Have you all ever come here and read posts that made you more scared?

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Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/12/2008 10:36 PM (GMT -6)   
I was doing pretty good until I started reading all these posts about UC liver damage. eeek!! To those who have it (((((((((big hug)))))))))))

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 10/12/2008 11:19 PM (GMT -6)   
LOL... it can get overwhelming sometimes. It's difficult, but necessary to keep it all in perspective. Not all of us get liver disease, some get that and more...it all sucks, but knowledge is power.Small bites can be easier to take in and digest than too much.

I don't relate to everyone, and some issues I don't even enter a thread. Try to keep it all in perspective.

I know this isn't any consolation, but when it was suspect that I had PSC over 10 years ago, I didn't have the internet. My best friend works at a college library and photocopied about a 3 inch stack of PSC information.

I cried for 3 weeks ingesting all the information..hilighting...thinking my life was over just when I was starting a new profession.

There was one small article written by a doctor who stated that the testing for confirmation was flawed and that the ERCP could trigger the disease into an exacerbated active state as well as cause pancreatitis (my sister had 3 ERCP tests done and has chronic pancreatitis..she suffers in an attack). That one article gave me the power to say NO which I believe bought me a lot of time...and eventually, the MRI test for PSC (MRCP) came about and I had that a few years ago..which did confirm early
PSC. will hold off on an ERCP forever if I can.

Remember, you can always click to another site to get your mind off of what you read here. There are also different reasons why we get what we have...good to know, but not necessarily the norm.

hope this helps somewhat...
quincy


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/12/2008 11:30 PM (GMT -6)   
When I was expecting my first baby I got great advice from my hair dresser (I was very young, early 20's and a little apprehensive after getting pregnant about what the delivery would be like) she told me to expect the worst that way if it was horrible then I was mentally prepared and if it wasn't too bad then it would be a nice surprise...I think that advice holds true for anything traumatic.

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


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/12/2008 11:36 PM (GMT -6)   
When I was in college, I was a psychology major. During our courses on abnormal psychology, I was coming up with a new diagnosis for myself every week. It is the nature of people. We tend to internalize things that might affect us, and if we aren't feeling 100%, we seek out reasons for these feelings. Reading the posts here certainly feed my imagination, but I realize I have some hychondriachal tendencies. It is good to know what is out there, but it is even better to realize that just because it is out there, that doesn't mean I'm going to get it!
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/12/2008 11:40 PM (GMT -6)   
You know what they say, what doesn't kill ya makes you stronger, just think how strong we all are now and how much stronger we'll keep getting.

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


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 10/13/2008 12:03 AM (GMT -6)   
as long as you never say...it was meant to be...groan!
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/13/2008 12:10 AM (GMT -6)   
Ya Q, more times than not, that cliche was never one of my favorites (though I'm sure it holds some truth as much as I hate to admit it).

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


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/13/2008 12:52 AM (GMT -6)   
My symptoms are not that severre but I am as scared as everybody else because this forum frightens the life out of me. We all forget that most UC patients are mild to moderate and many on here are quite severre which doesn't bring much relief. What I will say though, is that I have learnt a lot about the disease and how to manager it e.g. medicine, rectal medsm, and natural ways - than I would have had I not come here.

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis - Minor Bleeding
Medication: 1000mg Asacol Enema, 800mg Asacol Tablets x 2 a day, Digestive Advantage


men8ifr
Regular Member


Date Joined Jul 2008
Total Posts : 124
   Posted 10/13/2008 6:44 AM (GMT -6)   
Yes anything about surgery scares me. Sometimes it's good though as it makes you put more effort into getting better.
Ian

Currently in no mans land between flare and remission


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/13/2008 7:36 AM (GMT -6)   
When I first joined the forum, I was struggling with a severe and seemingly never-ending flare. I read and read, and learned a lot about the disease, but after a time I did start feeling overwhelmed with it. I took a break, stepped away from the board for quite a while. When I finally got into remission, I came back so I could share with others the support I'd received when I needed it.

My suggestion would be to step back and visit less often if it's becoming too much for you. Take some time to think about other things and to not hear the stories of those of us who are still suffering. Then come back when you're ready to do so. We'll be here.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
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.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/13/2008 7:43 AM (GMT -6)   
As everyone has said, people who are struggling post here and this DD is so personal. I never even thought of seeking a support site after being diagnosed because I was in remission within a couple weeks of meds; it wasn't until I got a flare that wouldn't go away that I found this site. And if there is a thread I can't relate to (ex. liver damage), I don't even open it.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/13/2008 1:24 PM (GMT -6)   
its funny to find people who can relate to me about this.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/13/2008 2:13 PM (GMT -6)   
yeah sometimes, I think what if that happens to me now.

pb4, I worst case it too, I try to look at every possibility and then hope for the best but still expect the worst, I don't know if that makes any sense? I think I am being realisitc.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/13/2008 2:14 PM (GMT -6)   
It's made me wonder if I would have had a more enjoyable, "normal" life if I had had surgery a long time ago. Now I'm not sick enough to warrant it, but often I was.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 10/13/2008 2:18 PM (GMT -6)   
one can wonder till the cows come home...it doesn't change what's happened except to help you make a better decision now and in your future.

It's great to hear you're doing so much better now.

There are many who may have improved with meds who decided to have surgery and clearly don't regret it. Decisions are definitely subjective depending on life situation/lifestyle and how sick one was during time of the decision to have it.

Be well..
quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/13/2008 10:58 PM (GMT -6)   
Beth75 :)

It makes total sense and you are being realistic, nothing wrong with expecting the worst to help prepare yourself mentally, nothing wrong with that at all in fact I personally think it's a fine coping mechanism.

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


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 10/13/2008 11:12 PM (GMT -6)   
I don't think it is a fine mechanism at all in all honesty - you end up worrying about something needlessly and make yourself worse. Stress makes UC symptoms even worse and IMO is the major contributing factor to UC. Expecting the worst can be dehabilitating (I should know) and it is not a good way of coping. Being realistic, rational and hoping God does whats best for you is a better strategy.

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis - Minor Bleeding
Medication: 1000mg Asacol Enema, 800mg Asacol Tablets x 2 a day, Digestive Advantage


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/13/2008 11:31 PM (GMT -6)   
I'm not saying be a worry wart and causing un-necessary stress, I'm saying prepare yourself mentally for the worst so you can handle things better...big difference....you do what works for you.

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


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/14/2008 1:43 PM (GMT -6)   
hi London, for me once I worst case it, I say ok well that's the worst, then I can move on. I read something once about coping with stress and it actually said that denying yourself from thinking about the worst case can cause you more stress, because you stress out trying not to think about it. It may be better to let yourself go there for 5-10 min and then back to finding positive alternatives.

though that may not work for everyone and I may not have explained it very well in either post. It works for me.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 5mg/2.5mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/14/2008 3:18 PM (GMT -6)   
Beth, you sound like you are very well-grounded. When you explain how you cope it makes sense to me, and I can see how it would work.

I operate differently in that I have a bent towards fear, so I have to guard against it. My imagination runs away from me. I have to admit I have always admired people like you who can face their fears and then let them go. Its very cool!!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/14/2008 3:52 PM (GMT -6)   
I don't have to worry about the worst possible thing that can happen in any situation, my husband does that enough for the both of us!
I, on the other hand, am crazy optimistic about everything. My first GI called me his "denial patient."
I think positive thinking has made me more courageous and successful.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 

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