It is terrible to have to deal with this, and probably even worse to have to watch someone you love go through it, especially at a young age... On the positive side, surgery can give a life free of all the worries we are used to living with UC. I had jpouch surgery and I am thankful I went that route. I didn't hate living with the ileo, and it has some advantages, but I was of the mind that I didn't want to accept having to be insured to get supplies for the rest of my life. It's not really a huge issue, and we all need supplies for one thing or another, whether it's toilet paper, or tampons, but it's just one more thing I'd feel made me dependent on doctors and insurance.
Since jpouch surgery, I haven't been tot he doctor at all. I live so differently, it's actually kind of crazy. I went from taking tons of drugs, tests, produces and seeing the doctor at least monthly, to not even caring whether I am insured. I am, but I never go to the doctor. That is the positive. The negative is, yes, it's a lot of steps and it's not fun to get through. The other negative is going more... on the positive side, at 11, she has the advantage of being younger, healing faster, and having a better result. Seems like younger folks go less overall. I had surgery in my 30s. I could have kept fighting with drugs, but my UC was severe and I felt like holding on would have only brought me a few years, even if it brought me 20 years, I didn't want to be 50 or 60 and need surgery, plus, I'd have to maintain top tier insurance all that time, and see doctors, pump myself with drugs and prednisone. I had hit the end of my rope after gaining tons of weight and getting face full of acne from pred. I wasn't myself...
my story is in the link in my signature "from sickly to UC free".
Also, look up this user: https://www.healingwell.com/community/profile.aspx?f=33&m=2250640&p=75159
. Her daughter had surgery years ago at Children's Hospital in LA i believe. I had surgery at Cedars. Get in touch if I can help in any way. I am so sorry you're going through this. My heart breaks for all the parents faced with this - and for the other sufferers. it's a really difficult fork that no one wants to be at.
Have you done all the recommended testing? stool tests? upper endo? met surgeons? Has she tried xeljanz or cyclosporine?
Moderator: UCCurrently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
Post Edited (notsosicklygirl) : 1/4/2019 8:48:03 PM (GMT-7)