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Barbara
(@msbjlee)
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Posts: 447
March 17, 2018 7:09 pm  

I had my colonectomy 14 months ago, was told they took about half.  I have had constant intestinal pain and crampng but on my right side now. I have also had C-diff before.  I have been having frequent bouts of explosive diahrrea (5 today requiring 3 comp!ete appliance changes). I am constantly tired ... Spent three different days this week just sleeping through the day.  I have zero appetite. I have to force myself to eat as I am diabetic (type 1) and have to balance insulin.  So far my surgeon has said there doesn't appear to be anything wrong (read ... I can't figure it out.  From the symptoms I am beginning to wonder if I have IBD (already diagnosed with IBS) or Chrone's disease.  Is it possible to progress to these diseases when half my colon is already missing?  Would like to be better armed to talk to my doc.

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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Bubbles
(@bubbles)
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March 17, 2018 8:22 pm  

C-diff has a distinctive horrible smell. And lots of gassy bubbley  poop. That's the toxins the C-diff spore gives off.

i have had it twice First time for 11 months . Then 3 yrs later again for 10 months . It's a miracle I am alive . 


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Barbara
(@msbjlee)
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March 17, 2018 8:38 pm  

It may not be then.  Straight liquid but not bubbly.  Stinks but have had worse smell. Now i am wondering .  Glad you are alive !!

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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VeganOstomy
(@veganostomy)
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Posts: 2210
March 17, 2018 11:40 pm  

Barbara,

Crohn's can affect more than your colon, so you don't even have to have a colon to have Crohn's. You would need to be tested (usually a combination of scope + lab work) to confirm, but if you believe it could be something like IBD then I'd speak with your GI.

The combination of your ailments are certainly not going to be easy to separate, but I would keep asking your doctor to explore the root cause until you are fully satisfied. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Zvitusk
(@zvitusk)
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Posts: 396
March 18, 2018 5:59 am  

I suggest respectfully that you also get in contact with the Crohn Disease people for the purpose of finding out to whom you can send your medical records for a second opinion.  

Today, it is done electronically.  You don't have to travel. 

What I am seeing in your letters is that you need more expertise to conquer and vanquish and eradicate your problem . 

If any of us knows how to contact the Mayo Clinic or Johns Hopkins Hospital  or  Columbia Pesbyterian or... please let Barbara know. She needs our help.

Z


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Barbara
(@msbjlee)
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Posts: 447
March 18, 2018 1:09 pm  

I haven't ever heard that a 2nd opinion can be done electronically.   I am at the point where I think a 2nd would be good, but like Eric suggested it is going to be hard separate all the different things I have going on. My autoimmune system seems to think my body is one huge target to attack.  One thing that may be to my advantage is that I finally have a good start on remicade (I will have my 3rd regular infusion on tuesday) and it appears that remicade is used as treatment for a host of GO diseases.

 

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)
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Joined: 2 years ago
Posts: 447
March 18, 2018 1:10 pm  

Oops  GI Diseases not GO diseases but then it may have been a Freudian spell check error

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)
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Joined: 2 years ago
Posts: 447
March 18, 2018 3:59 pm  

Hmm, may be getting closer to the answer. Took a closer look (hard to do with that smell)  --bubbly it is. 🤢

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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