Life expectancy on Remicade.

I don't think surgery should be the first option at all. Especially for children. It can lead to short gut syndrome. For females, having part of your intestines removed decreases your chances of getting pregnant to 31% because it misaligns the fallopian tubes. If you end up with a colostomy, there are constant skin break down issues, comfort issues, image problems. You have to worry about your intestines herniating through the stoma, the bags bursting in the bed, etc. The doctors I see won't let any of their patients have the surgery until after child bearing years. Alot of people don't realize that stress is the main way to cause an upset. When I say stress I'm not just talking about bills, I'm also talking about wedding plans and having a baby... Anything that requires any adrenaline or increased heart rate or worry affects your gut. Your gut responds to a situation before your mind does. My husband is in Afghanistan right now and he comes home for 2 weeks this month and I'm so overly excited about it my stomach has caused me terrible pain for days..but I'm smiling My doctor calls it Spasmodic IBS. My intestines spasm all the time and it hurts. I've tried Levsin and Donatol, neither really helped. So, i just used my mind over matter theory and smile!

Also, jpouch surgery in women decreases fertility by approx 30% not to 31%.
Short gut syndrome is a worry of mine but it is not a risk of UC. The risk is if it is actually CD and I understand that but it's a significantly lower risk than if they start cutting in the small bowel.
Thanks for your input though, it's no easy choice in a child and surgery obviously has it's risks but then the point of this thread is so does remi (again especially in a child. We've consulted 4 pediatric GIs and most admit this is the case).

allswell,

Jack was put on on Remi during his first hospitalization because nothing would stop his severe flare. He was in really rough shape and the Remi stabilized him immediately. However, the very next day he was diagnosed with cdiff.....so now, he had UC and Cdiff to deal with. From that point on for about a year, he battled both diseases with no remission in sight. He missed over 100 days of school (kindergarten) while having 20 bloody, mucous, loose, bms per day. During that year (2011), the Remi would help a bit with the inflammation, but we could never get the cdiff in control with abx. It got so bad that he started to get rectal prolapse and we started to talk about surgery options with his GI. At that point, we discovered on our own that FT was an option before surgery.

We did the FT via scope 4 months ago....and the very next day, my son said, "I feel like I have a new tummy". His stool formed up and the blood/mucous stopped within a couple days. He has been in remission since. We followed up at home with daily enema FTs for a week. That said, one month after his initial FT, he picked up strep throat and we put him on abx. The first round didn't kick the infection, so he needed a second round. Then, a few weeks later, the strep came back and we needed to give him another round of abx. Yes 3x....This was a worse case scenario for us as we feared his new gut flora would be disrupted. I should add, we now have non-abx options to kick strep (wild oil of oregano or colodial spray). Anyway, we continued to do at home FT enemas on a weekly basis feeling it will help fill in any "voids" that may have been created from the abx. Jack is still doing great without any issues. We will go to a monthly FT protocol soon and have him completed later this year.

In our case, there is NO doubt that FT put my son into remission. I think Remi has played a part as well. For many, they use prednisone to stabilze the inflammation during an FT protocol before weaning it off. This is our plan for the Remi. I think Remi has a place....don't think long term maintenance use is it however. Only time will tell, for now, we count our blessings and thank God every day.

Allswell,

Rectal prolapse is when the rectal muscles are so strained that they start to lose their function and ability to hold the rectum in place.....This is when the rectal stump begins to come out of you while you strain. Very scary and definitely a sign to take drastic measures at that point.

Jack had UC symptoms for almost two months while his GI at the time kept telling us to "give it time". Meanwhile, he deteriated to the point of needing emergency hospitalization. During the next 3 weeks in the hospital he was given blood transfusions, a lot of morphine, a lot of steroids, a lot of ...you get the drift. He was tested for cdiff during this time and was always negative. Finally, we decided to start Remicade and within hours, he started feeling better. The GIs figured he was good to go and released us. The very next day however, symptoms returned...but a bit different. Smell, mucous, was different. We did a stool test and was positive for cdiff.

For the next year, he battled both UC and Cdiff, but we really never knew which one was causing all the problems. Every time he would get his Remi infusion, he would feel great and improve symtoms, but never all the way as the cdiff kept him extremely ill. Jack had 3 scopes last year, the first two showed signs of UC, the 3rd was full blow pseudo colitis from the cdiff. Since his first FT, his symptoms vanished. So, like you, we asked...could this be it? Was it cdiff colitis all along and they were just missing the cdiff early on. Well, we thought the only logical way to find that out was to put off his Remi a while longer. So, we pushed his Remi out to 9 weeks and he started to show UC symptoms. We did his Remi right away and he felt like a million bucks. His labs showed some inflammation as well. Since then, we went back onto a 7 week schedule and are continuing to do at home FT enemas.

Where we're at now is using the FTs as adjunctive therapy. We know he is doing great and in total remission. So, later this year we'll start pulling back the Remi again and hopefully not see any UC symptoms. We may play it safe and get him going on a 5asa prior to that to ensure he is getting something while we wean the Remi. Our ultimate goal is no meds...but we'll take whatever we can get out of this.

anytime you decrease the amount of intestines that you have in a females body it allows the fallopian tubes to become misaligned. once this happens the eggs have a very decreased chance of making the cross over between the ovary to the fallopian tube. therefore, decrease fertility chances. by all means, let me change the word "allow" to the phrase "not considered a candidate for" unless deemed medically necessary. common sense is a God send, scientific fact and medical proof is just icing on the cake. if your abdominal cavity if full of organs and the it's not then obviously there is room for things to move around. a woman who wants so much to have another child but also wants to be healed knows this. not just from one doctor or 3, but from a medical university with over 13 doctors working on each persons case.

which is why i said in my very first post to do your own research:)

I wonder if the potential risk to a child who was carried while the mother used Remicade is worse than the genetic predisposition of the child (or their children) developing UC? I have to say, a chance at developing UC is bad enough in my opinion. I hope there is no unknown longterm risk to people on the medication or to unborn babies who's mothers needed it to stay flare free during pregnancy. Either way, there is an increased chance of developing the dreaded UC if either parent has it, those odds are not so reassuring in themselves. I am thankful I've never been dead-set on having children. I feel for people who choose to make these difficult decisions.

Lonie, I think that is the most logical way to use Remi....good for you.

Allswell, Good luck and keep us posted as you move forward.

This thread: The LONG TERM effects of Remi are unknown. So, this discussion is really beat to death at this point and very subjective.