Severe UC

Well she pretty much has the option of going with a permanent Ileo or a Jpouch. She will most likely have the option of a 2 step or a 3 step Jpouch procedure if she opts for it. I think a surgeon can best explain the pro's and cons of the procedure.

I don't think you have much to worry about, right now she's not living, just surviving. With either an Ileo or Jpouch she will be able to live a perfectly normal life, albeit some changes but if there's one thing I've learned through it all the human being is amazing at coping and adapting to whatever comes your way and in no time for instance. In time wearing the bag was part of me and you realize it was either this or pretty much the grave so you have a different perspective of it and life.

The day I woke up, even in a little pain and tubes left and right as I lay in the bed, drugged up on pain meds there was this serious relief of having that diseased colon gone and I felt so much better even right out of the surgery, it was pretty amazing.

You can read up more on the Ostomies forum here or on Jpouch.org.

Post Edited (Virdent) : 1/19/2016 8:44:15 PM (GMT-7)

lots of folks here have had colostomy, more have had a surgical consult just in case. even more folks on ostomies forum.

but has everything been tried? did she try biologics like Remicade? exactly what meds has she had?

what exactly are levels of current symptoms? is surgery urgent or just an option?

TY notsosicklygirl, I will go to your link and read about your surgery.

I'm mot clear if the signature is yours or you daughter's.

If you do not know what Remicade is, then everything has not been tried. Read up on the biologic drugs. I personally would try several biologics before having surgery.

DBwithUC, the signature is mine. This is my thread. I am just asking about my daughter. Are you a doctor? She has been in the hospital for 2 months over a 2 month period. I think the hospital and her entire team of doctors would have tried what you call Biologics if they thought it was what she needed.

If your doctors have not mentioned biologics and she has been hospitalized twice in the past few months and in condition severe enough to warrant a colectomy I would want to know why
make sure they are experts in dealing with Inflammatory bowel disease. if you do opt for surgery make sure the colorectal surgeon is one who has done many surgeries like this and has good outcomes.

Make sure to do reserach for yourself and your daughter to be educated about ulcerative colitis. mayoclinic has great information on their site in easy to understand language here is the link
just copy and paste it
http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/definition/con-20043763

University of Michigan has some great videos on their site and on youtube called IBD School
check those videos out too

I'm in my third flare in the last year, hospitalized twice. I met with the surgeon based on my GI's advice to have that as an option if the biologics don't work. I'm not quite ready for surgery just yet. I feel like I need to try all of the meds, if I can, first. I've been on Humira for about a year and half and received another loading dose after my last severe flare. I had a blood test that determined I was producing antibodies to the Humira so they added azathioprine. I finally came off of the prednisone and Uceris. I was feeling normal for about 3 months and then out of the blue, I'm in another flare which started last week. I, too, have involvement of the entire colon (pancolitis). I'm about to try Entyvio, which is an infusion. I'm waiting on prior authorization (again) from my insurance to restart the Uceris, although I'm not convinced it was doing any good. I'm really hoping for a true remission this time. One of the bad side effects of these biologic/immunosuppressants is the infections. I ended up hospitalized extremely ill with c-diff this year as well due to being on a round of antibiotics for pneumonia.



Diagnosed May 2014

Asacol 2400 mg twice daily
Humira injection every 2 weeks
Azathioprine 2 daily
Uceris 9 mg daily (waiting to restart)
VSL #3 2 daily
Florastor 1 twice daily
multivitamin daily
Ferrous Gluconate 1 daily

"Try posting this as a new topic as this is someone else's thread"


i'm pretty sure this thread is where TOC wanted it -

Noelhelp

Definitely try the Remicade route - I have just come out of hospital and am about to have my third infusion. It is a concern that they haven't offered your daughter this option and I would question it strongly. It is definitely worth a try before surgery - otherwise second opinion needed.

Good luck

Catherine

Generally, someone posts a question and than several people will respond. The poster of the question can ask questions or comment on the responses that have been recieved.

My response to the thread was to explain the different medications that I have failed and that my GI is willing to try additional medications and that I'm not quite ready for surgery yet. That's why I didn't start a new thread. I was responding to the original post. However, I've only posted a couple of times, so I'm not really good at this.