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IleosTony
(@ileostony)
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Joined: 5 months ago
Posts: 104
August 14, 2019 11:57 am  

Liza, prayers for peace and wisdom.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LLNorth
(@llholiday)
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Joined: 8 months ago
Posts: 63
August 14, 2019 12:17 pm  

Thinking of you! 🙏🏼

I love the smell of coffee in the morning. It smells like .... victory.


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Dona
 Dona
(@dona)
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Joined: 2 years ago
Posts: 689
August 14, 2019 12:42 pm  

Good luck Liza. I hope you get that appointment soon. Waiting is awful. Keep asking questions.

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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SqueakyandLiza
(@squeakyandliza)
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Joined: 4 months ago
Posts: 171
August 14, 2019 6:38 pm  

I'm sorry this is so anticlimactic after all the buildup. The doctor today did not have the results from the GI doctor yet, so he just photographed and measured my wound. They are going to follow up to get the results. I have another appt on Sept 5 to get my seton ring changed, so I'm sure there will be more discussion then. 

I did have a call from the GI nurse however. She said the doctor found more Crohn's than he was expecting and wanted me to go for blood work to test my Humira level and the antibody level to see if an adjustment is necessary. They wanted me to do it at my lowest point, which is right before an injection. Well, I'm scheduled to inject tonight, we went and had blood drawn this afternoon. 

Thank you all so much for the support today. I will keep you posted. 🙂


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IleosTony
(@ileostony)
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Joined: 5 months ago
Posts: 104
August 14, 2019 7:08 pm  
Posted by: @squeakyandliza

I'm sorry this is so anticlimactic after all the buildup. The doctor today did not have the results from the GI doctor yet, so he just photographed and measured my wound. They are going to follow up to get the results. I have another appt on Sept 5 to get my seton ring changed, so I'm sure there will be more discussion then. 

I did have a call from the GI nurse however. She said the doctor found more Crohn's than he was expecting and wanted me to go for blood work to test my Humira level and the antibody level to see if an adjustment is necessary. They wanted me to do it at my lowest point, which is right before an injection. Well, I'm scheduled to inject tonight, we went and had blood drawn this afternoon. 

Thank you all so much for the support today. I will keep you posted. 🙂

Oh good, more waiting. This must be such a pain Liza. I'm sure I'm not the only one happy to support you even as you keep waiting, however.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
(@squeakyandliza)
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Joined: 4 months ago
Posts: 171
August 14, 2019 9:19 pm  

@ileostony

Thanks Tony. You are very kind. 


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LK
 LK
(@dlkfiretruck)
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Joined: 2 years ago
Posts: 560
August 14, 2019 9:51 pm  

 Liza, please don't worry about us all.  Unless death is imminent we  all become  seasoned in the "waiting" department.  It happens! Even a horridly painful throbbing, abscessed tooth must wait for antibiotics to kill the infection and then wait again for the repair. Waiting is hardest on you and your family.  Sometimes tests have to be sent to another lab then the one it started at, for further clarification of results.  Hang in there!

Linda


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SqueakyandLiza
(@squeakyandliza)
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Joined: 4 months ago
Posts: 171
August 15, 2019 7:33 pm  

I'm doing my best, Linda, but some days even hanging in there is a challenge.  Today has been one of those days. 


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sjlovestosing
(@sjlovestosing)
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Joined: 1 year ago
Posts: 276
August 15, 2019 7:40 pm  

Hang in there, Liza. You are in my thoughts and prayers.

Stella


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SqueakyandLiza
(@squeakyandliza)
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Joined: 4 months ago
Posts: 171
August 15, 2019 7:48 pm  

Thanks Stella!!


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LK
 LK
(@dlkfiretruck)
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Joined: 2 years ago
Posts: 560
August 15, 2019 11:31 pm  

Liza, for a person who has undergone emergency surgery, a wound not healing well and an ostomy, carrying around a Vacu-pak to suck out infection from your abdomen for months, and all that comes with it, means we often fail to recognize the importance of  something like what you are going thru,  as  a "traumatizing", "life changing" event.

What you are doing since,  is the best you can do, and you are doing that by simply getting thru it one day at a time.  You looked for help and information and have come to the right place, but it does not minimimze what you are going thru. We can answer your questions the best we can, offer tips and ideas and cheer you on, but your real work comes from how you get thru this at home and work.  There is so much to deal with at first that we may ignore what we are truly dealing with.  That is, the personal assault on our/your  body and brain. Some seek a professional to deal with and talk about these things and I applaud  them for doing so.  It is so normal to not want to accept this rude new normal in our life that maybe we should all seek some counciling from a pro to help us deal better all around. It is equally as normal to want to cry  and as normal to want to turn around and run the other direction. A person is tougher the  they think when they face it head on and ask the questions needing to be asked and stay put, to deal with all of it. And equally so to recognize when to get so further help.

Liza, you're a tough gal. My personal statement many times over in a day has been. ."I'm okay so far." You can borrow it if you think it will help. 

Linda


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