Daughter now 13. At 7 dx of UC. Used them all....including Remicade and Humira. Got a septic hip from Remicade thus the jump to Humira. It failed after 15 months. Such continual flares that hospital...
Daughter, 12, in tears from anus itching so bad after her stoma reversal. She had pull through surgery and is now rid of UC, thank the Lord. Now she has to deal with this? What's it from? Food? All...
Thank you, daughter just had the 2nd of 3 surgeries and this info so helpful. Definitely wanting to know what to expect and needing tips on handling the constant fear of pouchitis. The takedown will...
After our Montana doctor prescribed Go Lytely (lemon lime) for all four of daughter's colonoscopies, I was surprised when her California surgeon said to go to the drugstore and buy an 8 oz (238 g)...
My daughter is 12 and is having the 3 step. We are now done with the 2nd step. After the first surgery we waited 3 months before the second (J pouch formation). We are now waiting 8 weeks (26 days to...
Daughter, 12, just had second surgery of a three stage process. She did great, and was released from hospital a day early. We ended up back in there, though, several days later as she was weak,...
Have been to ostomy nurse twice now since arriving home....going to convex wafers. Any better luck will be great. She called after getting off bus at school.....leaking. Got her taken care of and...
My daughter had that happen in hospital, just two days after getting the ostomy! The nurse didn't snap it on tightly....needless to say we checked it often after that!...
Her belly is soft and her stoma is much smaller now, 8weeks after surgery. Maybe we are using too many products. We use one no sting barrier but use the eakin seal and paste as well. Changed it again...
Daughter, 12, had Hartmann procedure. 3 months for ostomy, then remove rectum and form j pouch. Two more months of ostomy then takedown. Wears 7 weeks into the first round and changing wafer daily....
She is allergic to Vancomycin. We are on Round 2 of Flagyl, plus Questran for binding. Not working, only making her vomit. Blood in stool. Still losing weight. Dr mentioned Fecal Transplant if this...
OH, MY GOSH. I don't even know how to explain what's going on with our daughter (12). She was in hospital for 15 days in May with an insane UC flare. Did well until end of June, then said she thought...
Dr out of country until Wed. Daughter in terrible flare. Humira and prednisone not working. Been two weeks. Doctors front desk gal mentioned a shot of solumedrol at the ER....any thoughts?...
Daughter is due for Humira injection, but she has a cold. It's been holding on for a week. Is it ture I should not give her the injection until she feels better? Could she flare?...
Okay, I'm back. I just read all your replies. Took her to her Pedi GI on Tuesday. She recommended hospitalization again. We came home and are headed back tomorrow to spend the weekend in hospital....
Thanks, all. I guess I did fail to mention that she had Remicade 3 times. She ended up with a septic hip (air flight, hip surgery) and on another occasion she had major allergic reaction. However,...
As the mom of a little girl, 10, with UC since 2007, I am fed up! She is on Lialda, Mercaptopurine, Entacort and prednisone. None of it's working, since she continues to be in a long flare (since...
Daughter admitted after colonoscopy showed hideous flare of her UC. Came home yesterday and now she's right back to being terrible. While on the i.v. prednisone she was a new child! Here at home...
daughter has been on both. the Imuran made her toxicity levels go way up and the test through Prometheus Labs in Los Angeles indicated that her body wasn't responding as it should. We then moved on...
thanks for all the comments. daughter still in flare, though she's gained 4 lbs back. She has a lot of bubbles in her tummy and feels the urge to vomit at the same time as having diarrhea. going to...
Daughter in yet another major flare. She's so sick. Bloody diarrhea. Not eating. Taking all her meds on an empty stomach is not good. She feels woozy and weak. In the past, the prednisone has helped...
I'm somewhat discourged to read this. Our daughter will begin Entocorte tomorrow. She has UC but the majority of her ailments are joint pain. Bad joint pain...affects her movements, especially her...
She did receive benadryl, but only 10 min before they started the infusion. Then they turned it on full rate, instead of at 50 like in the past. Not sure why all the changes, maybe they were packed....
Daughter got septic hip 4 days after 2nd infusion. Yesterday she tried for the 3rd infusion and 3 minutes into it she had a severe reaction (airway blocked, red face, purple face, hives one on top of...
Still waiting to start our 9 yr old on Remicade. I checked the forums here and see in the signature panels that some of you have had allergic reactions to remicade. What did they entail? Our daughter...
Saw a rheumatologist about the joint pain and he recommends Remicade for the control of the UC and the joint pain. Nervous to have my 9 yr old begin this after all the terrible side effects of other...
Daughter has been on Imuran for 6 months. Her dosage was raised to 150 mg/daily 2 months ago and we've noticed a lot more distractedness, lack of focus, etc from her. Assigned a task she'll take 2...
My daughter suffers from UC and early on she had horrible knee and ankle pain - to the extent she couldn't walk or set her toes on the floor. That has passed, thankfully. However, the last 2 months,...
Thanks, all - I will visit with her Dr to see if the surgery is a viable option for her. UC is an auto immune disease. Removing the colon just "cures" it? No meds? What about the other symptoms UC...
Flared when got dosage of prednisone down to 2 mg a day so went back to 5 mg daily (Drs orders) and then tapered again. Worked all the way down to nothing! Get occasional joint pain now which used to...
A few days over a year since diagnosed with UC. Flareups at a minimum but horrible side effects from several meds. Tried Asacol, Lialda, generic 6MP, and Purinethol. Now Imuran. So far there's been...
Have molluscums under eye (pockets of fluid), arthritis pain in ankles and one knee that requires use of a wheelchair when in a flare, bruise easily....
Wow, learned a bit from these posts - our daughter's labs show that the Imuran is working but that her toxicity levels are high. Maybe a reduction in the dosing would reflect the Imuran still working...
Wasn't aware of a test that would indicate her tolerance to the Imuran or other 6MP, but her blood work gets sent routinely to that lab in California. It is Prometheus Labs. I will ask if there is a...
Daughter began the Imuran two weeks ago today. SHe had to come off the 6MP Purinethol as she was at toxic levels. However, the drug was working on the UC. The side effects were awful - weight loss,...
The Asacol came out whole in the stool (I know because this is my daughter I'm talking about , and I felt them)! Tonight the Lialda came out whole as she threw up on the floor and I had to clean...
Been on Lialda since April 08 when the Asacol wouldn't stay down (they came out whole, too). But couldn't get off prednisone without a flare so started the 6mp. Takes a few months for the 6mp to...
The Kefir is great stuff! Glad you started taking a probiotic. They do work wonders, especially when the diarrhea is constant. Putting the good flora back in your tummy is helpful. We used Kefir for...
Our daughter was diagnosed with cdiff (bloody stool samples). No UC history in our family. She is actually much taller and more muscular than others her age so she doesn't fit the profile of the...
Diagnosed finally in November 2007 but symptoms began in early September. Maybe stress of school year beginning?...
Been sick for over a week. Taking 6mp, Lialda, prevacid and prednisone. Tonight the Lialda came out whole after taking it this morning. All 3 of them totally whole! I wonder if the 6mp is finally...
I have read this book. My neighbor has Crohn's (he is 62) as does his daughter who is 27. They follow the diet like the Bible and both are med free and symptom free. I reviewed it as our daughter was...
Potatoes are one of the few things tolerated during a flare at our house. Mashed, baked and shredded hashbrowns in butter are her favorite!...
Thanks Irish Mom! She's just been acting down in the dumps since she started the new 6MP. Prometheus also did her testing and on the generic 6MP her levels weren't where they wanted them. So we threw...
Piper-Chris: Thanks for the info. We've put our daughter down to 50 mg/day per Dr orders and her blood work (SED rate and CRP) are improving. We had it done during her symptoms of 6MP overdose and...
Yes, she's been taking Lialda since January. 3 each a day. Dr said to stay on it until the 6MP kicks in. I guess it takes up to 6 months to work? She's been on the generic 6MP for 4 months....
This is very helpful for me to read as well. Thank you all! Our little girl is only 8 yo and is about 65 lbs (now that she's gained 15 back after sever UC flare). She's been on the generic 6MP for 4...
You are all so nice - thank you! Having been a perfectly happy and upbeat mom and wife, having been hit with a slowed down thyroid isn't too fun. Weight gain, can't get out of bed, lethargic, don't...
Pediatric GI says to start the 6MP again but to cut the dose in half - to 50mg day for my 60 lb daughter. So tomorrow we're going for it. Today was fabulous - just another fun day of summer - no...
Is this the forum for discussing thyroid problems and associated feelings with trying to level out on medication?...