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Do you ever get scared?

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Do you ever get scared?  
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Posted 9/24/2007 8:16 AM (GMT -7)
I was wondering do you ever get scared while having UC? I was reading that this condition can also get you Primary sclerosing cholangitis. That really scares me since there is no treatment for it.
UC: Lower Left Diagnosed in July 2005

Remission

Azathioprine125MG

Colozal 750MG 6 pills a day

Carafate 1GM 4x a day

 

Posted 9/24/2007 8:21 AM (GMT -7)
When I was first diagnosed, I was scared all the time. Then, I decided I can live my life in fear... or just live my life. Millions of people on this planet have much worse diseases (AIDS, cancer, for example). I'm not going to let this get me down. If I lived in constant fear, I would never leave my house. What kind of life is that?!!
Posted 9/24/2007 8:50 AM (GMT -7)
I'm sorry to say that after 10 yrs of UC I still get scared. It's not as often as it use to be but every once and awhie I break down a bit. This flare has been going on for a year, I am steroid dependent and waiting for imuran to kick in. What scares me most at this moment is that I am going to mexico for my father inlaw's wedding. I am so scared of getting worse while i'm there and being sick for another year!!!! It's normal to get scared but it's important to have someone to talk to about it. When i freak my husband, mom, or best friend are always there to show me that no matter what happens everything will be fine. It's scary but I always get through and usually come out the other end a better person.

To calm my fears I overprepare everything. I have extra clothes stashed in every car, cottenelle wipes everywhere, anytime I go anywhere I try to get maps or info ahead of time with bathrooms mapped out. I drive everywhere in case I need to make an emergency stop.

Have you considered seeking a therapist? Living with a chronic illness is hard and a psychologist really helped me deal with the fear and get my life back to "normal".
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 15 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

Posted 9/24/2007 9:33 AM (GMT -7)
You should address this Q to Quincy-- who has PSC in addition to UC. Her replies in various threads on this site radiate confidence. Check them out! / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Posted 9/24/2007 9:40 AM (GMT -7)
No I'm rarely ever scared about the future of this UC, I'm more concerned with the present and I look every day at my poop to see if it's changed. Once it's changed to formed, less stools a day, I'm on the road to recovery. Until than, my eyes our in the toilet and not at what the future holds or doesn't hold because I know I didn't have this 3 years ago and so I know I won't have it all my life.

I had the Rocephin shot and 2 weeks of Omnicef, this helped with my bloating and digestion. That was 4/15/07

Had Cipro and Predison for 10 & 5 days, 7/3/07

Colonoscopy & Endoscopy 7/27, Left sided colitis and near cecum (mild)

Had a shot of steriods for my ear inflammation 8/31

Stopped Colozal 9/11/07

On Standard Process supplements, trying a new protocal from a

natural path as of 9/10/07

Posted 9/24/2007 9:54 AM (GMT -7)
I figure what is going to happen will happen if I am scared and worry all the time are If I just live my life and not worry, so I choose not to worry about what hasnt happened yet. especially if I have no control over it. But then I am the type of person who believes when it is my time to go, then I will go weather I am ready are not. Worrying, being afraid, and stress is hard on your body. It is hard on you blood pressure in turn is hard on your heart. The worry over something you may never get, can cause you problems you may not have had other wise. I know it is easier said then done not to stress over health issues,but my cardialogist always says stress will make it worse.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

Posted 9/24/2007 10:25 AM (GMT -7)
yes, I am scared now.  I have had UC for 7 years and up until two months ago, thought hey I can manage this, I'd get slack w/my meds and then start taking them again and be fine, no problem at all.  I would always say, yes I have UC but I am lucky b/c I could have it a lot worse and seriously I could have it a alot worse.....I keep on trying to say that to myself.

Now I have minimal change disease MCD which can be caused from taking drugs that contain mesalamine if you are 'hypersensitive' to them and the timeline fits, now no one can say 100% for sure but within 6 mos to a year of me taking it I began to have symptoms of MCD (edema) and did not get dx'd w/it until 9/6/07.  (if your urine is frothy in the toilet get a urinalysis to check for proteins - symptom of MCD too).

I can no longer take meslamine drugs for my 'mild' colitis and after this course of prednisone for the MCD (also hoping it benfits my UC) I don't know what drugs I will take to help me stay in remission and the mesalmine drugs are the easier drugs on your system and I am scared of the side effects of taking other drugs.  So I have 5.5 more months of prednisone and in 1.5 mos will begin researching my options and possibly changing Dr's. for my UC right now I can only handle the MCD.

I wish my post could help you feel better but I don't think it's that uplifting.  Yes, I am scared of how I can manage my symptoms the safest and most effective way and also want to begin a family (as soon as I am healthy again).

Maybe the best thing to say would be I was not really scared for 7 years...... I am scared now but I hope that within a year I have a regimine that works for me and one that I am comfortable with and keeps me in remission for a long time.  Also when I was first dx'd I was scared then of course too.

Beth, 31

UC Diagnosed March 2000

Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20 mg 1xday

Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.

Posted 9/24/2007 10:26 AM (GMT -7)
NEVER!!!
Posted 9/24/2007 10:33 AM (GMT -7)
When I was first diagnosed, I was terrified. Not only because I didn't know what my future held but because no doc ever sat me down to explain this disease. So I was pretty much in the dark. It took me years to realize that no it's not normal to go to the bathroom 15 times a day. But now that I got a fairly good handle on my Uc and being the voracious reader that I am, made the fear less to now it doesn't faze me. I am not scared to do things or go anywhere because I know my limitations. If I get extra goodies that come with this disease, so be it. I will handle that when the time comes but I'm not going to give in to any fear, especially to Uc. I won't let it. I have already dealt with many things that come with this disease and yes it gets frustrating but enough to scare me? No

 @--->--SHERRY--<---@

Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia

Secondary Reynauds Syndrome - '04 - Norvasc

Fibromyalgia - '06 

PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE

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Posted 9/24/2007 11:20 AM (GMT -7)
When I was first diagnosed and was desperately ill, yes. My GI gave me no hope of ever feeling any better and talked like there was nothing I could do but take drugs until I got sick enough to have my colon removed. Then she was surprised when I burst into tears.

The best antidote for fear is knowledge. I agree with Red... read everything you can get your hands on, talk to other IBDers and keep an open mind about alternative treatment options.
Diagnosed with ulcerative colitis spring 1999

C-scope confirmed UC diagnosis 9/18/2007

 

Maintenance dose sulfasalazine, back on a pred taper for first flare in years

Probiotics, l-glutamine and fish oil caps. About to start George's aloe vera juice and Mucosaheal.

Posted 9/24/2007 11:38 AM (GMT -7)
During my worse flare , the first six months of this year , one of my best friends was dying of Lung Cancer, ( she died in april , way too young) THAT was scary . So no, after seeing her die the way she did ive got nothing to be scared about ,

Tab

That was a bit depressing wasnt it ,sorry lol !!
Diagnosed Proctitis 2003

leaped to Pancolitis May 2007

bye bye Pred (fingerscrossed )!

2000mg pentasa a day

omega 3

Allergic to Sulphalizine

In remission since june

Multivitamin and calcium supplement

Posted 9/24/2007 12:00 PM (GMT -7)
Nope. One of my best girlfriend's lost her 20 month old. After I saw her and her family go through that I realized I would never be scared of things I can't control anymore.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 9/24/2007 1:44 PM (GMT -7)
I do - at one point I was terrified to leave the house - to even go out in the yard. I battle it every day.

I have a cousin that it is the same age as me 35 - he passed away this summer -
I try to tell myself - that if I poop all over the place that at least I have one more day with my kids. Some times that does not help, but I have noticed when I stress more about going - the worse the trip is for me.

I to have extra clothes in the car, wet wipes etc. I also put a towel on the seat of the car, I have been doing really good - but sometimes it is hard to not let fear get the best or you.
I have been reading battle field of the mind, It has helped some. - that and if I make myself go some were every day - it is not so hard the next time I need to go out.
Posted 9/24/2007 3:00 PM (GMT -7)
yes, i do get scared all the time--and i admire those who can stay fright free. i get very scared, especially when i have a change in BM and new test or i need to go to the hospital. the only thing i take reassurance in is that i am focusing on really important things--not silly boys, fights with parents or friends, the guy who is mean in the grocery store, etc. so yes, i get scared but i hope it helps me focus on the bigger picture in life.
katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery

VSL #3
Amitriptyline to slow gastric emptying
Forvia

Posted 9/24/2007 3:46 PM (GMT -7)
Oh heck yes, I still get scared. Just the other night, well about 2 am, I got that sweaty urgency feeling and finally had to get up and use the bathroom; something I haven't had in ages. After I got back into bed, my boyfriend got up and as the story goes, we ate some bad food. I hate to say I was rather relieved when I realized it was something we both ate. All I could think of was that I'm supposed to get on a plane and fly across the country this week, stay at his parents.... and what if my UC was acting up again? It's unnerving when I get those feelings like it's coming back, it's unnerving when I think about having to take Remicade forever, it's unnerving wondering if other meds like antibiotics are going to start a flare, and heck....it's always in the back of my mind that the Remi might not work. Also, could I find another job if I had to and would they support my Remi use? Hey, does someone around me have a cold? So yep, I continue to live my life the best that I can, but as with anyone with a chronic illness, I think that little bit of fear lives in all of us. Well, maybe not all of us, but some of us! :-)
Carol

Remicade - will have my 19th infusion on November 1.

Imuran - 100 mgs....taken before bedtime

Vitamin B-12/Biotin, Probiotics


"Life is short -- make fun of it"

Co-Moderator for the UC Forum

Posted 9/24/2007 9:09 PM (GMT -7)
Yes. I've had this thing since July, and I don't think I've stopped being scared. Probably because I don't really feel like anyone around me understands, which is why I love this forum. I have my days, days where I feel like nothing is right and nothing will ever be right. And I have days when life is great. I'm lucky for everything I have, and I'm especially lucky that my UC isn't as bad as it could be.
Posted 9/25/2007 4:08 PM (GMT -7)
I fear getting old and not being able to function with all I have. The suspicion of PSC 10 years ago had me crying for 3 weeks solid, for I thought my life was over. It was eventually confirmed last year....but I felt empowered at not having one of the diagnostic tests..the ERCP because it's known to trigger the disease active and also to cause pancreatitis that I don't want.

My way of dealing for the future is to make the changes and do what's needed for me to function in the best possible way. If I weren't functioning due to severe UC symptoms, my colon would be out asap.

I recently fell/slipped on the stairs and injured my shoulder. Although I was happy nothing was broken, it brought me to the realisation that my brain or body don't sometimes work in conjunction with each other. Automatically learned processes have to be tweaked as I'm getting older.

I have more pains...constant pains...that gives me more grief because it's constant. Just sitting on the toilet is painful on my knees. Nothing is different than when I was a kid...it's just more constant, which is wearing on my emotional state.

I am what I am, and if I don't change as I age and exercise to increase my strength, I'll be swirling down the toilet at a fast rate with the poo. Not a direction I want to go....so, it's now or later...better than too late.

Toughkicker...you have your life ahead of you. Fear is normal, but don't let it rule. Seek options so that you can function to the best of your ability. Options...that's what will give you hope and determination to continue.

Therapy may also help you get things into perspective.
It's not what you can't do....it's what you can do.

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 !!!

Posted 9/25/2007 5:02 PM (GMT -7)
Well said Heather. I second it!
Carol

Remicade - will have my 19th infusion on November 1.

Imuran - 100 mgs....taken before bedtime

Vitamin B-12/Biotin, Probiotics


"Life is short -- make fun of it"

Co-Moderator for the UC Forum

Posted 9/25/2007 8:11 PM (GMT -7)
Nope, Im not scared at all cause I dont think Ill die of this disease. But I do feel very annoyed and frustrated that I suffer from this condition. Its a nagging disease where every meal I am reminded that Im ill.
Thx chere
Best remission strategy- positive attitude and optimism

Diagnosed in Feb 2006

6 asacols a day, probiotics, hydrocortisone enema, vitamins, folic acid.

Headed towards remission. Wish me luck

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