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Msbjlee says hi

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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
Topic starter  

My name is Barbara and I am 68 years old. I have a handful of autoimmune diseases caused by prenatal DNA mutations. The worst is severe Rheumatoid Arthritis.  The inflammation factors of RA brought on diverticulitis. After several rounds of diverticulitis, the 3 week stints of IV antibiotics and the most horrible pain I have ever experienced (an honest 10-laying on the floor crying kind of pain) it was decided to remove my colon and have a resulting colostomy.  I was in hospital and rehab for nearly 8 months.  It involved 3 surgeries, 2 systemic infections and a round of adrenal failure (brought on by a `doctor` who took me off prednisone cold turkey  (even my dentist know better than that) It nearly took my life.  In the 8 month process i lost 98 lbs which was needed (the diet sucked, but the end result was nice) and I lost my strength and endurance. I am currently working hard in the gym to get that strength back!

I have been a background lurker with these forums, but, as I told Eric they have encouraged me and brought me a great deal of hope and peace.  So  the future is looking better and I am  moving out of the background shadows ... Here I am!

Barbara

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!!


   
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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

Welcome to the forums Barbara. I am happy you came out of the shadows to join us and contribute to our 'project' here. We are all benefiting from Eric's website and this forum where we can talk together.

 I am happy to hear you are doing well and recovering your strength.

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


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

Welcome  Barbara,  

You have taken a vital step forward. You're breaking out of your shell. Welcome to your new appreciation of life. 

We are here with you. All you need to do is reach out to us.

 


   
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(@john68)
Joined: 7 years ago
Posts: 2031
 

Hi Barbara, Great to hear you are looking on the bright side, Dark days behind and bright future ahead. so hello and welcome

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4203
 

Welcome, Barbara! 

Thank you so much for sharing your story and joining us here. 

Please, feel welcome to ask questions and contribute in any way you can. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Hi Barbara

Welcome to the group I joined a few weeks ago and it is nice to have all these friends to get advice from or just throw out an idea and get back input . Eric had a great idea with this forum its been helpful for me .

Proctectomy , Ileostomy , Ulcerative Colitis


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Welcome Barbara!!! YOU have been through a lot!!! Sorry that u had to endure such pain before the operation!! I also had a hard time and many months in Hospitals and rehab- and pretty much lived in CCU & ICU W/private nurses/bla bla bla.  The only difference between us is that I didn't know that I was so sick in so much trouble..  Just got pain-passed out and BANG !! My colon is totally removed after 4 months of comma-2-months and death, - The adjustment to my pouching was a long hard event for me. Along with the 55 Pounds lost.  Don't do to much with the gym.. - Takes a long time for the body and mind to heal.. First the mind, a healthy mind heals the body.. Unfortuanly, (sp) we do have to deal with both at the same time..  When I became aware of my out come after 5 months, this nurse was emptying my pouch and I thought to myself "Oh my GOD!! is this what I have to do every morning? what will Tom think" HA! Joke on me!! I was emptying 20 times a day and here I thought that I only had to it just every morning.. 3 years now, and I empty about 10 times-depends on what I eat/drink= sugars s, dairy- Hope u get your strength back soon and keep it!! There is life with a pouch.. The early years (2)was real bad for me.. Mentally, But still remain very dehydrated.. I get 12-14 pounds of fluids through my power port every week.. Hope in time I can get rid of that and start living.. Great system Eric has here huh?  Only been an member for a few weeks, but I feel like I am a REAL PERSON!!! Thanks to everyone!!! I came back to  life again and enjoying it even tho I have my limits-some don't as much as I.. DO WELL GIRL!!! We r blessed.  

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


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Your all over the place huh, Robert.... Cant catch up with you my friend from calif...  He had such a good report today-I am so happy for ROBERT!!!!!! YAAAAAAAAAAA!!!!!!! 

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


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

Where is your PICTURE  John????? Want to see that roll of deoarant of yours.. haha. 

Looks like we got to keep our new member Msbjlee, on her toes!! She had a real hard time-God love her.  Her future is ours to behold and love.. Most of to support..  We are special people and have one more to get some ideas from !!!!!! YA!!  

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


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
Topic starter  

Wow you have had a rough time too. My surgery was also a bit of a surprise. Had been talking about it but didn't realize it was happening right then.  With all the activity and stress of two other surgeries and the adrenal system failure, in ever had grieved. I have lost a lot of family over the years... mother, dad, spouse, brother, his wife and his 6 children.  The grieving that has started this week finally is every bit as hard and difficult as with family.  Working through it though and will come through.  With the high doses of prednisone that I am on right now, I hope I don't enter the anger stage of grieving. Could be bad along with roid-rage ?   Glad you are surfacing and finding a good place, I hope to find it soon too.

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!!


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

WOW! your dealing with many different stages of grieving!! Right now, your the one that counts.. Conffusion is the worst.. Make sure that u talk with your Doctor with ALL that is going on with you life right now.. STRESS? can kill you-- Maybe the Dr. can help direct you along with your new normal life with the stoma.. I am talking about your Primany Dr.  They at pretty much in charge of YOU in every area, They watch YOU, see your expressions, even u can cry to them.. I hope we/Eric/blog can help u through some.. We are one.. We are family.. Your not alone.. Yes, in many areas, it will take much time for you. but on this end- the "stoma elites" hopefully we can help you through this surgery.. that is now the past-please, look forward to a good year of healing.. then work on the other issues that got planted on you.. Stomas looks like a wart huh? I named mine Nellie....... If I try not to play the game of seeing how long I can go without changing?  I win!! Every 3rd. day is my charm.. and I feel secure.. Good luck!! Good health- great life ahead.  

Don't be/get angry-what has happend to you with your above-you had NO CONTROL OVER THESE . Your just the survivor which puts you/us in a hard place and a rock.. But we can wiggle out of it... Give yourself a good year... to heal.. and join in with us for some happy connections.. Hugs!! M.

Your were left as a surivior! 

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


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
Topic starter  

Thanks Marcie,  I am a survivor and plan to be for quite some time to come. 

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!!


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

I can see that........ Its about time you got a break huh? I would be nuts totally!! but we woman we get doing for others, and forget us, and the shock hits us later on and we WONDER why?? and why so long afterwards?? thought that I was done with that basket??  Happened to me years ago-and that is why I got the UC among other issues that caught on to that area-like "lets let her have it full blast and she can figure it out later" It just hit me all at once BANG!! 

then I lay in bed WONDERING what happened? Again right? 

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


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
Topic starter  

Ok, I added a photo however hair is longer and have lost 98 lbs. Will work on a decent new one. Also added a signature line 

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!!


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
Topic starter  

Decided if I showed my face I might as well use my name.  So from now on you will see Barbara instead of msbjlee.

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!!


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

HI Barbara, nice seeing you-- I was getting confused there with your name and your other I.D. But I think that I had the right person.. all along.. I hope-this make it so much eaiser.. :-)

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


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

I don't know how to do a signature line.. OHHHHHHHHH Eric???????????????

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


   
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