we're all going to be ok

UCinNC

Veteran Member

Joined : May 2007

Posts : 528

Posted 8/21/2007 6:01 PM (GMT -7)

Hi Gang. I had dinner with a woman I met recently who was diagnosed with Chron's at age 13 and now, at 27, is recovering from her third surgery for the disease. The surgery had major complications and she has really been through the ringer with her disease. But over dinner tonight, 4 months after her surgery, she was upbeat, and showed me her scars the same way someone would show a friend a bruise, as if it were no big deal. She had had an ileostomy for 6 months when she was younger, and though it was hard, she can laugh about it now. I am not sure I can adeqauetly convey why this dinner was so good except to say that it reminded me that usually our fears are worse than reality, that we are tough and can get through a lot of things we probably wouldn't imagine surviving very well until we are in it. Thanks to UC, I sometimes forget that I am a tough cookie and that things really are going to be ok. This is something that I need to hear sometimes, so I just wanted to pass it along in case any of you are like me and need to be reminded of that on occassion also. so, at the risk of sounding corny or preachy, I guess I just wanted to throw that out there to remind myself that this disease is managable, even if it takes some adjusting and sometimes scares the crap out of me.

ok, that's all.

29/Female/NC
Pancolitis dx 3/07.
Currently on 12 Asacol a day.
*100mg Imuran b/c steroid dependent. (will dose up to 125 or 150 eventually)
*back on prednisone while Imuran kicks in. Down to 5 mg on 8/13.
Various vitamins, probiotics, fish oil.
Engaged: June 1, 2007

Lonie

Veteran Member

Joined : Feb 2005

Posts : 6448

Posted 8/21/2007 6:18 PM (GMT -7)

Hey UCinNC, thanks for the encouraging note. It's so true; we can get through so many things with the right mindset. Sometimes our disease can play havoc with the mind, and that's why our forum is so important -- at least we have a place to vent and chat to others that understand. I always think how thankful I am that I "only have" UC everytime I go for an infusion and sit with people who are much sicker than I am. I've also been through some pretty tough challenges in my life and can I'm still here to tell the tale....

Again, thanks. Encouraging words are always welcome!

Carol

Remicade - will have my 18th infusion on July 12.

Imuran - 100 mgs....taken before bedtime

Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"

Co-Moderator for the UC Forum

Another UC wife

Veteran Member

Joined : Jun 2007

Posts : 2111

Posted 8/21/2007 9:31 PM (GMT -7)

Thanks for the post...........we have only been dealing with this for a good year since this last flare. When I see how long some other people have been dealing with theirs and the trials and tribulations they have had as well certainly puts things in perspective.

We are all at different levels and can certainly sympathize for those of us who are suffering even more.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided ulcerative colitis now & fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 starting to feel somewhat normal 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night.

Red_34

Forum Moderator

Joined : Apr 2004

Posts : 23572

Posted 8/22/2007 4:49 AM (GMT -7)

Yes, thanks for the encouraging post. There are times that I wallow in self pity or I'm having a horrible Uc day that is what I do too, remind myself that there are worse off people then me who no matter what still carry on with life with a smile on their face. I sometimes wonder back on it, my mother had Crohns and yet she still cared for me and my brothers with a great attitude. And no matter whatever we wanted, she was there to help us. She never complained and she never yelled at us (much!). I learned alot from my mother even though I lost her at 10 years old.

^{@--->--SHERRY--<---@}

^{Left sided Uc since '92 - meds - Colazal, Canasa (when needed), 6MP (50-75mgs), Forvia, Biotin (IN REMISSION - sort of!)}

^{Secondary Raynauds Syndrome '04 - meds - Norvasc}

^{Fibromyalgia '06 - no meds}

^{Severe seasonal allergies - meds - Allegra}

^{PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE}

^{@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@}

http://www.myspace.com/82595818

Another UC wife

Veteran Member

Joined : Jun 2007

Posts : 2111

Posted 8/22/2007 5:45 AM (GMT -7)

Wow Sherry - what a positive role model your Mom was and to lose her at such a young age is very tough. As young as you were you learned so many great life lessons that help to make you the person you are today. I'm sure it was not easy on your Dad either.

My Mom and Mother-in-law passed away within 6 months of each other 3 years ago. They were fortunuate to have long lives 83 and 82. We miss them terribly but I am happy that neither one of them have to know and worry about my husband's UC as they would have been so concerned in addition to their own health issues they had themselves.

It would have been hard to keep it from them as it would have interefered with our frequent trips and visits to them up north. As it is we still try to downplay it with family and friends as best we can - who wants to hear constant complaining even though everyone wants to help out and do "something". I tell people honestly just knowing we have your support and understanding is comforting. When he feels alright we see people and do some things - when he feels "crappy" he just wants to rest and not really be bothered even by me sometimes.

However on some of those "iffy" times when we go out and not know how long we will be out for once you are out and get out there and can be distracted in the company of others sometimes it works out to be a longer evening than planned. Which is a good thing.

What an unpredictable way to live sometimes.....we just take what we can get and live in the moment.

quincy

Elite Member

Joined : May 2003

Posts : 31256

Posted 8/22/2007 1:02 PM (GMT -7)

What an unpredictable way to live sometimes.....we just take what we can get and live in the moment.

That's the point I think...enjoying the days of feeling well and living in the moment and not ruining those times by fearing tomorrow.

I try to keep things in perspective, but not by saying I could be worse off or that someone else is worse than I am..so buck up. I've had that shoved down my throat for so long by others, that it was just a way for others to say I don't want to hear it..you don't look sick.

Ever notice how guilt seems to get in the way a lot?

I don't know what my "tomorrow" is going to be... and I certainly won't use any one else's suffering for my measuring stick of how I should feel.

I know my emotional state and situation at eny given moment can either have me totally elated or depressed. It's amazing how the mind goes when having a feeling crappy day.

I do have to allow myself the "state" and then kick myself in the butt to move on because it can get rather comfy in the depressed department.

Ever notice how our crappy days don't seem to mesh with every one else's? Which is a good thing..because at least we know there will be someone to have words to keep us going.

I think we will always struggle with something. But...it seems we all have a survivor attitude..from what I see from all the members who have come and gone. Scary, indeed...dealing with something that will be with us for the rest of our lives. But, we do have choices in our care, and taking some of that responsibility and not totally depending on our doctors or families and friends does tend to give us empowerment. Keeping in mind that we can get sicker as we age...it is wiser for us to look after ourselves the best way we can. Improving our ways of functioning and seeking options is at least something we can do for ourselves...regardless of what we have to deal with.

Oh...and life happens anyway with all the "other" stuff such as loved ones getting sick and the horrific loss it can cause.

No guarantees ... so, I agree it's good to live in the moment, learn from the past and prepare for the future. Imagine all the experience we're gaining daily. whew!

quincy

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals

~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime

~Natural Factors Multi Digestive Enzymes with supper

~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 !!!

Post Edited (quincy) : 8/22/2007 2:07:42 PM (GMT-6)

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