I have been waiting to post this and now feel comfortable to share my experience.
Almost 2 years ago, just turned 60, I started passing blood. I remember this day. The night of my last solid poop was odd. I was a solid with nothing to wipe poop. I was thinking how odd this was but accepted it as cool.
The next day I passed blood and diarrhea as loose as any I had ever had. At first I thought it was food poisoning as I have been known to eat some spoiled food from time to time. I still think that this could have been the start of this process. I had also been in the habit of eating spicy foods, the hotter the better. I now believe that pickled jalapenos, not the fresh but the typical ones in a jar or can, substantially contributed to this condition. I would eat them with just about
everything, all the while joking that I was going to eat spicy until I could no more. Some joke.
The bleeding continued for 5 months before I called a gastroenterologist. Denial yes, I am a guy and not very bright sometimes. I was scheduled for an appointment 1 month out. I will not go into my rant about
doctors at this time but, buyers beware.
During this time Christmas came. I was at church the weekend of Christmas feeling crummy. I went home and slept for 23 hours. I then woke up with a 103° fever. Got up to 105° twice during the week for short periods of time, remember I am not too smart. My normal doctor, over the phone, and my wife tried to convince me to go to the hospital. Me tough, me smart...me very dumb. My fever finally broke the end of the week. I was still feeling crappy, no pun intended but still flowing blood and decided to break down and go to my normal doctor.
I was tested and found to have a blood sugar of 600+. They checked me into the hospital. For those not hip to diabetes this is very high blood sugar. They immediately read me the riot act. I had and have taken this to heart changed my diet and lost over 80 lbs. I was at 310 and went down to 230.....back to this in a moment.
While in the hospital they gave me the choice of having a colonoscopy done there or I could wait and have it done as an outpatient. This was asked of me by a doctor. I am not very bright but let's see; I am in the hospital, blood with every trip to the bathroom, very little control, like none, let me see "do I wait?" I ask myself. Of course let's do this now as I am here, duh. Let me say I could go on for many more words with the poor performance of the doctors I ran across on this journey, except for my personal physician.
Colonoscopy gets done. I was told they were using the Michael Jackson drug, propofol. Wow, no wonder he had no problem sleeping.
Verdict is in Ulcerative Colitis, nasty, nasty disease. They immediately put me on Asacol. I got some noticeable relief but still the diarrhea. The bleeding subsided to mild bleeding for a few days.
The next 8 months I lost a lot of weight. My diet was helping but the UC was kicking my butt, again NPI (no pun intended). Within a month I had gotten off all the diabetes medicine and have since controlled it with diet.
I looked at and continue to look at this as a gift from God. I had said for years that I was going to eat better and exercise. Well God was just there putting His arm around me to help encourage me to do this. I could have gone on unaware of the diabetes and have it totally destroy my body, thus in my mind I was blessed with this knowledge.
The UC continued to get worse. One of the first things they were hitting me with at the hospital is "are you stressed?" I told them I did not think so. I have pressure at work but do not take it home with me, thus in my mind just normal stuff. The medical world likes to guess at things they do not understand and the mind is the ever nebulous place to go for the unexplained. Remember when allergies were all "in the head"?
As I continued to get worse, at least 20 trips to the bathroom every day, the drug regime would change. The Asacol did not seem to be helping anymore and I was put on Lialda. I was also given enemas to take every couple of days, essentially a rectal form of Asacol. Whenever the drugs were changed there would be a few days of seemingly better experience, maybe only 12 times to the bathroom. Things deteriorated pretty fast by summer. In September I was put on Prednisone, a very nasty drug. I would go to the office and have to lie down after 1/2 hour and do my work laying down unless of course I was running to the bathroom. I was weak, tired and drained. After a few accidents it didn’t take too much for me to recognize that once I thought or felt about
going I better be heading to the bathroom as there was no control, at all period.
I was getting frustrated and evaluating what option was left: Remicade or cutting the colon out. Going only 6 times a day was sounding more and more appealing.
I opted for the Remicade as a last resort. Now remember I am not very bright. Before I go any further let me stress the importance of prayer. I never once blamed God for this or even alluded to asking Him why me? I am a sinner falling far short and deserve no special grace. I did though have many people praying for me.
I decided about
one month before doing the Remicade that I would go see a homeopath just to get one more opinion. Praise to the Lord for this insight. A friend at church recommended a Dr. Samuel Benjamin of Scottsdale, AZ. He is homeopath and an MD. He is all about
alternative medicine, acupuncture, herbs etc.
He takes me in immediately. I tell him what is going on. He gives me a sheet to read, immediately, and tells me to read it right there because "what I am going to tell you sounds like snake oil". I read this information about
a drug called Naltrexone.
Two weeks before this I went to a health food store and bought Aloe Vera juice and started drinking some every day. Prior to this I had started weaning myself off of the Prednisone. A nurse friend told me to take a drug called Sam E that this would help my kidneys or liver adapt to the loss of Prednisone in my diet.
The gastroenterologist that I ended up with was a good man. He was caring, honest and as knowledgeable as the normal medical world allowed and
open to trying diets etc. but he was also at a loss as to what my options were. He was straight forward about
the options at this point: surgery or Remicade.
You can find information about
Naltrexone on line. Dr. Benjamin also got me on probiotics. Someone else had mentioned Kefir so I also started taking that. I was starting to feel better but what was it that was working. Still bleeding and having urgencies. Dr Benjamin told me it would take about
1 month to see results. Started with 1 mg per day and then it was eventually increased to 2mg.
I had mentioned to a nurse, while waiting for the gastroenterologist, that I had started taking aloe juice and was seeing some positive results. She said that, yes people would see some good results with the aloe but it would get worse again in about
3 weeks. I thought about
this and decided to not take these things every day (took them every day for 2 weeks initially). I believed that mixing things up might help my body to not get acclimated to them too quickly. The only things I kept taking daily were the probiotics and the Naltrexone.
The prayer continued. The Wednesday of Thanksgiving week the bleeding stopped!!!! Praise God!!!!!
I had bled continuously for about
1 year and 1/2. Right before this I had also decided to cut out of my diet fresh lettuce, fresh vegetables, SPINACH, etc. I started putting on a little weight but decided the bleeding was more important to stop.
The tough thing was: what was the thing that was working? While I was taking and trying so many things there is a cloud over the whole experience. Number 1 is God. A woman came up to me that I know at church during this time who was familiar with what I had been going through. She told me she was praying specifically for my illness. Gross yes but to the point.
That Friday I was scheduled for the Remicade. Remember me dumb. Since I was scheduled for it I went ahead and took the treatment, even though the bleeding had stopped. I had gone to the same place where chemo is given. I sat right next to a gal who was taking a chemo treatment. Probably should have not done the treatment. After this I decided to not take any more, why should I as I was getting better. I also found out that once you started these treatments they had to be continued at $4,000 a pop. This treatment also lowers the immunity system making one susceptible to other diseases.
After Christmas I stopped taking the Asacol. I had previously switched back as I thought it more effective than the Lialda. I had previously stopped the enemas in October as they did not seem to be helping at all, except the first few days originally. By the end of January I started backing off of the probiotics kefir and aloe.
I am now taking only the Naltrexone every night. Probiotics a couple of times a week. Aloe twice a week, only about
2 shot glasses worth. I have put on about
30 lbs. and will be trying salads again in another week....and of course continuing in prayer.
I only have to go once or twice a day now, what would have been “normal” for me before all of this started.
My stools started getting snaky in December, loose but snaky. They have gotten progressively thicker from pinkie thick to thumb and 1/2"-1" thick as of today. I had bleeding one time over 1 month ago, right after I had eaten some spinach. I was not sure whether it was the spinach or hemorrhoids. I am hoping it was the hemorrhoids as I am going to delve into the salad thing again.
Anyway I thought it was time to share all of this as when I first got diagnosed with Ulcerative Colitis I got on some web sites to see what peoples' experiences were and am now returning the sharing.
I hope this has helped. Sorry for the long wind but I think the whole experience is necessary. If you have this condition I pray that you will find relief. If you do not get physical relief then have comfort in the fact that we have a Savior. He is the only one ever to die for or sins. No other is like Him in all of history, and there is undeniable history of His existence. God allows us to be here because He loves us and is giving us each one more day to draw close to Him. Know that life is short and eternity is long. Struggles help to build our character and strengthen us. I know this may sound odd and trite to some but if you do not understand then seek a pastor, priest or minister for some help. There is always peace in the Lord, a peace that we cannot find by ourselves. Everything we have is a gift from God. Good things happen to bad people and bad things happen to good people and vice versa. If we keep our eyes on the goal then our struggles will seem smaller.
PS: As a footnote I had stopped eating other foods along the way: peanuts, popcorn, salsa, spicy foods, and dairy. I have now eaten peanuts, popcorn and some salsa (mild) all with no problems. Dairy gives me gas plus for the diet it is not so good so I am still doing very little of it.
Post Edited (colgone1) : 6/15/2011 8:49:00 AM (GMT-6)