The year of medical hell

This past year has been a medical nightmare.  Fortunately there is a light at the end of the tunnel, but I still have a ways to go.

since December I have been incapitaded and can't leave my house without some one helping me.  I have joked about knowing how people on house arrest feel.  I just don't have the pretty bracelets to complete the outfit.

It actually all started 10 years ago, although at the time I was totally unaware of what was happening.  I started having diarrhea every time I ate.  For 10 years I went through all kinds of test, numerous times, was put on a whole list of medications that never helped.  The different doctors diagnosed me with Irritable Bowl Disease, Colitus, Crohn's.  Every doctor had a diagnoses but nothing they did ever helped.  Ultimately the doctors never found the real problem.  I did.  I have always believed in following you gut feelings and your knowledge about your own body.  I am even more adament about it now.  But I'm getting ahead of myself here.

I knew, last fall, that I was getting weaker and less stable when I was walking, but I do have MS.  I have been told for years that I have been very lucky because the disease had not progressed much.  My initial diagnoses was in 1991.  I don't take any of the regular MS drugs because I fall into a small percentage of people that the drugs made the MS symptoms worse.  I take a couple of medications to deal with a couple of symptoms such as frequent bladder infections, but nothing big.  When I noticed that I was having problems, I assumed the MS was finally taking it's tole on my body and didn't do anything because I figured nothing could be done. In the meantime I started seeing a new Gastroenterologist for the diarrhea issue.  She came on very strong and looking back I think she has a "savior" complex.  I had just been to Idaho for a family Christmas gathering.  The doctor said she was surprised I was able to drive there.  I told her that should give her some idea how much I wanted to be there.  My father passed a couple of years before and since then all of the kids have worked on building relationships we had never really built before.  My mother had been gone for many years.

The doctor said my body was not absorbing the nutrients it needed and wanted to put in a TPN line that would allow her to give me nutrients through the blood stream and bypass the digestive system all together.  She listed off a whole bunch of possible complications which included blood clots and infections.  I get infections very easily so I was really resistant to this treatment.  It just didn't feel right.  In the meantime, she put me on Prednisone at 40 mg and wrote in my chart everything she was going to do.  Problem is, she never did any of it.  And every doctor I saw after that would read her notes and not believe me when I would tell them nothing was done that was in the chart.  I spent months fighting with doctors trying to find one that would believe me.  I had one doctor that asked me why I was playing doctor.  My response to him was that no one else was playing doctor and I thought someone should.

on January 12th I ended up in the ER because my potassium level had dropped way to low.  For whatever reason, they gave me potassium orally instead of by IV.  When they Dave it to me they said it would take about 30 minutes and then I would feel better.  Exactly 30 minutes later I was fine.  When I left the hospital I knew they were wrong in saying that my body couldn't absorb nutrients.  I had just had it proven to me that it could.

I started doing some searching online and found that I had many of the same symptoms of something called"Dumping Syndrome".  I asked the various doctors if this could be what I had and they would all tell me no, the symptoms were totally different, but no one could tell me how they were different.  They kept telling me it was impossible for me to have dumping syndrome because I had never had gastric bypass surgery, which was true, but I had an unrelated surgery two years prior where they had to remove half of my right colon and that doctor told me that the way they had done a hiatal hernia repair a number of years before, it was like I had had a gastric bypass surgery.  It was after this surgery that I started having the diarrhea but I had never connected the two before.  I was now pretty sure what I had, but I didn't know the consequences of it.  In the meantime, the various doctors kept me on Prednisone on doses that ranged from 40 to 80 mg.

I talked to my internist about the possibility of the dumping syndrome.  I tried a dumping syndrome diet and proved that while I was on the diet, I had no diarrhea.  So I now knew for sure what I had, I just still didn't understand the consequences.  Besides the Prednisone, I had also been put on a drug called Uceris, which is an anti-inflammatory that only effects the intestines.  When my prescription for that ran out, I started having the diarrhea again.  My internist found a gastro doctor that dealt with dumping syndrome and sent me to see him.  He wrote me a new prescription for the Uceris, but he wanted me off of the Prednisone immediately.  By now I had been on the Prednisone for about 5 to 6 months.  He told me what the symptoms were if you were tapering too fast.  I was experiencing all of the symptoms, but he told me to ignore them and keep doing the taper he prescribed.  I called my neurologist to see if something I was being told made sense.  She told me all of my current problems were because they were trying to take me off of thr Prednisone too fast.  When you have been on Prednisone for a long time, you have to do a very slow taper so your body can get the signals that it needs to start producing it's own Prednisone.  I switched to having her handle my medical needs.  We started out at 50 mg a day, we are now at 22.5 mg reducing only 2.5 mg per week.  So I still have a ways to go before I am totally off the Prednisone.  In the meantime I have had a blood clot in one leg (Prednisone thickens your blood) and I am currently dealing with both a MRSA infection and water retention (to the tune of about 50 pounds of water) so things continue to be interesting.  The expectation is that when all is said and done, I will have no permanent damage so it's just a matter of time.

The consequence of dumping syndrome that I didn't know about, it is called dumping syndrome because when something triggers it, your body immediately empties the bowels and you don't get any nutrition from what you have just eaten.  So for 10 years I had been unknowingly starving myself to death.  That is why I was so weak in December.  I have been in the hospital a couple of times during all of this.  Every time they have run different tests and keep coming back and telling me I'm healthy as a horse and they didn't understand why I was there.  This is part of what gives me the hope that eventually I will be healthy and whole again.