UC+ PSC / Liver transplanted awaiting Colectomy
Hi there- it’s the first time I post to this community. I’m grateful to have found it! And I wonder, is there anyone here like me?
I was diagnosed with UC in 1975; I was 3 years old. 9 years ago I had a liver transplant as a result of PSC, and I’m now awaiting a total colectomy in January to remove the large intestine. Later, I’m told they will go back in a remove the rectum.
So, my first question is, has anyone out there in been through this?
I am a very active yoga teacher and somatic therapist, and mother to a 12 year old autistic boy.
I’m scared and unsure of what to expect, and would LOVE to connect with any of you who might have been through this before.
Today I had a small bowl MRI to prepare and it has flattened me! (Why do they not say there is a bowel prep/ post effects, etc?)
Anyhow, I am enjoying reading your stories and hope to hear from someone who shared something in common with me.
👋
I have no experienced a total colectomy but I know others in the community have, so I think soon they will chime in. But I just wanted to pop in and offer you a hug and support. This diagnosis isn't easy, but we are stronger than we think. There are many in this community that have had procedures done and find the results afterwards to greatly improve their quality of life.
I'm sorry that the MRI gave you trouble. That definitely happened to me! It's the worst and I always get sick afterwards. The prep is so rough.
I hope you feel better soon. Big hugs to you.
Elizabeth (team member)
Hi. I have an ostomy. I had my colon removed and had my butt hole removed 2 years ago. I was having a lot of pain and problems with perianal disease so the ostomy has taken all that away and I am glad I went through it.
If you are doing yoga etc, I would suggest investing in a good hernia belt and look for ones designed by ostomy patients. The problem with an ostomy is that it is easy to get a hernia so if you are going to be active, then definitely get a hernia belt.
There are many articles on this site about living with an ostomy to check out.
Let us know how you get on
Vern - IBD Team Member
