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White flag-surgery Aug 28th

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Ulcerative Colitis
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Posted 8/22/2014 1:11 AM (GMT 0)
Katmom

Wishing you and your daughter the best.  Getting off all these drugs and away from all the sickness will surely be welcome.  Being so young, she has such a very good chance of a full recovery and a full and happy life with the J pouch.  You will be in my thoughts and prayers. 

Posted 8/22/2014 2:57 AM (GMT 0)
I wish you both the best!! She has certainly been through a lot. I started grad school about nine months after my takedown and have felt super healthy and happy. I go to school full time, work part time, and am able to socialize, exercise, etc... pretty much everything! It was a hard road but ultimately a blessing for me. I hope it will be for your daughter, too.
Posted 8/22/2014 3:04 AM (GMT 0)
Katmom, wishing you and your daughter a smooth surgery, quick recovery and hasty return to having her (and your) life back!
Posted 8/22/2014 3:06 AM (GMT 0)
I'll be thinking of you and your daughter next week. I'd wave the white flag, too. It's time to live.
Posted 8/22/2014 12:21 PM (GMT 0)
Best wishes to your daughter. I get a little envious of people who get surgery lol But I'm in a good place so I can't complain. Soon she will be too :) Keep us updated okay?
Posted 8/22/2014 6:47 PM (GMT 0)
Sending good wishes to both of you. Absolutely a rebirth of health for her! You've both endured so much, and she's fortunate to have such an amazing Mom. Keep us posted on how she is doing. Next you'll be telling us that she's become an attorney -- onward and upward! :-)   
Posted 8/22/2014 7:12 PM (GMT 0)
Happy for your daughter. Though it sucks that the disease has come to this, but she sounds like a strong person having gone through all she's been through. Glad your daughter will be done with this disease after the surgery.
Posted 8/23/2014 12:25 AM (GMT 0)
I didnt truly know how much of life was slipping me by until i took the leap. Surgery truly gave me back my life and I have not regretted it even one microsecond-- this was after cancelling once and almost cancelling a second time. Your daughter will be back in top form by next spring, and feeling a lot better period with that (poor) colon gone. Best wishes.
Posted 8/23/2014 4:28 PM (GMT 0)
I am wishing the very best. I have a daughter with a genetic disorder and as a mother it's heart breaking when you have to watch your child struggle with a disease or disorder.

From most that have had surgery I've heard they are very thankful to have their life back. It is the only cure.

I personally have been on drugs for over 20 years and I feel like I'm taking poison everyday as I take my 40 mg of prednisone. My doctor has agreed if Entyvio fails surgery is the next option. My family is horrified, but I am hopeful. I'm sick of the drugs, being anemic/exhausted, having high blood sugar, and having so much of my day consumed by the inconveniences of this disease. If I had my choice I would skip Entyvio and go right for surgery.
Posted 8/23/2014 4:35 PM (GMT 0)

bishop5 said...
If I had my choice I would skip Entyvio and go right for surgery.

It should always be your choice and nobody else's.
Posted 8/24/2014 6:21 AM (GMT 0)
Just want to add my best wishes - putting the past struggles behind you and beginning anew with freedom.

I also want to our a big "thank you" for your many informative and encouraging posts, sharing your experiences and opinions, along the way to support those of us still trying to manage symptoms and navigate this complex terrain of medications & side effects.

Please stay in touch, and let us know how she does. Hoping for brighter days ahead - and all that she has endured gets smaller in the rear view mirror.
Posted 8/25/2014 7:03 AM (GMT 0)
KATMOM!!!

I am sorry to say but I am PUMPED for your daughter!!
You know that my one and only year with this disease was hell - I have NO idea how your daughter managed as long as she has.

You guys will be laughing and giggling and she will be SO SO SO happy. Within a few days I felt better than I had in a year. And I was laying in a hospital bed and crying when they made me stand up! But even those first few walks across the room, to the door, down the hall (the worst part of surgery is walking after... and sneezing, dont get me started on sneezing...) EVEN those walks I couldnt help but smile. Because I didnt feel UC. There was NO uc pain.
Its amazing.
Please please please message me if you want/need. Or if your daughter wants/needs.
I am super open about everything. I have pictures of various recovery things. Video. Journal entries. Lol - I documented everything so I could be a good resource :)

GOOD LUCK and I am sooooo happy for your daughter to get back to her life!! :)
Posted 8/25/2014 11:10 AM (GMT 0)
Katmom, I wish your daughter a speedy recovery!
It seems as though UC makes these kids more determined to succeed.

Thank you for sharing your knowledge .
Posted 8/25/2014 4:07 PM (GMT 0)

embersglow1 said...
l (the worst part of surgery is walking after... and sneezing, dont get me started on sneezing...)

What.... they forgot to tell you too about holding a pillow over your stomach when either you sneeze or cough? Even getting up from the bed it sometimes helps to hold a pillow over your stomach. Finally after my 3rd surgery somebody recommended using a pillow. Sneezing and coughing freaking hurt but it's only temporary.
Posted 8/26/2014 5:27 AM (GMT 0)
Lol - sneezing, coughing, getting up -- all done with pillow. First nurse taught me that, bless is heart.

but this is 7 weeks out and sneezing is the DEVIL! lol
Posted 8/26/2014 1:43 PM (GMT 0)
Thanks again, friends. I really mean it.
Today is day 1 of 2, clear liquids. Hard when you'd eat your hand due to Pred. Surgery at 12:30 CST Thursday. I'm not thrilled about being there over a holiday weekend, having previously been thrown to 3rd stringers over many past holidays. Think this is hospital stay #12, so feeling pro. Will be in good mom form, not too bossy, just diligent.
She has not been any better, so the decision seems easier. The blood is way down( Entyvio?). Same crazy urgency and frequency. The pain is getting to her. Joint and muscle pain is mainly the Pred, I think. They will still have to taper, and send her home on 10mgs. Wishing I could throw it in the toilet, lol.
I'll probably post Fri to let you know how she fared thru surgery. Expect it to be a tough day.
P.s. embers..I follow you on Twitter...you have already helped a ton!
Posted 8/26/2014 2:33 PM (GMT 0)
Prayers to all of you and I'm wishing her a very speedy recovery.
Posted 8/26/2014 5:07 PM (GMT 0)

Katmom said...

Joint and muscle pain is mainly the Pred, I think. They will still have to taper, and send her home on 10mgs. Wishing I could throw it in the toilet, lol.

Katmom,

I was on between 60mgs and 30mgs for 4 months before my first surgery. While I was in the hospital they tapered me down to 10mgs for my release. It wasn't much of an issue for me until I finally tapered to 0 mgs over 2 months then I experienced withdrawal. My GI put me on Sulfasalazine and that really helped with the joint pain and arthritis but it takes time.
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