back and hopeful yet scared

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Camey0777
Regular Member


Date Joined Jun 2004
Total Posts : 199
   Posted 7/14/2010 2:33 PM (GMT -7)   
I have been a member for a few years now. been through so much many of you wouldn't even believe the things I have been through with this disease. unbelievable. I have so many complications that my docs are no longer can treat me. I have had over 100 blood transfusions, I am currently low on blow, albumin level 0.9 and immune system completely shot. sores on skin not heaing. have a whole in my left front thigh thats about 1 1/2 inch around and 3 to 4 inches deep. it drains constantly. i am on anti biotics trying to get it to heal from inside out but very slow heal if at all. i can see the vessels in my leg turning black. losing feeling in feet. but also have nuropathy. I don't know there is a long list of problems. they want me to think about hospise i said. anyway any ideas on how to get this whole to close up? thanks nice to be back. sorry im never going to get better . wishing good tings for all of you.

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/14/2010 3:38 PM (GMT -7)   
Wow I am very very sorry to hear this. You are in my prayers.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/14/2010 3:39 PM (GMT -7)   
Camey:  Hi, I'm realitively new to this web site but learning quickly.  I'm sorry that you have been so devasated by this disease process.  Hopefully others will come along and give you an electronic hug, but please accept my hug and my deepest sympathies for all that you have been through and are going through. 
 
In reading your posting, it does seem that the knowledge and skill of mankind via the medical world has been exhausted and so it seems that your physicians are providing you reasonable advice.  Sometimes the use of medical treatments and medical therapies becomes inhumane and prolongs as well as causes more pain and suffering than cures, fixes or improves.  The next phase in all of our lives is one of inevitable destination, our bodies are not sustainable forever and so we must find peace, comfort in the difficult, spiritual support and guidance.  Hospice provides a method of controlling your pain, supporting yourself and your family as well as ensuring that more painful therapies are not implimented against your will if something happens and you no longer have the power to decide for yourself.  
 
God bless, take care and let me know if there is something more I can do to help.  
Barb   
 
 
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


Camey0777
Regular Member


Date Joined Jun 2004
Total Posts : 199
   Posted 7/14/2010 5:17 PM (GMT -7)   
thank you so much for your prayers and heart felt sympathy for all I am going through. I am spiritual talk to my creator alot and what his will is is what will happen at this stage of the illness. please continue to pray and I will pray for you all as well. I do have hope, but I also see reality. that is what is the hardest facing mortality square in the face. leaves me scared S@*tless. the fear of more pain and alo not passing in the arms of the man I love. my husband. thanks again so so much. hugs back to you

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/14/2010 5:59 PM (GMT -7)   
Camey:  I know this is hard, and hard to know what is right, wrong and all the gray in between.  Life is somewhat like a train that one can not get off easily and in the medical world there is often no stop button built into medical professionals and treating facilites.  Even familes have a hard time with these types of decisions but these are important discussions to have now with your loved ones.  I do work in the medical field and have quite a bit of experience/knowledge and training -so when you discuss areas of black developing that is very concerning and unfortunately the doctors are probably recognizing how serious this progression is.  While certainly not able to diagnosis from afar -this is very very grim and your lab work indicates you will not have the abilty to mount a response to fight this battle.  Under the hospice shelter your medications are bundled at discounted rates, there is no more trauma, forced testing and yes - you can stay in your home.  The hospice center should be able to advise you about this -they have pain management experts that provide you and your family with knowledge and guidance in many of these issues.  I'm sorry that we haven't gotten to know each other better -but be blessed -and know the peace that passes all understanding.  Barb    


Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 

Post Edited (grumpygi) : 7/14/2010 7:03:41 PM (GMT-6)


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 7/15/2010 1:32 AM (GMT -7)   
Camey I don't know what to say. I know how to feel though and certainly know how to pray for peace for you and your family. Rob
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 7/15/2010 3:55 AM (GMT -7)   
Hey Camey welcome back. Sorry you're still having a rough go of it. A couple of the "old timers" were asking about you a while back I'm sure they will be around soon to say hello.
 


Camey0777
Regular Member


Date Joined Jun 2004
Total Posts : 199
   Posted 7/15/2010 4:33 PM (GMT -7)   
Thank you so much for the warm welcome back. it's been awhile since I have been to this site. been going through alot as Im sure many of you are to. its great to have a place to go for support, advice and warmth, compassion and understanding. thank you all again. Donna

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/15/2010 4:47 PM (GMT -7)   
Camey - I remember you. I am so sorry that your body is not cooperating. I will keep you in my prayers. I have a relative who works in hospice and the people there can really provide a lot of comfort and support. I would encourage you to seek that support so that you and your family don't have to go through this alone. I'm praying for you.

Camey0777
Regular Member


Date Joined Jun 2004
Total Posts : 199
   Posted 7/17/2010 7:59 PM (GMT -7)   
Thank you steff, yes its been awhile since ive been here. Alot has happened to me and my body in these last few years. I have a caregiver here at home 5 days a week. she is wonderful to me. but in the beginning there were problems , but now after firing and rehiring 2 times I finally got all things straightened out and she gives me the best care. and will do well working with hospice. she also knoews I want to pass at home. she prays for me everyday and never lets me leave her side when waling as I have fallen so many time with my face breaking my fall after breaking both shoulders and unable to have surg to fix because my albumi is so low. i won't recover. my docs say everything wrong other than more blood transfusions and pain med that they can do. to many complications and no doc or specialist don't want to touch me. to scarey no one wants to lose me. even surgeons won't touch me. no one whats to lose me on the table and its almost a garuntee. but keeping in touch with all of you again and trying to stay positive which is really what I am trying to do. positive. also letting my famly know how important the human touch is when ones immune system is so low touch can help build it back up. I keep trying to gain wieght i am 50 under weight and need to gain so badly. but my intestines and stomache don't want food at all. no matter what i tell myself my stomache hurts sometimes just the thought of food makes me hurt. any good fattening ideas. all the support you can give me and I can give back would be wonderful. thanks to much. please keep praying fior me and I will pray daily for all of you. thanks so much . Donna

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/21/2010 4:42 PM (GMT -7)   
Have you tried ScandiShakes? They are HIGH calorie shake powder mixes that when mixed with milk (don't know if you can drink that or not) come out to be about 500 or 600 calories a shake. They have vanilla, chocolate, and strawberry. You can order them online I think. A little expensive, but worth it if you need the boost. I will definitely keep praying for you Donna. I'm so sorry for all you're going through.

Stef
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