Daily Life?

[Guest guest]

My biggest question is what do most PSC patients feel like on a regular

basis? Is it typical to one day feel GREAT, then 12 hours later feel

like you've been hit by a bus?

[Guest guest]

As always, I can only speak for myself but I feel perfectly fine 95% of the

time. There have been times when I felt like I have been hit by a bus but I

think most normal healthy people are like that. You just deal with the times

that you don't feel well and really, really enjoy the rest of the time when you

feel great.

Every single person is different. I think that your frame of mind and outlook

have lots to do with it.

PSC '01 - Crohn's after that

>>> " McGloin " 10/1/2007 3:05 PM >>>

My biggest question is what do most PSC patients feel like on a regular

basis? Is it typical to one day feel GREAT, then 12 hours later feel

like you've been hit by a bus?

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[Guest guest]

When I feel bad it's usually for a period of time... like weeks or months. Then I feel fine for weeks or months. It's unusual that I would feel good or bad in a cycle of few days, although that has happened.

Shirin, Arman, Niki & Mateenarman_shirin@...

Re: Daily Life?

As always, I can only speak for myself but I feel perfectly fine 95% of the time. There have been times when I felt like I have been hit by a bus but I think most normal healthy people are like that. You just deal with the times that you don't feel well and really, really enjoy the rest of the time when you feel great.Every single person is different. I think that your frame of mind and outlook have lots to do with it.PSC '01 - Crohn's after that>>> " McGloin" <lmcgloin (AT) yahoo (DOT) com> 10/1/2007 3:05 PM >>>My biggest question is what do most PSC patients feel like on a regular basis? Is it typical to one day feel GREAT, then 12 hours later feel like you've been hit by a bus? ============ ========= ========= ========= ========= ========= ==This message is confidential, intended onlyfor the named recipient(s)

and may containinformation that is privileged or exempt fromdisclosure under applicable law. If you arenot the intended recipient(s) , you are notifiedthat the dissemination, distribution or copyingof this message is strictly prohibited. If youreceived this message in error, or are not thenamed recipient(s) , please notify the senderand delete this e-mail from your computer.ETMC has implemented secure messaging forcertain types of messages. For more informationabout our secure messaging system, go to: http://www.etmc. org/mail/Thank you.============ ========= ========= ========= ========= ========= ==

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[Guest guest]

I'm the same way - I feel bad for weeks or months, not suddenly one day, and only for a day. However, when I have felt bad, so far there have been other culprits, such as a bad reaction to medicine or H. pylori in my stomach, or UC. I also feel better the more I drink. If I don't drink enough when I go to bed, then when I wake up I feel like I've been hit by a truck - and I start drinking water like crazy. But I do have a j-pouch, which means essentially diarrhea like stools and I become dehydrated easily. I also take antibiotics (flagyl) for pouchitis.-Marie

When I feel bad it's usually for a period of time... like weeks or months. Then I feel fine for weeks or months. It's unusual that I would feel good or bad in a cycle of few days, although that has happened.

Shirin, Arman, Niki & Mateenarman_shirin (AT) yahoo (DOT) com

Re: Daily Life?

As always, I can only speak for myself but I feel perfectly fine 95% of the time. There have been times when I felt like I have been hit by a bus but I think most normal healthy people are like that. You just deal with the times that you don't feel well and really, really enjoy the rest of the time when you feel great.Every single person is different. I think that your frame of mind and outlook have lots to do with it.PSC '01 - Crohn's after that>>> " McGloin" <lmcgloin (AT) yahoo (DOT) com> 10/1/2007 3:05 PM >>>My biggest question is what do most PSC patients feel like on a regular basis? Is it typical to one day feel GREAT, then 12 hours later feel like you've been hit by a bus? ============ ========= ========= ========= ========= ========= ==This message is confidential, intended onlyfor the named recipient(s) and may containinformation that is privileged or exempt fromdisclosure under applicable law. If you arenot the intended recipient(s) , you are notifiedthat the dissemination, distribution or copyingof this message is strictly prohibited. If youreceived this message in error, or are not thenamed recipient(s) , please notify the senderand delete this e-mail from your computer.ETMC has implemented secure messaging forcertain types of messages. For more informationabout our secure messaging system, go to: http://www.etmc. org/mail/Thank you.============ ========= ========= ========= ========= ========= ==

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[Guest guest]

I'm still adjusting to the whole PSC thing. It's been almost 2 months

since my diagnosis and I am just mad, lol. I feel like crap. I will

have times that I feel okay but mostly I'm just exhausted and hurting

and I just hate it. I'm really struggling with it and I think that my

mood may also make me feel worse. I'm on antidepressants but they are

not working much.

I'm glad you posted this. I'm anxious to see what others have to

say.

PSC 8/07

PBC 10/06

[Guest guest]

I must be lucky. I have had PCS since for over 10 years and UC for

even longer, and I have never felt bad. I have never missed any days

in elementary school nor high school due to the illness. I am

currently a sophomore in college majoring in nursing, and still going

strong. I thank God everyday for how good I am doing.

>

> I'm still adjusting to the whole PSC thing. It's been almost 2 months

> since my diagnosis and I am just mad, lol. I feel like crap. I will

> have times that I feel okay but mostly I'm just exhausted and hurting

> and I just hate it. I'm really struggling with it and I think that my

> mood may also make me feel worse. I'm on antidepressants but they are

> not working much.

>

> I'm glad you posted this. I'm anxious to see what others have to

> say.

>

>

> PSC 8/07

> PBC 10/06

>

[Guest guest]

lisa-

this fatigue is really maddening. don't listen to people who say it's your attitude or outlook. they obviously don't have "the fatigue". you feel almost like you have a really terrible flu, which you know can't be beaten by a good attitude. the body just aches and there doesn't seem like there is anything we can do about it. i have felt better if i eat, or if i drink something. it gives me some strength. some on the site have said the green tea helps. check your blood tests, i am anemic also and when i started taking iron that helped me some. just try to get out and get things done when you feel good. stay in bed and don't feel guilty when you feel bad. i hope this helps.

pam

dx 2001See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Before 's transplant he had abdomenal pain in the right upper quad every day. Some days it was debilitating and other he could carry on with life. Little itching or nausea. He did tire easily but did not have the overwelhming fatigue I read about here. Marti McGloin wrote: My biggest question is what do most PSC patients feel like on a regular basis? Is it typical to one day feel GREAT, then 12 hours later feel like you've been hit by a bus?

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

The best part of this disease is not knowing how I'll feel every day.

Each new day is a surprise. What a great, surprise-filled life!

All kidding aside, it does get frustrating when I go through the

valleys. Fortunately, I've had many more good days than bad lately.

Fatigue has been minimal, and I've had almost no discomfort. But,

that's no guarantee that tomorrow will be the same.

My point is that I'm trying to learn that each good day is a blessing,

and I'm going to take advantage of those opportunities. At the same

time, I'm trying to learn that maybe the bad days are God's way of

telling me I need to slow down a bit.

Tom

PSC 1999

>

> My biggest question is what do most PSC patients feel like on a regular

> basis? Is it typical to one day feel GREAT, then 12 hours later feel

> like you've been hit by a bus?

>

[Guest guest]

Hey

I still remember my gastroenterologist telling me two years ago that I

may have PSC after reviewing my elevated LFTs but that the definitive

test would be an ERCP. Everything I started reading about PSC sounded

grim and for the first time ever, I really got the feeling that this

was not just something routine that I could " take a pill for " to make

me feel better.

I can't say for certain what changed for me personally but a number of

life events happened in 2006. My mom had a radical mastectomy followed

by a stroke 2 weeks later. [Her recovery has been good but there are

still some lasting effects but on the plus side, she and my dad are

leaving on a cruise this week.] Four months later, my father-in-law

passed away suddenly as a result of a stroke. Perhaps these events

helped me put things a little more in perspective since we can never

be sure what will happen to us daily; sometimes good, sometimes not.

But every day I try to remind myself that I can do the best I can at

making the most of what I have.

In the two years following the PSC diagnosis, I've felt like I've been

riding a rollercoaster of emotions. Taking back control of the things

I can seems to work for me. Although I'd had food intolerance testing

done before this time, I started being more diligent with it just this

last year--and it helps. I began seeing a hepatologist who also

specializes in gastroenterology (best of both worlds) and I like her

approach because she's very proactive. And since I don't have any

major physical limitations, I'm using that as an indicator of my

overall health as well as challenging myself to doing things I

previously hadn't.

Reading up on PSC has been a bit of a double-edged sword however. The

initial reading was a rude awakening that I think most of us have

difficulty accepting. Some of the recent info, which I read via this

forum, has been better though. If the DVTs and Lychen Planus I had

years ago are related to the PSC, then the time-frame for having it

far exceeds the 2 years since the formal diagnosis. For me, that would

put it at 23 years which, if they're related (and I'd like to think

they are), is far greater than the 10-12 years that the literature

says we can expect before possibly requiring some major intervention.

I forget who said it here, but I have adopted it as a bit of a mantra

that I periodically tell myself: " While some people die with PSC, it

may not necessarily be because of it. "

Sorry for the wordy reply but that's what gets me through my day.

-- UC 2002; PSC 2005; Osteoporosis 2007

[Guest guest]

Hi ,

I would say I feel " up and down " on a regular basis.

For me, I'm just getting over a medication issue where a couple psych

meds I was on for depression were " killing " my liver. I had extreme

hives and pustules (worse than usual), extreme itchyness, and my liver

was hurting a bit. Now after being off those for about 10 days I feel

soooo much better.

My biggest struggles are my skin (hives/pustules since pre-PSC

diagnosis), fatigue, and depression and mood issues coupled with

suicidal ideology. When I am feeling really bad I just am so sick of

suffering, I want to not suffer any more.

It is a scary thing to have a severe progressive illness that affects

your quality of life and has no answers as to what caused it or decent

solutions (I personally think liver transplants are rediculous and we

should find other ways to help " cure " people besides that option).

Jarad, 27 male

PSC dx 1996

UC dx 1999

Jpouch 2002/3

Food allergies: soy nuts gluten dx 2003-4

Osteoporosis dx 2006

Back surgery 2007

>

> My biggest question is what do most PSC patients feel like on a

regular

> basis? Is it typical to one day feel GREAT, then 12 hours later feel

> like you've been hit by a bus?

>

[Guest guest]

,

On the optimistic side, I too have never had symptoms from PSC. I have been

taking

Ursodiol for the last 15 years, high-dose since 2002. Since learning about this

site 2 years

ago, I started taking fish oil 4x500 mg/day. Before urso, the alk phos was over

350, urso

took it to about 180-200 and the fish oil dropped it to 135-140. Then I started

taking a

low dose oral contraceptive, and it was expected to raise the alk phos a bit,

but it dropped

to 107, which is well inside normal. Silently, the damage has continued, though

I hope the

rate has slowed. I learned 2 years ago the left hepatic duct (draining the left

lobe) was

completely blocked, but I felt fine- except for complications from a PTC

(percutaneous

transhepatic cholangiography). I might have been able to avoid losing the lobe

if I'd kept

up with annual MRCPs and tried to have a stent placed in time. So my advice is

take urso

and fish oil, don't drink alcohol and constant vigilance!

Good luck

Martha (MA)

UC 1979, PSC 1992, asymptomatic

>

> My biggest question is what do most PSC patients feel like on a regular

> basis? Is it typical to one day feel GREAT, then 12 hours later feel

> like you've been hit by a bus?

>

[Guest guest]

Wow..... what a response.... I must say most of you have a GREAT outlook and I think I just needed to hear that from someone in the SAME situation (family and friends are great, but sometimes they just don't truly understand what goes on in our heads nevermind our bodies.) Frustration, depression, etc. etc. I can close my computer tonight with a feeling of YES everyday I wake up....not in a hospital, not in a wheelchair, not incapable of taking care of myself (and kids), able to drive, walk, sing, laugh etc. etc. So "Kudos" to all of you, for the great responses! Live, Love, Laugh Martha wrote: ,On the optimistic side, I too have never had symptoms from PSC. I have been taking Ursodiol for the last 15 years, high-dose since 2002. Since learning about this site 2 years ago, I started taking fish oil 4x500 mg/day. Before urso, the alk phos was over 350, urso took it to about 180-200 and the fish oil dropped it to 135-140. Then I started taking a low dose oral contraceptive, and it was expected to raise the alk phos a bit, but it dropped to 107, which is well inside normal. Silently, the damage has continued, though I hope the rate has slowed. I learned 2 years ago the left hepatic duct (draining the left lobe) was completely blocked, but I felt fine- except for

complications from a PTC (percutaneous transhepatic cholangiography). I might have been able to avoid losing the lobe if I'd kept up with annual MRCPs and tried to have a stent placed in time. So my advice is take urso and fish oil, don't drink alcohol and constant vigilance!Good luckMartha (MA)UC 1979, PSC 1992, asymptomatic>> My biggest question is what do most PSC patients feel like on a regular > basis? Is it typical to one day feel GREAT, then 12 hours later feel > like you've been hit by a bus?>

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[Guest guest]

SAME? Yes, I take SAMe. ;-)

Arne

56 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

(sorry, couldn't resist!)

________________________________

From: [mailto: ] On Behalf Of LISA MCGLOIN

Wow..... what a response.... I must say most of you have a GREAT outlook and I think I just needed to hear that from someone in the SAME situation (family and friends are great, but sometimes they just don't truly understand what goes on in our heads nevermind our bodies.) Frustration, depression, etc. etc.