Is online 2nd opinion worth trying; surgery scheduled in December

My daughter finally weaned off Prednisone again (she has been on it 12 of the last 17 months). Last time she weaned off she was able to stay off for 5 months. This time she was hit hard with symptoms after 1 month. She had to go back on Prednisone yesterday. Her doctor has tried increasing Remicade to 10mg/kg, increasing Imuran to 175mg, nightly steroid enemas every night for the past 5 months. Her doctor has nothing else to try and she is scheduled for a sigmoidoscopy in 3 weeks (probably doesn't need since she started flaring again), and if he finds bad inflammation then he wants her to go ahead with the scheduled surgery (1st of 3). It is so hard to accept, esp. since she feels relatively good and functions well when on Prednisone, but I know it is bad for her.

I am in the process of trying to do an online 2nd opinion at a major clinic. I don't know if I will be able to get all her records fast enough to hear back before it's too late, and I also don't know if there is anything else really to try since she has such a tough case of UC. She trusts her GI doc, who is at a major teaching institution and does not want to travel out of state for another opinion. He said there are no UC clinical trials for her right now. Do you think there is anything else another GI might try or am I wasting my time and money?

(I have had no luck getting a GI to assist with FT. The GI trying to do a clinical trial here said she would not be eligible due to being on Remicade.) I do not want to do it without a GI supervising, since she is on 3 immunosuppressents.)

I suppose it's worth trying, as long as you don't cancel surgery, or postpone it in the hopes that the new GI will have some miraculous trick up their sleeve! If your daughter doesn't want to travel for care, or switch GI's though, is it worth it to her? I think that's the question- who wants this 2nd opinion, you or her?

I had surgery 10 years ago, best decision of my life.

The drugs your daughter is on are horrible; especially long term prednisone use. I think you will be surprised how well she does post surgery. She will get her life back and get off drugs. If you feel better about a 2nd opinion, then go for it. I'm not sure what state you are in but you should be able to get an appt. before the surgery date.

Sue

Before surgery, why not try all the magic powders and voodoo stuff from Homeopathics (check my signature)...

I had failed after 3 rounds of prednisone, couldn't stomach imuran, doc was about to put me on 6-mp and then I decided to go 100% the other way. Have been great, max 3 (usually 2 or 1) bowels a day, very little blood days.

Check my signature.

I have added :

1. Purity Plus SuperBlueBerry formula (AM, mixed with North Coast Naturals protein powder -- the absolute best brand, look it up)
2. NOW Inulin and FOS
3. Down to 5 Asacols for month and a half now with no issues.

     If she is on 3 immunosuppressants, I think she is on 2 too many.  My GI doctor took me off the 6MP two weeks prior to starting Remicade.  In his opinion, it is far too risky.

     At this stage, even though it is hard to face, I think surgery is her best option.

     J-pouch wasn't an option for me.  I was 63 at the time of my operation and considered too high a risk by my surgeon because of other health issues and being prednisone dependent for two years prior.  I suffered with UP for twelve years and ran the gamut of meds.  I have a "bag", but believe me, life is sooooo much better now.  I can make plans, go places and do things that I was unable to do before surgery.

     The best to your daughter.  I will keep her in my prayers.

sweetpeasmom,

Hi, my 16 year daughter is just 6 months post-op from a 2-step. I can not tell you how happy we both our with the decision to have the surgery. I was so against it first. We were at the end of the medicines also. Double dose of remicade every 4 weeks. She has her life back now. Out being a normal teenage girl again. I have no regrets with the decision.

I have a similar story to your daughter. Lots of prednisone, Remicade 10mg/kg since Jan. I have had no luck with any meds. I agree, she is on too much, and I think that the surgery is a good choice for her. Personally, I have tried so many things - including fecal transplant - and nothing has worked. I am scheduled for my 1st surgery in two weeks.

Good luck.

I got uc when I was 21, and missed all the years I was supposed to be out having fun. it would be horrible for her to miss that too, she's already missed so much! Pred is so dangerous and the effects of it long term are horrible, not to mention the other dangerous drugs. Surgery is scary, but it gives you your life back and the uc is gone!
Good luck to both of you

Thanks you all for your thoughtful comments. Seeing how quickly she can turn from feeling really good to having debilitating pain, explosive D, etc. makes it more clear to us that she will need surgery. I was just hoping she could hang on to her colon long enough for a treatment that would work for her.

I am so amazed at how much support is given and how much experience and knowledge is shared on this site. Though I have slept about an hour less every night since finding this site, I have learned so much and felt less isolated by reading all your posts. Thanks again.

To Hindsight is 20-20, I am sorry things have been so difficult for you and hope you find someone who can help your situation.

Hindsight, if your pouch is so terrible, why not opt for a permanent ostomy?

Dr. Heppel at the Mayo clinic (colorectal surgeon) tried to dissuade me from surgery, and I don't think he is mentally ill

He told me that 70% or so of patients have a good outcome, 30 percent have ongoing problems of some kind or other, with a third of those (10% of the total) needing to revert to a permanent ileostomy. I think it's important to go into surgery with realistic expectations. If you have no other options to try and you are still having uncontrolled symptoms, then you go for surgery, pretty straight forward I think.