thank you blueglass..it's been a while since I logged onto this site. I usually log on when things aren't going well for us..but for once I was able to log on with good news. ; ) everyone on this...
I do believe that surgery saved my daughters life and because of it we are in a really good place right now. My daughter was dx with UC at age 3, she suffered 4 months and ultimately needed an...
Hello, My daughter (she's only 5) had her collectomy at age 3. At the time she was diagnosed with UC but after her collectomy her pathology report came back inconclusive, and she was ultimately dx...
I couldn't agree with you more. I've met some really rude people, one woman once told me at a Crohn's and Colitis walk that having a colectomy was giving up, and she wasn't the type of person that...
My daughter has had several roommates. In the beginning when my daughter was first dx with UC I kind of felt bad for the roommates since my daughter was in severe pain all day and night. She was only...
Thank you Torranceboy, unfortunately I highly doubt my daughter will ever have the option of being reconnected. She has severe Crohn's disease. They've already removed 5 inches of her small intestine...
Hello, My daughter has been having issues with her stoma prolapsing since Thanksgiving. It seems that every 2 or 3 weeks she has another prolapse, usually we've been really lucky and it goes back in...
My daughter (she's only 5) but has CD and an ileostomy. She was med free for a year and a half until she started showing signs again. It started last March with white spots on her stoma and liquid...
Killcolitis- (I just realized by your email address who you were)...it sounds like you are closer to your decision. I know how hard this is for you. I do wish we lived closer to each other. You know...
Hi, My daughter had the test done twice, the first time was before her collectomy and it came back positive for UC. but then after her collectomy she started showing signs of "crohns"..bumps on her...
thanks again for all of your responses. I am thinking that it's the food because sometimes during the day it'll be thick as can be and then the next time I empty it it's like water. It's been over...
Thanks, Crohnie CJ - that's how my daughter's output was when she was on a high dose of steroids, thick like applesauce and sometimes like batter, and that's what her GI said was healthy..but now...
My daughter has Crohn's and an ileostomy. She has been in a pretty bad flare since September, actually needed a resection of about 6 inches from her ileum. Right after surgery when she was on a high...
Thanks for all of the suggestions. I actually spoke to a woman from JFK (where we are flying out of) she said all I would need was a doctors note stating what her medical condition was. She also said...
Hello, My family is going to Disney at the end of April, this will be our first time flying since my daughters surgery (she has an ileosotmy). Does anyone know if we will need certain documentation...
73monte- Yes her colon was removed but she doesn't have a jpouch, and to be honest I doubt she will ever have a chance for one since her crohn's is so severe. I wouldn't want to take that risk. Her...
fyi..she was on flagyl before her resection but she couldn't tolerate it well. It caused vomiting and seemed to make her symptoms much worse. Her doc. isn't sure it's worth the risk right now to try...
We just received good news..(well good to us) the level's of aza. in her bloodstream were very low. That was music to our ears since I would rater stick with aza. instead of trying the biologics...
Thank you for suggestions, as for TPN she has not been on it this time around but was on it two years ago before her collectomy. Of course back then it didn't work either, and ultimately she had to...
Hello, I'm looking for some opinions from people who have been there done that... My daughter is 5 years old and has been in a flare since August. She had a total collectomy 2 years ago due to UC (at...
My daughter was very sick before her collectomy and spent over two months in the hospital in and out every few weeks. After the surgery when all of the bills started rolling in it was over 150k. It...
My daughter started Aza. two weeks ago and we were told to avoid all live vaccines. I agree with Johnny Five about avoiding the nasal spray. that is what our GI told us when we asked about the flu...
Thank you clonehead, yes we are back in..ugh I feel like this is our second home sometimes. it's so unfair to my daughter. we're back in due to an obstruction..we are praying it's not crohns related...
toddlerwithcrohns I know exactly how you are feeling. My little girl was dx at age 3 with severe UC that resulted in a colectomy with an end ileostomy. We tried meds, diet change everything but the...
flchurchlady, My daughter is on Azathioprine and Prednisolone right now, although we are hoping to wean her off of the Pred. in the next month or so. We have to make sure the Aza. is working before...
My daughter was first diagnosed two years ago with Inderterminate Colitis favoring Crohns. They said that usually in small children (she was only 3) the disease presents itself as Ulcerative Colitis...
Thank you all for your kind thoughts.. Roni - My daughter also has an ileostomy, so besides the normal things ostomates have to stay away from high fiber foods, seeds, raw vegetables..etc we haven't...
After telling a school nurse (at a Catholic school that I was thinking about sending my daughter to for Pre-k) that my daughter had an ileostomy she tells me.."oh no she can't come to this school,...
Just wanted to update everyone again..my daughter just doesn't have any luck..could you believe that only a few days after surgery the crohns symptoms have started to come back. White spots on her...
My daughter is supposed to start Imuran on Thursday. I am hoping she is not allergic to it or doesn't have any serious side effects. She just came out of surgery last week and is still healing from...
Hello All, I just wanted to update everyone on my daughters condition, She had her resection last Wednesday. They removed the last 5" of her Ileum and gave her a new stoma. It looks so much better...
I just wanted to update everyone on my daughters condition, She had her resection yesterday. They removed the last 5" and gave her a new stoma. It looks so much better and she's finally able to walk...
thank you so much for your kind thoughts....
thanks for all of your replies. My daughter was originally dx with UC two years ago at the age of 3. Within 4 months the diseased progressed so much that no medication was working. We tried steroids,...
Hello, I don't really have a question, I really was looking to hear from other ostomates that have Crohns and have had to had a resection of their small bowel after having the collectomy. My daughter...
My daughter had her ostomy surgery a little over a year ago. She always had discharge and some blood coming from her bottom whenever she went to the bathroom. Her GI said that it was totally normal....
thanks, I'm going to start putting more in. My daughter already has a lot of gas so I don't want to try the peroxide if it causes additional gas. thanks again...
I started using the M9 drops in my daughters pouch however I'm not noticing a difference. How much do you guys use, the bottle says 4-8 drops but maybe that isn't enough?? also I'm guessing that...
Thanks Shaz, the nurse wasn't malicious and was very kind to my daughter that's why I was having trouble actually reporting her. I come in contact with people like her almost every day. People think...
Thanks, her surgeon did see it two months ago, as well as her GI. Her surgeon said it was prolapsed but that it was nothing to worry about. I think it's prolapsed even more now. Her GI thought it was...
I know this is a weird question but I think there might be something wrong with my daughters stoma. I've posted a few months ago about there being white spots on her stoma, they never really went...
thank you all for your replies. I am going to call my nurse today to get a prescription for the M9 drops....
I've been using the Adapt lubricating deodorant in my daughters pouch but it's definitely not doing a good job covering up the odor. I was just wondering what works best for all of you and do you...
oh my gosh polishdan...thank you so so so much. This is perfect. I've been having a hard time explaining it to all of the teachers/aids that are in and out of my daughters life. Her ice skating coach...
thank you for all the suggestions. I was told to put small cutouts of the product on my daughters most sensitive parts of her skin, like under the arm or inner thighs, but nothing is easy when you're...
Hello My daughter has had her ileostomy for a little over a year now. We've been using the same wafer (pediatric from holister) since we were discharged from the hospital, however we've been noticing...
she was on a 10 day antibiotic. She was also taking a probiotic while on the antibiotic. We are keeping up with the drinking. She was hospitalized plenty of times for dehydration so we know the...
My daughter has an ileostomy for a little over a year now due to Indeterminate colitis. Recently she came off antibiotics and I noticed that she has some white blisters on her stoma. Her skin around...