So sorry to hear you went through this. It is scary to think of how quickly things can change sometimes. Glad to hear you are doing better. Hope things go more smoothly now that you have a new stoma....
I add tape on my wafer but all the time-- not only for swimming. The tape around Convatec wafers irritates my skin so I cut it off and replace it with strips of 3M Medipore tape. This tape is...
I love Convatec wafers. Nothing sticks to me as well as their wonderful Durahesive material and it has given me confidence to do so many things without worrying about my wafers coming off. That said,...
I knew I didn't want to try j-pouch surgery so I had my colon, rectum and anus removed during the one surgery. I had my surgery about a month after leaving the hospital with a severe flare that had...
I may have missed it in one of your posts, but did they try putting you on Remicade? I was hospitalized for 16 days several years ago with a very severe flare (going 25+ times a day, unable to stay...
My stoma is two inches below my belly button and a couple of inches to the right. Depending on which pants I am wearing, the waistband sits above or gently rests on my stoma. I just tuck my pouch...
I don't know if I had any mesh put in but I don't think so. Things have shifted for me too and my uterus is tilted back (got an ultrasound for a fibroid a couple years after surgery and was told...
I live in the greater Denver area and my surgeon was Dr. Craig Brown. I highly recommend him-- even wrote a blog post about how thankful I was to have him as my doctor....
So sorry to hear that you have to head back to surgery, but I am glad that your surgeon is confident that she can fix the issue. December 5th will be here before you know it so keep hanging in there!...
I developed excruciating joint pain from Remicade 5 days after my very first infusion. My pain would always come on in the middle of the night and it migrated to different joints. By morning the pain...
I agree! That product is amazing! Byram Healthcare carries it and my insurance covers a portion. If you can't find it at your supplier, ask. It is a fairly new product and may not be listed in some...
I had my anus and rectum removed and my butt sewn up during my original ostomy surgery because I knew I didn't want a j-pouch. I was fortunate in that I had absolutely no problems with my butt...
I love Convatec Durahesive wafers too, but the outer tape irritates my skin. I cut it off and replace it with small strips of 3M Medipore tape instead. I cut 1/2" by 1" pieces and attach them to the...
KeepMovinOn- Glad to hear you went for a hike on part of the CO Trail! I agree- hydration is always tricky. Better to pee a lot than get a kidney stone. I got one of those last November from chronic...
My surgeon always said I could do anything with my ostomy once I healed and I do. I have an permanent end ileo-- not a loop so I can't speak as to whether or not that makes a difference. I rock...
I have had good luck with Duoderm. Here is a blog post I wrote about the method I use. http://ostomyoutdoors.com/2013/04/01/using-duoderm-to-protect-peristomal-skin/ Also, if you find that you do...
I do a lot of camping, backpacking and climbing-- often in the remote wilderness where one would never carry a cooler. I have even hiked in 98 degree temps and never had a problem with heat hurting...
UCwhat- I don't know any secret tricks:) I do have a long stoma that doesn't ever retract, so I am sure that has something to do with the success with the Durahesive wafer... that and using an Eakin...
This choice is a deeply personal one and based on your own values and lifestyle. I had UC and chose surgery over the biologics, and honestly, it wasn't that agonizing of a decision for me. My inner...
I received my sample of a Mio 2-piece click appliance last week and gave it a try. Unfortunately, it leaked this morning after three days. This was my first leak in 3.5 years! The only other leak I...
I sounds like stoma powder would be great to try for this skin issue. Just remember to dab skin prep (such as 3M Cavillon or Smith and Nephew) over the powder once you place it on your skin to create...
A Coloplast rep came to my last local ostomy association meeting and brought a sample of the two-piece Mio. It looks really cool. It has a similar "Clik" system as the Sensura or Assura two-piece...
I occasionally get stark spots on my stoma. The splotches look like bruises made up of many small dark purplish black dots. They are not bruises though as they have happened when I have been wearing...
I am so glad you have found the blog helpful! It's great that you had the discussion with your surgeon about stoma length. Sounds like you have a great surgeon. I didn't know anything about stoma...
Congratulations on having a date set! I remember it seemed strange to me to be so excited to have surgery, but the date couldn't come soon enough! My biggest fear at that time was that I might slip...
NCOT- I can't remember if I posted this in an earlier thread but I use Duoderm to heal the skin under my stoma (and lately I have been using a piece on that trouble-spot for prevention even when the...
There isn't much I miss about my colon. I will echo the same ones the poster said. Sometimes when I get horrible gas stomach pains I wish I could push it out and pass gas like in the days when I had...
Other than some post-surgical complications in the initial months after my permanent ileostomy surgery (which were all resolved fine), I have not been to the ER with anything directly related to my...
I had surgery three years ago and I am really happy with the decision. I chose a permanent ileostomy because I felt the outcome of the surgery was more predictable, I didn't want to go through...
I started to get yellowish-white ulcers on my stoma about 1.5 years after surgery. They look a lot like canker sores in that they are a bit concave. The first one I got was on the underside of my...
Three years ago I opted for a permanent ileostomy instead of Remicade and I didn't even have dysplasia. I just didn't feel like taking such a strong drug that would impact my immune system for the...
I use 3M Medipore tape (in the 2-inch wide roll). It is the same tape surgeons and nurses often use to attach dressings after surgery because it is so gentle on the skin. I cut the tape into little...
Have you found the forum I list below? It is a Crohn's one and they have a lot of sub-forums. There is one called the stoma subforum. I stumbled on it because though I have UC with my permanent ileo,...
Another possibility for the rash is bacterial folliculitis. It isn't something my stoma nurse originally thought of... she thought it was a yeast infection too but it just wouldn't go away with the...
Regarding the swollen/lengthened stoma-- mine does that just about every day regardless of what pouch I am wearing. When this happens my stoma gets really soft and floppy (which makes it wider) and...
I did the same amount of as Pluot mentioned... just beyond where I expected my mid-line incision would end (though I shaved and did not wax). I did not worry about the backside and I did have my anus...
Ha ha! I was on top of a peak today but now I am back:) I was just spending the evening brushing up on some guitar playing and my fingers need a break. Perfect time to respond! I really do need to...
When I had a mucotaneous separation my stoma nurse had me pack it with a dressing called Melgisorb that is derived from seaweed. I would take some fibers off the Melgisorb sheet (it looks like a felt...
Oh yeah- I have better luck putting the Eakin right on my skin than on my wafer first. Here is my method. http://ostomyoutdoors.com/2012/10/30/ring-around-the-stoma-my-best-defense-against-leaks/...
Yeah- it sounds like some consider this a leak but it doesn't seem like one to me. None of the stoma nurses that have helped me take my appliance/rings on and off have ever called this leaking...
I always have a bit of stool on mine as you describe... never beyond the inner 1/4" of the ring though. Sometimes I also have some stool mixed in with the Eakin residue that is left behind on my skin...
I love watermelon and can eat it no problem. I ate 5 wedges throughout the afternoon yesterday. The tiny white seeds in the "seedless" version and some blobs of fibrous material show up in my pouch...
Hmmm... never thought of using cardboard instead of the paper towel but might as well give it a go. Sometimes one can come up with some pretty cool solutions to ostomy problems just by experimenting....
Yeah... it is a little hard to picture. I thought of a chef's hat more like this: http://www.clubchef.com.au/show.php?prod_id=20144&prod_name=Spanish+Chef+Hat+by+Club+Chef Basically what I am trying...
You really don't have to worry about getting it all off. Definitely don't scrub or it will irritate the skin. Sometimes I will pick a bit of it off with dry paper towel (Eakin material sort of sticks...
So sorry to hear you had a rough time:( Not sure why the output would be leaking out the bottom/side of your stoma. Even with a mucocutaneous separation, it comes out of the top. Just the skin has...
I get ulcers on my stoma. I didn't experience them until about 1.5 years after getting my ostomy though. They look a bit like canker sores and range in size from a tiny spot to slightly larger than...
Mucinex works wonders for me too. That combined with the Neil Med sinus squeeze bottle rinse usually takes care of sinus issues for me. Shortens colds a little too because it gets the crud out. (I...
I had that exact thing! It came on roughly 5 days after my very first infusion. It was hands-down the most excruciating thing I have ever experienced... and I have had broken bones, kidney stones and...
My stoma is shaped like that, but then it is also on the long side so it is sort of a tipped over volcano:) I have good luck with Eakins, but do find that sometimes the output seeps under the area...