Your surgeon needs to address your ability (or lack thereof) to manage your k pouch with the limitations your surgery has placed on you. An insurance clerk has no business “playing doctor” with the issues you are facing. Consider using olive oil or vegetable oil in an open container instead of Vaseline or KY Jelly to lubricate your catheter. I would also avoid vegetables that could clog your catheter (or puree them well) and foods that could thicken your output (e.g. potatoes, pasta, etc.).   Try emptying your pouch without assistance a few times before you are discharged home, and best of luck to you.

Hope you are O.K.  I am not sure, but I think there is a means or manner in which to appeal your discharge decision if patient is with Medicare...they have a form or such on your admission or discharge papers which allows you to appeal your discharge from the hospital and sate reasons why..you can stay in the appeal that you feel you are being discharged to soon..not sure of the process, but think you can appeal your discharge and request that you be allowed to stay as inpatient and receive care as long as needed. 

Also, whether or not in hospital, have you considered hooking up to constant drainage of k pouch...you would not need to intubate several times a day, etc..I know it is not really great to be hooked up like that, but it may help..and when hooked up, maybe stay on liquid diet...high protein stuff like boost, peptamen, etc, or just use blender and only eat soft foods, etc, so nutrition/food can get through system and pouch and drainage w/o probs.

Hope you recover soon, perhaps you may be better off at home, and you  will figure out the best way to manage the situation and may feel more comfortable at home..but if needed, there is a way to request to remain in hospital...

R

 Yes, there is an appeals process with Medicare. The gatekeeper here at hospital has said it will not work.  However I will start the appeals process on Sunday. In general you can stay one day longer, as Medicare will resolve the dispute in 24 hours.  Had I started it sooner and lost then I would be out of hospital on Saturday or Sunday.  I managed to drag out a couple more nights here at hospital  by getting the doctor, PT, OT, PA, Ostomy Nurse, and regular nurses lined up on my side--I  have had not much else to do here and I am generally a good negotiator. I trust my team will help me out when making the decision about rehab.   The caseworker on duty this weekend thinks I should go to rehab, so I'm looking more hopeful that is an option.

 I thought about hooking up to the leg bag and 24/7 constant drainage system. Because of the restriction on my arm-- no external or internal rotation – – I think it would be difficult to remove the leg bag or night bag,  drain it and clean it. I'd rather work on figuring out a way to manage the K with one hand. 

 Another thing to consider is that this hospital only  removes K  pouches and does not even do valve revisions.  There is only one ostomy nurse, who is helpful, but not experienced with Ks.  So far all the nurses have been very enthusiastic to learn about the K and very helpful.

 After saying all this, I'm thinking I want to gain my independence and figure out how to manage with one hand. A friend has invited me to her house and I would like to stay there for a week.  it would help out with the food situation and I'd be far more comfortable than in a rehab, such as look out at the ocean and walk along the beach.  And my cat can join me!

The change in food at hospital has thrown me off my game.  I think that's  under control now, not that I've eaten very much.  

 Will work on the IV bag system for  irrigating.  

Bill – – do you usually use vegetable oil  to lubricate? If so what is the advantage over lubricating gel?    I know Sharon uses carrot oil, but I couldn't find that in my stores. I keep going back to lubricating gel, with the only frustration being it falls off the catheter.  One needs to be quick.   I have far less pain now, which is only day two, and think the insertion will be easier.

Thanks for your suggestions, Janet

I have been using generic lubricating gel and squirt a small amount of it into an empty prescription container. When fresh, it usually coats the tip of the catheter sufficiently for an easy insertion. However, it has a tendency to harden in the container within a day or so. I read about use of vegetable oil in several other posts and thought it would be easier for you to use since it will completely cover the tip of the catheter, not harden, and be easier to use with one hand. Good luck!

 Bill – – thanks for your  explanation. I am captive here in the hospital so will stick with my lubricant and not venture into vegetable oils until I get home.

I Managed the entire procedure including irrigation by myself, and thought I would do better the next time when no nurse was watching me. But darn it all, I couldn't even get the catheter inserted.   These past several days the stoma has been raised and I just looked at it and it is also lopsided. I'm so worried that I've stressed the valve.    I decided to put the catheter down and to ice the stoma. I am thinking that the asymmetric appearance may have something to do with swelling.    Will put the catheter in the ice and then try again in an hour or so. 

 Can anybody provide me feedback on what it means to have the stoma raised and also lopsided? This has been difficult for me because of the shoulder, of course, but also the food is completely different, I'm out of my element,  and they have thrown this insurance silliness at me.  I greatly appreciate hearing from our support group. Thanks so much, Janet

Hi Janet, 

Well well...you pose a conundrum...

My first thought was a direct hook up using a colloidal patch against the skin and a plug on the end of it so that you do not need to walk around with an end bag...You just need to aim and pull the plug (and push it back in)...One handed should be manageable.

I use carrot oil because it comes in a tiny spray bottle and it is so easy to use...you can buy a little spray or squirt bottle (or have a friend buy one for you at the moment) at the dollar store...then fill with olive oil. It works just fine. I have a one handed flip-top bottle for lube (it was in the sexual lube section...I guess one handed is important in those situations) that I refill...also really simple.

I could imagine ways of stabalizing the valve with your bad arm/ hand and guiding it with the good one but that requires your hand/arm to be straped across your body and you being able to use your fingers. As long as you can grasp your valve between 2 fingers for stablility it should work...

Other ramdom thoughts are to tie a strap or ribbon (or one of those adjustable plastic ties that the cops use instead of handcuffs? They can be pulled tight enough to not slip and the end is long enough for you to hang on and you can wash them) around the middle of your tube and hang on to it with the bad hand and use the good one to guide it. 

Use a tube sling? 

You don't need to irrigate your pouch if the contents are liquid so drink lots of prune and grape juice and eat mainly proteins, soups and other easily digestible foods.

It isn't ideal but it could work over the short term for you.

A belt and a flange to hold the tube in?

A bulb ended syringe (like a turkey baster) that you can use to squirt into the tube one-handed. (beware of back-squirts...)

Knees. Hold the tube in/down using your legs or knees (you may need a longer and more flexible tube for this trick but your legs can help you.

That's all I've got..Except wishes for a very speedy recovery.

Sharon

ps. The dollar store is my favorite friend...walk around the cosmetic and baby ailes...I found 2 silicon, refillable bulbs/containers with flip tops with a sort of squirt top that I put coconut oil into (I use it too...I test a lot of different types of lube...only problem is that it thickens up in cold weather)...

Just look around and you may come up with some genius ideas.

Sharon

 Sharon – – thanks for your suggestions of which I could visualize most of them.  Do you think that a vegetable oil is better then the lubricant?  I've amassed a wonderful collection of spray bottles and containers.

  Switched to drinking prune juice, bouillon  and tea this afternoon.

I am very very distraught, which is  extremely unusual for me.  Usually I'm the problem solver and negotiator.  Am thinking of having the Ostomy Nurse,  Who will be in hospital tomorrow, put in the  same catheter that I had after the surgery. I'm not sure she has the supplies here to do that.  But assume she can get them, then I would go to the rehab center and let them deal with the routine of emptying the leg bag and managing the stoma.   That might be expecting woefully too much of the facility.  Hopefully this will give the stoma time to recover from whatever I did to it.  This sounds like I'm advocating for somebody to take care of my problem – – need to get back to reality

 Have you ever had a situation where the stoma is puffed up and lopsided? And if so is that a problem? I'm thinking I've messed up the valve because I couldn't insert the catheter on the last try. I'll see if they have a marlin 28 hanging around the hospital.

Thanks so much, Janet

 Did it! Yahoo, I feel very relieved. Latest addition was a tool that crimped the end of the catheter. Still thinking of improvements and suggestions welcome   Janet

Wonderful news!

My stoma is not flush with the skin like the old one is. It sticks out about 4-5mm (and 8th of an inch?) and is sticking its tounge out a bit at me.

Every time I saw it that way for the 1st years I panicked but since have come to understand that this is how it is...the tissue inside stretched or was pulled when my valve went crooked and some of it sticks out...It still works so I am not going to complain for now. 

You need to do what is best for you and your pouch...keeping the tube in for a prolonged period of time may be helpful for your valve so take advantage of the situation if you can...

ps....Heal

Sharon

My next try at intubating was a disaster. As was the next. 

I have spent the entire day dealing with Medicare  bureaucracy, nurses, PT, OT, and very many opinions. It's been exhausting and confronting. At the end of the day somebody decided I need  A blood transfusion.  I had planned on going to a friends home for rehab, but now I will stay the night in hospital.

The surgical nurse at Cleveland clinic  suggested I use a nipple from a baby bottle, open the whole a bit, slip it over the inserted  catheter and tape the nipple to my body. I should crimp over the catheter so that the stool doesn't come out and evacuate when I need to. I can't totally envision this   But will try tomorrow. 

Maybe when I get new blood I'll be able to think clear. Janet

Janet, 

That is a very good system.

The way it works is this...if you can ask the ostomy nurse to get you a flange and a belt.

You attache the flange and belt and then push the baby bottle nipple through the hole. Some people tape it in, others (Mt Sinai hospital) sew it in.

You then push the tube through and plug it + crimp the end with a clamp. (you can also use tape)

Once you have it set up you will be fine.

Then you just unplug when needed and empty into the bowl.

There is another way of doing it but that is the best because you don't need to tape anything to your skin.

Keep trying...you will get it right!

Sharon

 I asked for the flange and have that ready. What is the benefit of the belt and how would I attach it to the flange? 

What do I use to plug the catheter?

i'm still worried that repeated intubations, which were not done very well, have damaged my valve. The nurse brought me a new catheter and I think it too  added a tad bit of damage

 I'll be happy to no longer be the animal in the zoo i.e. the nurses watching me. What really gets me is when  they  say: now that's working  properly,  when 15 minutes before they didn't even know how the K operated. I've been here too long. Time to go home. Janet

Janet,

The flange has two little hook-up thingies on the sides that should hook to the belt (it is sold as a unit in one box I think)...the baby bottle nipple gets put in from inside towards the outside so that it fits snuggly...you can superglue it in for security if you like...then slide the tube in after it...the advantage especially for people with sensitive skin is that there is no taping of tubes onto the skin...the belt holds things tight against you.

I use 2 differnt kinds of plugs...they gave me these green scorred ones in the hospital...they look like cones with a little thumb-handle to pull them out but you can use the tip-cover of a 60cc syringe which works just fine and is the perfect size.

I still taped things down only because the tip of the tube stretches out over time and then with gas build up...Boom!  A rocket!

Keeping the tube in for a while will help the valve to scar around it in the right position.

Keep lots of gauze wrapped around the base to absorb the yuckkies and change often. You can tie a piece of gauze to the end of the tube and then attach it to the side of the belt so that it doesn't stick out

Normal intubation should not cause damage. If you are damaging it then something is not right (I know that it isn't but am not sure why yet)...

Keep up the good fight...you are doing great!

Sharon

I'm so sorry you are going through this ordeal. I think everyone has provided great ideas and my first thought was to install the constant drain tube/bag- just like after surgery. Of course irrigating is hard, but it appears you have managed. My stoma is typically flush with the skin, with the exception of a small roll above- surgery settled & I am not stick thin. My thoughts are with you Janet, this too shall pass.