Please tell me

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Kalynn
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/30/2009 9:01 AM (GMT -6)   
  My father had ulcerative colitis it eventually caused liver disease and he had a liver transplant.  After the transplant surgery he got a massive infection and did not survive.  This was 13 years ago.  My father's disease cause many complications at one time he was bleeding protein into his kidneys (I have also had this as a teen, but never any other symptoms or dignosis)and developed an autoimmune disease.  I am writing because this subject is close to my heart.  I am doing a project for my college Anatomy class.  Most of the students will move on to various position in the medical field.  I have all of the reasearch that I need, but would like to at a personal touch so these student know what it is really like.  If there is anything that you would want other to know about this disease please tell me.  I will not use your name, but I would love to use your story.  The students in my class and my self are the future of the medical world and I want them to have insite on this subject.  Thank you so much! 

Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 1/30/2009 9:26 AM (GMT -6)   
Hello Kalynn,
 
While I believe that UC is a verry terrible disease to have it is not the end of the world for most of us, in fact it's made us stronger people. I'm very sorry to hear about your father...but for the majority of us it is the treatments themselves that give us the double whammy. I know the majority of the members have been on autoimmune supressing drugs (myself included) for various amounts of time, that in turn can lead to what my doctor calls "infections of oppurtunity".  Sometimes it's as simple as a common cold, others with already weak immune systems it can lead to nasty infections and other life threatening conditions. If I could tell others one things it is that sometimes the side effects from the treatment can be just as bad as UC.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 1/30/2009 9:33 AM (GMT -6)   
      Wow...now these are depressing thoughts Apetro.  I choose to think that I am LIVING with a disease that can be controlled with medicine and that there is hope that a new medicine that can cure Crohn's and UC is right around the corner.  Meanwhile, I am enjoying every day that the good Lord gives me while in remission and living life to the fullest.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Kalynn
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/30/2009 10:13 AM (GMT -6)   
Thank you guys so much for your resonses. From the time I was a small child my father was ill, and while I don't know what you are phisically experiencing I have lived in the shadow of this disease. I do know that the Lord gives us certain experiences for many reasons, and as horrible as this is I know something good can come from it. My father passed when I was 12 and I have theough this been able to witness to others that have lost parents at a tender age. Some thing can come from each of your experiences...ask God to show you and faithly he will! Again thank you so much for your responses...I will get the word out!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/30/2009 10:32 AM (GMT -6)   
I have had this for 16 years and in those 16 years it took a long time for me to accept the fact that I have a lifelong illness. However, I say that I have UC, UC doesn't have me. I try not to let Uc run my life. I still get out there and have fun and can honestly say that there has only been a few handful of times where it was nearly impossible to leave the house. Sure, when I flare it depresses me because I feel like total doggy doo but I pick up the pieces and start over again. One thing I have learned on HW is that everyone deals with their condition differently. But I think that if you have a positive outlook on life, it can actually make you feel better or at least put your mind in the correct light.

I believe the biggest challenge we have today is that the fact that not many people KNOW about Uc nor it's emotional impact it has on us. It's a challenge when you have to plan your day around a flare and it's especially difficult to explain to a friend, whom you've already made plans with and actually felt good THAT afternoon when you talked to him/her, that there is just no way you can out NOW because you can't get off the toilet.

But am I stronger today then I was 16 years ago? Yes, most definately. I now also have a greater compassion for anyone that has to deal with a chronic illness.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
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Kalynn
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 2/6/2009 7:04 AM (GMT -6)   
I want to thank all of you who gave me some insite on UC. I did my presentation and rather than being boring and something that no one was interested in it was really great. I got a ton of questions and I think my fellow students have a better understanding of not only UC, but what it is to have a cronic illness. My hope is they will take our class more seriously and learn as much as they can about our bodies so new ideas maybe created to deal with these illnesses. Again thank you for sharing your stories....oh and I got an A!!!!!!!
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