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I really need some direction here! I recieved my loop ileostomy last march, with this pandemic going on I can not return to NYC to get the rest of the surgery needed.

During my colectomy the biopsy report stated Crohn's, although at the same time my thyroid really messed up, not even knowing at the time. Basically the whole time the doctors said Crohn's it could of been my my thyroid the whole time!  I had the ileostomy for seven years before deciding to do the j-pouch because my gastrointestinal/ surgeon was totally against  the j-pouch. But I went ahead after my doctor ok'd me to go to Cleveland, OH.  From this point I should have put the brakes on, but no I had the surgery done then I was absolutely miserable and had a total thyroid removal Cleveland doctors thinking this was the issue.  Yes my thyroid just quit all together. Although this was needed it did not solve the j-pouch problems. 

I visited doctors at NYU and they said it was severely angulated and recommended going back to the stoma this being a loop ileostomy to let things rest and see what happens. Well here I am now having short gut! 

What now??? I have to eat every 2 hrs, to even keep my weight at at least 95 lbs.  this is truly a nightmare and regret even putting my family, husband, friends what do I do I just want this to be over in the worst way. I think the only way is the permanent stoma but my husband says no!!!! I cant live with this short gut because the j-pouch is at rest right now and was told that the surgeon had left extra bowel in case the surgeon needed a new j-pouch. 

Please anyone give some advice on how to end all of this and move on and life a productive life. 


Thanks LJK







Original Post

It is not up to your husband to decide whether you get a permanent stoma. He is not the one who is suffering. He is not a doctor. How can he be the one to decide on such an important health issue? I am sorry to say this, but it needs to be said.

There is still a long section of your bowel after your current stoma that is not being used, and if you end up getting a permanent stoma, you would use all of that section and would not have a short bowel. Then you can have a good quality of life with a permanent ileostomy. With Chron's, you should not try a second j-pouch. If it fails, then you might end up with a short bowel for the rest of your life in addition to a permanent stoma.

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