Community Forums

the lounge is open ...
 
Notifications
Clear all

the lounge is open !!!!!!!! 11-7-17

150 Posts
12 Users
44 Reactions
39.7 K Views
Robert
(@njewell1)
Joined: 9 years ago
Posts: 763
 

Marcie it does actually look pretty good depending on what goes in it . But I am a meat n potatoes kinda guy don't eat much green or things that come out of the water or many vegetables but other than that I'm pretty open . Ha


Proctectomy , Ileostomy , Ulcerative Colitis


   
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

Well my doc was just in and visited with me. He does not want to send me home today yet because he was very worried about the amount of pain that I'm still in. And with it being the weekend it wouldn't be good to be home and not have things available to me. So the plan is this he's going to put me on long-acting morphine and Oxycodone for a little while to see if we can get it under control. He thinks if we get it under control and then it'll it'll calm down and I'll be alright again. He has definitely now said that I have IBS and that this is kind of the way things go with that. He also told me more about c-diff and their weird things it does to your body and I want to make darn sure I never get it again. So, one more might. You may get a laugh out of this. There are two Hospital under the Providence umbrella here in Spokane. One is called Sacred Heart and the other is Holy Family. But to the populace of Spokane they are known as sacred cow and holy cow


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
Dona and john68 reacted
ReplyQuote
(@john68)
In Memorandum
Joined: 9 years ago
Posts: 2059
 

Well one more night to be sure, plus light at the end of the tunnel


ileostomy 31st August 1994 for Crohns


   
Dona reacted
ReplyQuote
Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

Hi Barbara,

Just checking in to wish you well. Another night, but at least you will have the help you need.

I hope that your  pain gets managed soon. That sounds really hard to deal with.

I am sure your doctor knows the difference between IBS & IBD. ( but lots of people don't).Big points are the inflametory and the disease parts. as opposed to the irritable and syndrome parts. 

My mother also suffered from RA and Psoriasis.  Her skin was bad and the joint pain was mostly limited to her hands, so I know how debilitating it is. She suffered through it before all the anti inflammatory drugs  and immune suppressants we now have. No infusions for her.  ( But she did not die of it, as your doctor told you. you might..it was a heart problem later in life). I hope that is cheerful news, anyway! 

Love the Holy Cow vs The Sacred Cow.


Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Barb. just what did the Dr. tell you of the weird things of c-diff do to the body? 'Weird?"

       Your almost home.. Son going to help u out?


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Barbara, Sending u an e-mail.. Marcie........... 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

Thanks Dona, I appreciate your kind words. It looks like the doctor is going to get the pain under control I've already had the first dose and I can feel it working.  The pain is quite a bit less right now, so maybe overnight we can get it regulated and everything will be good to go tomorrow. As for your mom dying of RA the reason that it is the thing you will die from is that RA is what allowed the other diseases to get started. For example when I had came down with diverticulitis and my colon was in such bad shape the doctor told me it was the inflammatory properties of rheumatoid arthritis that caused the diverticulitis to happen diverticulitis took my colon but the cause was diverticulitis. So I figured that he would say about your mom that she died of heart disease but the heart disease was caused by rheumatoid arthritis. I hope that makes sense.  Thanks again  for your kind words Apparently it can strike any organ anywhere in your body at any time. I have a dear friend where I live and she also has severe RA and she only has half a lung left. It is a nasty and really ugly disease and it's takes a lot out of me just coping with it sometimes. People look at me and don't think that I have it because I don't have the bent fingers and all that stuff yet I will eventually.  And so I've looked fairly normal if there is a normal and it's the pain that's inside in the joints in my colon everywhere that that is so debilitating..


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
Dona reacted
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

Weird may not have been the proper term but what he said was that the effects of the c-diff can go on even when the c-diff itself has been handled. Like right now I if they did the the lab tests on me for c-diff they would come back negative because they have treated me with the antibiotics and done all that kind of stuff and they killed it off. But I'm still having the symptoms of it. He says that's also common with IBS, so to him they go hand-in-hand and it just makes you sicker. 


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
Dona reacted
ReplyQuote
Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

Hi again,

Yes, I understand. These autoimmune diseases are all very nasty.  And, they do tend to all lead to other ones. I don't know if there are more of them and more widespread, or the diagnosis is better now than in previous years.

I am very happy that your pain has eased up. Thats really great. 


Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Hey Dona, how r u doing these days???  

I agree with you with the C-diff       -- I just found out last week that I also had C-diff, when I was so sick and in a comma for 2 months-- etc................  got to get my siginture page done huh?? 

Barb will  be o.k.  She is a suriver..  A young 68 like me!!!!!!! And most of all she has great doctors.. Keeping her put until they feel she is ready-- NOT HER!!! but I am sure that she is ready to bust out of that joint!!  a long road she had.......... but well wishes from us all -- she will be smiling for years to come.. 

 

 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
john68 and Dona reacted
ReplyQuote
Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

Yes.. I never spent more than three nights in the hospital and I couldn't wait to get home. Not a vacation spot, thats for sure.

I think lots of us have c-diff and a lot of the time there are no effects. But when our immune systems crash it can get out of control.

 I had it ( they tested for it when I had my first surgery), but never really felt the effects. I was so sick with the UC, I probably couldn't tell. It did get me a private room with the nurses dressed like space invaders though.


Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
john68 reacted
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

I lived in CCU and ICU for 4 months before my surgery-- then back again-- Thank god I was out of it.. But soooooooooooooooooooooooooo Sick----------------- 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

I tell the nurses that it is nice that they all dressed up for my costume party, but, it would have been nice if they didn't all dress alike...variety is the spice of life!!


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Well Barbara, it is up to you for the spice!! Bed pan on head, That white blanket wrapped around you as if your the queen of a greek goddess...... And don't forget those stupid socks!! I got yellow.orange--  or lime green-- Wear all with pride!!  Your now their mascot !!!!!!! You owe them a great send off!!!!!!!!! You can do it!! IF I know you, something special will be added.. :-) 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Hey Robert, I have 2 slices of Quiche tonight for dinner-- And, boy am I going to pay for that tonight!! Should have had it during the day!!  But it was soooooooooooo good!!!!!!! And yes, (I ate my  dill pickles like corn on the cob) 

frekin cold today!!! Got a fast hard cold snap that should last until March. :-(

One thing I have not made is onion soup-LOVE that- But I know that will react to me like the Quiche..  Next year.......  You and John game??????????? 

 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
Robert reacted
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Robert, u shower with the caps they are talking about to order? 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

Marcie, I will add the bed pan to my costume that I'm wearing. It is not particularly a Greek goddess kind of thing. Rather I have taken a large 55 gallon black plastic trash bag put a hole in the top for my head holes on the side for my arms and on the front and back there are signs that read "common ordinary house hold germ" hope no one comes after me with a Clorox wipe.. ahhhhhvvvggggggggnnnnnn that burns my rump stjmp.


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Go to sleep    ................ and sleep well........... I will sleep in tomorrow and see what your up to this weekend.. 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
ReplyQuote
Barbara
(@msbjlee)
Joined: 8 years ago
Posts: 452
 

Thanks Marcie, for the first time in weeks I slept!! The big gun pain meds functioned as advertised.


Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
Robert and Dona reacted
ReplyQuote
Marcie
(@shulmjs)
Joined: 9 years ago
Posts: 1510
Topic starter  

Why didn't they give u those meds in the first place????? 


2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
Dona reacted
ReplyQuote
Page 4 / 8