I have been in turmoil about whether to take my daughter off it. She has been on it since 2009, and I would say has been in a pretty solid remission for most of those 11 years. She is autistic...
Hi all, My daughter is one of those with fulminant colitis, and we have finally gotten her into a good solid remission. She is taking a lot of immunosupressives, however, more than I feel comfortable...
Best Wishes and speedy recovery to you. I will be thinking of you today, sending good healing energy your way. And in the days to come while you recover.:)...
BostonGirl- I'm sorry to hear about your flare. Is the SloFe ferrous sulfate? I've been told ferrous sulfate can be very irritating to the gi tract, which is the last thing UCer's need. You might...
Hi Wishingtohelp, I'm sorry your daughter is struggling with this ugly beast of a disease. We thought ours would have to get a colectomy, we were resigned to the surgery as of Dec '09, but then she...
Wishing tohelp, I noticed your daughter's past meds had remicade. when did she stop that, (also why) and has she been stable since going off the remicade and 6mp? We are in the process of getting our...
Killcolitis (love the name) My daughter took the Alinia (it's an anti-protozoal I believe) for the "parasite". She took it twice a day for 3 days, that's it. She has been on the Remicade for about a...
What do they want to prescribe the Flagyl for? I would ask for Alinia, it is much better tolerated than Flagyl and if you're trying to treat a bacterial overgrowth or infection, it's better for kids...
Hi, I think going gluten-free is a good idea. My daughter diagnosed UC in 2008 has gone gluten-free this past Dec. and it seems to be the single most effective thing in turning around her colitis....
Thank you Kabash and everyone else for your feedback. This helps, I will look for the window when best for her to take it. (I've started taking it too)...
Greetings to all you forum users! I have read before that some of you take psyllium in addition to other supplements, and I recall some have said you should avoid taking them at the same time with...
Is Imuran a 6MP? My daughter is also on both, with the remicade being 10mg/kg every six weeks. She has been in remission since 12/09, when we increased the Remi dose and intervals. I'm thinking of...
nadaluttiu70! Are you still out there? Wondering where you are with the LDN, haven't seen a posting since '09. Tune back in and let us know....
How did they find the kidney stones, a scan? I'm sorry you had to go through that pain & that you're so young. I hope the Remicade will be your wonder drug. Stay brave!!!...
I have also sought out the help of an integrated physician, who ran a few stool tests, one from entero labs (enterolab.com) and my daughter was gluten sensitive with a high score (highly sensitive)...
Hi Fruitgirl, thank you for sharing your experience. The Remicade reallly isn't working, at least its barely working and I don't see it being her long-term med. However, they upped her dosage and it...
Has anyone had a Metametrix lab GI profile done? It's basically a stool test and they use DNA probes which I guess gives more info, maybe too much. Anyway my daughter had one and it showed some...
Thank you Js mom. my email is [email protected], if you want to continue the conversation off the forum. All your information is super helpful :blush:...
I sense your passion for your son, it is a blessing to be sure, for him and his parents. Is he ambulatory? My girl's most recent colonoscopy (this October) was also awful, we meet with surgery this...
Thank you J's Mom. It helps to know that one with so many challenges can adjust to this. My girl is really hyper and active and has behavioral issues, so the unknown is just too big as to how she'll...
By the way, thank you all for your comments!...
We are looking at the BCIR procedure as a possible option, no stoma or appliance to mess with, but only a few places in the country that do the surgery....
Her surgeons don't want to do a pull through they think it would be medically unsafe as she is so autistic and not always one to get to the bathroom when she has to go, she might poo in her sleep and...
Hi, this might be the wrong forum. I am wondering if anyone out there knows of someone who is developmentally disabled, basically mentally retarded, and had to have an ileostomy? My daughter has...
I have noticed that my daughter gets both fatigue and insomnia after Remi, but it goes away in a few days. Is there something you can take for insomnia? (benadryl, tylenol p.m. or even pres. ambien?)...
wonderful news! keep on celebrating!!!...
We are all hoping the Remicade works for him. When my daughter who is now 14 had her first infusion, she too was very sick and her colon quite diseased (& hospitalized in which time they first tried...
I too like many posters never get the flu shots. This is the first year I got a seasonal flu shot when my. pcp talked me into it. My daugher who has the UC did get the H1N1 vaccine & flu vaccine, my...
Mickey 138- I have read the Penn state study with great interest. Did you stop all other meds or were you on some while taking the LDN. What do you take now? I'm so glad it has been positive for you....
Has anyone here tried using low-dose naltrexone (ldn) for UC? It's been studies with Chrohn's and only there have been a few anecdotes regarding UC. It supposedly does some upregulating with the...
Has anyone had success with the specific carbohydrate diet?...
It is hard and I cry alot these days, but coming to this forum gives me so much info & strength. thanks for your thoughts & feedback. congrats on your remission, i hope you stay in it forever...
Hi, I know that sounds like a pretty moronic question, b/c UC is so variable. This website forum is a godsend, it seems to have the most activity and commentaries on this disease, which helps so...
Hi Blue5- This is my first post, I am going to post one about my daughter (she is 14 and developmentally disabled), who is the one with ulcerative colitis, but I saw yours and thought I'd comment....
Sad girl- Hi, My daughter gets anemic too and doesn't tolerate many iron supplements. The ferrous sulfate which her dr. prescribes, is way too disruptive to her system, especially during a flare. The...