What are people's opinions on the best barrier wipes? I've been using the 3M Cavilon wipes but am looking for improvements. I'm interested in wipes, not spray....
I use Sure Seals as well and they have never failed me. Has anyone used an ostomy swim wrap? I'm looking at them and wondering if they might help when in the pool. They're not waterproof but they...
My surgeon gave me this warning as well before surgery. He assured me the sexual side effects would be temporary, but I still ended up going with the subtotal colectomy instead, which leaves the anus...
Your GI is more comfortable having you on steroids than on Remicade, when you're giving birth via c-section?...
Thanks for the tips. I guess there isn't a good way to do an appliance change in a non-single public restroom. Keith, blocking off the restroom is a no-go. Not only would it call too much attention...
It is definitely possible to get Remicade infusions at home. Remicade's own web site points to 2infuse.com to locate infusion centers. This site lists many home infusion services, at least near me....
So I was wondering what people's strategies were if they have ever had to do a full appliance change in a public restroom. I have done it a handful of times at work in a single-person restroom....
Remicade infusions are nearly always going to be more expensive (often much, much more expensive) if you have them done at a hospital. Not sure where you have been getting them done, but a $34,000...
Entyvio causing fistulas? That doesn't sound right to me at all. In fact, I have Crohn's and the exact opposite happened. I had two fistulas that both closed after a year on Entyvio and are still...
Per TSA guidelines, any scissors less than 4 inches in length (measured from blade tip to fulcrum) are allowed. I too have the Coloplast ones and never have had anyone even mention them....
I change every 2 days. I so wish I could go longer but I either start leaking around the stoma or the outer edges start peeling from my skin or both....
I second the recommendation of the Sure Seals. They are great in the water!...
So I was getting out of the shower last night and my wife started pounding on the door. "I need your adhesive remover wipes!" I asked her what was going on. Apparently my 5-year-old daughter had...
I have had high triglycerides for several years. Other cholesterol numbers are normal and I am by no means overweight. I was on steroids when the numbers were tested but have been off them for a...
I'd recommend posting this question on the Psoriasis board. It's been available for them far longer than for Crohn's, so you'd probably be more likely to get a response....
The dentists are against the osteoporosis drugs because they carry a risk of jaw necrosis which can cause major problems if you are having major dental work (i.e. extractions) done. I was on oral...
I had the fistula plug surgery. It was suggested to me by my doctor. It was not successful. Also, insurance refused to pay for it after the fact. My doctor and the hospital ate the charges, so I was...
My DEXA scan showed osteopenia before my last flare. I was treated with steroids during the flare and a post-flare DEXA scan showed it progressed to osteoporosis. I would recommend consulting with an...
I started Humira in 2004 at one 40mg shot biweekly (every 14 days). It pretty much put me in remission but I noticed that I started having symptoms 2 or 3 days before I was due for a shot. After a...
A lot of people have increased infusion frequency to every 4 weeks. Talk to your doctor. This would, of course, have to be cleared with your insurance company too....
Mackster - Nope, my stoma never shrank back to its original size....
Use the cut-to-fit wafers or just cut a slightly bigger hole in your pre-sized until the size of your stoma stabilizes. If you're not having any pain, discomfort, or obstruction symptoms, then it's...
Glad you have your answer! Next steps will be figuring out what to do about it. If you go for surgery, see if strictureplasty is an option for you....
Any update on the scan results?...
For me it was found via CT scan in the hospital ER during a bowel obstruction. Don't let it get that far, try your GI again. Does he have an e-mail portal? Sometimes you can bypass the nurse and get...
NCOT, while I was technically in remission from surgery when I started Entyvio, I was still having perianal disease with two fistulas. After about a year on Entyvio, both fistulas closed and I've...
I called TSA before I flew for first time with ostomy. They told me to tell screener ahead of time, they'd put me in a special medical line with trained screener, etc. So I did that and I've never...
Sting, if your back passage isn't sewn up, this is totally normal. I am 2.5 years out from my surgery and I still occasionally get back passage mucous output....
I'm on Entyvio every 8 weeks and have dealt with an allergic-type reaction to it. What was happening with me consistently was that as soon as I finished the infusion and they were infusing the saline...
Hmm... not really. When I had the stricture and was getting partial blockages I kept getting dehydrated and every time ended up in the ER for fluids. If your doctor won't do the IV fluids anymore,...
Ugh, I hated 6MP (and Imuran). I had similar issues with nausea, fatigue, and loss of appetite. "Luckily" I also got jaundiced with sky-high bilirubin so I had a good excuse to get off of those...
Any update, Bull? What kind of output were you getting? If it is high volumes of pure liquid, you likely have a partial blockage and your body is trying to flush it out. It is very easy to get...
Honestly even without an ostomy it's a little odd to be walking around with no shirt on when company is over. I'd definitely have a problem sending my daughter to play at someone's house where the...
Thanks for the responses. I've only had 1 night blowout in the 2 1/2 years I've had the ostomy. I looked to see if they had the magnum size bags for the Coloplast Mio, which is what i use, and they...
Hey all, since I got my ostomy I need to empty the bag one time during the night, usually around 4:00am. I've been having a lot of trouble getting into a deep sleep over the past several months....
Yes, it is weird that surgery is always presented to the patient as a choice. Shouldn't the doctors have a good recommendation about what to do? Sadly there is rarely one right answer to how your...
Cupcake - I obviously don't know anything about your situation or whether you are married, but if you are married have you had any talk with your husband about a vasectomy? Put the burden on him......
Ah, 2 years later and my thread has been resurrected. Since then I have found the pleasure of silicone based alcohol-free adhesive remover spray and wipes. (I use Convatec Sensi-Care spray and...
Basically this extended study says that people who respond to it do well on it for a long period of time. Which bodes well for me, as I've been on it for 2.5 years and am doing well. But not everyone...
Is he urinating a lot when he goes or does very little come out? Any symptoms of infections, such as fever, chills, or pain when urinating?...
My guess would be around 15 CT scans over the last 30 years. Plus maybe 10 small bowel series x-rays (though they have much less radiation than a CT scan), and several bone density and other x-rays....
Interesting, I just read about a small study last night linking Entyvio to increased risk of surgical site infections, which is indeed what happened to me in July. I had an Entyvio infusion 8 days...
Ugh, MOVIPREP. Good luck with that, it's nasty. One huge upside of having an ileostomy is no more prep - ever. If you have to have an ileoscopy (where they put the scope through the stoma) the only...
Ben, I'm just curious about the biologics (Remicade, Humira, Simponi, Cimzia, Entyvio). You have not tried any but has your doctor ever suggested them? Pentasa is basically no better than a placebo...
Ben, good luck with the scope. Let us know how it goes. Were any of the drugs you have taken in the past biologics (Remicade, Humira, Simponi)? Were any injected or given by IV infusion? I ask...
Ben - I have Crohn's and have a permanent ostomy. In my case I opted for the surgery after going through an 8 month severe flare during which I went through every medication available and nothing,...
Are you able to eat normally? Do you have any appetite? Is the pain coming from the incision and stoma or is it more internal? I'm asking these questions because an ileus is a common side effect...
Blueglass, you cracked me up with the zombie apocalypse comment. I've often had thoughts about what I would do since I would quickly run out of supplies in such a situation, even with my current...
Sounds similar to me. I had been seeing the same GI for 23 years, since I was a teenager, and he is retiring in March. I already found a new GI who I am very happy with so far (though it's only been...
Wow, this thing sounds incredible! My guess is that it will be years before it makes it to the US and insurance is willing to pay for it, but by then we should have a lot more data about outcomes and...