Note to self, DO NOT ROLL ONTO YOUR STOMACH!!!

[Archives1]

Yea, nothing like having to get up at 5 am to change an ostomy bag because your dumb brain was like, let's roll onto your stomach when my bag was full of gas. Luckily I caught it right away but still had to take the time to change. GRRR this is so frustrating but they keep telling me it will get better. I have only gone three days between changing the wafer that attaches to my skin and it should be every four days. This one was changed at my doctor's appointment today so that really sucks. Luck that my samples will be here today or I could be in deep crap without any wafers left.

 

[Archives1]

Hi FLGuy
Is this your first time with an ostomy? Hang in there, it’s a learning curve. I can tell you from experience, the most important thing is to have the right products. Coloplast if you call them will send you samples to try out. I found that the SenSura Mio worked best for me. There are communities out there to help encourage and give tips/hacks to make life easier. If you are moving around in your sleep and want to prevent rolling over just sleep with a pillow on either side of you to prevent this. I always wore a onesie at night to prevent a blowout and keep my bag close to my body. You will get past this and believe it or not forget you even have it at times. What is your diagnosis? Crohn’s disease, diverticulitis, IBS? What’s the prognosis? Will they be reversing the ostomy? My ostomy was due to diverticulitis and they removed about 20 inches of my lower intestines. Thankfully they were able to reverse/reattach my intestines, called takedown surgery. I have a ton of hacks if you’re interested. I wish you all the best and it will get easier.

 

[Archives1]

@Nocturiaat55

Had my surgery on the 15th of April. I have an iliostomy. Today I got my samples from coloplast with an awesome free bag to keep ostomy stuff in.

My biggest thing right now is that some days I have low output and then a lot of gas with pain. Then the switch flips and I have high output.

The only other thing is getting my skin to heal up. I have another appointment with my ostomy specialist in two weeks and that will be the normal thing for a while because I have a small issue with my stoma that may need another surgery to fix (I have a loop ileostomy and they think that the gas is building up in the loop and not coming out like it should, they tough me how to fight it out but if it becomes bad then I have to go to the hospital).

Still don't know yet what is next but I'm just taking it a day at a time.

 

[Archives1]

Glad that you know why you are having some of the issues. Having a positive outlook is 90% of the recovery. Yes, it will take time for the skin to heal. I used Calmoseptine cream on the tender skin and would at times try to hold off on placing another wafer to give it some "air". Just make sure that the skin is dry and clean before putting another wafer on. Ileostomies are much harder because of the type of output. I found that my colostomy was far easier to manage. I too had a loop ileostomy while I waited for my Large Intestine (colostomy) resection to heal. Glad you have the coloplast, great products. As I have said, defiantly go to Inspire.com as they have a community specifically for ostomates. They can provide the additional support that is specific to your new treatment. This site is great and I found good support for my recovery but Inspire will provide additional support. I still at times go to the site as many threads relate to post takedown information. Additionally, look into a Wound Care Nurse that will visit you at home. Mine was a godsend and taught me everything I needed to know and helped me in the first few weeks.
Not sure of your insurance but They (Coloplast) should provide you with barrier powder, deodorant/lubricant for the bag, a belt to help secure the bag and adhesive remover to assist in removing the old wafer. Its a learning curve so hang in there

 

[Archives1]

@Nocturiaat55

I truly hate this ostomy. Just had my third waffer blow out in the last 36 hours. This one had nothing wrong with it just decided to leak out near my belly button. My issues is that when I sit down my stoma in pulled in but then when I stand up it's out and bulging. I keep leaking around the waffer because it breaks down from the movement of my stoma. I brought it up yesterday but it was like it's not soon enough in recovery to do anything about it. Not happy because at least when I was crapping my pants all the time I never had a leak like this.

 

[Archives1]

Oh my gosh what a difficult time for you!!! An ileostomy is so much more difficult than an colostomy I think in part due to how liquidity the output is? That stuff is like pure acid!! As I'm sure you already know when it does leak get it off your skin ASAP. What I do remember is getting the base adhered is vital to prevent leaks. We used paper tape - and ONLY paper tape- and would cover every inch of the base with it. My sister's bags had like a round circle on top that looked like a filter and had charcoal and very small holes for gas to release. Back in my patient care days, we would use a small diaper pin and pierce the front top area with very small holes to release the gas. But above all it seems that getting the area healed would be priority, yes? I have no doubt that there are much more intelligent folks with alot more experience than I possess. Maybe you can get some hacks from these folks and figure out what works for you. Like all of us on this forum- I am hoping for all the best for you during this transition you are going through. You know you really are an inspiration. And you are strong and you are brave. Hoping the rest of your day and evening are good to you.

 

[Archives1]

PS - unscented baby wipes became our best friend!!