Are you still in the hospital? Are you on a full diet? Could be an Ileus...I think many IBDers have experienced at least one after a surgery. It takes time for your intestine to wake up. Clear...
Christine, sorry you are still dealing with this issue...BUT at least they agree that their is one!! Hopefully they'll have a better solution soon....
I use a Sure Seal (www.alpglobal.com) over my wafer and I swim all summer and shower daily. Sure Seals are waterproof and breathable and hold up amazingly well to moisture. My normal change schedule...
I am a huge filter fan...but I do cover mine with a piece of Sure Seal (it's waterproof AND breathable) so I don't have leakage from the filter. I don't have problems with the filter doing it's job!!...
Christine~are you running fevers? How are you treating the boil? Do warm compresses do anything to help? If you find yourself running a fever, call your doctor. Since you still have your anus it...
cover your filter with a piece of Sure Seal! I always cover mine (I have an ileo) and can shower without the filter failing...Sure Seals are waterproof and breathable so the gas can escape and water...
Do you have a loop ileo? Think garden hose cut in half and held together...you'll have a top hole and bottom hole...unfortunately it can fill up and then empty which can cause issues with your wafer....
sorry to hear you are going through this again. I don't really have any answers to help:-( but thinking out loud: Have you met with a WOC nurse? Maybe they can give suggestions/hints on how to manage...
Sorry to hear you are having these problems! Here's my 2 cents...but I have a ileostomy so we are comparing apples and oranges. With a colostomy you shouldn't have to empty as much as an ileostomate....
I have to agree with cupcakespinkgirl...I think the food consumed during the day affects your stoma's performance (during day and at night) as well as the importance of exercise to help sleep. It's...
There are a lot of arrows pointing to the problem...they aren't listening, either :shakehead: I know you like to stay relatively close to home but have you thought about one of the bigger teaching...
It seems like I am the only one who they work for! I do cover the filter opening with a piece of Sure Seal so that it doesn't leak (sure seals are breathable and waterproof). I tend to wear my...
Mine opened at about 5 months out. Had to have it surgically cleaned and then used a wound vac and eventually wet/dry packing. I had a VERY diseased rectum with fistulas so we expected issues...just...
I'm a Crohnie...and CarenZ is spot on! I didn't not read everything on page 2, so hopefully I'm not repeating anything. I've had my ileo for about 16 years and the last 8 it's been permanent (no...
Sorry to hear that! I'm a CD patient who did have small bowel involvement BUT the majority of my issues had been rectal...so long story short I did have temp ileo for about 8 years and stayed on...
Have you tried a different manufacturer? I know Hollister wafers make my skin itchy...but other brands do not....
Good Luck with your surgery...honestly, it was my best 40th Birthday gift!! Permanent closure? Or, just the rectum removal (leaving anus)? Either way take it easy and rest!! Let us know how you are...
Sorry to hear that's happening. Just wanted to let you know you aren't alone...I go through times where my very predictable stoma goes through some rebelling and the appliance that has worked forever...
I wonder why they said you cannot keep it. My first ileo was emergency after an issue with a resection and reversed after 3 months of healing. I loved life with it and was able to be a "normal"...
In general, I have a very small stoma (3/4") but depending on my eating habits/time of day/how active I've been my stoma can be about 1 1/2". I don't change my wafer size and usually if I place a...
Sorry I don't have a suggestion on a clipper brand but a long time ago someone posted that they used an empty TP roll to protect their stoma when they clipped/shaved the wafer area...hopefully...
What about Imuran? Before I went from a temp to a permanent ileo I was on a combination of Imuran and Cipro to help with the rectal issues. I did not have extensive bleeding but did have varying...
just a thought: do you use Skin Prep or Soap when you change your appliance? If so, that could be part of the problem......
Sure Seals www.alpglobal.com They are breathable and waterproof. They hold up in hot tubs, too. I run Half Marathons plus weight train and do hot yoga...so I SWEAT every day...and they haven't failed...
Poopouri works great and you can make a version of it with essential oils (much cheaper) you can find the ingredients online and on Pinterest....
I had one for two weeks when my wound abscessed several months post-op. For me, it didn't close it all the way, but it did make it manageable and I only had to wet/dry pack for a short time after....
The important thing is to have a WOC Nurse mark the area. They take into account where your waist is, movement, size and with the right nurse your clothing preference (low/high waistband). I was very...
Glad you are eating all the yummy summer veggies!! I also have a very small stoma that is very active. It also becomes very short when I lay down on my back and causes all sorts of grief. I did try a...
I pretty much have the same regimen as UCwhat? and add in summertime water sports (wake surfing, tubing and paddle boarding) and wintertime downhill and country skiing. I also run half marathons a...
Hi twingirl812, welcome to the ostomy forum! You'll find that life with an ileostomy really isn't that bad!! I've had one for close to 16 years (first was emergency/had it reversed/asked for another...
Congrats! I think most of us have the same regret!...
It works wonders for me...it has MANY uses!...
Brian84~you mentioned smell...have you been tested for c-diff? I'm sorry you are going through such a difficult time. Have you tried removing sugar (and the fake stuff, too) to see if that helps? It...
Are you eating frequent small meals/snacks? You may find eating a peanut butter cracker or pretzels before a meeting will keep the noise down....
I'm sorry I don't have any first handanswers for you...thinking out loud: have you tried any 'bulking' products? You may not be far enough post-op? Did you have a ileo reversal or ileo takedown for a...
It sounds like it is time, to take car of the situation, before it becomes and emergency. You are doing the right thing! I'll be thinking of you on Friday...(((HUGS)))...
Have you been diagnosed with Proctitis? Like it's been mentioned, you could feel ok, and think the lack of BMs means everything is fine, but the disease could be simmering away. Rectal pain, pressure...
^^what they said... Have you tried a wafer made with Pectin?...
At CC they generally all following the same protocol...so if you cannot get an appointment with Dr Remzi, take one with another doctor! They really have "seen it all" and what baffles local doctors,...
nene205~don't stress too much about it! I have flown many times both in the US and International with ease!! Just like Smd729, the only time I had to even pause going through the scanner was when I...
Please let us know when you do...I've been thinking of you!!...
I think the 2 step/3 step will depend on your situation/steroid use...It's more important for a successful outcome even if it takes a little longer. I am a fan so I could go on and on...do you have...
Once you get home, you will laugh at yourself, for worrying so much!! I just traveled from Ohio to Las Vegas and back without incident. Not my first trip away and I've gotten into my routine for...
Really? Lucky you!! He did the majority of my surgeries, and I'd agree he is one of the elite CR Surgeons. Hopefully you won't need his services :yeah:...
Trust your first instinct...place a call to your surgeon (bypass emails right now) and ask them to see her! Or, just make an emergency appointment...if you haven't already. Keep us posted!...
Christine~I'm so sorry to hear you're at this point...It sounds like there are many causes of all your discomfort. The biggest issue being the 'stump', how far it goes up should be answered by the...
Hang in there Christine. Sometimes meeting a new doctor can be a blessing:-) There may be medication (if you want to go that route) that can help your situation before having to go the surgery...
It's difficult to wrap your mind around it...but you are doing the BEST for your child!! Funny how one of the most beautiful places on earth doesn't have the medical care needed for IBD...
You shouldn't have problems with the wafer failing with a shower/swimming/bath. Do you use Skin Prep of any kind? If you do keeping that to just the area around the stoma should prevent the water...
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