• Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
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Topic: My Apologies

To My Dearest "Other" Family. I have not been on the Board as much as I was as I have been pretty sick the last month. I feel bad writing about it as it is not Cancer but did want to tell you. About 6 months after Teddy passed I exploded so to speak with Ulcerated Colitis. I had been on Presnisone in high doses for a year, way too long. Also canot take any of the Mesalamime products that most can take for UC. Well the week of Thanksgiving I had weaned down to my last Pred and at the same time started to not eat. I would eat a few bites and could not eat any more. Then about 3 weeks ago I stopped eating as I would get so nausous. For 3 weeks I have existed on Water, Ginger Ale and Diet 7-UP. I have dropped 25 LBS, and am very weak. I just had an Endoscopy and all is good. I have one more test Monday, a bowel thing with Barium. I am so nervous as to how I will drink all that Barium! The weird thing is I have been to ER twice and my LABS are great! We are thinking it is either the UC or still effects from going off the Preds. Any advise would be most appreciated. BTW the only other Med I could take for the UC would be Humira but there are warnings on it for Diabetics or if one has had Cancer of which I fit both categories. Any thoughts on Humira. Thanks everyone, this Board keeps me going.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: California
  • Registered: Mon, 20 Aug 2012
  • Posts: 281

Re: My Apologies

Lainey, your condition is every bit as serious as cancer and you also deserve all the support you can get from those who know you and really care. I can't help w UC meds but I know how serious UC is; my husbands best friend had it. Sadly, he passed from complications of surgery when they did removed his colon but it was very unusual and unexpected. Anyway, we've participated in the Chrones & Colitis walks and learned enough to know that those with Ulcerative Colitis do need support! Please know you're cared for and see let us know what results of your test is. Take care, Lainey Willow

Willow
  • Lainy
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Re: My Apologies

Willow thank you very kindly and Bless you for walking for C & C as my 24 year old Grandson has Chrones.They say my UC is not the worst but it sure is disabling! I have a whole new respect for UC patients. Your words are very much appreciated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 690

Re: My Apologies

Hi Lainy,

So sorry to hear about your current issues.  I remember not being able to eat and people telling me I had to and just being in despair.  25 pounds is a lot of weight to lose in a few weeks young lady!  Hopefully they will find something that will help with the UC. I hope they are monitoring your cortisol while you weaned off of the prednisone.

I don't know much about UC so not much help there.

Take care Lainy and I hope things get better soon.

Sending Hugs,
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: My Apologies

Aww Lainy,

I am so sorry to hear you are having so much trouble. I'm sorry, I don't know much about UC meds, but I do know the disease is painful and debilitating. Plus, I'm sure you always have to be near the bathroom or know right where one is. No fun. My heart goes out to you. I hope your docs get you straightened out and can get you on the mend. You offer so much help on this site even when you are dealing with your own illness. Lauren and I both send you loads of love. Take care.

Hugs,
-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 778

Re: My Apologies

Lainy:
I'm sorry to hear about your UC. I hope the docs can get it under control soon so you can start feeling better. Not being able to eat stinks.
You are in my prayers that everything goes well.
Huggs,

Kris

Don't just have minutes in the day; have moments in time.
  • Lainy
  • Lainy
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Re: My Apologies

Dear Randi and Pam, thank you. Pam, you are so right about the bathrooms! i KNOW WHERE THEY ALL ARE. Actually I have not driven for a month as I am too weak and  I thank God for my daughter. She goes to the store for me for my soda and water and takes me to all my appointments. Thank you both for your notes.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,990

Re: My Apologies

Lainy,

Just came upon this post.  Sorry to hear about all your health issues.  I don't Know much about UC so can't be of much help, but know that I am thinking of you and hoping that things start to improve for you very soon.

Lots of love & hugs,
Darla

"One Day At A Time"
  • Registered: Mon, 27 Jun 2011
  • Posts: 436

Re: My Apologies

Lainy,


I'm so sorry to hear you are not feeling well.  I have never known any one on Humira, so can't help you there.  I'm sure being on high steroids for that long was not fun at all.  Please keep us posted. I hope you feel better soon!

Take care,

Susie

  • From: NSW,Australia
  • Registered: Sat, 14 Feb 2009
  • Posts: 558

Re: My Apologies

Lainy,I think the ceasing of the prednisone is almost like a separate condition itself because it is a big adjustment for the body to start back its own cortisol production.Hopefully you will get a remission with the ulcerative colitis and this is much more likely with it when diagnosed at an older age.
With the barium meal see if you can drink less of it or if they can mix it with something,it is a common problem with the barium!
              good luck    and wait and see how the bowel is going before worrying about further meds
                                                   Janet x

11 Reply by Pam (edited by Pam Fri, 18 Jan 2013 23:05:21)

  • Pam
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Re: My Apologies

Lainy,  you are such an angel to so many people on this board.  Your words are light and playful yet meaningful in every way.  I hope you feeling better soon!  You are the best!  We need you!

  • Lainy
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Re: My Apologies

Thank you Pam, Susie, Darla I never realized how good the receiving end of this Board can really be. In a bitter sweet way this has to be the best place on Earth!

OMG, Janet. I kept telling the GI this week, no more, no more until I take the bowel test!  I got a call early evening that the test they squeezed me in for Monday, cannot be, so now its scheduled for the 31st. I cannot see another 12 days of this! But I have no choice. At least if I have the new production of Cortisol to hang on to I have something positive to think about. Thank you so much.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Washington DC
  • Registered: Wed, 17 Oct 2012
  • Posts: 122

Re: My Apologies

Oh dear, Lainy. I've never met you and I am new here but I love you so much already! I am so sorry to hear of your suffering and wish there was anything I could do to make you better. Virtual hugs will have to do. Please keep us posted we are all worried sick about you.  xoxoxox Holly

  • Lainy
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Re: My Apologies

Oh, thank you Holly. Honestly I was just mentioning your name yesterday and how you are such a valuable addition to this Board. The feeling's are all mutual!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: My Apologies

Hi Lainy,
Please accept my well wishes and get well soon.
Your health is the first priority and I am sure Ted will agree with me on this.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: New Jersey
  • Registered: Tue, 20 Nov 2007
  • Posts: 306

Re: My Apologies

Sweet Lainy,
So very sorry you are not well.  Sending healing prayers and energies.  Don't know anything about your condition or I would offer advise.  Sorry.  Stay your positive self.  All will be well.
In peace,
Karen

Wishing all God's blessings!
  • Lainy
  • Lainy
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Re: My Apologies

Dear Percy and Karen, I am just over whelmed from all of you. You are all the shot in the arm I needed and even thought I was not sure I wanted to post this, I am so glad I did!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
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Re: My Apologies

Hi Momma,

Hope that you start feeling much better very very quickly indeed!!! Not much advice I can give you so take a huge hug instead!!!

Huge hugs,

Gavin

  • Lainy
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Re: My Apologies

Oh, Gavin I just e mailed you. Hug taken!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Thu, 28 Oct 2010
  • Posts: 105

Re: My Apologies

Lainy,
I just saw these posts ( I have been off the board awhile) and am so sorry to hear of all your trials and tribulations of late!  You are always so supportive of everyone here and have been such a comfort to me.  I hope you have the pain under control and have some answers.  I will search for more postings.  I don't see any after the 19th. 
Sending you healing thoughts and a big hug,
Kathy

  • eli
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  • Registered: Tue, 08 Nov 2011
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Re: My Apologies

Dear Lainy,

I've been away from the board so I'm coming to this thread rather late. I'm so sorry to hear about UC issues. Sending you my best wishes and hugs. I hope you start feeling better soon.

Thank you for everything you do for this board... you are the best!

Eli

  • Registered: Fri, 12 May 2006
  • Posts: 8,183

Re: My Apologies

Not to worry you, but Lainy won't be near her computer for a few days.  Be assured though that she will answer your caring postings as soon as she can.  Spoke with her and she sounds great.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Calgary, Canada
  • Registered: Sun, 07 Mar 2010
  • Posts: 361

Re: My Apologies

Sending hugs and love across the miles Lainy.  I hope you are starting to feel better and gaining your strength back.  Thinking of you!!!

Jen

  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 421

Re: My Apologies

Lainy,
I am so sorry to be just reading this. I will be sending lots of prayers for you.
Hugs,
Lisa

Everyday is a gift

lisacraine's Website

  • Registered: Fri, 12 May 2006
  • Posts: 8,183

Re: My Apologies

Spoke with Lainy briefly.  She is in the hospital for observation and feels quite happy to be there.  Blood test appears normal except for her low potassium level, which has been corrected.  The big puzzle is her continuous nausea and vomiting of everything taken by mouth, including liquids. 
She knows that you are thinking of her and is appreciating your concern and is sending tons of love your way.
We are hopeful that she will be released within the next few days.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER