what I know for sure

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mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 8:28 AM (GMT -6)   
Well, this is just me kind of writing out my thoughts today.  Wondering if others out there who suffer from UC or other chronic illness view life possibly differently, by that I mean more empathetic to people with illnesses.  I guess I am pondering on this today because I am returning to work after being off approximately 6 months due mostly to 4 herniated discs (well of course the UC certainly had its days in there too, but my back is what put me out).  It was a very isolating time and a very painful time of not being able to move or do anything and having to go to spine rehab (still going).  I guess what I am getting at is that in all of that time I didn't even get so much as a get well card from people I have worked for for years.  This was extremely hurtful.  No calls from my manager nothing and today I return and feel completely different than when I left.  I also work in a hospital (that is where we are taught that people come there scared, nervous, worried and to really treat people even more gentler and kinder because they are in this situation.  I didn't get that as a person on that end from the peers who are taught that.  I have a good relationship with these people so it was even more hurtful.  I guess what I know for sure is work is work (they are coworkers) and true friends are different, though I guess I thought caring people were the same whether coworkers or friends.  I know this will make me even more mindful of people who are sick, disabled whatever, to feel forgotten is sometimes worse than what the illness itself is.  This has been a very difficult time but feel I have learned a lot from it all.  Thanks for listening, wish me luck that I can just go back and do my job and not dwell too much on the hurt and disappointment I am feeling...it's been good coming to the forum and so many well-wishers out there...Molly

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 3/31/2009 8:32 AM (GMT -6)   
Hi Molly
Thanks for the update. Wish you best of luck in your future endavours. Have a great time and keep us posted.
45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/31/2009 8:35 AM (GMT -6)   
I think it's hard for someone who has never suffered from an illness to have empathy and compassion for those that do. I used to kind of be like that. Before UC, I was never sick and I would get easily annoyed by people who "complained" of their constant illnesses. I have come across a few hypochondriacs and it made me very unsympathetic towards everyone. Even now, I don't like to talk about my illness with that many people because I'm afraid that they will think I'm a hypochondriac, a whiner, and a complainer. I'm sorry that the people you work with aren't more compassionate. :(
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/31/2009 9:46 AM (GMT -6)   
Wow, that must be horribly disappointing! When I was working, my co-workers were always very solicitous. They would offer to carry things for me, go get things, etc. And if I was off work, I had to remind them all that it was okay to call or e-mail, but I really didn't want any visitors.

I'm sorry your co-workers aren't supportive.
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.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/31/2009 9:50 AM (GMT -6)   
Hmmm, due to my long suffering with UC I find myself less compassionate sometimes when someone is dealing with an acute health problem, one that will be fixed and done. My mother had two major surgeries in the past few months and she was a terrible patient, hostile towards the doctors, blaming complications on them, whiny and weepy...I got really fed up with it. I would ask, are you in pain? No. Will you recover? Yes. Then Cowgirl Up.

But I will call my co-worker today who had surgery last week, to see how she is doing. Thanks for the reminder.
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 wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 9:54 AM (GMT -6)   
And I am sure that phone call will mean a lot to her. I get it about the whiny part too. Just knowing colitis and the years of having it, we probably all have had to suck it up a lot...LOL  I think that's what my whole thought was today, a phone call can make a huge different to someone who is ailing or had surgery and even a card can lift ones spirits like you wouldn't believe.  And like I said forums like this make people feel less alone and others know your struggles without having to tell them any details which I guess makes each of us feel maybe a little less alone in this particular struggle with our health...Molly

Post Edited (mollymcbutter) : 3/31/2009 9:59:04 AM (GMT-6)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/31/2009 10:02 AM (GMT -6)   
I work in a family-owned company and everyone here has been so compassionate and helpful throughout this whole ordeal. I worked quite a few days from home and my boss has been so understanding. He's just said "Focus on your health, and the rest will come." I feel really lucky to work in such a great environment. I'm sorry that you haven't had the same experience I have!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 10:07 AM (GMT -6)   
Hi fruitgirl, I guess maybe in smaller family-owned businesses you experience more that positiveness. You know when I left they did say get better and not to worry, so maybe I am just feeling anxious today because I haven't talked with them in such a long time. I am grateful to have a job to go back to, and hopefully can again love it like I did...thanks for the thoughts.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/31/2009 10:12 AM (GMT -6)   
Yes, with the economy like it is I can see how you feel luck to have your job! It is disappointing, though, when you don't get support. It really has helped me a lot to know that my coworkers genuinely care about my health. I hope you do love your job again, because it makes it a lot easier to go to work every day when you do!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 10:18 AM (GMT -6)   
Yes, it's true it makes all the difference when you love your job. IT seems that the economy has forced a lot of these jobs to have to focus on numbers more than it's workers because of the constant layoffs and all that is going on in the job marked and housing market, at least, I know here in California we are seeing that a lot. Well, hope I can get it together today as I have been in and out of the bathroom probably a lot having to do with the anticipation of work. I guess my goal will be to make it as good a day as possible. I hope your day is also good fruitgirl.

mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 10:21 AM (GMT -6)   
Hi Judy,

Well, at least the support I have gotten here has made up some for the lack of support I have felt over these last few months. Thanks to all who have sent good thoughts my way

mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 10:44 AM (GMT -6)   
Thank you Derek, what a beautiful blog you sent...I will keep this in my thoughts today :)

Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 3/31/2009 12:08 PM (GMT -6)   
I am so sorry for what you have gone through and what you are feeling. Two summers ago I was in Canada for my daughter's wedding and slipped getting out of the shower in the hotel room the day before the event. Long story short - I flew back to Texas right after the wedding and arrived with a fractured hip, pulmonary embolism and in the midst of a terrible flare. I was put into diapers, told I couldn't move and everything thing in my body was tested. Most of the time I wasn't sure where I was. I started receiving a card from a former co-worker each day. I would hold onto those cards and sleep with them in my hands or under my pillow. They kept me focused and in touch with life. I survived the ordeal and when a recent co-worker had complications during surgery I started sending her cards almost every day. She recently told me she would look through the mail each day and when she saw my card she would hold it in her pocket all day.

I guess in our hectic lives we sometimes lose sight of the small things that might make someone feel good.

I wish you the best. I know if you focus on getting through each day, even if you have to do it hour by hour or even minute by minute, you will survive.

Good Luck
Nor
Presently on: 600 mg. Remicade every 4 weeks
                   Venofer infusion every 4 weeks
                   B12 every 4 weeks              
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily
                   10 mg. Celexa daily


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 12:15 PM (GMT -6)   
Thank you Nor, that was said beautifully and that is what I was saying that simple card can lift someones spirits up sooo much. I was thinking before I leave to go to work, each year we have to have a review and they always want you to put what your new goals will be for the year, usually you have worked at the job so long you can't even come up with new goals. BUt I think this year my goal that I will write will be to focus on our work family who may be out of work due to illness or family tragedy or whatever it may be and for us to remember them in some way so they know we care and haven't forgotten about them...that will be my new goal and that is truly what I know for sure!!!!!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 3/31/2009 3:38 PM (GMT -6)   
     Molly, your post reminded me of something very recent.  Last year I was hospitalized for ten days with UC.  I gave my daughter my pass word so she could get into my Yahoo mail and inform all my contacts not to send emails because I really didn't know how long I would be in the hospital.  Well, all my cyber friends sent good will messages and prayers.....all except a woman whom I considered a very close friend.  Our families met over twenty years ago while camping.  Our children became close friends too.  She totally ignored the fact that I was ill.....until....six months later when she was diagnosed with breast cancer.  Her husband phoned us.  They were devastated.  I immediately called her, sent her cards and continually pray for her.  She has apologized to me profusely for ignoring me when I was ill.  Now, grant you, she has something far more serious than UC but I believe that now she appreciates what friendship really means.  It doesn't take much to offer a kind word.
     God bless you Molly and I hope and pray you continue your journey to improved health.
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.


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 5:37 PM (GMT -6)   
Hi Christine, thank you for your well wishes. You hit the nail on the head it doesn't take much for a kind word and it means so much to the person who receives it. I'm glad your friend realized what a special friend you were and are to her...again, thanks for prayers and blessing.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/31/2009 10:05 PM (GMT -6)   

I understand where you're coming from. My UC symptoms started right after graduation, and it seemed that none of my so-called friends cared. They knew I was sick, but most of them never bother to ask how I was feeling, what was wrong, etc. The latter and the changes with going away to college made realize that my HS friends weren't going to be lifelong friends. However, I have a friend here at college who'll always ask if I need anything if I'm sick.

Molly, I'm sorry your co-workers aren't supportive, but you always have support here!


Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/31/2009 10:20 PM (GMT -6)   
Bookworm21, you ended my hard day on a good and positive note. I thank you for that and I am thankful for the support here, that is what got me through my day today. There is a lot to say about good and true friends

mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 4/1/2009 8:03 AM (GMT -6)   
Hi Derek,

Good morning to you too. Thanks for thinking of me, that is sweet of you. Boy the anticipation caused me in and out of the bathroom even more than usual(LOL). You know the funny thing is it was exactly what I expected it to be. There were those who were genuinely glad (and it's so funny you can really feel that which is true from someone) saw the manager in the hall almost the first person I ran into. He was cordial and said good to have you back and gave me a hug and the day went on. I was only there for a few hours (light duty) for a few days, so glad to go when it was over. I didn't linger to chat like I sometimes did. So all in all with the good wishes from those on here I pulled up my boot straps and did it. I would expect today to be a little easier to face so glad about that. Thank you Derek, this has started my day off good already...Molly

therearemiracles
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Date Joined Dec 2006
Total Posts : 3608
   Posted 4/1/2009 9:16 AM (GMT -6)   

Hi Molly,

I'm glad you survived day #1, it will be easy from here. I remember what caused part of my UC was thinking people didn't like me or were talking about me at work. Or when I went on vacation what happened while I was gone and anticipating coming back. I wish now I would have said screw it and let it go, but it wasn't in my nature. I'm telling you, please don't worry about other people, be in your own world at work if you have to, don't let worry make you sick like it did me. Hang in there, just keep smiling!

Linda


Very mild left sided (could have fooled me with the "mild")  UC. STARTED LDN ON 1/25/09. Supplements:  Cod Liver, Probiotics, multi whole food vitamin, olive leaf extract.


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 4/1/2009 9:22 AM (GMT -6)   
I have empathy for people with problems with their health now. Before I was diagnosed with UC, I didn't care.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, 2 Lialda a day, doc let me off Azathioprine
 
 
 
 


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 4/1/2009 9:49 AM (GMT -6)   
Thanks everybody. Writing this little blog of what I was going through and the responses I have received is more than I could have imagined. What UC has taken I have gotten so much back in so many ways and Jars05 I think empathy is something we have gained and I look at that as a good thing...thanks to all.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/5/2009 4:44 AM (GMT -6)   
mollymcbutter said...
Well, this is just me kind of writing out my thoughts today. Wondering if others out there who suffer from UC or other chronic illness view life possibly differently, by that I mean more empathetic to people with illnesses.


Yes. It has, and it has also made me less empathetic to people who expect work to come before health.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 4/5/2009 8:40 AM (GMT -6)   
Joy, couldn't agree with you more on that
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