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Crohn's Disease
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Posted 9/20/2008 2:15 AM (GMT 0)
I got a call today from the pediatric surgeon.......They scheduled a consultation for the 29th and are willing to set up a payment plan for Sierra to have surgery.  I have no idea what the costs will be but I guess we will have to figure it out somehow, if we go that route.   

I need advice though, Her GI and the ER Dr's say she has to have surgery.  They say there is nothing else they can do since steroids are the only thing that keeps her at bay.  Her specialist says he doesn't want her to stay on steroids and she says they help her physical pain but mentally are torture.  Do we keep her on steroids or have surgery?  I will let you all know how the consultation goes.

Posted 9/20/2008 2:36 AM (GMT 0)
Could they give her pain killers instead for the physical pain. I know doctors are reluctant to give teens pain meds b/c of diversion and abuse... but your daughter is on the verge of surgery. Obviously she is in pain. I'd advocate for her to get a real pain killer, not a steroid.
Posted 9/20/2008 2:58 AM (GMT 0)
I know that I'm not in your shoes as a mom, but my gut instinct would be to fight the surgery option. I fully realize that in some situations it is truly the "ONLY" option, but I've also found doctors to vary greatly on their opinions of "last resorts". When I was diagnosed they TOLD me in the hospital that they were going to remove parts of my guts, and i refused. A month and a half of Remicade later and I was fine. I'm not saying Remicade is right for your daughter - I'm just throwing out the option that MAYBE there's another route? Have you gotten a second opinion? Have the docs made clear the possible long-term affects of resection surgery?

I'm NO fan of steroids, but in your daughter's situation, they might be the lesser of two evils... please get a second opinion, and even a third if you have to! Your girl only gets one set of guts, and I would hate for them to start chipping away at them already!
~Sending good thoughts your way~
Posted 9/20/2008 6:08 AM (GMT 0)
My bowel resection was the best thing I did. It's been a year and the disease is back, but no stricture. This time last year I couldn't walk up the hill in front of my home because of pain and fatigue, and now I can run up it. My 15 year old son had to have two surgeries within a month and he recovered so quickly, it definitely made me feel old! Surgery is scary, but so is the thought of long-term steroids on a young body. If she is feeling 'torture' from the meds now, does she really want to keep on that road? Is she going to need the surgery as an emergency in 6 months anyway? Would she rather do the surgery now hoping she will feel much better in a few weeks, or would she rather fight the pain and sickness until surgery is inevitable? If the disease comes back in a year, and the real sickness comes back in 2 years, will those 2 years of being able to live a much less painful and fatigued life be worth it? I understand how hard it is to decide on your child's health, surgery or not. My son's second surgery wasn't completely necessary, but there were definitely risks to not having it done. One risk was that he would end up having the same kind of first surgery again, a more invasive one. I left the final decision up to him. We gave him all the info, let him talk to the surgeon alone, gave him our opinions, and told him to let us know his decision when he was ready. He became a very mature young man and gave it alot of thought. I hope whatever you and your daughter decide works for her, and I wish her some relief however she gets it. I can't imagine the strength she must have within her to go through all this disease throws at us at her age. She must have a great role model in her mom!
Posted 9/20/2008 2:25 PM (GMT 0)
I know this has been a long road for you and your daughter. Surgery is a big step, but one that can offer a lot of relief once the recovery has taken place. But it is permanent. I had to have 2 resections due to active disease that would only respond to steroids, but at the time there weren't other meds available. My other resection was due to scar tissue. Do the doctors think that Remicade or Humira may help at all? If so, you might want to give them a chance. Simply because she is so young and chances are that down the road she will need more surgery, it is just the nature of CD. So we need to keep as much healthy bowel as possible. But, her quality of life is really what is at stake and what you need to consider. She can't live the way she has been. This isn't an easy thing to decide, I will be thinking of you both. (((hugs)))
Posted 9/20/2008 10:06 PM (GMT 0)
Hi Wishing your daughter all the best so glad you found some help with getting the money to getting it done. Only her Dr. knows the state of her intestines and pred. doesn't work forever. lol gail
Posted 9/20/2008 10:06 PM (GMT 0)
Hi Wishing your daughter all the best so glad you found some help with getting the money to getting it done. Only her Dr. knows the state of her intestines and pred. doesn't work forever. lol gail
Posted 9/20/2008 10:37 PM (GMT 0)
I don't know the full extent of your daughter's suffering but I understand your reluctance for surgery. As noted earler in this discussion, Dr's. do not always agree on treatment options. You might consider a second opinion. There are a number of people whose body becomes dependent on steroids. Have you considered enteral nutrition? You can google to find out more about it and ask your Dr about it. My daughter did not have a sever case of Crohns, so I can not compare her to your daughter's situation. I was about to cave in on the GI's recommened treatment option (prednisone and mp-6) when I decided to do a little more research. I presented my findings to the Dr and she was aware of the benefits of enteral nutrition - she just never had a patient who could stick to the plan. It is difficult for some patients to adhere to.
Posted 9/21/2008 12:39 AM (GMT 0)
I had a bowel resection a year ago due to obstructing and to hopefully get me off steroids. Well the obstructing was of cause cut out, but I am still unable to get off the steroids, although your daughter might be luckier than me and not be so dependent on them.
Good luck with your decision and please keep us posted.
Jo
Posted 9/22/2008 5:08 PM (GMT 0)
I work with a series of programs designed for people with pre-existing conditions, who cannot get or cannot afford regular insurance. I noticed your plight, and I think we may be able to help you.

Send me an email, and I will reply privately with a number you can call, or if you want to send me your number I will give you a call.

[email protected]
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