Daughter is almost out of options

Good luck.

Thanks. Right now not eating much as she no sooner puts it in her mouth and she is in he bathroom.

I'm guessing since you've tried everything that means all types of meds (mesalamine, enemas, steroids, biologics) etc. I hope you find something that works! Have you tried alternatives like LDN? Maybe speak to a really good GI and see if he has any better options. These are long shots but people have also seen success with tacrolimus (prograf), if you want to talk to a qualified physician about that.

Hope all is the best, and I hope time does end up healing us all :)

i hope FT will help your daughter at least with c diff, it is so difficult when the kids are sick, i agree to have UC myself as long as none of my children will get it

Thanks for all your words. As far as GI's are concerned, we have been to our hospital (Morristown NJ, NYU, Mount Sinai, Cleveland Clinic). They all say the same thing. The only thing I find interesting is, you must remember this is a business, and in my opinion, if a doctor or hospital has something new, I don't think they are that fast to share although they all go to the same conferences. Case in point, although they were just together at a conference last week, one doctor did not know that John Hopkins was doing FT on children.
Even though she is 17.5 she is not eligible for FT at place that are doing it for Adults.
Katmom- yes we are still in the Pediatric word. I see from you sig. that our daughter's have similar drug experience, although we only got about a year from Remicade. No one has mentioned Tacrolimus.

Do you know there is T. Suis trial in progress at NYU? Talk to them if she is eligible.

You don't mention what drugs she has tried. Everything is not same for everyone. I would not go under the knife until she turns 18, because she will be eligible for many studies once she turns 18, including FT.

ks1905 said...

deltaforce said...

I would not go under the knife until she turns 18, because she will be eligible for many studies once she turns 18, including FT.

I'd prefer to go for surgery, many trials fail and some of the trials have placebos.... you could be "kicking the can down the road" At 18 I'd rather have certainty in my life so I could be free of meds and do what I wanted without having to worry about UC. That is just my opinion.

If the top IBD GIs in the country are recommending Surgery then it's probably advisable to consider it.

Yeah, if I was back at 18 having this and knowing what I know now. I would do surgery with no second thought. Ah, to have all those years back without worrying...........

I hope the FT helps your daughter out. I did the FT and it helped me out a great deal. It wasn't as bad as I thought it would be the first time I heard about it. Good luck to her.

I thank you all for your input and think it is important that other's chime in, isn't that why we are here. In the last 3 years we (my family) has learned alot about the illness as well as the medical profession. My daughter's case is not a black and white issue. Crohn's has not been ruled out. Lyme and it's associated issues may be at play. All of these factors make our decisions as parents even tougher. We must balance quality of life and over the last three years she has had many a hospital stay and many weeks at home bedridden. But she has also had great weeks and great family vacations, days shopping in the city, etc. Someone posted that 80% could be the new normal and I weigh that heavily. In my heart I feel the future is bright for immune diseases, especially ours. But I will not bet on a crap quality of life today for a hope 10 years from now. So we live in the day. We know we have an appointment Friday at a place that does do FT on pediatrics. We do know that FT has some success rate. We do know that success today does not mean forever remission. We know that surgery is not a walk in the park nor under our circumstances a guarantee. So I will keep focused on that Friday may bring hope, and that my daughter and all of you who suffer will find your hope.
Aside: She has tried, Remicade, Asacol, various enemas, Uceris, Gluten free diets. We had great results when she was hospitalized once for infected adinoids, tonsilitis and mono as well as double ear infections and had a 2 or 3 antibiotics (that gave us a 5 month remission but the doctors do not want to address that). We have not tried Humira and that is one the docs have recommended. Every supplement known to mankind and some that are only known to 7 people. Thanks, Brian

Ksl905- did you have the surgery and if it was your daughter instead of you would you want her to have it?
Thanks Brian

I go for my first surgery this Wednesday at NY Presbeterian Cornell, I am looking forward to surgery. I had a pre-op appointment a few weeks ago and they asked me if I was depressed (I'm sure that is a common question they ask for surgery), I said no, I am actually excited and could you get me in sooner.

I have a great surgeon and have been suffering through a flare for over a year and the last 2 months have been brutal and been basically bed ridden. My summer really sucked too. I've had UC for over 8 years and have had 3 really bad flares, it seems like I've lost 3 full Summers due to UC flares and that's not the way I want to live my life anymore. This Summer was the last straw, the colon has to go because it is controling my life too much.

Don't get me wrong because I had some really great years in remission from 6-mp and also Remicade were I could live a very happy life but for me it's time to move on without a colon. If I could go back in time and do it over I'd probably opt for surgery but the doctors have always been pretty confident that I've had a severe case of Pan-Colitis.

I don't know your daughter and what's important to her and how she handles things, so the only thing I'd recommend is meeting with at least 1 or 2 great surgeons and seeing how she reacts and feels about the surgeons and what she learns about surgery and what to expect. Meeting with a surgeon may reassure you of either decision you make.... I would just explore the option as much as possible but then again I don't trust or believe in all these whip worm and FT treatments for many reasons.

I have tried every medication for UC except for Mexotrexate and Cimzia. I have 2 hospital stays at Mount Sinai for Cyclosporine. I've tried it all and nothing works for me anymore, so if I could go back and do it over then I'd probably opt for surgery much sooner becuase my end result is still surgery.

My daughter is almost 15 and I cannot imagine making that kind of decision for her! I couldn't do it! I know it must be hard but you have to try every single thing.

I would just die if she ended up hating me for that surgery later in life and possibly blaming me.

I didn't even pierce her ears because they were not mine to pierce. I hate seeing babies with pierced ears because it is not a parents right to do that!

I am so weird, ignore me!

Nobody knows unless you deal with it though!
Good luck!