No, the skin is fine, it is below the skin, more in the muscle. She says it only hurts when she moves, so I think it is scar tissue or perhaps sutures that haven't dissolved??...
My daughter, 18, uses the Phoenix belt and the Stealthbelt. If you are very active such as sports, the Stealth belt would be more supportive. Google Stealthbelt. But, if it is just for everyday use...
My daughter had her first step of a three step j-pouch 6 weeks ago. She has been having pain around her stoma recently. Mostly when she moves--she says it doesn't hurt when she is still. It even...
I have to check to see if it has a tag to know what kind of material it is for sure, but it is a stretchy soft fabric. Maybe cotton/lycra? She wears a different one to bed--one from ostomysecrets. I...
I just wanted to share that my daughter is loving her stealth belt! She was a bit disappointed at first because "you could still see it". Her stoma sticks out a LOT and that is her biggest issue, and...
Equestrian Mom - She has only tried the adapt. We have a couple of the eakin seals, though, that she could try. I don't know if she would actually need the seal, as her stoma is quite long. However,...
Yes, when she takes it off to do a complete change. The part that doesn't come off is not the part the pouch connects to, but the extra "putty" like stuff. I don't think it is because it is too soon,...
My daughter always has such a hard time getting the barrier ring off. She was taught to take a third of the hollister adapt ring and mold it into a snake and put it around the edge of the opening to...
Thanks, everyone. I guess I was just hoping there was an easier way. :) I think I will have her try one before I go punching holes in all of the bags just in case. No one has had one leak like while...
My daughter has an end ileostomy. They wouldn't be good for night time, then, apparently. I was mostly wondering about letting the air out of the bag as that seems to be the issue. Maybe we will just...
Anyone with experience using the pouches with a filter? Do they let the air out of the bag? Can you smell the stool? Leak? We got the vents to put in the bags, but they are a pain to put on. It seems...
I am looking into an Phoenix belt for my daughter. I saw a post from you stating you had a brand new one that you didn't need. Would you happen to still have it? Also, how did you find the sizing to...
Anyone try the pills you can take orally?...
I am sure this has been discussed on this board before, but I couldn't find any. Would anyone share what brand of drops they find work the best in the bags to help eliminate odor? I have heard of...
Daughter is having surgery Monday and just wondering what products are the most gentle to the skin. I worry about irritation around the stoma....
Jennifer, you mention you are having problems with Remicade. Are you thinking of surgery? Just curious because my daughter might be losing response to Remicade and we are checking out the option of...
Anyone have experience or knowledge about low dose naltrexone?...
Anyone have any information they could share on Cleveland Clinic surgeons? Any one-steppers out there or anyone know of someone who has had it done in one step? Thanks!...
You said you went to Cleveland? May I ask who your surgeon was? I just made an appointment there for my daughter. She has been on remicade for 4 years and may be losing response. We are checking our...
Marlee, thanks for the suggestion!! I will ask for the patches for sure if it gets too bad. Poor kid, it has been hurting for a while and she didn't mention it to me until I asked what was wrong when...
Okie, can you tell me what AS is? Also, have any of you found anything that helps? My daughters isn't in the typical place around the sternum, hers is on the lower left rib cage. She never has been...
My daughter had this last year about this time and it lasted at least 6 months and the pain was bad. She had injections and did other things that didn't help. Well, tonight she announced that it has...
Did your dr. have you start on a low dose and work your way up? When I talked to a POTS specialist, he said to start at only 20 mg. and work your way up. My daughter would love to give it a try as it...
Hi Kim. Glad to hear the Ambien helped your daughter. What do you mean by her sleep schedule flipped around? Is she not falling asleep until really late? What kind of dr. did she see? Yes, my...
Thanks Serrine, I was hoping there would be a "message" option, but I guess not. I am guilty as well of not having an email address. I will have to update that....
Kim, we have been dealing with this for a long time, but it really came out when she was diagnosed with POTS 2 years ago at 15. Because they apparently overlap and we still don't have a "diagnosis"...
What did you learn from it? My daughter is scheduled in sleep medicine next week. I have had the study done, but for different reasons. I'm not even sure they will order one because she is so young...
Wow, it is interesting seeing other storys of teenage girls and how they are affected by this. My daughter isn't as bad as she was 2 years ago, and we certaily don't want to go back there! She is a...
I don't remember the ins and outs of the forum, but can we email or private message each other? I had this long reply to post and accidently erased it. Now I am just plain too exhausted to write...
Chutz, you are probably right, she may need to go back to her rhematologist. She was there for her back and costochondritis and the only thing they wanted to treat her with was NSAIDS and said it was...
Debbie, POTS symptoms and FM overlap along with CFS. The good thing (lol) about POTS is that there is a way to diagnose it!! A tilt-table test is done and you heart rate goes up 30+ beats a minute...
Okay, I will be the first to reply to myself! :smilewinkgrin: I was just reading in FM 101 that costochondritis is common with people that have FM. My daughter had that for over 6 months of...
Hello. I have a 17 yo daughter that I have questioned for quite a while if she could have FM. She has been diagnosed with ulcerative colitis and we have been basically told that her aches and pains...
Thanks Judy. I have to wonder if people who have this issue get better after having their colon removed or if it stays the same. My thinking is MAYBE if there is no colon for the immune system to get...
I noticed in your signature you have "Chronic joint/connective tissue/muscle pain". I am very curious about this. My daughter who has UC has been struggling with "strange" problems that involve those...
In response to your fertility question. I asked at a CCFA conference, and the dr. said that a j-pouch can decrease a woman's fertility by 80%, but just having the colon removed and doing an ostomy,...
From my knowledge, 6mp (mercaptopurine) and Imuran (azathioprine) are dosed differently. about half as much 6mp as Imuran, so you will want to take that into account. Which did your dr. actually...
My daughter has recently been getting a lot of unexplained bruises on her legs, a couple nose bleeds, fatigue and got her period after 2 weeks--NEVER been early before. All of this happened in a week...
YES!! My daughter has this right now! She is 16, dx 3 years ago. They say it is costochondritis too. She had a nerve block done and it worked really well, but now it is in another area and we are...
Thanks for all your replies. I will follow up with my dr and try to keep track of all the symptoms. I know she mentioned vitamin deficiencies such as B12, so maybe she will order some blood tests. I...
First off, I'd like to tell everyone on this board that I am so sorry you are struggling with your health! This is my first time visiting the board and I thought who better to ask questions than...
6 weeks from stopping AZA to mod/severe pancolitis....
Kelsie ...
6 weeks prior. A bit discouraging, but now a reason for the pain. Had levels tested a month or so ago, and they looked good, so maybe a mild flare? She was perfect for about[b] 4 months, and...
Thanks for all your replies! Quincy, I am not on it, my daughter is---was. 10mg for 5 days, and it was terrible--at least the GI and I think it was from the ami. Severe dizziness, saying words...
After over a month of moderate/severe abdominal pain, and an pretty good looking scope, we are going to try amitriptyline to see if that would ease the abdominal pain. Anyone tried it with or without...
Sara14, I am kind of surprised you have been fighting to reach remission for almost a year and haven't tried any other meds? Or perhaps you have but they aren't listed? Mayo is a great place and has...
Thanks everyone. Remicade was started in July and we had a wonderful 4 months--imediate improvement, but even initially, mild symptoms would start even during the loading doses, but wasn't anything...
For those on or that have been on Remicade..... How was your initial response? If you started losing response, what were your first indications? Did you ever have your levels or antibodies tested? If...
Sorry guys, I was thinking I was posting this on the UC forum!...