Hello Amy,
I really did not post much about why I had to have the surgery. My best guess as to what brought it all on is a bout of Pneumonia that I treated a while back. I thought I had eliminated it but I had this very slight nagging cough with a small amount of thick mucous. I had this for months, but did not think much of it.
Later on I developed pain in my back. I could not hardly push the mower around the yard one day, and I knew something was wrong, but did not know what.
The pain grandually got worse, and spread to my abdomen. I went to see the nurse practitioner who works with my Gastro and she thought it was a Crohn's flare up. I told her that I have had Crohn's flares before and it seemed to me there is something else going on here. She gave me some Lialda and later Prednisone and the Prednisone seemed to help. The Lialda never really helped a lot, but maybe a little bit.
I felt a little better but gradually backslid until I was no longer able to work because of the intense pain. I had narcotics but they only did so much.
Finally I am getting extremely ill, and I am also self treating in an attempt to find out what the heck is slowly killing me. I read about a case of Mycoplasma Pneumonia that started in the lungs and progressed into the intestines that another doctor had posted on the internet. By this time my Pnuemonia was back into my lungs, full force, many months later.
Bells went off in my head and I used one of my experimental treatments to target the Mycoplasma Pneumonia bacteria specifically. I immediatly had a high fever and was so sick I thought I might not make it to the next day. I knew I had figured out part of the mystery.
I went to my local Physician assistant and told him I had reason to believe that Mycoplasma Pneumonia had invaded my intestinal tract and that was causing me problems. I also had to tell him why I thought this to be the case. Well, he says he only practices Western Medicine and can't really base a diagnosis off of my evidence.
Fair enough, but he said let me listen to your lungs. He did and he said they sounded terrible. He said you need something to clear that up. I agreed and said as long as you are going to give me an antibiotic, can you give me one that also targets Mycoplasma Pneumonia. Since the Pneumonia is likely caused by that pathogen anyway, he agreed to that.
A few days of Zithromax and I improved enough to go back to work for about four weeks. Still not 100% by any means but the pain was greatly reduced. I gradually got worse and worse. Off of work again.
I go back to another doctor as my nurse Physician Assistant is not available. I get another prescription for Zithromax given my quick recovery last time, but this time it does not have any effect.
I have more tests, CT scans and still nobody can figure this thing out. I tell my nurse practioner that I need to see a infectious disease doctor. I reinterated that this is more than Crohn's and I can't go much longer like this. I am down to 140 some lbs from my normal of 200 lbs.
She said she can't do this for some dumb reason and we leave. But at my request they do test me for a bladder infection, because now I am having weird stuff going on there also. It comes back negative. I go to my local clinic and see a doctor I have not seen before. I need to get answers quick. I really do feel like I do not have much time left and the pain is utterly unbearable. She does another bladder infection test and it comes back positive. I am put on a drug for that. It does not make me feel any better.
Then she reffered me to the internal medicine specialist. By now I have brown stuff coming out of my urine and air. My belly has a bulge the size of a softball and the pain is worse than anything I have ever felt in my life. And I have been around a while and had a bit of experience with pain of all sorts.
In five minutes he tells me, you have a fistula from your bowel to your bladder and possibly more. He says you also have a massive infection in your abdoman that needs treatment right away.
I am floored. I never have seem this guy before and he in no uncertain terms tells me this. He is not guessing, he is sure of this. I am a bit skeptical that in five minutes he has diagnosed this and no one else has even come close. But, it is obvious I have to do something, and he is an older doctor with some experience so I say OK, lets get going on this. I am going to die anyway, I am fairly well convinced of this by now, and almost wish I would with the unbearable pain and misery.
They put me under the CT scan and guide a sharp hollow pointed object into the infected area to drain it. I am awake and the pain from this is something I hope no one ever has to go through. Stuff start coming out immediatley and the pain is reduced quite a bit over the next couple of days.
I am also septic by this time, which to me means near death, although with treatment I have been told that most people will recover. Heavy duty antibiotics are going into me 24 hours a day. I get to feeling better than I have, but still losing weight fast.
I get transferred to the larger hospital where my gastro is located. Our small local hospital is not set up for my further treatment of this problem.
They say they can try to clear this up with strictly antibiotics, but it may not work, or surgery. I opt for the surgery, as I am not that darn lucky and I know this is more serious than maybe even they do.
There is only one surgeon that will do this operation due to the heavy infection. I did not know this until later, but that is how complicated this was. Otherwise I would have had to go to the Mayo Clinic.
Seven hours later he removed two fistulas, one infected the soaz mucle in my back and another had joined my bladder to my bowel.
I knew beforehand he was going to give me the bag. I did not like it, but it didn't matter as he cannot reconnect an inflammed bowel without the risk of a leak, and I quite honestly could not survive another infection.
I came out of the surgery OK, but my right arm was paralyzed. It had been in one position too long and this can happen on rare occasions. Like I said, I am not usually lucky. This made life tough as you all know your arms get a workout when the gut has stitches in it. I had one arm to work with. This gradually went away, but it took weeks to get back to normal.
I had to be on intervenous antibiotics for several weeks, both in the hospital and at home.
Ever since I have gradually been improving, and now enough to get rid of the bag.
I believe that the Fistulas were caused by the Mycoplasma Pnuemoonia infection, but I cannot know that with 100% certainty.
All I know for sure is my Crohn's was well under control using LDN and all of a sudden I was sick. So it is possible the LDN did not work also, but the suddeness of the whole thing makes me think it would have happened regardless, unless I would have completely eliminated the original Pnuemonia to begin with.
But, not knowing for certain, I am now going to be on Imuran for the time being. I don't like it, but it is not as revolting as the other biologics that are the other alternative.
That is the short version, and from the length of this post, you can see why I have not said a lot about it.
So how have you been doing lately?
Be well, and prosper.
Dan
