Karim, I got your message, but unfortunately I cannot add you to the group; you'll have to go through the steps to join the yahoo osteonecrosis group yourself so that you can configure how you would...
Hi Paul, Woohoo! Congratulations! I've followed your story for some time and only log on occassionally now. This forum was helpful beyond words when my daughter was struck with UC...and like...
lucas, Have you tried to get an Rx for it? My daughter takes the ds formula 2-3 times a week (she has a jpouch now) to maintain good flora and our insurance pays for it. We get it through the Walmart...
Hi all, I frequent a couple other forums here at HealingWell but also co-moderate another support group and get weekly updates from various medical journals/sources...when I saw this, I thought I'd...
ickypoo, you're right..I did misunderstand, sorry. It's just that this disease is so complicated and people suffer so much...what's good for one may not be the right choice for another...it's very...
Ickypoo said "It is possible for many of us to avoid surgery and potent pharmaceuticals to achieve remission." Yes, that's true, but as long as you accept the risk that the "potent" medications do to...
Hi all, Knowing that it helps to hear from others who've been there, I thought I'd throw our story in the ring too. My daughter was dx'd at 19 in Aug 06, 4 months later, her colon was so diseased, it...
Hey Ben, First, although I know you're scared, I think you might be getting ahead of yourself with the talk of "C." I'm not a doctor or anything, so take all of this for what it's worth...but have...
Hey Jim, Have you tried a pain management physician. They might be more understanding of what you're going through. Sounds like you've been through the wringer....I hope you can find someone to...
Hi Christine - she was COMPLETELY healthy before taking prednisone...I could post another report by Klingenstein that states clearly that "IBD predisposes patients to corticosteroid induced...
I'd like to chime in here...as the mom of a 22 yo who has Osteonecrosis after only 4 months of Prednisone use....please don't think this can't happen to you. If you've been told you have bursitis, or...
Hi Fitmom, I don't come here often, but when I do, I focus in on people having joint pain. My daughter took pred for 4 months and now has osteonecrosis (ON) in 9 joints. Had we not stumble upon a...
rfc, Not sure if you're aware, your GI could write a script for the VSL #3 DS formula (double strenght) and possibly get your insurance to pay for it...some do, some don't. If you do get the DS...
I just wanted to chime in here and say that although I know how terrible the side effects like weight gain, moon face, insomnia, munchies etc etc etc can be after watch my daughter suffer through its...
Hi Vega19, Did a quick search...here's a link: http://www.mayoclinic.com/health/mrsa/DS00735 My daughter had a colectomy and her incision site became infected...they thought she had MRSA, thankfully...
For those wondering about VSL #3...it's available by prescription in the doctor writes the Rx for VSL #3 DS (much like getting regular motrin at the store, vsl #3 is the basic formula, but you need...
TamiJ and anyone else with joint pain, I don't want to sound like a broken record on this board about joint pain, but I'm here to raise awareness about the very condition that Judy cautioned you...
Hi Kelly, I absolutely applaud you for your continued efforts to spread information that will be helpful to those suffering with UC. I completely agree with the bacterial infection theory. I remember...
Not only did my daughter's doctor not mention probiotics, he said that if we wanted to try them, we were on our own because he was "a science man." Now, 3 years later, my daughter has a jpouch and...
Hi Happy Living :) We get it through the Wal-Mart pharmacy...it comes in a refrigerated box and must be refrigerated upon arrival. Please be aware that this is industrial strength Probiotics. After...
James, My daughter takes VSL #3 DS (available with an rx and some insurances pay for it). She has gone through the jpouch surgery and is doing great digestively. I'm a member on the jpouch.org group,...
happyliving, I know that docs all say it's not diet related...but what's your diet like? It didn't work for my daughter partly I believe, because she had pancolitis, but I have a couple of friends...
Thank you for your encouraging words. It has been incredibly difficult; you have no idea, but, we're learning to deal with this, she has a world sought after surgeon to care for her and I'm learning...
Hi Happy living, The antibiotics will likely make you feel better very quickly, but I can't tell you if the dose is high or low. And, your healthcare is in your hands. You do have a right to...
msobo, I'm glad you're persuing this with a specialist. You signature doesn't list Prednisone...were you ever on it? There is alot of misinformation out there about osteonecrosis (ON) and I believe...
Hi Andrew, The first thing I wonder is why are your joints hurting? It's important to find the underlying cause instead of just treating the symptoms. One thing I'd highly recommend is an MRI of your...
MSOBO, Hi, I'm glad to hear that you're seeing a joing specialist. You mentioned that you'd had a previous MRI done, was this for your hip pain? Please request an MRI of your hips especially, which...
Hi Joylu and others who refuse it, I say good for you for standing up for yourself! That said, I know there are some who absolutely need it, but if you don't, please try to find something else...try...
Hi again, That darn pred is aweful stuff. You don't have to wait until you come off of it for an MRI...if ON is there, it'll show up. If you don't have it, GREAT...at least then you'll have peace of...
Hi Vin, I don't post here often, I used to when my daughter suffered from UC before she went through the jpouch surgery. I check here periodically to see if people are posting about joint pain. I...
Hi Cher, The second surgery for my daughter was much easier than the first. After her takedown, she was going to the bathroom quite alot with only a couple of accidents, but those were while she was...
Hi Cher, I remember you :) (I think, could be another Cher, but probably not) I too came here alot when my daughter was first diagnosed...today is her 2nd jpouch anniversary <cheers from the...
Hey all, I pop in every now and again and noticed your post, so I thought I'd reply to give you some hope. My daughter suffered an acute attack of UC that resulted in a colectomy within 4 months of...
Hi Randy, I wanted to just give you something else to consider given your history with all the wonderful meds that IBD patients must take, especially prednisone. My daughter developed knee pain,...
Lori, I would also suggest an MRI to rule out anything mechanical with your joints. This is the most sensitive test and could help to really pinpoint anything that might be going on with your bones....
Hi Patty, I wanted to chime in here and suggest that an MRI might be a good idea since I see Prednisone on your signature. It would rule out any mechanical problems with your bones. The pain you're...
ggrateful, I wanted to write and suggest that you get in touch with an online support group for AVN. My daughter has it throughout her body and I understand how scared and devastating news like this...
Hi Akram, AWESOME for you! The sunrise...wasn't that beautiful! That's what I mean about appreciating the little things when you make the effort. I take such great pleasure when I heard birds...
I'm with Ides, an MRI would rule out anything mechanical or a problem with your bones. All the best, OSU fan...
Spluxa, You're welcome...I wish you all the best! If you have any other questions, feel free to contact me via email...click on my name to get the address....
Hi Spluxa, I thought I'd reply because my daughter takes vsl #3. Each dose of VSL#3 Unflavored contains 450 billion live probiotic bacteria and 2 capsules contain 225 billion live probiotic bacteria....
Hi Akram, I suffer from depression because my daughter is facing a lifelong chronic illness. I will tell you a couple of things that I've been doing to help myself. Some days are extremely hard, and...
Hi Matt, Something else for you to consider, anyone who has been on high dose steroids for longer than a month should also be award of the risk of Osteonecrosis. My daughter, also a UC patient, was...
Jean, I wanted to write, not to scare you, but to also give you something else to consider...so that you will be more informed. We were not and feel blindsided by the medical community from the...
Thanks Kitt! Yeah, it's been pretty hard to come to grips with, but I'm getting there. Making sure people understand that this risk exists somehow makes me feel a little better...a warning that I...
Hi Paul, I remember all too well what it's like to be where your at...well sort of. I was in a cot beside my daughter (19 at the time) went through what you're going through. She had one SBO (small...
Hi, it's been a while since I've posted, but I do check back every now and again to see if people are posting about joint pain, so I wanted to reply to this post just to give you all something else...
Thought I'd add my 2 cents in here...my daughter suffered from UC, but one vicious flare later, she's got a jpouch now and her surgeon prescribes VSL #3 DS. The DS formula is double strength formula...
Celey, I'm genuinely sorry to have caused you new anxiety, and it's entirely possible that this pain you're experiencing could be crohn's related. WE dismissed her joint pain to the disease too, but...