Brief Update

I promise soon to write an unabridged version of my three month stay at the Humber Hilton, I did think a brief update was in order.

I came home March 17th still on 24H TPN (IV nutrition) I am able to tolerate 200-250 cal/day most days.  I have had a few PICC line issues which should be eliminated once I have my port-a-cath done Thursday.

I have had incredible back pain since early March which was originally attributed to a kidney infection however that infection has resolved and the pain remains.  A course of muscle relaxants has also not helped. . .hell liquid morphine and duragesic patch has also proven unsuccessful at relieving this pain.  I saw Dr Hagen today and will every two weeks until I am off TPN who gave me some distressing news.  It seems the pain I have may be the result of the extension of my partial obstruction slowly approaching a third total obstruction which may cause me to lose my pelvic pouch (a reservoir made of small intestine to replace my colon 10 years ago).  My best chance to keep my pouch is to have the original surgeon from Mt Sinai to operate. . .the referral was sent 2 weeks ago without an appointment materializing.  My GI guy in Hamilton asked sent a FAX to Dr. Hagen asking him to expedite the referral, which Dr Hagen claims he did, my GI guy also sent a FAX to the the surgeon I have been referred to asking to expedite. . .still nothing.  Dr Hagen said today he would ask again to expedite the referral.(whatever good that will do)  In the interim if my pain becomes unbearable or I start vomiting I am to go directly to Mt Sinai.

To be clear if I lose my pelvic pouch I will need a permanent ileostomy as I do not have enough small bowel to make another pouch.  I had a temporary ileostomy 10 years ago. . .I absolutely hated it. . .the thought of a permanent one makes me literally want to die.

And still no appointment at Sinai

I am so sorry you are struggling with these awful health problems.  It is impossible to know why some people have these problems...its seems so unfair.  I hope things work out as well as they can.  Life will go on, no matter what the final outcome and you can still flourish despite the health challenges, although your life may be different than it was before the health issues..  Never give up...ever.  Thanks for bravely sharing this difficult experience.  Sending healing wishes your way.

*gentle hugs*

Mt Sinai I find is hard to get a timely reply from unless I was to phone directly. Maybe you could do that?

My goodness, I am so so sorry! You have been through so much I am sending happy thoughts and healing vibes your way! I hope you are able to keep your pouch! Fingers crossed ... hugs!!

Oknee

Sorry you are still having issues. Stay strong and big hugg for you. 

Thanks for the update - thinking of you often.

SO sorry to hear this. You are extremely courageous (but probably by now... totally fed up - I would)

Hang in girl! as I know you are doing

Gentle hugs. If you need anything - you've got my e-mail 

Take care

Hello Leona, Roxann here, we chatted a few weeks back when you were in the Presidential Suite at Humber Hilton.  I have been thinking about you.  I suspose the good news is that you are in your own home which must provide you with more comfort and quite.  Also at least you have been shuttled back to care at Sinai, if you can get your calls returned.  There is really nothing I can say, it is difficult to see the bright side of any of this.  You do have to keep on keeping on, for the sake of your family & friends and your iron fans out here.  I looked up your article , great information well written and easy to understand.  I am going to add prunes to my daily intake once I get a daily intake.  At present I am savoring the many faceted aspects of Chocolate & Vanilla Opti, pretending its a fine Merlot and Pino Gris, my VSG is going to be April 12.   

I will keep thinking about you, as I am sure many people will be doing the same.

Ahh Leona....you have had such a difficult time of it.....I am so sorry kid,.......I sure hope they get things figured out for you....and you learn to live with your new normal.......

 

Thinking of you Leona and hoping for the best outcome

 

Barb

Wow. Thank you for sharing your update. I was thinking about you. I hope you soon get the help you need so you can start feeling better again.

My prayers are with you Leona. You have helped so many people. You deserve to have it come back to you. Take care. Stay positive. Lots of big hugs.