Let’s Talk Poo

I bring this up because we had a “poomadeggon” around here tonight. I had to take a shower, and change my ostomy bag. So, I get in the shower, with no bag on. Poo happens. I wash it down the drain with the shower head. I continue my shower, and look down, and there is some more pesky poo in the tub. EWWWWWWW! I wash it down again. Finally I finish my shower and get out of the tub. 

I am standing there near the toilet, because you know, no bag, and knowledge that the stoma is active. If I stand near the toilet, whatever comes out will drop into the toilet, right? That is unless the shower head falls off the holder, and scares me. I jumped, the stoma spewed all over the place. I started crying. Fabgrandpa came in with his shirt sleeves rolled up. He got all the poo up and cleaned up the toilet, the floor, took the rug out to the back porch, and went back to the living room while I got things under control with my stoma. Got the new bag on, and I went into the living room. Sniff, sniff!

I caught of whiff of something rather POO smelling, so I started looking all over myself, looking for poo that escaped the cleanup. Not on me. I smelled it again. Looked over there and it is on Fabgrandpa’s foot! He had stepped in it! So, I told him to go in the bathroom and wash his feet in the tub. The shower head wouldn’t reach his foot. So, he came back in the living room, I got a towel and some wipes, and got him cleaned up. Finally, Poomageggon is over. 

This is just a day in the life of an ostomate. Be thankful every day that you don’t belong to this club! 

The Road To Reversal Is A Dead End

Have you ever experienced one of  Those Moments? You know, the ones where you realize without a doubt that what you want is out of your reach? That happened to me today at my appointment with The Best Doctor In The Universe. For simplicity’s sake, let me just call him TWOO, short for TheWizard Of Oz. Why? Because, in That Moment when TWOO was telling me the reasons why I can not have the reversal surgery done, my brain started playing a loop of the song that Dorothy, the Lion, The Scarecrow, and the Tinman sang as they danced down the Yellow Brick Road towards Oz:

“We’re off to see the Wizard, the wonderful Wizard Of Oz! We’re off to see the Wizard, because , because, because, because, because, because of the wonderful things he does!”

While all of that was going through my head, as soon as I realized what  TWOO was telling me, my throat started closing up, and I couldn’t breathe. I started crying and couldn’t stop, and I couldn’t say anything to anyone because I had no air in my lungs. It was as if The Best Doctor In The Universe had reached down my throat and grasped every ounce of air I had in me, and yanked it right out, along with every last hint of Hope and every last moment of Joy. For those few minutes in The Best Doctor In The Universe’s office, I felt the complete absence of all three of those elements of life.

I don’t know what the opposite of hope is. I wouldn’t call it despair. No, it was just the lack of hope for what I wanted for myself.

And the truth is, he didn’t actually say NO, you can not have this surgery done. What he actually said was “Because of your diabetes, because of your weight, because of your three prior surgeries, because of the extent of the surgery necessary to make you whole again, there is a 20% chance you could die on the operating table.” And while an optimist would say that that leaves an eighty percent chance I won’t, I can not put my family through the worry and angst that I might not live through it.

The Best Doctor In The Universe was truthful and blunt, just like I think a doctor should be. I don’t believe that any doctor should make you think things would be ok if they might not. Especially if that doctor is The Best Doctor In The Universe, TWOO, and has done acres of research into the thing you need to have done.

After The Best Doctor In The Universe left the room with his entourage of interns and medical students, an RN sat with me giving me some options for pain management, light exercises I can do for movement, suggestions for some psychiatric follow up. I couldn’t stand up and walk out of there anyway right at that moment, because I was too blown away by what had just happened.

So, Fabgrandpa and I got in the car and drove back home. I will be calling in a day or two to set up appointments with the Pain Management Clinic in Carrollton, as well as looking for a psychiatrist who specializes in helping people who have had drastic changes to their bodies. It is what I can do for now.

So, my question for you is: is you had something wrong with you that needed to be fixed, but there was a 20% chance you would die if you did it! would you go ahead and do that thing! or would you say No?

 

 

Christmas Was Early This Year!

My followup appointment with Dr. Sharma, the gastroenterologist, on December 22, went very well. He said the pictures from the gastrografen enemas were normal. There was no indication of polyps, tumors, or other abnormalities. And, there was plenty of gut left to complete a reversal of the colostomy.

He told me he would refer me to Dr. Galloway at Emory University Hospital, who is a top notch surgeon, and who has done lots of research into abdominal wall reconstruction. To me, that was such a wonderful Christmas gift! I was so excited to just be able to be seen by Dr. Galloway. Dr. Sharma said that I should receive a phone call from Dr. Galloway’s office to set up an appointment.

On December 23, Gail from Dr. Galloway’s office called to discuss the appointment with me. She said that Dr. Galloway has looked over my records and agrees that I am a good candidate for abdominal wall reconstruction and ostomy reversal. He likes to schedule patients for a CT scan on the same day as the initial appointment, but that if we wait until there are time slots available on the same day for both the lab and the doctor, it would be January 3oth before they could schedule me. However, if I was agreeable to making the 85 mile one way trip twice, they could schedule the CT scan on Saturday, January 3 and then the appointment with the doctor on January 7th. I guess you know what I said!

So, between now and January 7th, I have to drive over to Carrollton to Dr. Griffin’s office to pick up the test results to hand carry to Dr. Galloway. Not that I am looking forward to the actual surgery, but I am so excited that this is going so quickly so far. I am really close to having my colostomy reversed and getting my abdominal wall reconstruction surgery.

I am trying to keep my hopes low, in case there is any problem that would cause me to not get this done. Please keep  your fingers and toes crossed for me, and say a prayer if you are a praying person.

The Road To Reversal

The next step towards getting my colostomy reversed was to get a Barium enema. The doctor wants to see if I have enough tissue to reconnect. Is so, then I can have surgery to reverse the colostomy. This part really started yesterday, when I had to drink all that disqusting GoLytely stuff. It seemed like it was a gallon of it, and it tasted nasty. I was wondering if I could have put some Tang in it to make it taste better, but I didn’t have any so it didn’t matter. I just finally told myself that it was Alka Seltzer Cold Plus and chugged a glass every ten minutes like they told me to.

After a little while, it started to work. This where it got fun. I had to figure out a way to hold the end of the bag while I took the clip off, and only had one little mishap. And for those of you who have a colostomy and are going through the process to get a reversal, if you do have to have a prep, there is a little while there that it just goes and goes and goes. I had to take a chair into the bathroom so I could sit at the toilet and just let ‘er run.

I finally got all the prep done. We got up early this morning and went over the the radiology department of the hospital. The doctor had told me and my orders stated that I was to have an “air controlled barium enema in rectum and stoma”, but when I got in there, they decided to use gastrografen instead. That was a good thing, because they could use less of it, and it would be less of a problem to clean up afterwards.

I had to get completely undressed and put on two hospital gowns, one on opening in the front, and one on opening in the back, so I was fully covered. Then, up on the stainless steel table that was so cold! But, the lab tech brought me a warmed blanket and that was awesome. Then the fun began. I have to say, I cried like a little girl, tears and boo hooing and all, because that rectal thing hurt so bad. The radiologist said, “Well, you haven’t used that in two and a half years, so it’s going to hurt.” Yeah, but they could have been a little more gentle, and used a bit more KY. That was one of the most painful lab tests I have had done ever, and I hope I don’t have to do it again soon.

When they finished, they put an adult diaper on me, and just so you know, I was glad they did. I did not want to have that stuff all over me to clean up later. Next, they went for the stoma. I was expecting it to hurt like the dickens as well, but it did not hurt at all. I didn’t even feel it. The assistant had to stand next to me and hold the cone in my stoma while they moved the table and the x-ray machine, but we got it all done. I asked the radiologist if I had any guts left, and he laughed and said, “You have plenty. Enjoy your surgery.”

The next appointment is on December 22, with the gastroenterologist, to discuss the surgery options I have. That will hopefully mean that I can have the reversal done, and that it will be done at Emory Hospital, just like the surgeon told me. We’ll see.

Would you go through all of this voluntarily to have surgery to reverse a colostomy if you had one?

 

The Road To Reversal

The main reason I was so happy to finally have health insurance coverage was that I could finally, after two and a half years, start the conversation with my doctor about getting my colostomy reversed. That conversation started this week. The first step in the process was going to my primary care physician for a referral to a specialist. Dr. Howell referred me to Dr. Sharma, a gastroenterologist.

My appointment with Dr. Sharma was yesterday. He did a short examination of my abdomen, poking and prodding here and there. Then we talked about what would happen next. Dr. Sharma said that because my initial surgery was so complicated, the reversal would also be a complicated surgery. After the surgery to reverse the colostomy, I will need a second surgery for abdominal wall reconstruction.

Before we can even plan for the surgery, though, the doctor will need to send me to a surgeon for a consultation, and for some tests to determine whether or not I have enough colon tissue left to do the reversal of the colostomy. If the tests show there is enough tissue, then the surgeon can proceed with surgery.

Dr. Sharma referred me to Dr. Griffin, and my appointment with Dr. Griffin was this morning. He said that the first thing he would do is schedule me for a barium enema. Well, TWO of them. One through the rectum, and one through the stoma. They will then be able to see my intestines on x-rays, and this will let them decide if there is enough colon remaining. If there is enough colon, Dr. Griffin said that he does not feel qualified to perform the reconstruction surgery, due to the complexity of my case.

If we get to the point of doing the surgery, he will refer me to Dr. Galloway, a specialist surgeon at Emory University Hospital in Atlanta. He is well known in the medical community as THE doctor to use for complex abdominal reconstruction surgery. That made me feel much better about having this surgery done. Dr. Galloway operated on my niece several years ago when she had an abdominal blood clot. She also had a complex case, and she is now doing very well.

My next appointment, for the barium enemas, is on December 3. It’s only three weeks away, but it seems like an eternity right now.

The Number One Reason I Am So Happy To Have Health Insurance Starting On November 1.

These are quite expensive

These are quite expensive

Do you know what that is in the photo above? If you DO, then you know that they are expensive, and that they are quite necessary for the people who need to use them.

The photo shows the ostomy supplies that I have had to use since I had my surgery back in May of 2012, and received my colostomy. The flanges, or the larger squares that attach to my body with a very sticky glue, cost anywhere from $51.95 to $65 for a box of 10. The pouches, about $25 for a box of 10. Add to that about $10 for a tube of stoma paste, and another $10 for the skin barrier spray.

Now, I want you to think about how many times a week you change your underwear.If you had to pay $9 for a new pair of disposable panties every time you changed, would you be able to afford it? Would you still choose to change as often as you do, or would you opt to try to stretch out the length of time you wore the same pair?

If you are a person like me, who has a colostomy, you have to decide if you want to change your appliance every time you have to empty the bag, or every two days, or just once a week. For the last two and a half years or so, I have had to make this choice. The company that manufactures the appliances I use will send a complimentary supply once a year. What they send is 30 flanges and 30 bags. I have had to use those for as long as I could make them last. They don’t advise using one for more than two or three days. I have had to use mine for at least a week at a time. That is, if I don’t have a blow out, and I don’t think I have to tell you what that means.

Now that I have been approved for Social Security Disability, I am eligible for Medicare on November 1, even though I am only 62. I went to an insurance agent in Tallapoosa last month and signed up for Humana Pro Choice PPO which is a MAPD. MAPD means it is Medicare Advantage Part D, which will cover my prescriptions as well as my health care. Now before you all start hollering that I am getting something for nothing, let me say that Social Security is going to be taking $104 a month out of my disability benefits to pay for Medicare, and my Medicare Advantage Plan thru Humana will cost me another $5o a month, which I can also have deducted from my disability benefits.

So, for a total of $154 a month, I will have health insurance, that will have co-pays: $20 for each primary care physician visit; $45 for a specialist; $65 for an emergency room visit; and $270 a day for the first 4 days of a hospital stay. This is not the best insurance I have ever had, but it what is what it is. It means I CAN go to the doctor when I need to. It means I can also go to a specialist, like a podiatrist (I am diabetic, so I need foot care); a gastroenterologist, so I can talk about getting a reversal of my colostomy; and a dermatologist for some skin issues I have.

Having this insurance also means that I will only have to pay a 20% co-pay for my colostomy supplies. I can get up to 20 sets of appliances per month, so I won’t have to wear the same one for a week or more. I can not tell you how this one benefit makes me feel. It is a matter of self worth, of feeling clean, of feeling like a human being again.

There are many people like me, who are younger, who don’t qualify for disability, who don’t make enough money to qualify for health insurance through The Affordable Health Care Act. Those are the people who were supposed to be caught in the safety net of expanded medicaid benefits through their state. Unfortunately, Georgia is one of the 19 states that opted out of  expanded medicaid. That leaves about 974,000 low income people in this state who have no health care options.

I wish I could help all of those people get some sort of health care coverage. I know I can’t help them all, but I have been looking for a way to start a fund to help people who, like me, have a colostomy and need to buy expensive supplies every month. If you have any ideas, please let me know. Because every person should be able to live their life with dignity.