. I was happy I felt better, but also scared it wouldn't last. It's depressing knowing I'll have this forever, but I try to keep myself positive.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/20/2008 11:31 AM (GMT -6)   
I always get nervous when things in life go well. A therapist told me that was not a good thing. For me personally whenever things start to go well, something bad happens. Well I am trying to accept that something bad would have happened anyway, not just because I relaxed and wasn't on the constant lookout for something 'bad' to happen.

I've also started to accept that there will be a ton of ups and downs no matter what and all I can change is the way that I deal with it, not the fact that it is happening.

I was scared (and still am...ups and downs, today is a down day) when I first started getting better too, because you kow how bad it can be, you know what you could go back to and you know how well you feel now.

All I do is try to be positive and enjoy the feeling well, the bad may or may not come in one form or another and when/if it does, deal with it then, enjoy yourself as much as you can for as long as you can.

right now I am pretty upset with everything that is going on but I have a right to be and I know I can deal with it and try not to let it control me and know that I will be ok (hopefully = )
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 2/20/2008 11:37 AM (GMT -6)   
I think i don't remember what remission feels like. I do get afraid of it even though I have been there before. i had a great 5 yr remission. This flare has been going for a year and a half now and i can't remember what it feels like to feel good. In my head i know that it is possible to live a "normal" life. In my heart i just don't remember what it was like.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   Posted 2/20/2008 11:45 AM (GMT -6)   
UCinNC,

I think this is about the value you place on your condition. You seem to be giving UC a lot of respect. It's like you talk about it as a Darth Vader type bad guy. Does it deserve such respect? Does this condition deserve the amount of worry some of us give it. It attacks your colon? Are you going to let it attack your mind as well?

Right now for me personally I do not "have" UC. I had it last summer but I do not have it now. This is my firm believe. People may say I'm deluding myself, people may say I'm in denial, people may say this isn't correct medically. In the nicest possible way I couldn't care what they think. They are missing the point. I refuse to put any labels on myself about being chronically ill. I may get another flare up and I'll deal with that if and when it arises. My life is normal now the same as it was before my first flare and I'm certianly not gonna pollute my sub-conscious with tales of what if and maybe....its polluted enough already with other stuff..

You need to stay in the present. You really don't know what will happen in the future. It's not something you can control. It makes no logical sense to worry about something you cannot control. It's tough I grant you to try and not worry about it. There's a healthy balance. You can be knowledgeable about the condition and work towards staying healthy but as soon as that balance shifts to worry you let the thing grip you.

The only fear you really have is the unknown. You don't really fear UC. You will get through it. You've gotten through the lat 12 months. But I think you maybe be fearing not knowing what the future holds. I apologise if I'm being presumptious.

Statements like remission, flare, cure...they are pretty subjective. Work with how you feel yourself and not with labels.

So it's you one year anniversary of having this condition. Why not label it as your one year anniversary of having dealt with this condition....successfully!

D


400-800 mg Asacol a day
Iron supplment,Probioitcs
Balanced Diet (...ish!!), Reduced Stress
 
"There are only about a half dozen things that make 80% of the difference in any area of our lives."
 
 
 
 
 
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/20/2008 11:47 AM (GMT -6)   
I can say from my own experience that yes, it does get better in time. When you start to have your feel good days, you just go with it and at least for me, my Uc doesn't enter my mind. I take one day at a time nor do I try to think of the what if's. I found that by thinking of the future, it does depress me so I try not to. However, when I am having my good days I don't want it to end so when I do get a symptom, it depresses me. But I'm an eternal optimist so I tell myself, ok - this is a blip I can deal with it and if it becomes worse just get proactive in my care.

No, you're not crazy for feeling that way. I think many of the newly diagnosed feel the same as you.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5186
   Posted 2/20/2008 12:21 PM (GMT -6)   
Think of that quote from Maya Angelou in SBauer07's signature: "if you can't change something, change your attitude." You have to train your mind to function in the present & not to dwell on the future, which NO ONE can predict. When I was a schoolchild & money was short at home, I would sometimes comment to my mother that it must be great to be rich. Having lived thru the Great Depression, she would usually reply: "People can lose their money overnight." She had seen it happen. The future, to anyone with a functioning adult brain, is-- by its nature-- somewhat scary. You are now improving & hopefully will get your UC under control soon. That's an achievement to feel good about. Your fiance understands your struggle & tries to be supportive: another big plus in your favor. Maybe you can't run a marathon right now, but there are still "normal" activities you can enjoy. Do it! How do diabetics get on with life? They are also unlikely to ever be cured. UC can be a real ordeal to cope with, but you're getting a handle on it. Take a deep breath & tell yourself to move on positively. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/20/2008 3:22 PM (GMT -6)   
Actually, UC does deserve respect....for if you don't understand it and learn how to deal/medicate/heal, the feeling of desperation and failure and longing for how you were before will only reward you with misery. Not a good pay-off. Count feeling well as a good thing.

UCinNC...you have a huge life altering event coming up in the Fall. The planning and preparation and stress as well as having UC will undoubtedly coincide/collide.

Try to accept that it is what it is, and figure out what can work for you to maintain the status quo while going through this year.

You might just very well surprise yourself.

I used to fear the next flare until I got the hang of using my meds....as well, having a doctor who was supportive helped a lot!

Living with UC is what you make of it ...it's a learning process, but it isn't static...and as life happens at the same time, you will probably have to be one step ahead to recognise all what's happening with your body. Knowledge is definitely power. Experience, although unfortunate, is the teacher.

There is nothing ever written that you'll have to have your colon removed. It's an option when all else fails....but try not recycle the fears of something that may never happen. Don't punish yourself for doing what it takes to feel well. You will flare again, but you also know more now than even a month ago. You've come a long way!

Hang tough,
quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 640
   Posted 2/20/2008 6:24 PM (GMT -6)   
Live in the moment.
Live in the moment.
Live in the moment.

Try as hard as you can to enjoy this time of feeling better. It may continue for the rest of your life! No one knows if it you will be trouble-free the rest of your life or if the rest of your life is today! Don't waste time with what-ifs about the future.

It takes practice, and I don't claim to be an expert by any stretch, but I know that when I try hard to live in the moment,
my anxiety and my depression are at much lower levels than when I ruminate about the past or fret about the future.

Live in the moment -- and ENJOY!

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/21/2008 9:33 PM (GMT -6)   
thanks, everyone, for the replies. I know you're all SO right about living in the present but jeez, I couldn't do that before UC much less now. in any case, rest assured that I am out living my life. I swim and run about 4 -5 days a week, work full time, eat everything in sight now that my appetite is back (probably need to stop that), see friends.... life is totally notmal right now, it is just that I get hit with waves of panic now and then - raw panic - and then I start thinking... but I will work on this present thing. thanks for listening. this forum brings me great comfort.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 2/21/2008 10:07 PM (GMT -6)   
Hi...well, you're doing much more than I will ever do...so it's definitely subjective as to living in the present.

I think you should consider to talk to someone and possibly research cognitive behavioural therapy...it could just very well help with that next step into dealing with panic...

It's all about perspective and what you think.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5186
   Posted 2/21/2008 10:10 PM (GMT -6)   
It's very hard to unlearn the panic response to UC. We just have to keep on trying to overcome our fears. That's the way life is. about 4-5 yrs after diagnosis I went to an appointment with my gastro in a very alarmed state because a bloody flare had started. When I mentioned the blood, my gastro asked calmly: "How much blood do you think you lost? A quart, a gallon, a cup?" THAT got me laughing in spite of my anxiety! It's great if the forum comments are helping to bring you more peace of mind. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

tinman
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/21/2008 11:34 PM (GMT -6)   
I most certainly agree with the idea of feeling nervous when you're in a remission. You want to keep on feeling good for the rest of your life, but you know that this is unlikely to happen. Lame as it sounds, my best advice is simply to enjoy it while the feeling lasts. Let's face it, having to live with UC sucks...it makes it difficult to plan for the future, and it causes anyone who is not completely ignorant about their condition some anxiety when they start to look down the road. Offsetting this, it also gives us a much greater appreciation for every day that we get when we do feel "normal". You can't spend the rest of your life longing for the days before you were diagnosed with UC, wishing that this would all just go away. What you can do, is not let this disease define who you are as a person, and take advantage of every opportunity you get to enjoy your life.
 
Now maybe I can bring a little bit of hope to everyone with UC who's worrying that perhaps they will one day need to have their colon removed. My father was diagnosed with UC when he was 14, and he battled with pancolitis for 35 years. A large portion of those years were spent in painful, debilhatating flares. Through a combination of the pain and suffering caused by the disease, and the side-effects of the medications he was taking (particularly the prednisone) he became a very angry, unpredictable, and generally unhappy man. Finally, in 2004, it became necessary for him to have an ileostomy. Although I know it's probably the hardest thing he's ever had to go through, in retrospect everyone (including himself) sees it as a benefit. I think my dad put it best a couple of years ago when he said, "Yeah, there's definitely some parts of my life that are unpleasant, but overall it's a big improvement. I can predict how I'm gonna feel from day to day...there's no more pain...and there's no more fear about the future." And do you wanna know something else? I can't remember any point in my childhood where he was as contented or as emotionally stable as he is after having his colon removed.

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/21/2008 11:57 PM (GMT -6)   
i certainly know what you mean.  this is the first time in 9 years that i haven't been symptomatic, and i didn't have to worry about finding a bathroom when going to a public place.,  it's the first time in months i don't have to worry about soiling myself...  it is liberating..  i hope i never flare again! 
 
Can you please alter your signature to 10 lines or less per forum rules - spaces in between lines count as a line also.  Thank you!

Post Edited By Moderator (Red_34) : 2/22/2008 3:13:26 PM (GMT-7)


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 640
   Posted 2/22/2008 4:50 PM (GMT -6)   
That's the spirit, UC in NC.

The best way to try to stay in the moment is to teach yourself to become aware of when you are not doing so and to bring your mind consciously back to right here, right now. If you don't allow yourself down that path of what if, I can guarantee that you will be happier today, and probably tomorrow, too. Grab hold of your mind and keep it in the present.

Good luck! And enjoy your remission.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

Post Edited (MitzMN) : 2/22/2008 3:46:13 PM (GMT-7)


JOVIGIRL71
Veteran Member


Date Joined Sep 2003
Total Posts : 660
   Posted 2/22/2008 5:14 PM (GMT -6)   
I also understand that scary feeling of remission. I've had uc most of my life and have truly only been in remission 2 times. Now being the 2nd time in remission right now.
I am scared because I feel good right now and in in time I will feel awful again. But I live it up now while I can and deal with the flare ups when they come. We can't go on living asking ourselves..... When will my next flare up be, when will it happen? We take life one day at a time having this disease.
Its a tough living with UC but we all have each other to get through it.
So hang in there. Don't be scared. We all know how you feel.
I am glad you feel better, take care :-)
~~ Donna ~~
 
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)
 

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