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Crohns after permanent ileostomy.  

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VickiH
(@vickih)
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July 23, 2019 11:25 pm  

In April I had my ileostomy surgery due to crohns that would not respond to any treatment.  My doctor stated he was afraid I would die if I did not get the surgery.  I feel good in general although this is still pretty new for me and I have my bad days.  My fear is that crohns could reappear. What are people’s experience?  Why did I even do this if it is not curative?  Just scared,  I really want my life back.


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SqueakyandLiza
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July 23, 2019 11:57 pm  

Hi Vicki, 

I know how scary this all can be. In my case, I didn't know I even had Crohn's and I almost did die. We called 911 one night because I was in such pain. A day later, my colon was removed. I was so septic due to waste draining through my perforated colon into my body, that they weren't sure I would make it through the surgery. I am still recovering a year later, with a wound taking forever to heal. But, thanks to some great support here, life with my stoma, Squeaky, has gotten much easier. I hope that things work out for you and the doctor figures out how to control the Crohn's. 

Liza


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john68
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July 24, 2019 4:18 am  

Hi VickyH, welcome to the forum, Crohns can effect any part of the body from the mouth to the anus. Having an ostomy removes the most problematic part affected. A very full life can be lived with a stoma. This site is a wonderful guide to helping you to do that 


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Dona
 Dona
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July 24, 2019 11:21 am  

Welcome VickyH,

This is a scary and very new experience for you.  Its hard to deal with the changes to your mind and body while recovering your health. But it will get better. Now that you have had this life saving surgery you can heal and get your health back. As said above, the removal of the inflamed colon will go a long way towards returning you to health.  This is your new life and it will be great.

Keep talking here! Glad you joined.


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Raine
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July 24, 2019 11:32 am  

Hi Vicky,  I have a permanent colostomy as of last year bc of crohns.  And as of last December its back (not that it ever left).  Do you have issues with crohns in other parts of your digestive tract?  That might be an indicator of future issues.  My best advice is pay attention to your symptoms and take care of yourself.  But don't dwell on what might happen.  


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sjlovestosing
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July 24, 2019 1:58 pm  

Hi Vicky,

Welcome to the forum. You will find a great deal of info and encouragement here.

I understand your concern, but I believe your doctor was right about having surgery. It probably saved your life. Raine is correct in saying to pay attention to your systems and to take care of yourself. Also, I agree that dwelling on one's fears will keep you from enjoying the life you have now. Attitude is half the battle. If you can keep it positive, that will go a long way in your healing process. Good luck and God bless.

Stella


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VeganOstomy
(@veganostomy)
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July 24, 2019 2:49 pm  
Posted by: @vickih

My fear is that crohns could reappear.

I had this fear for several years and then learned to accept that while this is a possibility, I can't let that fear control my life. 

Each of our risk factors will vary, and Crohn's is an insidious disease because it doesn't' only affect one part of the digestive system like UC does. 

Small bowel clinical recurrence occurs in about 28% of patients after total colectomy with permanent ileostomy for colonic Crohn's disease. Disease recurrence risk is 3.2 times higher in patients with history of ileal disease, and continued medical therapy may be advisable in this population. In patients without ileal inflammation at surgery, continued endoscopic surveillance may identify asymptomatic disease recurrence to guide therapy. SOURCE


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VickiH
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July 27, 2019 11:33 am  

@squeakyandliza

Thank you.  That is what my doctors told me was going to happen.  It’s been a rough road but I get emotionally better each day.  I appreciate all the support here.


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