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Hello from the Bourbon Country!  

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wcnmom
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February 12, 2019 5:35 pm  

Lets see where to start about me. Kinda hard to talk about me with out mentioning my fiancée. See he is the one with the Ileostomy. We spent almost all of 2018 in the hospital, due to complications from diverticulitis. I've lost count on the number of surgeries and procedures done and trips to the ER.  He was septic twice. The second time he almost died.

      That is how my story started. I have become a full time nurse for him. Without the pay. :(  I do everything for him. But I have not been to school for this. What I know is from learning in the hospital. Seems like everything I do its wrong. From the leaking to not emptying it enough. Im at my wits end!

      I put hello from Bourbon Country because I live in Nelson county, KY. Home of some of the best bourbons and whiskeys made. I've lost track of the number of distilleries in our area.


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john68
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February 12, 2019 5:54 pm  

Hi Wcomom, Welcome to the forum, The earlier days post surgery are going to be the worst. Some of the information given by the hospitals spans the scale from excellent to terrible. The internet has lots of advice form different advocates but where VeganOstomy  is different is that it really is a "One Stop Shop" of information, help and discussion which will cover every aspect of having an ostomy. Please post any of the issues and concerns you have and follow the posts and information Eric has produced. Life can be and is normal with an Ostomy. :-) 

ileostomy 31st August 1994 for Crohns


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wcnmom
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February 12, 2019 6:01 pm  

Thanks! We have been dealing with this since the summer. He has already had it reversed once. The second one was put in Dec.


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VeganOstomy
(@veganostomy)
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February 12, 2019 6:18 pm  

Welcome to the forums, wcnmom! I'm sorry to hear about you and your fiance's challenges, but I know that things will get better.

Do you have access to a local stoma nurse who can help to troubleshoot things? You might find that once things are in place and his ostomy is being well managed, things continue to improve quite rapidly with only a few tweaks along the way (generally speaking!). 

Please, make use of the forums as you like. We're glad to have you here. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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February 12, 2019 6:38 pm  

Welcome from me as well.

You will get the hang of this there is a lot to learn but like Eric said above, once you have it sorted out things can improve dramatically. Caring for another can be a special challenge. My husband was there for me through the whole journey. NEVER under value your love and support. I would not have survived without my husband. 

And, if there is plenty of bourbon in your area, it just might help ( you, not him).

Keep asking questions.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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LLNorth
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February 12, 2019 9:44 pm  

Hi, wcnmom. I am fairly new to the forum, too. Ostomy care improves with practice - that is easy for me to say,  but I have found it to be true. My stoma nurse was a big help getting started; I hope you can be in touch with one. Best wishes to you. Linda

I love the smell of coffee in the morning. It smells like .... victory.


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LK
 LK
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Posts: 466
February 13, 2019 5:47 am  

Welcome wcnmom and fiance'...If you are comfortable with it, why don't you let us know the circumstance around getting to where you are today.  This has a lot to do with how you accept what is going on in your situation. Also, what the skin is like beneath the pouch and what supplies you have on hand. Take a really deep breath. Except for a good stoma nurse, we will do our best to help you here. Sometimes it can take  day or two to get a reply from someone familiar with your situation. A stoma nurse is a great start as Eric suggested. I did not have one, and like you and your fiance', I was sent home with little to no info & some supplies. Not one nurse told me where to get them and what they were for or what the cost, or what was covered and what was not. Your pharmacist should be able to tell you all of that.  Just know that things will and do get better. It sounds like maybe a step by step plan for caring for the tummy and changing and emptying the bag may be needed here. To start you off, you will need a good doctor or stoma nurse to guide you along should tummy sores or a rash develop or issues with the stoma itself. Trust your gut instincts. Confidence is a huge part of living well with a stoma. It is and can be done. I can give you a step by step, but I would first like to find out how your mans skin is doing beneath the  area the bag is on and the function of the bowel. What type of bag do you have? Skin is a big concern because if a sore or a rash develops it can be very uncomfortable and annoying and sometimes hard to heal most of us have had sores. One of things to know is whether you have the correct supplies to help prevent this and to encourage a normal life. In time, and I am sure with the confidence you have increasing,  your fiance' will be able to mange all this on his own. You deserve a gold medal for stepping up to the stoma. You are not alone in that. I like to tell myself as often as I need to, that I am okay so far. Also encourage your man to choose a name for your new little friend. It helps you to accept it better I find. Mine had a few names, 6, but I settled on 3, and then Rose, that was about 3 years ago but it started on 2009. You can get by on some of the most basic supplies. I use a plastic grocery bag with no holes to collect what is discard when changing a bag. Eric has many excellent videos to watch and learn from. Watch as often you need to. Regardless we are here for you two and this is the purpose of Erics site. We have all had leaks and a disaster or two. You will get thru them. I found that having on hand the same supplies at home with me when I leave the house works well.  At first the "yuck" factor crept in loud and clear. Not anymore. I find it is second nature to empty and change a bag. If you wish, buy some of the exam gloves from the pharmacy. If I have eczema on my hands I will wash and wear them lie I use my hands.  Scissors with a bit of flat disc at the end are ideal for cutting the hole to the size you need. You can buy them on one of the sites or a in a larger area, a local pharmacy. Eric gives a list of companies here to compare the prices and availability here somewhere. Occasionally a company will give you a free pair. It is good to get  samples if you can if you are not sure what you prefer yet. I went with two samples at a time to not get overwhelmed by what is available to try. Eric has a video for that also. If you are happy with what you have for know, take your time to heal up from the surgeries and most  companies are very willing to send you samples. I did not know that until I found "veganostomy". Eric is my hero!To start you off, set out all your supplies that you know you need and open the lids.  You will need those scissors ( less risk of cutting in the wrong place),then a used plastic grocery bag for tossing what you need to toss. Adhesive remover wipes and or the spray, along with the skin barrier wipes and or spray. I use both now. I also found that having the stoma powder for a rash or a sore was ideal to help it along with healing. If you have something going and do. I know that too much info can be stifling so I will stick to the basics for now.  Measure frequently when healing especially, to help prevent problems. Do not make the hole too small a rad bigger is best. Eventually you will recognize when you need to change the size as when healing it can make subtle changes that do not make a difference to the opposite. Mine is D shaped pointing down now. So it is important to check even after healing. It does not make a difference what supplies you buy, it is what works for you. I still will buy bar towels at the dollar store and cut them in 2 inch squares so I can give a gentle massage to the skin when the old bag is off it feels good to give it a gentle massage. At first it seems like the guts are always moving but know that they will settle down. I find the best time of day to change the bag is first thing in the morning after only a sip of water, or my guts start to work before I can get to them. Keep a journal for recording when his guts are resting and as they move through out the day, even the approx amount and texture is a good thing to record. Also a food diary helps to track foods that may have caused a problem.  Also the skin and how it is and then how long an issue has been going. Have a list of medications on hand in case you need them in a hurry. Include vitamins and food and drug allergies.  Because of my health, I have had ambulance rides several times and they always thank me for being so prepared. They can photo copy it at the hospital  and give you back your original. Always ask for it back as soon as they are done with it. Doctors and nurses and paramedics appreciate a calm organized setting when new patients come in and that info is vital to your loved one. I have mine on large recipe cards and keep them in a red envelope with "Emergency Info" in black on both sides. As a retired nurse, when we had an unconscious or critical patient without family around, their back pack or purse is gone thru to locate info and a name. Because of circumstances I keep any money or cards in different places in my purse, but my health card and ID are always in my wallet. We went for that first. They are often in a hurry so they are usually very honest and respectful.  You want them to have that info ASAP. Also on the cards is my medical history and contact info for family, and family doctor. You can shower or bathe without the bag on if you like, but mine seems to always run so I can not. It is okay t touch and move your stoma and to clean it off too. So, with a bag change we strive for a clean dry surface for the new bag. When I remove the old bag, I like to wrap something around the stoma to help keep any output from falling on a clean area of skin. Use what you need of the wipes especially the remover. I usually find that they slip over the skin better when the residue is removed. Fan or blow on the skin to help it dry if you need to move faster. Measure the stoma when it is all cleaned. If you have trouble on the size, say so and there will be ideas from myself and others to help you. See Erics video on the changing if you have a hairy tummy situation. I use the cloth piece here, and once the skin is clean and dry, use  what you need of the barrier wipes. I will use about two or three, it a; depends on what how the skin is from the last bag. If you feel you want more protection then use more but let it dry between and dab it, do not rub it. I used too much one time and the bag was not secure in some areas. I tend to use the spray at a bit of  distance and then if it is too wet in an area, I use a wipe to slightly mop the skin. It can take a bit longer to dry then the remover, fan the skin to move it along. When you go to put the new pouch on, I like to fold it backwards away from me to line it up on the underside of the stoma. If my stoma is looking wet, I will take a Q-tip and try and dry it without getting too  much fuzz on the pouch plate and I will also help it very gently in the hole I cut. This keeps the surface dry and i found I get a better stick then not drying that part of the stoma. All it takes is a little moisture in the wrong place and it can invite output to sneak under and give you a leak. As soon as it is in place, I will work on gently applying pressure to the hole edges I cut and then work to the outside of the bag. Then I go back to the hole area again until I feel it is a good secure feeling. Then remove the tapes papers and this is where I learned too late about the Bravo, elastic barrier C shaped tapes. I place that on and around the edge that is a little harder then the cloth area. It fits to about a 1/4 " or less on the fabric part to give a little extra support in the case of a leak. It also protects my clothes, in case of a leak and has given a bit more time to get to the washroom. If you need the eakin cohesive seals, make sure you apply that before the bag. If you use deodorant in the bag, M9, Hollister, is a really good brand, but  I do put them in a squeeze drop type bottle. In this small town it is hard to find some things so I save  fair deal of bottles from things that have come in they are always helpful. I use a saline sinus mist bottle for this product. I count every single drop I put in the bag. I found that for me 20 drops per bag gives the best result,  you will figure out what works for you. What you eat may change the amount. The large bottle of M9 lasts me one month. So, how is that for now. If you blow these posts up it may be easier to read quicker. Lets us know if you have any question or concerns. Everyone likes to help. All the best to you and your fiance'.

Linda K.

Linda


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