Will it ever go away?

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Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 7/20/2008 3:29 AM (GMT -6)   
I was just browsing the Crohn's and colitis website and was reading the FAQs.

"Will it ever go away?

Occasionally one sees individuals with Crohn's disease and ulcerative colitis who have one attack and never have another one. A more common pattern however is for it to settle for long periods of time and then act up. The vast majority of people with Crohn's disease and ulcerative colitis lead normal and productive lives. They work, have families and go on vacations like anyone else."


I don't lead a normal life. At all. Sure, I work, have a family, and go on vacation, but I can only work part time in the evenings when my bowels are calm--and even then I still go to the washroom or my tummy hurts. I have a baby girl who is 17 months--how I long to just get up in the morning and go for a walk, go to the mall, take her the park--like all the other moms. But no, we rarely go out as I spend my days in my apartment going to the washroom; or just too worried that I won't make it. If we go out it's always in the evening. Vacation? Sure, we're going away in October for a few days. I pray that I'm healthy--UC and car rides??!!! No fun at all. Guess I'll pack lots of underwear....LOTS!

I hardly call this life normal. My life consists of working, raising a family, and planning vacations, however all I do is stress about it all. Am I going to make my whole shift without running to the washroom--if not, who's around to watch the floor.

If I take my girl to the park tonight--am I gonna have an accident on the way?? Is there a washroom big enough for the stroller? Am I gonna get her out of the car seat in time or will it be too late..

Vacation....plllllllllllleeeeaaaasssee let me be healthy enough to travel.

Honestly, I find the answer to "Will it ever go away" very offensive. I highly doubt you all are living the normal life that this answer is implying. And if you all are...I'm jealous. What I'd give to be "normal". Productive? Sure, I get tons of reading done while sitting on the toilet all day.

Thanks for listening to my rant...I'm interested in your opinions as well. skull
Diagnosed with UC in August 2005. 
Suffered for my whole life before being diagnosed. 
Told to "Eat more fibre." 
 
Currently on:

Salofalk 1500mg x 4/day
Entocort
6mg x 1/day
Entocort increased to:
9mg x 3/day as of 2.14.08


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 7/20/2008 3:58 AM (GMT -6)   
Hi...I can understand how you feel....living with a disease is so subjective, it would be impossible for one statement to cover all the bases. There is truth to the statement....it's hopeful for some, disrespect for others.

Many do have "normal" productive lives but our life situations would probably all differ...what's normal anyway? I know what I wouldn't have been able to deal with...I have adjusted my life and made decisions based on what I can handle and what I need. I have the opportunity to do so...If I were not married to whom I am or had different doctors..my life would probably have been extremely different for the negative.

You life is as it is with much responsibility, but that doesn't mean you don't have options or can't make some adjustments.

I see you're on 6000mg Salofalk daily...it could be causing some of your diarrhea...maybe you can discuss with your doc to lower the dosage by one pill a week to see if it can improve some of your symptoms.

I strongly suggest you request a rectal med to the mix...Sakofalk retention enemas or the suppositories will help with rectal inflammation and some of the urgencies.

When you're travelling, maybe you can consider to take some imodium to lessen the bms and anxiety of having to find a bathroom.

Add some fibre supplements to help bulk up the stool....can help to give you more formed bms, ease some of the bathroom times.

Some UCers get to the point where surgery is considered....quality of life seems to be the end result. always a consideration if you can't find relief from your symptoms.

Hang tough....seek options that can possibly work for your situation.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th 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 ....zymactive 3 - 5x 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 !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/20/2008 8:32 AM (GMT -6)   
Asia, as hard as it is for us to believe and to accept, most people with UC do live normal lives, possibly with some small adaptations. Those of us who frequent this board overwhelmingly are those who aren't in this "majority." We're the ones who have more flares, are less responsive to medications, who have other complications. If you've noticed, people who post a lot when they're in flare tend to fall away from the board when they go into remission. That's because they're out there living their "normal" lives.

Don't despair. Keep working with your doctors and trying new options, and you're likely going to find a solution that gives you your life back. If medical treatment can't do it, surgery is a complete 100% cure for UC, and everyone I've talked to is thrilled with their outcome.

I was in flare for five years, now in a solid remission for more than two. I consider my life normal now. I hope you find remission soon and can do all the things you want to do.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
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.


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 7/20/2008 9:16 AM (GMT -6)   
Asia,
Hang in there, you will get to a point where it gets easier. The sucky thing is that you just can't count on when this will happen or when it does, how long will it last. I'm in remission now and if I am out for the day, especially walking around for long periods of time, I do think about "where is the closest bathroom".
I am getting ready to leave now to go to Newport, RI for the day with hubby and friends, and the bathroom will definitely be on my mind, especially if I get a little rumbling in the belly.

I agree with Quincy about the rectal meds, they can really make a difference. If the meds you are on now are not working, ask to try another med. We are all different and sometimes it is just a matter of finding the right med for US.

I was in a very long remission as you can see in my signature, so I am living proof that it can happen. I am just hoping that this will prove to be another long remission. Good Luck. I hope you see some improvement soon.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/20/2008 10:10 AM (GMT -6)   
I know what you mean--it is definitely frustrating. Right now, while in a flare, I am absolutely NOT
living a "normal, productive life." I had to quit my summer job and the majority of the time I have left the house this summer has been to go to the hospital. I just sit around my house and waste time in front of a screen (TV or computer) most of the time.
 
Even in remission, I wasn't living a pre-UC normal life. But I created a new "normal" then, and it was definitely better than being in a flare, so I learned to accept that. I do think that this FAQ is misleading--I don't think one can live a completely pre-UC normal life unless they have very mild UC or Crohn's.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 7/20/2008 11:37 AM (GMT -6)   
Most of the people here at HW aren't the lucky ones that have one flare and it goes into remission for a long time, that's why it's so busy here, for those of us who have multiple or constant flares.

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

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