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Dipseticischemia
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/25/2009 3:16 AM (GMT -6)   
I have taken a little time to read over some of the postings and articles on this website. It seems that a good number of people want to spill their guts on the first post, not that there is anything wrong with that but would we do that in person or in public (?). I understand that many people here are hurting, some of them deeply, both physically and perhaps mentally as well. I was reading an article the other day about what it means to have "titles", basically they were referring to occupations and how some of us can get hung up and stuck on a title when in fact it isn't so important. I am not on this website to impress anyone and I feel for the people who think they might need to. When I go to the doctor and tell them what is wrong with me the last thing they are interested in are my achievements and or job titles. I do not necessarily agree with their actions and opinions but trying to force someone to respect me or my past occupational achievements is not very healthy for me. I spent a good portion of my life trying to outrun the other guy, to achieve more, to get some sort of personal satisfaction out of what I was doing. The same concept can be applied to my personal health, if left unchecked I might have the tendency to sort of glorify my current and past medical problems and or medications. For myself this is a dead end road because it only leads to heartache and disappointment, misunderstandings and hurt feelings. When I am in public or at a certain function people often come up to me and say "what do you do", this always puts me in an uncomfortable situation because I don't understand what the motive behind it is. Of course most adults feel this is just a common question and it is only a way for people to get to know one another but sometimes I have had people look down their noses at me because I don't want to tell them my past occupational successes and or failures. When we strip away the titles, the promotions, the street addresses, the names of our children’s private schools, our medications, how long we have been ill, and the surgeries, and more we are all left holding the same plate. I still do not know many things about this life but as I grow older I realize the less I actually do understand, it is a humbling feeling to discover that after having achieved the main goals I had set for my future that I am no better or worse than anyone else. I don't have to be locked in a prison to be a prisoner, I don't have to be educated to have a rewarding job, I don't have to be a Nobel prize winner to be appreciated. What I do have to do is be true to myself, to try and hold my head up and smile even when I am very sick and hurting, to be kind to someone who has had it worse than me. I can't change the world but I can change my attitude towards it, I can't change people but I can change the way I communicate with them, I can't force anyone to respect me but I can certainly respect them even without even saying a single word. At the end of the day I have to try and sleep with the way I acted that day, the way I treated other people. Was I kind and considerate? Was I giving and understanding? Did I treat people the way I want to be treated? Was I trying to help people but my real motivation was actually monetary gain? Will I be able to stand and face my maker and answer for my actions when He/She will know my real motives? Will I die with peace and harmony or will I be left with regret and sorrow? I am sure I will have some regret when I am on my death bed but I do have some degree of control as to how much regret I might have. Sorry for my grammar and spelling, I have never been very good at either of them. God bless any and all and I hope to be accepted here and treated kindly, as we all do.

Post Edited (Dipseticischemia) : 1/25/2009 1:19:11 AM (GMT-7)


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/25/2009 10:26 AM (GMT -6)   
People, like me, will share and "spill" all about our conditions on this site because that is what it is for. I learned more about this disease on here than in my own experience or by my doctor(s). So no, I would not be so open in public or person, but I assure you, if anything short of full disclosure will keep me or someone else from learning or finding camaraderie here, then it is worth it. Plus, especially in cases of medical questions, an informed post is really the only way people can weigh-in with their experience. If we can't be open here, where can we? I've made good friends on this forum, too. I for one am so thankful for this forum and its members (especially the moderators!).
Ryan


Meds:

Began Humira on Jan 10 2009


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/25/2009 10:35 AM (GMT -6)   

I agree with Ryan!  Hard to express how I feel here sometimes but I have learned that I am not alone.  At age 68 it is very depressing to learn you have UC and have no idea that others go through so much.  Thanks to everyone answering my questions here, I am more comfortable talking to my husband and my doctor.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/25/2009 10:49 AM (GMT -6)   
I think the reason that people are so open on here right from the start is because we are an ONLINE support group. Most of us will never actually meet anyone in real life from here, so we can be open and honest from the start. Even though after a while we do form friendships, for the most part it is still going to be online, not in real life. I for one am not as open in real life as I am on here. Of course the people I see everyday have no help to give because they don't have this disease. People on here do. Don't get me wrong, my family and friends who I do talk to are supportive, but they really can't relate. People on here can. And I agree with ryan, You don't truly get the answers and help you need if you hold back certain key elements of your particular disease.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/25/2009 11:23 AM (GMT -6)   
Everyone has their own way of coping with a chronic health condition. Some choose to keep it quiet, others to talk it out. Look at it this way: if no one here gave any information about their struggle, you wouldn't learn much by coming here, would you? Some choose to discuss and share, others just to read and benefit from the experience of others. We don't tell anyone which way is best for them, it's whatever works for each person.
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/25/2009 12:09 PM (GMT -6)   
Dipsetichischema, welcome to Healingwell. Yes, I agree with the others...this is an online support group; we support each other through the tough times as well as the good times. I've actually met some of the folks from this board in person and have become good friends with them. It's nice to know that you can come here and have someone listen to what others such as friends, family, and yes -- even docs, have a hard time understanding. I'm glad that you've read the posts; keep reading and you'll find others who lend positive support as well as some good advice. As always, any thing recommended on this board is just that -- a recommendation. If you have questions, we urge members to consult their doctors. I believe that this board has relieved many of their anguish in dealing with this disease by being able to talk about it....and we highly encourage it. Thanks Ryan...
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 1/25/2009 4:36 PM (GMT -6)   
What's wrong with being open and honest? UC isn't anything to be ashamed of.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


Dipseticischemia
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/25/2009 7:59 PM (GMT -6)   
To RyanF, Kops2da (Elaine), Unclebubba, Judylyn, Lonelylane (Carol), and Sara14. Thank you for taking the time to respond to my post and for making me feel welcome here. I read all of your responses and no one bashed me or made me feel angry or upset. Of course there is nothing wrong with being open about any disease or problems that people my have. I wasn't trying to say anything negative and I think you all could see that. I am interested to know peoples medical problems and to learn from them, that is why I am here on this site. It seems that whenever I get really sick and have to be admitted into a hospital that there are some of my "friends" who don't understand and we end up not talking anymore and it really hurts my feelings and I don't understand why they are like that. I have heard it said that when a person is down we really discover who our true friends are and I guess I have to sort of agree with that. I need to make online friends and I hope it will be a mutually gratifying experience.

Thank you again and I hope I can join other posts and discussions as time and health permits.

Dipseticischemia

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/25/2009 8:17 PM (GMT -6)   
Dipseticischemia,

I understand where you are coming from. From what you posted this last time, made me think of how great of a family I have, and how awesome my closest friends are. I have a husband who I've known for about 7 years, and a best friend who I consider a sister who I've known for about 16 years. When it gets down to the nitty gritty of life is definitely where you find who is there for you. Developing some kind of support group is always good. Coming here may be the best choice considering your friend situation. Hope to see you on here more so.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/25/2009 9:55 PM (GMT -6)   
dipseticischemia ( wow thats a hard one to spell ) LOL. as always if I can be of any assistance all your need to do is ask, and of course welcome to the site.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/25/2009 10:21 PM (GMT -6)   
I'm a very open person, even in person.

It's does get me in trouble sometimes.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/25/2009 10:26 PM (GMT -6)   

Joy - oh me too!  I was told by two family members that when they ask how I am - please not so many details LOL!!  So now I just say - OK!

I am open to discuss UC with anyone, anywhere (even during lunch) but many do not like that and I try to respect it.  My husband of 47 years is concerned, loves me, supportive but really does not want to hear or see the details!!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/25/2009 10:50 PM (GMT -6)   
Dipseticischemia--

I know exactly what you mean. And sometimes you even get treated as if you're ASKING to be pitied or have attention paid to you when for me it is the exact opposite. Though I have not had friends do this to me, one person who you'd think would be very supportive has completely let me down.

I don't like bad-mouthing anyone-- I think this only leads to bad karma-- but suffice to say my own mother refuses to believe I have anything wrong with me. I realize this is likely due to the fact that she WANTS nothing to be wrong, but denying fact doesn't make it go away. When I'm in a flare and cannot fly (I'm a pilot) she get almost angry with me.

Trust me mom-- I have plenty of other methods of p!ssing you off than using an ulcer as a means to an end. Ha! Thankfully, I have this forum and the rest of my close family, including my wife, is behind me and will do whatever they can to help.
Ryan


Meds:

Began Humira on 10 Jan 2009

Second injection: two pens on 24 Jan 2009


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/25/2009 11:09 PM (GMT -6)   
Ryan:

Speaking of parents in denial, my Dad has had Ulcerative Colitis most of my life time, and had surgery and his UC came back. His GI that he loves, told me that he has flaring UC, now my dad is in search for another GI because his GI told him that he has UC, again. I guess he will keep running, and keep getting the same answer.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/25/2009 11:12 PM (GMT -6)   
I know what you mean about "friends" basically ignoring what's wrong with you.  I should preface this by saying that I am basically in remission right now.  My friends called when things were really bad (hospitalization, etc.), but not until then or after.  They never just called up and say, "How are things?  How are you feeling today?" 
 
In return, I didn't share much info about my health with them which created a cycle of non-communication.  Its frustrating - they have no idea how much I was suffering before I started getting better.  On some level I don't think they wanted to know - maybe they didn't want to admit that somelike like this could happen to them if it could happen to me.
 
That's the beauty of this website - we've all been through hell and we're all here to help each through it.  After I started getting well, I spent less time on healingwell; and then I realized that I still have this disease and I still have a community of UC-sufferers that need my support just like I've needed theirs. 
 
I hope you build some great relationships on here, just as many others of us have.  smilewinkgrin
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/Sunflower Seed Diet
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Remission
 
 
 
 

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