White flag-surgery Aug 28th

I have learned so very much here- and I followed this darn disease like it was my job. My daughter blew thru all the drug categories, endured 10 hospitalizations, multiple (near fatal) infections, swallowed every snake oil type concepts I threw at her, developed awful side effects from pred and others(spent a whole semester feeling like she was drunk on Tacro), swallowed a million pills, and waited with such high hopes for this last drug.
It is not to be - total proctocloectomy scheduled on her 21st birthday. Will follow with J Pouch in a 3 step procedure.
She is ok, I am ok. Almost relieved-she had 25 bm's on Tuesday- even after the 3 loading doses of Entyvio and on 30 mgs of Pred and Cortifoam. Really, no one can call that a life. If she gets sicker while waiting for this to potentially kick in, she won't have as successful a surgery. I can relate to the others who just want a life back.
We are in a good surgeon's hands, lots of experience at a top notch IBD teaching hospital. She took a deferment for law school (she graduated college this spring in only 3 years w/2 majors, Magna cum laude--see what people can do when they only study and don't eat or drink? lol) So, we are getting ready for a new chapter.
I'll still be around. I will probably be asking questions on the Ostomy board, and will still chime in here. Might as well use my vast exploration on UC to help someone else. Thanks in advance for your kind thoughts past and present.

Aww, I am sorry. I do think this will yield the best long-term future for your daughter even though I understand no one wants to go through surgery. In a short time, this will all be in the past and she will move on with her life and never miss dealing with this crap again

Happy birthday and best of luck in the upcoming weeks. I am sure i will see you around. I post on the ostomy board a lot too.

I think if I was in her shoes I would do the same thing. She still has her whole life in front of her. Time to get rid of that nasty colon and get on with it!

Prayers that all goes well. Please let us know how she is doing.

It really does sound like she is making the best possible decision, especially if she's planning on law school.

I know it seems scary, and it is a big deal but don't look at it as surrendering and raising a white flag. If anything it's making the decision to finally, hopefully, be done with all of this. The only regret I have is missing out on my mid 20s trying to fight and deal with this stupid disease as long as possible and like her, shoving every medicine and supplement Into my body and clinging to hope over every new fad diet while others my age have been advancing in their careers, relationships, lives, etc.

The surgeries can be rough, but unlike serious flares the healing and improvements really do come quickly. Best of luck.

I will echo om's sentiments - it sucks that this is still the outcome for too many !

good luck to you both - and congrats on her diligence in spite of everything -

So sorry that Rx meds failed your daughter, who sounds like an amazing trooper. It's wise that she is deferring law school to get her body into stronger condition beforehand. Wishing you both all the best and definitely update us when you can. Our young members who have opted for surgery seem to progress well and get their lives back on track fairly quickly. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)

Sorry for all your daughter has endured. Not a fun 21st birthday. This disease sucks. But I have to say I love my J pouch and I am so darn grateful for the procedure. If you have any questions I would be happy to try and answer them for you. All the best.

Your daughter's 21st birthday will be the first day of her wonderful new life.
Trust me, I know.

Thanks so much, these thoughtful words brought tears. She Is a trooper, apologized for messing up my schedule.Mom's and Dad's are chuckling, knowing that you are only as happy as your unhappiest child. I too am kinda thinking of it as a rebirth- just a new start. So much time has been spent on the disease, so much conversation, hospital hours, medical relays... and that's just my end! haha. She asked if I ever considered how much social interaction there was around food and drink- not just restaurants and booze- just meeting and talking and shopping and get togethers. When you don't participate out of fear, and cannot go to events that are not bathroom controlled, you miss out on a big chunk of life. Enough!
There is still fear and pain to come, so my exuberance is well controlled. Hugs.

Life is awesome post surgery!! I had it 13 years ago and it was the best health decision I have made thus far. I lead a very physically active life that would have been unattainable with UC. Your daughter currently has no quality of life and is not responding to meds, surgery will be life restoring.

Sue

Katmom, I'm wishing you and your daughter the best of luck with her surgery a week from today. In the meantime do your homework as you always do. The ostomy board at HW is good as is www.j-pouch.org. There are a number of people who have blogged through the surgery process and that would be good reading as well. One that comes to mind: ronnielee-fightingforit.blogspot.com/2012/10/surgery.html

I know 95% of people who undergo the surgery are satisfied and many wish they had done it much sooner...

Seems like the best thing in order for her to regain health and for her to move on with her life.

She's done amazingly in spite of being so sick....I can only imagine how she'll do once this is behind her.

Please let us know how she does when she has the surgery.

Huge hug to her for all she's been through and you for being such an amazing and supportive mom.

qxx

i will be thinking of your daughter on her surgery day!! i hope it goes on without a hitch! she has struggled so much and needs to get on with her life as a healthy adult. if i was still as sick as she is on all those meds, i would without a doubt have surgery, too.