With the aid of all of the medications I was taking i.e. prednisone, salofalk and immuran etc. I was finally in remission. Hallelujah!
But it didn't last for very long. Each time I tried to wean off of the prednisone I would get down to 10mg or so and the Crohn's Monster would flare up again. This went on for a while and it was really disrupting my life.
Finally my Gastro and surgeon came up with a plan. We had tried the medications for two years, and it wasn't helping so it was now time for a surgical intervention. This is a picture of my pre-surgery tummy, never to be the same again. I was to be hospitalized through the weaning process, taking me down as low as was possible in order to have a bowel re-section, my first one. There were also many tests to be run and it was easier for scheduling them as an in-patient, they were done faster than if I was at home. The picture from my last post with the TPN was taken during this hospital stay.
As the weaning process went on I became much sicker and was in tremendous pain. I had been in the hospital for a while (again on the geriatric ward, but a private room this time, no one wanted me to lose another room mate again) and requiring pills and shots for the pain. My doctors didn't want my body to build up a tolerance to the medication since I would really need it after the surgery, so I was given the old "don't take the shots unless it's absolutely necessary" talk. That didn't bother me at all. I wanted them to work when I needed them too.
One of the tests I was to have was a Barium Enema, or a Lower GI test. These are done to diagnose diseases of the colon or to check on progress of an already diagnosed illness. Barium, a contrast material fills the colon and x-rays are taken. There are two types. A Single Contrast is when the barium, through a tube, fills the colon making it easier to see the outline of the colon and larger abnormalities. A Double Contrast, or Air Contrast, is when the barium fills the colon but is then drained, only leaving a thin layer covering the inner lining of the colon. Air is then pumped into the colon making it easier to see the inner lining and smaller details of the colon i.e. pouches or strictures. I was having both Contrast test done to check the entire colon. In order to prep for it, you can only eat clear fluids (i.e. black tea or coffee, ginger ale, jello etc.) for a couple of days before the test and must take laxatives (liquid and pill form) and tap-water enemas. The colon must be as clean as possible in order to get accurate results. For me personally, the preps for these tests are far worse than the tests themselves. Not so for the double contrast barium enema, it hurts.
It was the morning of my test and I was in severe pain. It was radiating into my back and felt like my body was being squeezed all the way around in a vice. One of my nurses came in with an enema bag that looked like it could hold 3 bags of milk. I had already taken the liquid laxatives and this one was a warm, soapy tap water enema.
My pain was so bad at the time that the idea of holding that much water in my colon for as long as I could was just something that I couldn't do. She went and got me some pain medication, gave me 20 minutes for it to work and came back. I still wasn't happy to see her, but it had to be done.
The worst part of this test is when your colon gets filled with air and the radiologist presses down on your abdomen with a paddle in order to get the pictures just right. Finally my test was done and I was back in my bed.
I had the next day off but had another test the day after that. A CAT Scan. At that time Guelph didn't have a CAT Scan machine so I had to go to Waterloo to have it done. My Dad was going to take time off work to take me.
The morning we were to go I was so sick. I was vomiting, weak and in pain. I just felt horrible, but there was no way that it could be cancelled. It felt great though to be in a car again, it had been almost a month. We made jokes about not going there or back to the hospital, It was really great spending the time with my Dad. When I was first diagnosed and was in the hospital for months, he would bring his lunch, and come up to visit me during his lunch hour. It meant so much to me.
When we got to Waterloo I had no idea what to expect, it was my first CAT Scan. After we registered a nurse brought a glass a pitcher of liquid and told me that I had to drink it all. It tasted horrible and because of my nausea I vomited almost half of it back up. It was a horrible experience. I was having hot flashes, then the chills, I felt so sick that any other day it wouldn't have been so bad. Finally when my name was called my Dad and I got up, we were put into another room and I had to put on a gown. I passed him my clothes to be locked up and he helped to ANOTHER room. They told me that I need to have an i.v. put in for the second contrast material and they couldn't use my TPN for it. Well by the 11th attempt at getting one in I told them to get an anesthetist, because I wasn't going to be poked one more time! They even looked at the veins in my feet! That doctor showed up and bam, first shot he got it in, he was my hero!
They put me on the table, they went into their room behind the glass, and I yelled at them to stop. One of them ran in and asked me what was wrong and I told her that it felt like I wet my pants! She said she should have warned me about that, that it was just the dye going through my body into the blood vessels. Whew!
The other two came out of the little room and asked me when the last time I had a Barium Test was. I told them that it was two days ago, and they unhooked my i.v. and sent me back to Guelph. You can't have a CAT Scan within a week of having a barium test because the two different types of contrast work against each other. You have got to be kidding! Didn't anyone from Guelph General know that? I was so mad and my Dad had smoke coming out of his ears. When we got back I crawled into my hospital bed and he marched up to the nurse's station. I hope he gave them a piece of his mind because I had to go through all of it again the next week after all of the barium was out of my system.
The moral of this story is that no one knows everything. People are going to screw up, even doctors and nurses, and you might be the one that suffers, but you just have to take the blows and move on. When I did go and get the CAT Scan we found out that my gall bladder was three times too big and needed to be removed. They wouldn't have seen that when they did my re-section, so it's a good thing that I had that test.
Wednesday, February 15, 2012
Unlike the tube feeding, this type completely by-passes the gastrointestinal tract and is given by I.V.. It can be used for short term or long term.
The i.v. site needs to be changed regularly and my veins are so small that I had a central line put in that could stay in as long as I needed it. This is what the picture above shows. The i.v. is put into the vena cava and the nutrients are absorbed through the blood.
My doctor gave me some meds to make me drowsy when he inserted it, and then to make sure it was placed properly they took an x-ray.
People can have these in as out-patients, however a home nurse has to come often to check for complications. I have been in hospital and out with this type of feeding.
Complications can be fatal, but these occurrences are rare. Some complications are infections of the i.v. catheter, blood clots and gall bladder problems.
Personally I prefer this type of feeding. It is painless and there is no tube shoved in my nose.
My next post will be about preparing for my first bowel surgery.