does life seriously go on?

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gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 12/8/2007 11:46 PM (GMT -7)   
i am just so tired of life right now.  i am so tired of people who have "healthy lives" thinking they have a cure!  do they really think that we haven't thought of every last resort?  i'm sorry for being so negative, but i've had it and not sure how much longer i can handle these people who think they have it so bad when in reality they have a cold or even the flu!
Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 12/9/2007 5:09 AM (GMT -7)   
Hi Gela. Yes life goes on! Don't despair. If you take a look around, a really good look, there aren't that many "healthy" people about. Everybody seems to have something these days. And we all just keep on keeping on. :)

Cheer up! :)
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/9/2007 7:01 AM (GMT -7)   
Gela, life does go on, and sometimes that seems like a burden. Fortunately, I think much more often it feels like a gift. I get impatient when people whine about their colds and scrapes and allergies. Then I remember that I used to whine about those things too, and sometimes still do. Whatever is happening to me is a big deal. And I wouldn't wish UC on anyone, although there have been times when I've wished someone could, just for one day, feel the way I feel in the midst of a bad flare. Bad me.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/9/2007 7:07 AM (GMT -7)   
I think we all feel that way at one time or another. I especially think like that at times when people start complaining about having a one or two day bout of D because of a stomach bug. If they only knew what suffering from D every day for years feels like then they wouldn't complain so much. But then I have to take a step back and realize that yes, for them it is a big deal. And the ones that think they have a cure - their intentions are good. Maybe they just want to be able to offer some sort of hope. It's human nature to want to help others.


 @--->--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~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
                       "The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

Post Edited (Red_34) : 12/10/2007 4:55:11 AM (GMT-7)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/9/2007 10:07 AM (GMT -7)   
It is so discouraging to have this dreaded thing and feel so awful most of the time. My husband just happens to be at a point that things are looking fairly good right now. The past two days however were most uncomfortable and really affected his mood and personality. I keep asking him to the point I know I am nagging him but I am concerned with the coming off of the prednisone even though he has these other meds making a difference in his quality of life that maybe he is regressing a bit.

We are getting a blood test tomorrow as his local Dr wants to check the cortisol(?) level before he totally stops the 2 1/2 mg of prednisone. And maybe this is all part of what I have read when you are coming off the prednisone and just bite the bullet so to speak and grin and bear it and hopefully it will get better. Hopefully his body will adjust and produce whatever it is it is supposed to do in the absence of the prednisone that he showed became a dependancy for him. Wish he never was put on it but I guess overall it was necessary. Even the Mayo clinic wasn't overly concerned that he was on it and has been and now tapering. If they were involved in his care from the get go maybe they would have done everything just like his local Dr. has. Who knows....

It is indeed very discouraging to not feel normal and plan every single thing you do before you do it to allow for whatever social thing or normal day to day things you need to accomplish. You can't just run out the door without making various preparations.

We live in an over 55 community with a variety of different ages from baby boomers to the elderly so we see and hear about alot of different illnesses and sicknesses. Some are minor in comparison to what he is going through and others are so much more serious. So sometimes it is annoying to listen to the little "ache and pain" type things as you say and then he counts his blessings that he is not in the unfortunate state that others are in.

Every once in awhile it is ok to have a "Pity Party" it is part of the coping mechanisms. I have them as the caretaker who gets the brunt of his frustration that he can't help....fortunately I am not sick. I am one of those with the little "aches and pains" who DEFINITELY keeps the complaints at a real minimum now having lived with what he is going through. Gives me a whole new appreciation for what real suffering is. My heart goes out to each and every one of you and what you are going through. It is uplifting to read every once in awhile progress someone has to report and you just know how important it is in their lives to get some of those "better days" to get a reprieve from all of this.

Take care.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 2 1/2 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/9/2007 11:40 AM (GMT -7)   
Being sick with anything, including a cold/flu isn't ever fun, and for those who don't live with a chronic illness everyday but get sick with colds/flus still have every right to complain, afterall if that's the worst they've ever felt then how do they know it's virtually nothing compared to having a chronic illness. It's best not to fault those who don't have a life-long illness, they cannot help the fact that they don't understand what we go through.


:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/9/2007 12:34 PM (GMT -7)   
I was going to post something like this, but about the part where you said "i am so tired of people who have "healthy lives" thinking they have a cure"- I come across this constantly.  People who don't even know what UC is, and they start coming after me, like "You need to eat cabbage!" or "You are too stressed!  You need this herb"  I wish they would shut up or I had the nerve to tell them to shut up!! 

Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007: Increased Remicade dosage to 660mg every 6 weeks, diagnosed with Psoriatic Arthritis and Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/9/2007 5:24 PM (GMT -7)   
Actually, in some ways, I think having had UC flares makes me better able to handle the normal ups and downs of life. I know that I've been through hell - literally - and survived. And not only survived but achieved years of remission, met a wonderful man and got married.

I never took care of myself before I got sick. Because weight gain wasn't an issue, I thought that gave me a free pass to load my body with sugary junk - all day every day - and only half-heartedly exercised. Never took any healthy supplements. UC was a wake up call for me. Now I eat very healthy, exercise and weight train, have gained healthy weight, lowered my cholesterol and am in better shape than ever. I can pass for someone a good ten years younger.

In addition, I'm better able to relate to and emphasize with others that are suffering from various ailments. When my elderly mother ended up in the ER with viral pneumonia, I was able to be calm and supportive because, to a certain extent, I'd been there and wasn't freaked out by the hospital, needles, blood draws, etc. It may sound strange, but you could say a UC diagnosis helped me become a better, healthier person.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine. Off the pred and doing well.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 12/10/2007 4:57 AM (GMT -7)   
Just remember one thing...These whiners, when they are hit with something, will never be able to handle it because they've never been tested. I laugh in these people's faces!! They go home after work whining about everything under the sun, being lazy. I go home and run 4miles and bike 40 and I'm just getting warmed up. Plus, hold up a very stressful job. If they can't do it "healthy" what do you think would happen if they came down with something?! Besides, I agree with somebody already said, Everybody has something. If they don't have something yet, then they will. Just of matter of time.
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.

Post Edited (xtremefit) : 12/10/2007 5:02:12 AM (GMT-7)


Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 12/10/2007 1:33 PM (GMT -7)   
xtremefit I understand what you mean. I have had many workouts where i have to stop after every couple of sets to hit the toilet, or get off the treadmill a few times to go to the bathroom. it sucks, but i feel if i just give up and say "i cant do this" ill just get worse.

last february i couldnt even walk without a cane, was bleeding constantly and was exhausted. This morning i was leg pressing 600 lbs for reps, squating 275, and did a full chest and forearm workout....after my cardio workout. its an up and down process. im sure i will have low points, but i will also have high points. the only thing to do is to stay positive and try to work around the flares.
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/10/2007 2:13 PM (GMT -7)   
I agree a lot of the sentiments already expressed here. Other people just don't know, I have a friend who has IBS not Chron's or UC but IBS and when I was flaring going 25+ times a day barely able to function with D&B and horrible cramping, she who is newly single and wanting to see her old friends again, tells me how she knows what it's like and because she has IBS and can't I just meet her for a drink. I pretty much just told her that she actually has no idea what it's like, that what I have is completely different than what she has and some people are just not going to get it....I had told her how basically I was getting up to go to work at 6:30 and coming home at 6:30 and going to bed at 8 and then she's like, well I can come over for some wine and I was like, listen you are not understanding, I am SICK and need to rest and etc....

Anyhow, you need to surround yourself with those that do understand are are supportive of you. I also believe everyone get's whacked with something and for those that you can't see it, they have their issues too but yeah, sometimes I just want them to shut up and deal with their little itty bitty problem.
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


cap'n colitis
Regular Member


Date Joined Nov 2007
Total Posts : 51
   Posted 12/10/2007 2:18 PM (GMT -7)   
I have to remind myself, even with UC, not to feel too sorry for myself. All I have to do is read a little bit on this forum, or any other forum on this board, and I can almopst certainly find someone who is in a world of hurt far worse than me. I count my blessings every day that I am above ground.
Male - Age 39
Diagnosed in 1988
Moderate Pan Colitis 10 years ago, but mild and fairly controlled since then
40mg Pred 30mg Pred 25mg Pred 20mg 15mg 10mg 5mg  0mg Pred
100mg Azathioprene
800mg Asacol 2x daily
20mg Omeprazole
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/10/2007 3:52 PM (GMT -7)   
Well in all fairness there could be many IBSers that have an idea what we go through since their main symptoms is frequency of D or even terrible C, they don't experiance the bleeding or the extraintestinal manifestations that go along with IBD (CD or UC), but bowel frequency and discomfort many of them can relate to (granted it's not a serious a syndrom compared to a chronic illness).

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/10/2007 4:07 PM (GMT -7)   
IBS definately is not an easy illness to have either. Maybe it pales in comparison to UC or CD but Ibs'ers have their fair share of challenges too. My best friend has IBS - C and I think bouts of D, I'm not sure.....but she tells me all the time that if her having IBS offers a small glimpse into my world then she has major sympathy for what I have to go thru day after day. Yes, some people just don't understand what it's like to battle this beast and it's usually those people I reserve the comment that - ok this is going to sound harsh - I'm sorry I can't go anywhere just now because I'm peeing blood out my tush! For the most part, all my friends and family don't push me to do things because they have seen me really sick before and they know that I am not making this up nor exaggerating my symptoms.
 @--->--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~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
                       "The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 

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