My daughter works for a medical supply company called Shield Health Care. She is their Ostomy Lifestyle Specialist. You could check with them to see if they accept your insurance. They seem to be a...
Shield Healthcare is another good one and they direct bill Medicare, MediCal and Medicaid. They have an Ostomy Lifestyle Specialist and an Ostomy Community Page on their website and a Facebook page...
My daughter has a loop ileostomy and has done well with: Hollister New Image, Flextend Skin Barrier floating (convex) flange & tape #14802 Hollister New Image Lock 'n Roll drainable pouch with filter...
My daughter has kept her loop ileo for almost 3 years. She had some complications from the surgery that created the J-pouch and did not feel confident going for the takedown. She wanted to get...
KeepMovingOn-You asked if anyone has decided to keep their diverting loop ileostomy with an unused jpouch already constructed. My daughter has postponed her "takedown" surgery for nearly 3 years and...
Thank you to James Riley for your kind comments. I wish I could take credit for her being the way she is. From the time she was 3 or 4 years old, she was aware of others feelings and demonstrated an...
ActiveUCer, you were right. They had her empty into the sink so she could wash off the school bus. I guess she could have swished it around in the toilet to clean it off, lol. Pluot, Sorry it was a...
Laura has received many positive comments from her ostomy/IBD friends. A couple of people commented about her sitting down to change, using a towel and the clear bag. That video was done a couple of...
Thanks! I hope it brought some positive awareness. I am so proud of her. :smile:...
Earlier this year my daughter was approached by the producers of Tosh.0. They wanted to do a segment based on her You Tube videos she posts to help others with ostomy issues, surgery problems, etc....
Sorry to hear about your pain. It sounds very similar to pain my daughter had a while after her surgery (colectomy and jpouch formation with loop ileostomy). She would wake up at 2am with horribly...
Blueheron, Thanks for your detailed description of the fabric. Sounds like the quality makes it worth the price. I'll think I'll order one to see how it fits and let everyone know how she likes the...
She likes to wear really tight clothes (she's a 21 year old college student) and has had great success with the spanx type things and the belly bands on days she doesn't feel so well. When the bag...
Has anyone tried the Comfizz ladies vest? They look kind of like a long stretchy cami. My daughter asked if I could order one for her. They are $40 USD!! Wondering if they are comfortable, worth the...
My daughter has flown 5 round trips in the past year with her ileostomy. She used to mention it ahead of time and they usually did not know what she meant and they'd go get someone who would do the...
My daughter had a jp drain for a little over 3 months that I had to flush. We were sent home without instructions on how to do it, but we had a home health nurse and our family doc's nurse help me...
Do you have a home health nurse that could come do a visit to check this out? It sounds like it could be clogged. It is so hard to be responsible to manage these drains when they are so unfamiliar to...
Blueglass: She has an adult doctor who is great when it comes to believing that a patient knows when something is wrong and great at explaining things, but my daughter was her first patient with...
Thanks again for all your suggestions. ddd45-What is an EUA? We are at a big teaching hospital now where they do quite a few J-pouches, but I'm not aware of a GI J-pouch specialist there. There seems...
Thanks for your input. She saw the surgeon today for post hospital visit and he felt last month's hospital admission CT scan that showed some fluid was "normal" and did not really believe her pain...
My 20 yr old daughter had surgery due to UC in December, 2011. They did step 1 (colectomy) and step 2 (j-pouch formation) at the same time. She ended up in ICU a few days, had ileus for 11 days, then...
My daughter uses the tight, but not too tight, body shaper (similar to Spanx) from Target. I think the name is Self Esteem. It is a one piece item that you step into and looks like short shorts and...
Can I ask, what does the doctor do to treat it once they find it? Can it be repaired?...
I hate to be so graphic, but here goes. I had Step 1 and 2 together (colectomy & J-Pouch formed) December, 2011. I was supposed to have the re-connective Step 3 in June, but did not because I still...
Hi! This is sweetpes. My mom usually posts. This is my first. I am 8 months out of my total colectomy and jpouch formation with diverting ileostomy. 1 week ago I went backpacking in banff canada for...
Brian 84: its great that you are swimming and wakeboarding! That sounds like it could hurt if you landed wrong. Do you wear a protective plastic cover over your stoma. My daughter wears these fairly...
My 20 year old had total colectomy and j-pouch formation December 2011. She was scheduled for takedown this past June but had to cancel it She has a tiny opening where the pouch was attached with an...
My 20 year old daughter's colectomy and J- pouch formation surgery was 12.16.2011 and she lost loads of hair. It was everywhere in the house and she was very distressed. My hairdresser recommended...
Mystique 2: Thanks for your prayers. Blueglass: Each test report calls her issue something slightly different. Most recent is "Anastomotic dehiscence and presacral abscess formation, recurrent trace...
My daughter was on the schedule today to have her 2nd surgery, to close up the loop ileostomy, connecting up the j-pouch. It didn't happen. In December she had her 1st surgery, a colectomy and...
My twenty year old daughter with an ileostomy recently flew a couple of times. When getting ready to go into the body scanner, she whispered that she had an ostomy. The TSA guy did not understand...
Thanks for the tips. I will pass them along. It is great to see my daughter feeling so well (drain in butt for abscess resulting from hole in anastamosis just came out yesterday after 4 months!) and...
My daughter had colectomy, J-Pouch formation and loop ileostomy 12/16/11. After many complications, she finally felt well enough to try running on the treadmill. May be a coincidence, but she had...
Upsadaisy-What form of kelp did you take?...
My 20 y.o. daughter had her colon removed and j-pouch formation surgery 12.16.2011. In hospital 19 days including ICU and had abscess which we now know was caused by anastamosis of lower part of...
Thanks again for all your help. None of the local places seems to carry the sure seals, so we'll place an order through the suppliers that our insurance uses (First Line Medical and Liberty Medical)....
Thanks for your suggestions. I will try to locate those sure seals. We used silk tape and hopefully that will hold. She ended up being readmitted to our local hospital last night. 19 days in hospital...
Just did 3rd bag change since discharge and took a shower 3 hours later. Use the Hollister, clear one piece with the paste and it has worked really well....until now. What kind of tape can I use on...
She will be getting another CT scan when she goes for her 2 week post-discharge follow-up appt with surgeon. They will determine at that time if it can come out. She is in much more pain today and...
All your replies have been helpful and reassuring that others have had difficult recoveries and things do get better. Everyday is a little better but everyday comes with a few tears. 2nd bag change...
Being at home is wonderful but emotionally, lots of ups and downs. Laura is sometimes overwhelmed with how responsible she is for her own health, e.g. avoiding dehydration, keeping track of the new...
My daughter got discharged last night and we had a home health care nurse come by this afternoon. She was wonderful and helped Laura change her bag for the first time. She seemed very knowledgeable...
My daughter, age 20, elected to have surgery 12/16/2011 because she was still experiencing UC flares once weaned off pred while still on remicade plus imuran. We were expecting it to be the first of...
My 20 y.o. daughter is on Remicade and Imuran and she experienced hair thinning, but we think it was more related to a late reaction to a terrible flare (hospitalized and lost 20lbs). I got her some...
Thanks you all for your thoughtful comments. Seeing how quickly she can turn from feeling really good to having debilitating pain, explosive D, etc. makes it more clear to us that she will need...
Quincy, When she was first diagnosed, she was put on Lialda, with no improvement and questionable worsening, tho it was difficult to tell what caused what. She tried Apriso for a short while and when...
My daughter finally weaned off Prednisone again (she has been on it 12 of the last 17 months). Last time she weaned off she was able to stay off for 5 months. This time she was hit hard with symptoms...
There are a couple of GI's trying to get the okay for clinical trials, but I was told no one has yet gotten FDA approval. The trials have to be approved by the hospital's Institutional /Ethics Review...
Could the burning be relieved by Omeprazole (Prilosec) tablets. When my daughter is on Prednisone, she gets lots of discomfort and it seems to always be relieved by this. I see on the medication...
Thanks for all the great input. Tried coconut water yesterday, and she did not care for it. I never thought about trying to make homemade Chai tea. I'll look for some good recipes. She loves the tea...