UOAA Discussion Board

When I initially went through EMT 1A training in 1983, there was no training whatsoever regarding those with ileostomies, colostomies, and urostomies. I had to re-certify every two years in order to maintain my license as an EMT Professional as well as update my skills and take continuing medical training to maintain the license. With every course I had to take, not one of those courses had any mention of ostomy patient diseases. Yet there were severa ostomy patients in the U.S.. That was before I received my ileostomy in 2007. Finally in 2011, the instructor on a film slide we were watching about medical emergencies, a couple of sentences were stated about those that had colostomies! What happened to Ileostomies or urostomies? And why only a couple of sentences were stated with no intense training on that situation like we had with all other medical situations? So, in 2011 in my course, after those 2 sentences were stated, I immediately raised my hand and stated to the instructor, who knew privately that I had an ileosotomy, that in fact there are colostomies, ileostomies, and urostomies and that there numerous people in the U.S. and world population that have them. My instructor then stated a few more sentences about rescuing those with ostomies in the field like with vehicle collisions and other accidents and I went on to state that there definitely has not been enough training in the medical field to understand those types of diseases and injuries that results In somebody receiving that type of surgery. I hadn't shared at that particular time with the students that I had an ileostomy, though as time went on, I shared with a few select students that I had an ileostomy bag on my abdomen when we were practicing our skills on one another and how to best work with a person when rescuing them in the field.

My experience since my ileostomy surgery in 2007, has been one of shock and disbelief at the lack of knowledge and training that goes into training nurses, and physicians in regards to ostomies. I had thought as an ileostomy patient that all nurses and physicians had training in those diseases and surgeries, and boy was I ever wrong! I have had nurses and doctors not know the first thing about my ileostomy when I landed in the ER with a few blockages after my surgery for a few years. I even had a doctor who wanted to clear my blockage by putting his gloved finger in my stoma to clear the obstruction! I told him absolutely no way I was going to allow him to do that since he could further cause the food bolus to further obstruct my small intestines higher up, which would result in causing my intestine to rupture or further complicate the obstruction resulting in another major surgery. I finally had a tube put in my nostrils and all bile flow into a vessel to capture the bile backing up into my stomach. On one of those occasions after a couple of days of collecting bile, a Radiologist performed a procedure under camera view where he scoped my ileostomy through my stoma and he stated that he couldn't go any further to break up the blockage since a stricture or some foreign object seemed to have obstructed his view further into my small intestine. I finally told him I want to be transferred to UCLA, a University Hospital in a different city where they were very skilled at colorectal surgeries, since the local hospital wanted to put me under the knife! I told them It is UCLA that I will allow to further treat me. With tons of fighting with the hospital surgery dept., and with the help of my primary and gastroenterology doctors they finally realized my situation was urgent and that they had to transfer me to UCLA, the only hospital I would allow to treat me. I had to sign a waiver telling me I understood the risks of being transferred to a further hospital since time was crucial.

When I got to UCLA, the University ran numerous tests which the local hospital never ran at all, and it was determined by UCLA, that my small intestine was ruptured and that I was septic since my intestinal contents were spilling into my abdominal cavity. Anyhow, I will never know whether the local hospital Radiologist had punctured my small intestine when he went In with a scope, or whether the food bolus ruptured my intestine.

Anyhow all I am attempting to state here is that there is not enough training regarding ostomy surgeries and diseases requiring ostomy surgeries in any branch of the medical field at all, from EMT's to Paramedics, to Nurses, and finally to Physicians! Those of us with ostomies have to be our own advocates and if we don't have the knowledge to advocate for ourselves, then we absolutely have to have somebody we trust with ostomy medical knowledge, to advocate for us.

Yes I agree.

It's the constant dealing with human waste most likely.

I hope I die before being unable to take care of myself because hardly anyone really wants to do this sort of thing.

But yea don't let them stick anything up there unless it's a soft jet of water like an irrigation.

And the problem is doctors are telling people "yea you can eat whatever you want" or not informing them about stuff that clogs. For me it's vegetables, fruit and tough parts of meats. If course the usual like nuts and seeds.

Heck I ate just a small amount of green beans today, chewed them well so I thought, but it blew my new wafer clean off. They are $25 a pop!

Some days I think I was better off dead.

But it's been two years and although not perfect I'm closer every day.

22Sun, what an interesting post you made, thanks!

It's true that one must advocate for oneself if something feels off like your transfer to the better hospital....

For me, after being hospitalized with a small bowel obstruction likely due to an adhesion which the attending chief colo-rectal surgeon said was probably not due to my ileostomy, I was referred to a GI doc for follow-up....I hadn't seen a GI doc in years as I have had no issues. Anyway he wanted to do an ileoscopy which I had never heard of. After researching and learning it was usually done with Crohn's patients which I did not have, I refused. He then referred me for an MRI which came out fine....

Hi Mara,

You are welcome, Mara! I would be so terrified to have an ileoscopy after what happened when the Radiologist scoped my small intestine and then I found out my small intestine ruptured at UCLA. That was a wise decision you made. I just had a Sigmoidoscopy a few days ago to check my retained rectum and few inches of colon that are sewed up to my sacrum to see why I am having mucous discharge so frequently, and it was determined that I have disuse colitis and the gastroenterologist is prescribing some kind of medicinal enema to treat the colitis. After the procedure, I bled for 2 full days and had such severe pressure in my rectum with mucous discharge for 2 days, since the physician injected air in my rectum and few inches of colon so she could view them with a scope with camera. So it definitely hasn't been a fun experience, although a very necessary test.

Hi Shamrock,

I hope that I can manage my own ileostomy for the remainder of my life, as well. I think about that fact at times, too.
And I hope I am able to live a very long time and be healthy enough to continue to live independently, as I would never want to be taken care of by another person, especially a nursing home. My Mom doesn't feel like she can manage her colostomy bag changing on her own, so my brother and I have been changing her bag for her. Luckily she has her 2 kids to help her.. I don't have any kids, so I understand how you feel very well.

I agree that health care professionals should receive a lot more training regarding ostomies and ostomy care! Interestingly enough, whenever I've been hospitalized the medical staff has always been interested in learning more about my situation because the education they received on the topic was sparse. I was popular with my postpartum nurses after each of my kids because they'd never encountered a patient with an ostomy before, and after my last resection my surgeon asked if a group of med students could come in and ask questions about my ostomy and why I have it. It was a little intimidating but I said yes, figuring I'd do what I could in the name of education.

I've had a stoma for 30+ years and have become more and more open about it all the time. There are a lot more people online (Facebook and Instagram) who are very open about living with an ostomy, and I think that's great. I hope that is part of a larger trend of spreading awareness in general, whether it's the general public or medical professionals or whoever.

I also truly hope that I'll be able to care for my ileostomy on my own. I'm sure I could find someone else to help if I needed it but I don't want to.

Hi Danica,
I love your experience and story! That is great that the surgical team requested that you offer the medical students your experience and knowledge regarding your ostomy! It is great when the medical profession learns directly from their patients, after all, we have more experience than any textbook would ever teach them! Nice work!
--Jayme

The difficulty with someone else doing our ostomy is obviously lack of individual experience and no pain feedbacks.

It's why I'm extensively documenting my exact procedure for others to follow less I'm incapacitated.

Laying flat on my back is usually not too much of a problem, it's when I'm sitting up or moving as it's in a belly fold so more attention to details are required.

And unfortunately hospitals etc. use a lot of alcohol to clean and sanitize the area but unfortunately had the negative effects of causing dryness and severe irritation.

Hi Shamrock,

That is really a great thought to document all details of your ileostomy bag change in case of the situation where you can't manage it on your own!
I am in a standing position when I apply my ileostomy wafer, as well as when I tape the wafer to my skin. My Mom, when I change her colostomy bag, is lying on her back. I find that standing up when I change my ileostomy bag allows my skin, even with the 2 slight folds I have on my abdomen, to seal to my skin more properly when I am standing. Then when I sit it conforms to my folds more accurately, both when I stand and when I sit. And when I stand, my stoma protrudes father out so it allows me to apply the wafer much easier and to prevent leaks! I fan my stoma with my hand, so that the cool air will cause the stoma to protrude farther out before I apply the wafer, so I will have a secure seal. I find when my abdomen and stoma are warm, and it is warm in my home, the stoma lies flatter and isn't great for applying the wafer. I have also done something since I received my ileostomy surgery that no nurse ever taught me after my surgery.. After I get all of the sticky residue off my peristomal skin, and wash the area with baby shampoo since it doesn't cause a soapy residue, rinse, and dry it, and then I apply a thin layer of rubbing alcohol to my peristomal skin so that the wafer will stick really well to my skin. I don't like to add several ostomy products to my skin as less is far better for my skin than more.

I use oil free eye makeup remover as an adhesive remover because it works better on getting pectin based paste residue off the skin which will interfere with the next paste adhesion.

But to remove the slight greasy feeling of the eye makeup remover, despite it being oil free, I use plain ivory soap and wash and rinse it a few times until the skin is absolutely squeaky clean when I rub it with my fingers. This discovery has been a huge game changer for me, now my paste sticks to the skin so well that I have to scrape it off using the flat side of a butter knife and my fingernail a little.

What I think is there is the deep skin tissue that needs to be moisturized and then the top layer where it's adhered to the paste needs to be really, really clean and oil free.

So doing the skin moisturizer first, so it gets down deep, then washing the surface with something that doesn't leave a residue is the way to go.

Alcohol anything just stings the wounds, drys out the skin, including cheap alcohol based pastes like Adapt.

I don't have any lingering pain after my wafer is applied, don't feel anything for about 2-3 days depending upon activity.

And standing up allows gravity to act before things have had a chance to bond, so I find just laying on my back for a few hours afterwards gives better results.

Paste will run, especially where it's just a little too thick in certain places, places we can't see because the wafer is in the way. Achieves the same effect as standing up, flattens the belly some.