Hello, I'm from Sweden, excuse my bad English. I am a liver transplant in 2011 and has now been diagnosed with Crohn's. elective surgery in November, where about 30 cm by the end of my small intestine to be removed. possibly should I get a colostomy bag. Is there anyone here that is transplanted and have undergone this surgery. Im scared and think this is a huge problem now, what will happend. I had problems with my stomach for over 1 year, has done several studies by X-ray and swallowed a camera that filmed the intestine from the inside. the doctor says that it is untenable to eat cortisone because of my rejection medications so because they prefer a surgery. so if someone is transplanted, please share your experiences / Anott
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Livertransplant with Crohn's
- Thread starter Anott
- Start date
You may find some help on this forum, but there is also a Facebook group (PSC Partners Seeking a Cure) where you would probably get some people who have had colostomy surgery after liver transplant. I don't know why you were transplanted, but PSC is a liver disease with a high coincidence of inflammatory bowel disease, so a number of people in the group have had liver transplants and also have either Crohn's disease or Ulcerative Colitis.
Here's a link: https://www.facebook.com/groups/39847120173/
Here's a link: https://www.facebook.com/groups/39847120173/
I eat immunosuppressants to not get my rejection of the new liver. according to the doctor's prescription so it is only cortisone that can bring down the swelling. I can not eat without getting hurt. It takes about 4 hours after a meal as a spasmodic pain arises. so according to the doctor, it is best to surgically remove the diseased portion of my small intestine. they can not give higher dose of immunosuppressive when there is great danger that my kidneys take a beating
I'm sorry you are going through this especially after you've already had such a difficult health problem. I don't have any personal experience with this.
I am wondering if you mean colostomy or ileostomy, and if the doctor told you if this was a temporary measure or if it would be permanent.
Do you have an IBD gastroenterologist working with your liver transplant doctor? Have you seen a surgeon and is the surgeon specialized in this type of surgery in someone with Crohn's? I think the surgeon's experience with Crohn's is extremely important.
You wrote that you feel scared. Can you identify what you are specifically scared of?
Is it related to how the surgery will effect your liver transplant? or having a bag? or something else? If you are more specific, there may be someone here who can give you more support and information. Also, talking about your fears directly with your doctors can be helpful.
Will be thinking of you.
Best wishes.
I am wondering if you mean colostomy or ileostomy, and if the doctor told you if this was a temporary measure or if it would be permanent.
Do you have an IBD gastroenterologist working with your liver transplant doctor? Have you seen a surgeon and is the surgeon specialized in this type of surgery in someone with Crohn's? I think the surgeon's experience with Crohn's is extremely important.
You wrote that you feel scared. Can you identify what you are specifically scared of?
Is it related to how the surgery will effect your liver transplant? or having a bag? or something else? If you are more specific, there may be someone here who can give you more support and information. Also, talking about your fears directly with your doctors can be helpful.
Will be thinking of you.
Best wishes.
Amen